Medicine Pediatrics, Perinatology and Child Health

Childhood Cancer Survivors' Quality of Life

Description

This cluster of papers focuses on pediatric cancer, survivorship, and the assessment of health-related quality of life in children and adolescents. It includes research on the Pediatric Quality of Life Inventory, the Childhood Cancer Survivor Study, pediatric palliative care, psychosocial outcomes, and long-term effects on survivors. The papers also cover topics such as parent-proxy reports, posttraumatic stress symptoms, and neurocognitive outcomes in pediatric cancer patients.

Keywords

Pediatric Quality of Life Inventory; Childhood Cancer Survivor Study; Health-related Quality of Life; Pediatric Palliative Care; Adolescent and Young Adult Oncology; Psychosocial Outcomes; Long-term Survivors; Parent-proxy Reports; Posttraumatic Stress Symptoms; Neurocognitive Outcomes

Abstract BACKGROUND The Pediatric Quality of Life Inventory (PedsQL) is a modular instrument designed to measure health‐related quality of life (HRQOL) in children and adolescents ages 2–18 years. The PedsQL … Abstract BACKGROUND The Pediatric Quality of Life Inventory (PedsQL) is a modular instrument designed to measure health‐related quality of life (HRQOL) in children and adolescents ages 2–18 years. The PedsQL 4.0 Generic Core Scales are multidimensional child self‐report and parent proxy‐report scales developed as the generic core measure to be integrated with the PedsQL disease specific modules. The PedsQL Multidimensional Fatigue Scale was designed to measure fatigue in pediatric patients. The PedsQL 3.0 Cancer Module was designed to measure pediatric cancer specific HRQOL. METHODS The PedsQL Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module were administered to 339 families (220 child self‐reports; 337 parent proxy‐reports). RESULTS Internal consistency reliability for the PedsQL Generic Core Total Scale Score (α = 0.88 child, 0.93 parent report), Multidimensional Fatigue Total Scale Score (α = 0.89 child, 0.92 parent report) and most Cancer Module Scales (average α = 0.72 child, 0.87 parent report) demonstrated reliability acceptable for group comparisons. Validity was demonstrated using the known‐groups method. The PedsQL distinguished between healthy children and children with cancer as a group, and among children on‐treatment versus off‐treatment. The validity of the PedsQL Multidimensional Fatigue Scale was further demonstrated through hypothesized intercorrelations with dimensions of generic and cancer specific HRQOL. CONCLUSIONS The results demonstrate the reliability and validity of the PedsQL Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module in pediatric cancer. The PedsQL may be utilized as an outcome measure in clinical trials, research, and clinical practice. Cancer 2002;94:2090–106. © 2002 American Cancer Society. DOI 10.1002/cncr.10427
Abstract In this article, the American Cancer Society provides estimates of the number of new cancer cases and deaths for children and adolescents in the United States and summarizes the … Abstract In this article, the American Cancer Society provides estimates of the number of new cancer cases and deaths for children and adolescents in the United States and summarizes the most recent and comprehensive data on cancer incidence, mortality, and survival from the National Cancer Institute, the Centers for Disease Control and Prevention, and the North American Association of Central Cancer Registries (which are reported in detail for the first time here and include high‐quality data from 45 states and the District of Columbia, covering 90% of the US population). In 2014, an estimated 15,780 new cases of cancer will be diagnosed and 1960 deaths from cancer will occur among children and adolescents aged birth to 19 years. The annual incidence rate of cancer in children and adolescents is 186.6 per 1 million children aged birth to 19 years. Approximately 1 in 285 children will be diagnosed with cancer before age 20 years, and approximately 1 in 530 young adults between the ages of 20 and 39 years is a childhood cancer survivor. It is therefore likely that most pediatric and primary care practices will be involved in the diagnosis, treatment, and follow‐up of young patients and survivors. In addition to cancer statistics, this article will provide an overview of risk factors, symptoms, treatment, and long‐term and late effects for common pediatric cancers. CA Cancer J Clin 2014;64:83–103. © 2014 American Cancer Society.
Part I: Professional Issues. Aylward, Bender, Graves, Roberts, Historical Developments and Trends in Pediatric Psychology. Rae, Brunnquell, Sullivan, Ethical and Legal Issues in Pediatric Psychology. Buckloh, Greco, Professional Development, Roles, … Part I: Professional Issues. Aylward, Bender, Graves, Roberts, Historical Developments and Trends in Pediatric Psychology. Rae, Brunnquell, Sullivan, Ethical and Legal Issues in Pediatric Psychology. Buckloh, Greco, Professional Development, Roles, and Practice Patterns. Holmbeck, Zebracki, McGoron, Research Design and Statistical Applications. Tynan, Stehl, Pendley, Health Insurance and Pediatric Psychology Services. Part II: Cross-cutting Issues. Clay, Culture and Diversity Issues in Research and Practice. Nelson, Steele, Evidence-Based Practice in Pediatric Psychology. Carter, Kronenberger, Scott, Ernst, Inpatient Pediatric Consultation-liaison. Greca, Mackey, Adherence to Pediatric Treatment Regimens. Dahlquist, Nagel, Chronic and Recurrent Pain. Blount, Zempsky, Jaaniste, Evans, Cohen, Devine, Zeltzer, Management of Pediatric Pain and Distress Due to Medical Procedures. Brown, Daly, Carpenter, Cohen, Pediatric Pharmacology and Psychopharmacology. Kazak, Schneider, Kassam-Adams, Pediatric Medical Traumatic Stress. Gerhardt, Baughcum, Young-Saleme, Vannatta, Palliative Care, End of Life, and Bereavement. Palermo, Wilson, eHealth Applications in Pediatric Psychology. Part III: Medical, Developmental, Behavioral, and Cognitive-Affective Conditions. Aylward, Neonatology, Prematurity, and Developmental Issues. McQuaid, Abramson, Pediatric Asthma. Quittner, Barker, Marciel, Grimley, Cystic Fibrosis: A Model for Drug Discovery and Patient Care. Wysocki, Buckloh, Greco, The Psychological Context of Diabetes Mellitus in Youths. Lemanek, Ranalli, Sickle Cell Disease. Vannatta, Salley, Gerhardt, Pediatric Oncology: Progress and Future Challenges. Wade, Walz, Bosques, Pediatric Traumatic Brain Injury and Spinal Cord Injury. Deidrick, Grissom, Farmer, Central Nervous System Disorders: Epilepsy and Spina Bifida as Exemplars. Rapoff, Lindsley, Karlson, Medical and Psychosocial Aspects of Juvenile Rheumatoid Arthritis. Delamater, Jent, Cardiovascular Disease. Rodrigue, Zelikovsky, Pediatric Organ Transplantation. Banez, Cunningham, Abdominal Pain-related Gastrointestinal Disorders: Irritable Bowel Syndrome and Inflammatory Bowel Disease. Tarnowski, Brown, Pediatric Burns. Silverman, Tarbell, Feeding and Vomiting Problems in Pediatric Populations. Jelalian, Hart, Pediatric Obesity. Doyle, le Grange, Eating Disorders. Campbell, Cox, Borowitz, Elimination Disorders: Enuresis and Encopresis. Meltzer, Mindell, Pediatric Sleep. Campbell, Segall, Dommestrup, Autism Spectrum Disorders and Developmental Disabilities. VanScoyoc, Christophersen, Behavior Problems in a Pediatric Context. Daly, Cohen, Carpenter, Brown, Attention-Deficit/Hyperactivity Disorder in the Pediatric Context. Gillaspy, Bonner, Child Maltreatment. Part IV: Public Health Issues. Fuemmeler, Moriarty, Brown, Racial and Ethnic Health Disparities and Access to Care. Kirschman, Mayes, Perciful, Prevention of Unintentional Injury in Children and Adolescents. Wilson, Lawman, Health Promotion in Children and Adolescents: An Integration of the Biopsychosocial Model and Ecological Approaches to Behavior Change. Short, Rosenthal, Sturm, Zimet, Enhancing Adoption of Preventive Behaviors: Vaccination as an Example. Stancin, Perrin, Ramirez, Pediatric Psychology and Primary Care. Part V: Systems. Steele, Aylward, An Overview of Systems in Pediatric Psychology Research and Practice. Kazak, Rourke, Navsaria, Families and Other Systems in Pediatric Psychology. Reiter-Purtill, Waller, Noll, Empirical and Theoretical Perspectives on the Peer Relationships of Children with Chronic Conditions. DuPaul, Power, Shapiro, Schools and Integration/Reintegration into Schools. Seid, Opipari-Arrigan, Sobo, Families' Interactions with the Health Care System: Implications for Pediatric Psychology. Part VI: Emerging Issues. Tercyak, Genetics and Genetic Testing. South, Wolf, Herlihy, Translating Clinical Child Neuroscience to Practice: New Directions. Roy, Wu, Roberts, Allergic Reactions in Children: Implications for Pediatric Psychology. Barakat, Pulgaron, Daniel, Positive Psychology in Pediatric Psychology. Armstrong, Individual and Organizational Collaborations: A Roadmap for Effective Advocacy.
Principles and practice of pediatric oncology , Principles and practice of pediatric oncology , کتابخانه دیجیتال جندی شاپور اهواز Principles and practice of pediatric oncology , Principles and practice of pediatric oncology , کتابخانه دیجیتال جندی شاپور اهواز
PURPOSE: Survivors of childhood and adolescent cancer are at risk for long-term effects of disease and treatment. The Childhood Cancer Survivor Study assessed overall and cause-specific mortality in a retrospective … PURPOSE: Survivors of childhood and adolescent cancer are at risk for long-term effects of disease and treatment. The Childhood Cancer Survivor Study assessed overall and cause-specific mortality in a retrospective cohort of 20,227 5-year survivors. PATIENTS AND METHODS: Eligible subjects were individuals diagnosed with cancer (from 1970 to 1986) before the age of 21 who had survived 5 years from diagnosis. Underlying cause of death was obtained from death certificates and other sources and coded and categorized as recurrent disease, sequelae of cancer treatment, or non–cancer-related. Age and sex standardized mortality ratios (SMRs) were calculated using United States population mortality data. RESULTS: The cohort, including 208,947 person-years of follow-up, demonstrated a 10.8-fold excess in overall mortality (95% confidence interval, 10.3 to 11.3). Risk of death was statistically significantly higher in females (SMR = 18.2), individuals diagnosed with cancer before the age of 5 years (SMR = 14.0), and those with an initial diagnosis of leukemia (SMR = 15.5) or CNS tumor (SMR = 15.7). Recurrence of the original cancer was the leading cause of death among 5-year survivors, accounting for 67% of deaths. Statistically significant excess mortality rates were seen due to subsequent malignancies (SMR = 19.4), along with cardiac (SMR = 8.2), pulmonary (SMR = 9.2), and other causes (SMR = 3.3). Treatment-related associations were present for subsequent cancer mortality (radiation, alkylating agents, epipodophyllotoxins), cardiac mortality (chest irradiation, bleomycin), and other deaths (radiation, anthracyclines). No excess mortality was observed for external causes (SMR = 0.8). CONCLUSION: While recurrent disease remains a major contributor to late mortality in 5-year survivors of childhood cancer, significant excesses in mortality risk associated with treatment-related complications exist up to 25 years after the initial cancer diagnosis.
This study describes the development and reports the first psychometric results of the European KIDSCREEN-52 generic health-related quality-of-life questionnaire for children and adolescents. The KIDSCREEN-52, including ten dimensions, was applied … This study describes the development and reports the first psychometric results of the European KIDSCREEN-52 generic health-related quality-of-life questionnaire for children and adolescents. The KIDSCREEN-52, including ten dimensions, was applied in a European survey involving 12 countries (i.e., Austria, Switzerland, Czech Republic, Germany, Greece, Spain, France, Hungary, The Netherlands, Poland, Sweden and the UK) and 22,110 children and adolescents aged between 8 and 18 years of age. Questionnaire development included a literature search, expert consultation, and focus group discussions with children and adolescents. After definition of dimensions and collection of items, a translation process following international translation guidelines, cognitive interviews and a pilot test were performed. Analysis regarding psychometric properties showed Cronbach-alpha ranged from 0.77 to 0.89. Correlation coefficients between KINDL(R) and KIDSCREEN-52 dimensions were high for those assessing similar constructs (r = 0.51-0.68). All KIDSCREEN-52 dimensions showed a gradient according to socioeconomic status and most dimensions showed a gradient according to psychosomatic health complaints. The first results demonstrate that the KIDSCREEN-52 questionnaire is a promising cross-cultural measure of health-related quality-of-life assessment for children and adolescents in Europe.
The Childhood Cancer Survivor Study (CCSS) has assembled the largest cohort to date for assessment of late mortality. Vital status and cause of death of all patients eligible for participation … The Childhood Cancer Survivor Study (CCSS) has assembled the largest cohort to date for assessment of late mortality. Vital status and cause of death of all patients eligible for participation in CCSS was determined using the National Death Index and death certificates to characterize the mortality experience of 20,483 survivors, representing 337,334 person-years of observation. A total of 2,821 deaths have occurred as of December 31, 2002. The overall cumulative mortality is 18.1% (95% CI, 17.3 to 18.9) at 30 years from diagnosis. With time, while all-cause mortality rates have been stable, the pattern of late death is changing. Mortality attributable to recurrence or progression of primary disease is decreasing, with increases in rates of mortality attributable to subsequent neoplasms (standardized mortality ratios [SMR], 15.2; 95% CI, 13.9 to 16.6), cardiac death (SMR, 7.0; 95% CI, 5.9 to 8.2), and pulmonary death (SMR, 8.8; 95% CI, 6.8 to 11.2) largely due to treatment-related causes. In addition, the CCSS has identified specific treatment-related risk factors for late mortality. Radiotherapy (relative risk [RR], 2.9; 95% CI, 2.1 to 4.2), alkylating agents (RR, 2.2; 95% CI, 1.6 to 3.0), and epipodophyllotoxins (RR, 2.3; 95% CI, 1.2 to 4.5) increase the risk of death due to subsequent malignancy. Cardiac radiation exposure (RR, 3.3; 95% CI, 2.0 to 5.5) and high dose of anthracycline exposure (RR, 3.1; 95% CI, 1.6 to 5.8) are associated with late cardiac death. By continued longitudinal follow-up of the cohort and expansion of the cohort to include patients diagnosed between 1987 and 1999, the CCSS will remain a primary resource for assessment of late mortality of survivors of childhood cancers.
Adult survivors of childhood cancer are known to be at risk for treatment-related adverse health outcomes. A large population of survivors has not been evaluated using a comprehensive systematic clinical … Adult survivors of childhood cancer are known to be at risk for treatment-related adverse health outcomes. A large population of survivors has not been evaluated using a comprehensive systematic clinical assessment to determine the prevalence of chronic health conditions.To determine the prevalence of adverse health outcomes and the proportion associated with treatment-related exposures in a large cohort of adult survivors of childhood cancer.Presence of health outcomes was ascertained using systematic exposure-based medical assessments among 1713 adult (median age, 32 [range, 18-60] years) survivors of childhood cancer (median time from diagnosis, 25 [range, 10-47] years) enrolled in the St Jude Lifetime Cohort Study since October 1, 2007, and undergoing follow-up through October 31, 2012.Age-specific cumulative prevalence of adverse outcomes by organ system.Using clinical criteria, the crude prevalence of adverse health outcomes was highest for pulmonary (abnormal pulmonary function, 65.2% [95% CI, 60.4%-69.8%]), auditory (hearing loss, 62.1% [95% CI, 55.8%-68.2%]), endocrine or reproductive (any endocrine condition, such as hypothalamic-pituitary axis disorders and male germ cell dysfunction, 62.0% [95% CI, 59.5%-64.6%]), cardiac (any cardiac condition, such as heart valve disorders, 56.4% [95% CI, 53.5%-59.2%]), and neurocognitive (neurocognitive impairment, 48.0% [95% CI, 44.9%-51.0%]) function, whereas abnormalities involving hepatic (liver dysfunction, 13.0% [95% CI, 10.8%-15.3%]), skeletal (osteoporosis, 9.6% [95% CI, 8.0%-11.5%]), renal (kidney dysfunction, 5.0% [95% CI, 4.0%-6.3%]), and hematopoietic (abnormal blood cell counts, 3.0% [95% CI, 2.1%-3.9%]) function were less common. Among survivors at risk for adverse outcomes following specific cancer treatment modalities, the estimated cumulative prevalence at age 50 years was 21.6% (95% CI, 19.3%-23.9%) for cardiomyopathy, 83.5% (95% CI, 80.2%-86.8%) for heart valve disorder, 81.3% (95% CI, 77.6%-85.0%) for pulmonary dysfunction, 76.8% (95% CI, 73.6%-80.0%) for pituitary dysfunction, 86.5% (95% CI, 82.3%-90.7%) for hearing loss, 31.9% (95% CI, 28.0%-35.8%) for primary ovarian failure, 31.1% (95% CI, 27.3%-34.9%) for Leydig cell failure, and 40.9% (95% CI, 32.0%-49.8%) for breast cancer. At age 45 years, the estimated cumulative prevalence of any chronic health condition was 95.5% (95% CI, 94.8%-98.6%) and 80.5% (95% CI, 73.0%-86.6%) for a serious/disabling or life-threatening chronic condition.Among adult survivors of childhood cancer, the prevalence of adverse health outcomes was high, and a systematic risk-based medical assessment identified a substantial number of previously undiagnosed problems that are more prevalent in an older population. These findings underscore the importance of ongoing health monitoring for adults who survive childhood cancer.
Only a few small studies have assessed the long-term morbidity that follows the treatment of childhood cancer. We determined the incidence and severity of chronic health conditions in adult survivors. … Only a few small studies have assessed the long-term morbidity that follows the treatment of childhood cancer. We determined the incidence and severity of chronic health conditions in adult survivors. The Childhood Cancer Survivor Study is a retrospective cohort study that tracks the health status of adults who received a diagnosis of childhood cancer between 1970 and 1986 and compares the results with those of siblings. We calculated the frequencies of chronic conditions in 10,397 survivors and 3034 siblings. A severity score (grades 1 through 4, ranging from mild to life-threatening or disabling) was assigned to each condition. Cox proportional-hazards models were used to estimate hazard ratios, reported as relative risks and 95% confidence intervals (CIs), for a chronic condition. Survivors and siblings had mean ages of 26.6 years (range, 18.0 to 48.0) and 29.2 years (range, 18.0 to 56.0), respectively, at the time of the study. Among 10,397 survivors, 62.3% had at least one chronic condition; 27.5% had a severe or life-threatening condition (grade 3 or 4). The adjusted relative risk of a chronic condition in a survivor, as compared with siblings, was 3.3 (95% CI, 3.0 to 3.5); for a severe or life-threatening condition, the risk was 8.2 (95% CI, 6.9 to 9.7). Among survivors, the cumulative incidence of a chronic health condition reached 73.4% (95% CI, 69.0 to 77.9) 30 years after the cancer diagnosis, with a cumulative incidence of 42.4% (95% CI, 33.7 to 51.2) for severe, disabling, or life-threatening conditions or death due to a chronic condition. Survivors of childhood cancer have a high rate of illness owing to chronic health conditions.
Cancer may be viewed as a psychosocial transition with the potential for positive and negative outcomes. This cross-sectional study (a) compared breast cancer (BC) survivors' (n = 70) self-reports of … Cancer may be viewed as a psychosocial transition with the potential for positive and negative outcomes. This cross-sectional study (a) compared breast cancer (BC) survivors' (n = 70) self-reports of depression, well-being, and posttraumatic growth with those of age- and education-matched healthy comparison women (n = 70) and (b) identified correlates of posttraumatic growth among BC survivors. Groups did not differ in depression or well-being, but the BC group showed a pattern of greater posttraumatic growth, particularly in relating to others, appreciation of life, and spiritual change. BC participants' posttraumatic growth was unrelated to distress or well-being but was positively associated with perceived life-threat, prior talking about breast cancer, income, and time since diagnosis. Research that has focused solely on detection of distress and its correlates may paint an incomplete and potentially misleading picture of adjustment to cancer.
The latest report from the Kauai Longitudinal Study addresses 2 fundamental questions of interest to pediatricians and health care professionals: 1) What are the long-term effects of adverse perinatal and … The latest report from the Kauai Longitudinal Study addresses 2 fundamental questions of interest to pediatricians and health care professionals: 1) What are the long-term effects of adverse perinatal and early child-rearing conditions on individuals’ physical, cognitive, and psychosocial development at midlife? 2) Which protective factors allow most individuals who are exposed to multiple childhood risk factors to make a successful adaptation in adulthood?1 The Kauai Longitudinal Study has monitored the impact of a wide array of biological, psychological, and social risk factors on the lives of a multiracial cohort of 698 individuals who were born in 1955 on the Hawaiian island of Kauai, from the perinatal … Reprint requests to (E.E.W.) Department of Human and Community Development, University of California, Davis, CA 95616. E-mail: eewerner{at}ucdavis.edu
Context One in 7 US children and adolescents is obese, yet little is known about their health-related quality of life (QOL). Objective To examine the health-related QOL of obese children … Context One in 7 US children and adolescents is obese, yet little is known about their health-related quality of life (QOL). Objective To examine the health-related QOL of obese children and adolescents compared with children and adolescents who are healthy or those diagnosed as having cancer. Design, Setting, and Participants Cross-sectional study of 106 children and adolescents (57 males) between the ages of 5 and 18 years (mean [SD], 12.1 [3] years), who had been referred to an academic children's hospital for evaluation of obesity between January and June 2002. Children and adolescents had a mean (SD) body mass index (BMI) of 34.7 (9.3) and BMI z score of 2.6 (0.5). Main Outcome Measures Child self-report and parent proxy report using a pediatric QOL inventory generic core scale (range, 0-100). The inventory was administered by an interviewer for children aged 5 through 7 years. Scores were compared with previously published scores for healthy children and adolescents and children and adolescents diagnosed as having cancer. Results Compared with healthy children and adolescents, obese children and adolescents reported significantly ( P <.001) lower health-related QOL in all domains (mean [SD] total score, 67 [16.3] for obese children and adolescents; 83 [14.8] for healthy children and adolescents). Obese children and adolescents were more likely to have impaired health-related QOL than healthy children and adolescents (odds ratio [OR], 5.5; 95% confidence interval [CI], 3.4-8.7) and were similar to children and adolescents diagnosed as having cancer (OR, 1.3; 95% CI, 0.8-2.3). Children and adolescents with obstructive sleep apnea reported a significantly lower health-related QOL total score (mean [SD], 53.8 [13.3]) than obese children and adolescents without obstructive sleep apnea (mean [SD], 67.9 [16.2]). For parent proxy report, the child or adolescent's BMI z score was significantly inversely correlated with total score ( r = −0.246; P = .01), physical functioning ( r = −0.263; P <.01), social functioning ( r = −0.347; P <.001), and psychosocial functioning ( r = −0.209; P = .03). Conclusions Severely obese children and adolescents have lower health-related QOL than children and adolescents who are healthy and similar QOL as those diagnosed as having cancer. Physicians, parents, and teachers need to be informed of the risk for impaired health-related QOL among obese children and adolescents to target interventions that could enhance health outcomes.
<b>Objectives </b>To assess the incidence of and risks for congestive heart failure, myocardial infarction, pericardial disease, and valvular abnormalities among adult survivors of childhood and adolescent cancers. <b>Design </b>Retrospective cohort … <b>Objectives </b>To assess the incidence of and risks for congestive heart failure, myocardial infarction, pericardial disease, and valvular abnormalities among adult survivors of childhood and adolescent cancers. <b>Design </b>Retrospective cohort study. <b>Setting </b>26 institutions that participated in the Childhood Cancer Survivor Study. <b>Participants </b>14 358 five year survivors of cancer diagnosed under the age of 21 with leukaemia, brain cancer, Hodgkin’s lymphoma, non-Hodgkin’s lymphoma, kidney cancer, neuroblastoma, soft tissue sarcoma, or bone cancer between 1970 and 1986. Comparison group included 3899 siblings of cancer survivors. <b>Main outcome measures </b>Participants or their parents (in participants aged less than 18 years) completed a questionnaire collecting information on demographic characteristics, height, weight, health habits, medical conditions, and surgical procedures occurring since diagnosis. The main outcome measures were the incidence of and risk factors for congestive heart failure, myocardial infarction, pericardial disease, and valvular abnormalities in survivors of cancer compared with siblings. <b>Results </b>Survivors of cancer were significantly more likely than siblings to report congestive heart failure (hazard ratio (HR) 5.9, 95% confidence interval 3.4 to 9.6; P&lt;0.001), myocardial infarction (HR 5.0, 95% CI 2.3 to 10.4; P&lt;0.001), pericardial disease (HR 6.3, 95% CI 3.3 to 11.9; P&lt;0.001), or valvular abnormalities (HR 4.8, 95% CI 3.0 to 7.6; P&lt;0.001). Exposure to 250 mg/m<sup>2</sup> or more of anthracyclines increased the relative hazard of congestive heart failure, pericardial disease, and valvular abnormalities by two to five times compared with survivors who had not been exposed to anthracyclines. Cardiac radiation exposure of 1500 centigray or more increased the relative hazard of congestive heart failure, myocardial infarction, pericardial disease, and valvular abnormalities by twofold to sixfold compared to non-irradiated survivors. The cumulative incidence of adverse cardiac outcomes in cancer survivors continued to increase up to 30 years after diagnosis. <b>Conclusion </b>Survivors of childhood and adolescent cancer are at substantial risk for cardiovascular disease. Healthcare professionals must be aware of these risks when caring for this growing population.
<b>Aims:</b> To describe the family background of street children in Aracaju, Brazil, their parents’ perception of street life, and the reasons for the high prevalence of males observed among street … <b>Aims:</b> To describe the family background of street children in Aracaju, Brazil, their parents’ perception of street life, and the reasons for the high prevalence of males observed among street children. <b>Methods:</b> Cross sectional study using semi-structured interviews and qualitative focus group discussions with parents of purposively selected index street children. <b>Results:</b> Fifty eight families were enrolled. Most participants were single parent, female headed families living in slums or low cost housing, with high levels of illiteracy, drug use, unemployment, and a history of migration. Most parents reported receiving financial support from their children and were aware of the dangers of the street. Many parents had lived in the street, worked from an early age, and had been adolescent parents themselves. Parents perceived that the street was more dangerous for girls than for boys. Besides economic reasons, parents highlighted the role of peers and drug use in pulling their children to the street. A total of 187 siblings were identified. Siblings had poor school performance with high school drop out rates. Twenty per cent of the adolescent girl siblings were not living at home. Gender determined the type of work undertaken by children and adolescents. Males worked in the streets and females worked as housemaids, shop assistants, and in restaurants and bars. <b>Conclusion:</b> Family disintegration, poverty, drug use, adolescent pregnancy, peer pressure, and socially constructed gender roles determine the characteristics of children in the street. There is an urgent need for increased social support in this area.
Adult survivors of childhood cancer are at risk for medical and psychosocial sequelae that may adversely affect their health status.To compare the health status of adult survivors of childhood cancer … Adult survivors of childhood cancer are at risk for medical and psychosocial sequelae that may adversely affect their health status.To compare the health status of adult survivors of childhood cancer and siblings and to identify factors associated with adverse outcomes.Health status was assessed in 9535 adult participants of the Childhood Cancer Survivor Study, a cohort of long-term survivors of childhood cancer who were diagnosed between 1970 and 1986. A randomly selected cohort of the survivors' siblings (n = 2916) served as a comparison group.Six health status domains were assessed: general health, mental health, functional status, activity limitations, cancer-related pain, and cancer-related anxiety/fears. The first 4 domains were assessed in the control group.Survivors were significantly more likely to report adverse general health (odds ratio [OR], 2.5; 95% confidence interval [CI], 2.1-3.0; P<.001), mental health (OR, 1.8; 95% CI, 1.6-2.1; P<.001), activity limitations (OR, 2.7; 95% CI, 2.3-3.3; P<.001), and functional impairment (OR, 5.2; 95% CI, 4.1-6.6; P<.001), compared with siblings. Forty-four percent of survivors reported at least 1 adversely affected health status domain. Sociodemographic factors associated with reporting at least 1 adverse health status domain included being female (OR, 1.4; 95% CI, 1.3-1.6; P<.001), lower level of educational attainment (OR, 2.0; 95% CI, 1.8-2.2; P<.001), and annual income less than 20 000 dollars (OR, 1.8; 95% CI, 1.6-2.1; P<.001). Relative to those survivors with childhood leukemia, an increased risk was observed for at least 1 adverse health status domain among those with bone tumors (OR, 2.1; 95% CI, 1.8-2.5; P<.001), central nervous system tumors (OR, 1.7; 95% CI, 1.5-2.0; P<.001), and sarcomas (OR, 1.2; 95% CI, 1.1-1.5; P =.01).Clinicians caring for adult survivors of childhood cancer should be aware of the substantial risk for adverse health status, especially among females, those with low educational attainment, and those with low household incomes.
Advances in biomedical science and technology have resulted in dramatic improvements in the healthcare of pediatric chronic conditions. With enhanced survival, health-related quality of life (HRQOL) issues have become more … Advances in biomedical science and technology have resulted in dramatic improvements in the healthcare of pediatric chronic conditions. With enhanced survival, health-related quality of life (HRQOL) issues have become more salient. The objectives of this study were to compare generic HRQOL across ten chronic disease clusters and 33 disease categories/severities from the perspectives of patients and parents. Comparisons were also benchmarked with healthy children data. The analyses were based on over 2,500 pediatric patients from 10 physician-diagnosed disease clusters and 33 disease categories/severities and over 9,500 healthy children utilizing the PedsQL™ 4.0 Generic Core Scales. Patients were recruited from general pediatric clinics, subspecialty clinics, and hospitals. Pediatric patients with diabetes, gastrointestinal conditions, cardiac conditions, asthma, obesity, end stage renal disease, psychiatric disorders, cancer, rheumatologic conditions, and cerebral palsy self-reported progressively more impaired overall HRQOL than healthy children, respectively, with medium to large effect sizes. Patients with cerebral palsy self-reported the most impaired HRQOL, while patients with diabetes self-reported the best HRQOL. Parent proxy-reports generally paralleled patient self-report, with several notable differences. The results demonstrate differential effects of pediatric chronic conditions on patient HRQOL across diseases clusters, categories, and severities utilizing the PedsQL™ 4.0 Generic Core Scales from the perspectives of pediatric patients and parents. The data contained within this study represents a larger and more diverse population of pediatric patients with chronic conditions than previously reported in the extant literature. The findings contribute important information on the differential effects of pediatric chronic conditions on generic HRQOL from the perspectives of children and parents utilizing the PedsQL™ 4.0 Generic Core Scales. These findings with the PedsQL™ have clinical implications for the healthcare services provided for children with chronic health conditions. Given the degree of reported impairment based on PedsQL™ scores across different pediatric chronic conditions, the need for more efficacious targeted treatments for those pediatric patients with more severely impaired HRQOL is clearly and urgently indicated.
The last decade has evidenced a dramatic increase in the development and utilization of pediatric health-related quality of life (HRQOL) measures in an effort to improve pediatric patient health and … The last decade has evidenced a dramatic increase in the development and utilization of pediatric health-related quality of life (HRQOL) measures in an effort to improve pediatric patient health and well-being and determine the value of healthcare services. The emerging paradigm shift toward patient-reported outcomes (PROs) in clinical trials has provided the opportunity to further emphasize the value and essential need for pediatric patient self-reported outcomes measurement. Data from the PedsQL DatabaseSM were utilized to test the hypothesis that children as young as 5 years of age can reliably and validly report their HRQOL.The sample analyzed represented child self-report age data on 8,591 children ages 5 to 16 years from the PedsQL 4.0 Generic Core Scales DatabaseSM. Participants were recruited from general pediatric clinics, subspecialty clinics, and hospitals in which children were being seen for well-child checks, mild acute illness, or chronic illness care (n = 2,603, 30.3%), and from a State Children's Health Insurance Program (SCHIP) in California (n = 5,988, 69.7%).Items on the PedsQL 4.0 Generic Core Scales had minimal missing responses for children as young as 5 years old, supporting feasibility. The majority of the child self-report scales across the age subgroups, including for children as young as 5 years, exceeded the minimum internal consistency reliability standard of 0.70 required for group comparisons, while the Total Scale Scores across the age subgroups approached or exceeded the reliability criterion of 0.90 recommended for analyzing individual patient scale scores. Construct validity was demonstrated utilizing the known groups approach. For each PedsQL scale and summary score, across age subgroups, including children as young as 5 years, healthy children demonstrated a statistically significant difference in HRQOL (better HRQOL) than children with a known chronic health condition, with most effect sizes in the medium to large effect size range.The results demonstrate that children as young as the 5 year old age subgroup can reliably and validly self-report their HRQOL when given the opportunity to do so with an age-appropriate instrument. These analyses are consistent with recent FDA guidelines which require instrument development and validation testing for children and adolescents within fairly narrow age groupings and which determine the lower age limit at which children can provide reliable and valid responses across age categories.
Part 1 - Principles of medicine . Good medical practice . Good prescribing . Molecular mechanisms of disease . Immunological factors in disease . Environmental and nutritional factors in disease … Part 1 - Principles of medicine . Good medical practice . Good prescribing . Molecular mechanisms of disease . Immunological factors in disease . Environmental and nutritional factors in disease . Principles of infectious disease . Ageing and disease Part 2 - Practice of medicine . Critical care and emergency medicine . Poisoning . Medical psychiatry . Oncology . Palliative care and pain management . Infectious diseases . Human immunodeficiency virus infection and the human acquired immunodeficiency syndrome . Sexually transmitted infections . Clinical biochemistry and metabolism . Kidney and urinary tract disease . Cardiovascular disease . Respiratory disease . Endocrine disease . Diabetes mellitus . Alimentary tract and pancreatic disease . Liver and biliary tract disease . Blood disorders . Musculoskeletal disorders . Neurological disease . Skin disease . Appendix
Described the development and validation of the Functional Disability Inventory (FDI) for school-age children and adolescents. Results provide support for construct, concurrent, and predictive validity. FDI scores also demonstrated stability … Described the development and validation of the Functional Disability Inventory (FDI) for school-age children and adolescents. Results provide support for construct, concurrent, and predictive validity. FDI scores also demonstrated stability over a 3-month period in patients with a chronic condition, and the instrument was sensitive to changes in patient status subsequent to medical treatment. There was some evidence that gender played a role in disability, particularly in adolescence. The instrument may be used (a) in studying individual differences in pediatric disability, (b) in examining the relation of disability to psychosocial functioning in the child and other family members, or (c) as an outcome measure in assessing the impact of interventions on patient functioning.
The Central Brain Tumor Registry of the United States (CBTRUS), in collaboration with the Centers for Disease Control (CDC) and National Cancer Institute (NCI), is the largest population-based registry focused … The Central Brain Tumor Registry of the United States (CBTRUS), in collaboration with the Centers for Disease Control (CDC) and National Cancer Institute (NCI), is the largest population-based registry focused exclusively on primary brain and other central nervous system (CNS) tumors in the United States (US) and represents the entire US population. This report contains the most up-to-date population-based data on primary brain tumors (malignant and non-malignant) and supersedes all previous CBTRUS reports in terms of completeness and accuracy. All rates (incidence and mortality) are age-adjusted using the 2000 US standard population and presented per 100,000 population. The average annual age-adjusted incidence rate (AAAIR) of all malignant and non-malignant brain and other CNS tumors was 23.79 (Malignant AAAIR=7.08, non-Malignant AAAIR=16.71). This rate was higher in females compared to males (26.31 versus 21.09), Blacks compared to Whites (23.88 versus 23.83), and non-Hispanics compared to Hispanics (24.23 versus 21.48). The most commonly occurring malignant brain and other CNS tumor was glioblastoma (14.5% of all tumors), and the most common non-malignant tumor was meningioma (38.3% of all tumors). Glioblastoma was more common in males, and meningioma was more common in females. In children and adolescents (age 0-19 years), the incidence rate of all primary brain and other CNS tumors was 6.14. An estimated 83,830 new cases of malignant and non-malignant brain and other CNS tumors are expected to be diagnosed in the US in 2020 (24,970 malignant and 58,860 non-malignant). There were 81,246 deaths attributed to malignant brain and other CNS tumors between 2013 and 2017. This represents an average annual mortality rate of 4.42. The 5-year relative survival rate following diagnosis of a malignant brain and other CNS tumor was 23.5% and for a non-malignant brain and other CNS tumor was 82.4%.
Improved survival of children with cancer has been accompanied by multiple treatment-related complications. However, most studies in survivors of childhood cancer focused on only 1 late effect.To assess the total … Improved survival of children with cancer has been accompanied by multiple treatment-related complications. However, most studies in survivors of childhood cancer focused on only 1 late effect.To assess the total burden of adverse health outcomes (clinical or subclinical disorders ["adverse events"]) following childhood cancer in a large cohort of childhood cancer survivors with long-term and complete medical follow-up.Retrospective cohort study of 1362 five-year survivors of childhood cancer treated in a single institution in the Netherlands between 1966 and 1996. All survivors were invited to a late-effects clinic for medical assessment of adverse events. Adverse events occurring before January 2004 were graded for severity in a standardized manner.Treatment-specific prevalence of adverse events (according to severity) at end of follow-up and relative risk of high or severe burden of disease (> or =2 severe or > or =1 life-threatening or disabling adverse events) associated with various treatments.Medical follow-up was complete for 94.3% of survivors (median follow-up, 17.0 years). The median attained age at end of follow-up was 24.4 years. Almost 75% of survivors had 1 or more adverse events, and 24.6% had 5 or more adverse events. Furthermore, 40% of survivors had at least 1 severe or life-threatening or disabling adverse event. A high or severe burden of adverse events was observed in 55% of survivors who received radiotherapy only and 15% of survivors treated with chemotherapy only, compared with 25% of survivors who had surgery only (adjusted relative risks, 2.18 [95% confidence interval, 1.62-2.95] and 0.65 [95% confidence interval, 0.46-0.90], respectively). A high or severe burden of adverse events was most often observed in survivors of bone tumors (64%) and least often in survivors of leukemia or Wilms tumor (12% each).In young adulthood, a substantial proportion of childhood cancer survivors already has a high or severe burden of disease, particularly after radiotherapy. This underscores the need for lifelong risk-stratified medical surveillance of childhood cancer survivors.
<h3>Abstract</h3> <h3>Background</h3> SARS-CoV-2, the virus causing coronavirus disease 2019 (COVID-19), is rapidly spreading across sub-Saharan Africa (SSA). Hospital-based care for COVID-19 is particularly often needed among older adults. However, a … <h3>Abstract</h3> <h3>Background</h3> SARS-CoV-2, the virus causing coronavirus disease 2019 (COVID-19), is rapidly spreading across sub-Saharan Africa (SSA). Hospital-based care for COVID-19 is particularly often needed among older adults. However, a key barrier to accessing hospital care in SSA is travel time. To inform the geographic targeting of additional healthcare resources, this study aimed to determine the estimated travel time at a 1km x 1km resolution to the nearest hospital and to the nearest healthcare facility of any type for adults aged 60 years and older in SSA. <h3>Methods</h3> We assembled a unique dataset on healthcare facilities' geolocation, separately for hospitals and any type of healthcare facility (including primary care facilities) and including both private- and public-sector facilities, using data from the OpenStreetMap project and the KEMRI Wellcome Trust Programme. Population data at a 1km x 1km resolution was obtained from WorldPop. We estimated travel time to the nearest healthcare facility for each 1km x 1km raster using a cost-distance algorithm. <h3>Findings</h3> 9.6% (95% CI: 5.2% – 16.9%) of adults aged ≥60 years had an estimated travel time to the nearest hospital of longer than six hours, varying from 0.0% (95% CI: 0.0% – 3.7%) in Burundi and The Gambia, to 40.9% (95% CI: 31.8% – 50.7%) in Sudan. 11.2% (95% CI: 6.4% – 18.9%) of adults aged ≥60 years had an estimated travel time to the nearest healthcare facility of any type (whether primary or secondary/tertiary care) of longer than three hours, with a range of 0.1% (95% CI: 0.0% – 3.8%) in Burundi to 55.5% (95% CI: 52.8% – 64.9%) in Sudan. Most countries in SSA contained populated areas in which adults aged 60 years and older had a travel time to the nearest hospital of more than 12 hours and to the nearest healthcare facility of any type of more than six hours. The median travel time to the nearest hospital for the fifth of adults aged ≥60 years with the longest travel times was 348 minutes (IQR: 240 – 576 minutes) for the entire SSA population, ranging from 41 minutes (IQR: 34 – 54 minutes) in Burundi to 1,655 minutes (IQR: 1065 – 2440 minutes) in Gabon. <h3>Interpretation</h3> Our high-resolution maps of estimated travel times to both hospitals and healthcare facilities of any type can be used by policymakers and non-governmental organizations to help target additional healthcare resources, such as new make-shift hospitals or transport programs to existing healthcare facilities, to older adults with the least physical access to care. In addition, this analysis shows precisely where population groups are located that are particularly likely to under-report COVID-19 symptoms because of low physical access to healthcare facilities. Beyond the COVID-19 response, this study can inform countries' efforts to improve care for conditions that are common among older adults, such as chronic non-communicable diseases. <h3>Funding</h3> Bill &amp; Melinda Gates Foundation <h3>Research in context</h3> <h3>Evidence before this study</h3> We searched MEDLINE from January 1966 until May 2020 for studies with variations of the words 'physical access', 'distance', 'travel time', 'hospital', and 'healthcare facility' in the title or abstract. To date, the only studies to systematically map physical access to healthcare facilities in sub-Saharan Africa at a high resolution examined access to emergency hospital care (with a focus on women of child-bearing age), access to care for children with fever, and travel time to the nearest healthcare facility for specific populations at risk of viral haemorrhagic fevers. <h3>Added value of this study</h3> The added value of this study is threefold. First, we assembled a new dataset of GPS-tagged healthcare facilities, which combines two unique data sources for the geolocation of healthcare facilities across sub-Saharan Africa: one-based on crowd-sourced data from OpenStreetMap and one based on information from ministries of health, health management information systems, government statistical agencies, and international organizations. Second, this is the first study to comprehensively map both hospitals and primary healthcare facilities, and including both public- and private-sector facilities, across sub-Saharan Africa. Third, because the COVID-19 epidemic causes a far higher need for hospital services among older than younger population groups, we focus on physical access to healthcare for the population aged 60 years and older, which is a population group that is rarely studied in investigations of healthcare demand and supply in the region. As such, our maps can inform not only the health system response to COVID-19, but more generally to conditions that are common among older adults in the region, particularly chronic non-communicable diseases and their sequelae. <h3>Implications of all the available evidence</h3> Low physical access to healthcare in sub-Saharan Africa will be a major barrier to receiving care for adults aged 60 years and older with COVID-19. However, there is a wide degree of variation in physical access to healthcare facilities for older adults in the region both between and within countries, which likely has an important bearing on the extent to which different population groups within countries are able to access care for COVID-19. Likewise, in those areas with a long travel time to the nearest healthcare facility of any type (of which there are a considerable number in most countries), symptomatic cases of COVID-19 are particularly unlikely to be reported to the healthcare system. Our high-resolution maps for each region and country in sub-Saharan Africa provide precise information about this geographic variation for local, national, and regional policymakers as well as non-governmental organizations.
Background. Pediatric patients' self-report of health-related quality of life (HRQOL) has emerged as an important patient-based health outcome. A practical, validated generic measure of HRQOL facilitates assessing risk, tracking health … Background. Pediatric patients' self-report of health-related quality of life (HRQOL) has emerged as an important patient-based health outcome. A practical, validated generic measure of HRQOL facilitates assessing risk, tracking health status, and measuring treatment outcomes in pediatric populations. Methods. The PedsQL is a brief, standardized, generic assessment instrument that systematically assesses patients' and parents' perceptions of HRQOL in pediatric patients with chronic health conditions using pediatric cancer as an exemplary model. The PedsQL is based on a modular approach to measuring HRQOL and consists of a 15-item core measure of global HRQOL and eight supplemental modules assessing specific symptom or treatment domains. The PedsQL was empirically derived from data collected from 291 pediatric cancer patients and their parents at various stages of treatment. Results. Both reliability and validity were determined. Cronbach's alpha coefficients for the core measure (α = .83 for patient and α = .86 for parent) were acceptable for group comparisons. Alphas for the patient self-report modules generally ranged from .70 to .89. Discriminant or clinical validity, using the known-groups approach, was demonstrated for patients on- versus off-treatments. The 11 scales showed small-to-medium positive intercorrelations, supporting the multidimensional measurement model. Further construct validity was demonstrated via a multimethod-multitrait matrix using standardized psychosocial questionnaires. Conclusion. The results support the PedsQL as a reliable and valid measure of HRQOL. The PedsQL core and modular design makes it flexible enough to be used in a variety of research and clinical applications for pediatric chronic health conditions.
Assessment (HTA) Programme was set Assessment (HTA) Programme was set
Background. The PedsQL (Pediatric Quality of Life Inventory) (Children's Hospital and Health Center, San Diego, California) is a modular instrument for measuring health-related quality of life (HRQOL) in children and … Background. The PedsQL (Pediatric Quality of Life Inventory) (Children's Hospital and Health Center, San Diego, California) is a modular instrument for measuring health-related quality of life (HRQOL) in children and adolescents ages 2 to 18. The PedsQL 4.0 Generic Core Scales are multidimensional child self-report and parent proxy-report scales developed as the generic core measure to be integrated with the PedsQL Disease-Specific Modules. The PedsQL 4.0 Generic Core Scales consist of 23 items applicable for healthy school and community populations, as well as pediatric populations with acute and chronic health conditions. Methods. The 4 PedsQL 4.0 Generic Core Scales (Physical, Emotional, Social, School) were administered to 963 children and 1,629 parents (1,677 subjects accrued overall) recruited from pediatric health care settings. Item-level and scale-level measurement properties were computed. Results. Internal consistency reliability for the Total Scale Score (α = 0.88 child, 0.90 parent report), Physical Health Summary Score (α = 0.80 child, 0.88 parent), and Psychosocial Health Summary Score (α = 0.83 child, 0.86 parent) were acceptable for group comparisons. Validity was demonstrated using the known-groups method, correlations with indicators of morbidity and illness burden, and factor analysis. The PedsQL distinguished between healthy children and pediatric patients with acute or chronic health conditions, was related to indicators of morbidity and illness burden, and displayed a factor-derived solution largely consistent with the a priori conceptually-derived scales. Conclusion. The results demonstrate the reliability and validity of the PedsQL 4.0 Generic Core Scales. The PedsQL 4.0 Generic Core Scales may be applicable in clinical trials, research, clinical practice, school health settings, and community populations.
Cancer is the second leading cause of death in children, after accidents. Little is known, however, about the symptoms and suffering at the end of life in children with cancer.In … Cancer is the second leading cause of death in children, after accidents. Little is known, however, about the symptoms and suffering at the end of life in children with cancer.In 1997 and 1998, we interviewed the parents of children who had died of cancer between 1990 and 1997 and who were cared for at Children's Hospital, the Dana-Farber Cancer Institute, or both. Additional data were obtained by reviewing medical records.Of 165 eligible parents, we interviewed 103 (62 percent), 98 by telephone and 5 in person. The interviews were conducted a mean (+/-SD) of 3.1+/-1.6 years after the death of the child. Almost 80 percent died of progressive disease, and the rest died of treatment-related complications. Forty-nine percent of the children died in the hospital; nearly half of these deaths occurred in the intensive care unit. According to the parents, 89 percent of the children suffered "a lot" or "a great deal" from at least one symptom in their last month of life, most commonly pain, fatigue, or dyspnea. Of the children who were treated for specific symptoms, treatment was successful in 27 percent of those with pain and 16 percent of those with dyspnea. On the basis of a review of the medical records, parents were significantly more likely than physicians to report that their child had fatigue, poor appetite, constipation, and diarrhea. Suffering from pain was more likely in children whose parents reported that the physician was not actively involved in providing end-of-life care (odds ratio, 2.6; 95 percent confidence interval, 1.0 to 6.7).Children who die of cancer receive aggressive treatment at the end of life. Many have substantial suffering in the last month of life, and attempts to control their symptoms are often unsuccessful. Greater attention must be paid to palliative care for children who are dying of cancer.
Abstract Cancer statistics for adolescents and young adults (AYAs) (aged 15‐39 years) are often presented in aggregate, masking important heterogeneity. The authors analyzed population‐based cancer incidence and mortality for AYAs … Abstract Cancer statistics for adolescents and young adults (AYAs) (aged 15‐39 years) are often presented in aggregate, masking important heterogeneity. The authors analyzed population‐based cancer incidence and mortality for AYAs in the United States by age group (ages 15‐19, 20‐29, and 30‐39 years), sex, and race/ethnicity. In 2020, there will be approximately 89,500 new cancer cases and 9270 cancer deaths in AYAs. Overall cancer incidence increased in all AYA age groups during the most recent decade (2007‐2016), largely driven by thyroid cancer, which rose by approximately 3% annually among those aged 20 to 39 years and 4% among those aged 15 to 19 years. Incidence also increased in most age groups for several cancers linked to obesity, including kidney (3% annually across all age groups), uterine corpus (3% in the group aged 20‐39 years), and colorectum (0.9%‐1.5% in the group aged 20‐39 years). Rates declined dramatically for melanoma in the group aged 15 to 29 years (4%‐6% annually) but remained stable among those aged 30 to 39 years. Overall cancer mortality declined during 2008 through 2017 by 1% annually across age and sex groups, except for women aged 30 to 39 years, among whom rates were stable because of a flattening of declines in female breast cancer. Rates increased for cancers of the colorectum and uterine corpus in the group aged 30 to 39 years, mirroring incidence trends. Five‐year relative survival in AYAs is similar across age groups for all cancers combined (range, 83%‐86%) but varies widely for some cancers, such as acute lymphocytic leukemia (74% in the group aged 15‐19 years vs 51% in the group aged 30‐39 years) and brain tumors (77% vs 66%), reflecting differences in histologic subtype distribution and treatment. Progress in reducing cancer morbidity and mortality among AYAs could be addressed through more equitable access to health care, increasing clinical trial enrollment, expanding research, and greater alertness among clinicians and patients for early symptoms and signs of cancer. Further progress could be accelerated with increased disaggregation by age in research on surveillance, etiology, basic biology, and survivorship.
Our website uses cookies to enhance your experience. By continuing to use our site, or clicking "Continue," you are agreeing to our Cookie Policy | Continue JAMA HomeNew OnlineCurrent IssueFor … Our website uses cookies to enhance your experience. By continuing to use our site, or clicking "Continue," you are agreeing to our Cookie Policy | Continue JAMA HomeNew OnlineCurrent IssueFor Authors Publications JAMA JAMA Network Open JAMA Cardiology JAMA Dermatology JAMA Health Forum JAMA Internal Medicine JAMA Neurology JAMA Oncology JAMA Ophthalmology JAMA Otolaryngology–Head & Neck Surgery JAMA Pediatrics JAMA Psychiatry JAMA Surgery Archives of Neurology & Psychiatry (1919-1959) Podcasts Clinical Reviews Editors' Summary Medical News Author Interviews More JN Learning / CMESubscribeJobsInstitutions / LibrariansReprints & Permissions Terms of Use | Privacy Policy | Accessibility Statement 2023 American Medical Association. All Rights Reserved Search All JAMA JAMA Network Open JAMA Cardiology JAMA Dermatology JAMA Forum Archive JAMA Health Forum JAMA Internal Medicine JAMA Neurology JAMA Oncology JAMA Ophthalmology JAMA Otolaryngology–Head & Neck Surgery JAMA Pediatrics JAMA Psychiatry JAMA Surgery Archives of Neurology & Psychiatry Input Search Term Sign In Individual Sign In Sign inCreate an Account Access through your institution Sign In Purchase Options: Buy this article Rent this article Subscribe to the JAMA journal
CBTRUS does not collect data directly from patients' medical records.As noted, data for CBTRUS analyses come from the NPCR and SEER programs.By law, all primary malignant and non-malignant brain tumors … CBTRUS does not collect data directly from patients' medical records.As noted, data for CBTRUS analyses come from the NPCR and SEER programs.By law, all primary malignant and non-malignant brain tumors are reportable diseases.Hence, tumor registrars in treatment centers collect these data and send this information to CCR in their states where they are collated and de-identified and sent to NPCR and SEER.Brain and CNS tumors are reported using the site definition described in Public Law 107-260. 3On an annual basis, NPCR secures permission from CCR to release their data on brain and CNS tumors to CBTRUS.CCR plays an essential role in the collection process, diagrammatically presented in Figure 1.These data are population-based and, therefore, by definition, represent a comprehensive documentation of all cancers diagnosed within a geographic region over a period of time.CBTRUS obtained incidence data from 51 CCR (46 NPCR and 5 SEER) that include cases of malignant and non-malignant (benign and uncertain) primary brain and CNS tumors.The population-based CCR include 50 state registries and the District of Columbia.Data were requested for all newlydiagnosed primary malignant and non-malignant tumors from 2008 to 2012 at any of the following anatomic sites: brain, meninges, spinal cord, cranial nerves, and other parts of the central nervous system, pituitary and pineal glands, and olfactory tumors of the nasal cavity (Table 1). 8PCR provided data on 350,531 primary brain and CNS tumors diagnosed from 2008 to 2012.An additional 14,705 primary brain and CNS tumor case records for the time period were obtained from SEER.These data were combined into a single data set for analyses.A total of 8,378 records (2.3%) were deleted from the final analytic data set for one or more of the following reasons: invalid site/histology combination, duplicate records that included a less accurate reporting source than microscopic confirmation (e.g.radiographic versus microscopic confirmation), duplicate records for bilateral vestibular schwannoma or meningioma, duplicate record for recurrent disease, and errors in time sequence of diagnosis.The final analytic data set included 356,858 records from all 51 population-based CCR.Age-adjusted incidence rates per 100,000 population for the entire US for selected other cancers were obtained from the United States Cancer Statistics (USCS), 5 produced by the CDC and the NCI, via CDC Wide-ranging Online Data for Epidemiologic Research (WONDER), for the purpose of comparison with brain and CNS tumor incidence rates. 9This database includes both NPCR and SEER data and represents approximately 100% of the US population.Survival data for malignant brain and CNS tumors were obtained from 18 SEER registries for the years 1995 to 2012.This dataset provides population-based information for approximately 26% of the US population, 10 and is a subset of the data used for the incidence calculations presented in this report.Survival information derived from active patient follow-up is not available in the data that CBTRUS receives from NPCR registries, so the SEER data are used for the generation of these tables.Mortality data used in this report are from the National Center for Health Statistics and include deaths where primary brain or CNS tumor was listed as cause of death on the death certificate for individuals from all 50 states and the District of Columbia.These data were obtained via SEER*Stat 11 (for malignant brain tumors and comparison cancers) and CDC Anatomic Location of Tumor SitesVarious terms are used to describe the regions of the brain and central nervous system.The specific sites used in this report are broadly based on the categories and site codes defined in the SEER Site/Histology Validation List. 19See Table 1 for an overview of CBTRUS primary site groupings.The CBTRUS Site/Validation List can be found on the CBTRUS website (http://www.cbtrus.org). Measurement MethodsCounts, means, rates, ratios, proportions, and other relevant statistics were calculated using R 3.1.2statistical software 20 and/or SEER*Stat 8.2.1. 21Statistics are suppressed when counts are fewer than 16 within a cell but included in totals except when data from only one cell are suppressed within a category to prevent identification of the number in the suppressed cell.Note that reported percentages may not add up to 100% due to rounding.Population data for each geographic region were obtained from the SEER program website 22 for the purpose of rate calculation.Age-adjusted incidence rates and 95% confidence intervals 23 for malignant and non-malignant tumors and for selected histology groupings by gender, race, Hispanic ethnicity, and pediatric, young adult, and adult age groups were estimated per 100,000 population.Age-adjustment was based on oneyear age groupings and standardized to the 2000 US standard population.The age distribution of the 2000 US standard population is shown in Appendix A. Combined populations for the regions included in this report are shown in Appendix B and Appendix C. CBTRUS presents statistics on the pediatric and adolescent age group 0-19 years for clinical relevance and in order to Ostrom et al: CBTRUS Statistical Report Estimation of Expected Numbers of Brain and CNS Tumors in 2015 and 2016Estimated numbers of expected malignant and non-malignant brain and CNS tumors were calculated for 2015 and 2016.To project 2015 and 2016 counts of newly diagnosed brain and CNS tumors, age-adjusted annual brain tumor incidence rates were generated for 2000-2012 for malignant tumors, and 2006-2012 for non-malignant tumors.These were generated by state, age, and histologic type.Joinpoint 4.2.0 25 was used to fit regression models to these incidence rates, 26 which were used to predict numbers of cases in future years using the parameter from the selected models.The models allowed for a maximum of 2 joinpoints (1 for non-malignant tumors), a minimum of 3 observations from a joinpoint to either end of the data, and a minimum of 3 observations between joinpoints. 27 Permutation procedures included in Joinpoint were used to select the best fitting model. MALIGNANTN = 117,023 32.8% NON-MALIGNANT N = 239,835 67.2% a. Percentages may not add up to 100% due to rounding.b.Includes histologies with ICD-O-3 behavior code of 0 or 1 from Neuronal and Mixed Neuronal Glial Tumors, Tumors of the Pineal Region, Embryonal Tumors, Other Tumors of Cranial and Spinal Nerves,
"Motivational Interviewing in Health Care: Helping Patients Change Behavior." COPD: Journal of Chronic Obstructive Pulmonary Disease, 5(3), p. 203 "Motivational Interviewing in Health Care: Helping Patients Change Behavior." COPD: Journal of Chronic Obstructive Pulmonary Disease, 5(3), p. 203
Background Lung cancer is a leading cause of cancer-related deaths around the world, but its impact on young and middle-aged individuals (aged 15–45 years) is less understood. The aim of … Background Lung cancer is a leading cause of cancer-related deaths around the world, but its impact on young and middle-aged individuals (aged 15–45 years) is less understood. The aim of this study was to assess the global burden of lung cancer in those aged 15–45 years during 1990–2021. Methods This study estimated global trends in prevalence, mortality, and disability-adjusted life years (DALYs) associated with lung cancer in this age group. The Global Burden of Disease Study 2021 was utilized to analyze data from 1990 to 2021. We examined variations by sex, age subgroup, sociodemographic index (SDI), and region and assessed key risk factors contributing to DALYs. Results Our findings reveal that while the number of lung cancer cases aged 15–45 increased by 22.1%, the age-standardized prevalence decreased by 23.9%; age-standardized mortality and DALYs declined significantly over the past three decades. The decrease was more evident among men than women, despite men having a higher overall disease burden. In high-SDI countries, prevalence and DALYs experienced substantial decreases, whereas low-SDI countries experienced increases, particularly among women. East Asia demonstrated a high disease burden. Smoking was identified as the most prominent risk factor, especially in high-middle SDI countries. Household air pollution and ambient particulate matter pollution came after it. Conclusion The study underscores the effectiveness of tobacco control measures and early screening in reducing lung cancer burden among young and middle-aged individuals. Nevertheless, the upward trends in low - SDI countries emphasize the necessity for interventions that are specifically aimed at environmental risk factors and smoking cessation initiatives. These findings provide valuable insights for policymakers and healthcare providers aiming to implement strategies to further cut down the global burden of lung cancer in the younger population.
Abstract One in twelve malignancies is diagnosed in a young adult between 20 and 39 years of age. One of the most relevant known causes of cancer in this age … Abstract One in twelve malignancies is diagnosed in a young adult between 20 and 39 years of age. One of the most relevant known causes of cancer in this age group, which is present in approximately 10% of cancer patients, is genetic cancer predisposition that originates from constitutional or postzygotic somatic (epi-)genetic variants leading to an increased cancer risk compared to the general population. The diagnosis of a cancer predisposition syndrome is important as it can affect cancer surveillance, prevention, and therapy. Universal gene-panel germline sequencing is offered by some centers, however, in clinical settings with limited resources, cancer predisposition syndrome screening tools can support the identification of those cancer patients who may benefit from genetic counselling and/or testing regarding underlying genetic diseases. Effective screening tools have been developed for children with cancer, but comparable cancer predisposition syndrome screening algorithms are lacking for young adults with cancer. We present here an easy-to-use cancer predisposition syndrome screening tool designed specifically for young adults with cancer. By combining available recommendations and disease-specific criteria, the algorithm is focusing on somatic genetic findings in malignant cells, specific cancer types strongly associated with cancer predisposition syndromes, and the personal and family past medical history. This tool may increase clinical awareness among oncologists and facilitate the diagnoses of cancer predisposition syndromes in young adults with cancer.

Minor Scale

2025-06-25
Sumy Takesue | Routledge eBooks
Pegylated asparaginase is now standard in US treatment protocols for acute lymphoblastic leukemia (ALL). However, they are associated with significant side effects, including severe hypertriglyceridemia. In this case series, we … Pegylated asparaginase is now standard in US treatment protocols for acute lymphoblastic leukemia (ALL). However, they are associated with significant side effects, including severe hypertriglyceridemia. In this case series, we report 8 patients with severe (triglyceride &gt;1000 mg/dL) hypertriglyceridemia after receiving long-acting asparaginase for ALL and describe their clinical course. The 8 patients included 3 females and 5 males (aged 2 to 14 y; median=12 y); 7 were Hispanic and 1 was Middle Eastern. The median time from dose to peak hypertriglyceridemia was 17 days and to resolution was 25 days. Presentations included isolated hypertriglyceridemia, pseudohyponatremia, hypoglycemia, and lipemia interfering with complete blood count results. Median length of hospitalization was 3.5 days. Management included hydration, a low-fat diet, omega-3 supplements, fenofibrates, statins, and levocarnitine. An insulin drip was used in 2 patients in the intensive care unit. Asparaginase treatment continued per protocol after triglyceride levels were &lt;1000 mg/dL. In conclusion, severe hypertriglyceridemia can occur after long-acting asparaginase and is typically asymptomatic and transient, not requiring a pause or modification in treatment. We recommend monitoring for hypertriglyceridemia closely in patients with risk factors who are resuming long-acting asparaginase therapy after triglyceride levels fall &lt;1000 mg/dL.
Purpose: Current yoga programs for cancer survivors do not meet participants’ needs and are rarely implemented in community-based settings, despite reported benefits. The aim of the current study was to … Purpose: Current yoga programs for cancer survivors do not meet participants’ needs and are rarely implemented in community-based settings, despite reported benefits. The aim of the current study was to implement a co-created 12-week bi-modal Hatha-based yoga program for adults diagnosed with gynecologic cancer in the community and assess the feasibility and acceptability of the program and study methods. Methods: Using a mixed methods series N-of-1 A1BA2 research design, participants were recruited from The Ottawa Hospital. Participants self-selected a morning or evening program, completed surveys 9 to 11 times and were interviewed post-program. The yoga instructor was interviewed post-program about her experience delivering the program. Quantitative feasibility outcomes were tracked throughout the study. Qualitative acceptability outcomes were explored during post-program semi-structured interviews. Audio and video recordings of the yoga classes and data from the instructor interview were used to assess fidelity outcomes to determine whether the protocol could be adhered to consistently. Results: Forty-one individuals were screened for eligibility and 20 consented (48.7%). Seventeen participants (85.0%) completed the final survey. Participants attended 83.1% (19.9/24) of classes with varied engagement with optional features. The instructor was 61.3% adherent to the prescribed protocol, using recommended behaviors 44.6% of the time. Participants shared barriers and facilitators that influenced the success of the trial methods and program. Conclusions: The program was well-received and trial methods were moderately successful, but refinements are warranted before a large-scale trial. Community-based yoga programs could be feasible and acceptable for women with gynecologic cancer.
Advances in the diagnosis and management of childhood cancers have significantly improved survival, and 80% of those who have access to contemporary treatment are expected to survive into adulthood. Multimodality … Advances in the diagnosis and management of childhood cancers have significantly improved survival, and 80% of those who have access to contemporary treatment are expected to survive into adulthood. Multimodality protocols incorporating high-intensity cytotoxic chemotherapy and radiotherapy may be associated with increased acute and delayed adverse effects, thereby compromising the quality of life. Furthermore, curative therapeutic options remain limited in the context of metastatic, relapsed or refractory disease as well as rare tumour entities. This has prompted a paradigm shift in pediatric oncology care in the contemporary era, encompassing multiple domains including cancer predisposition, immunotherapy, precision medicine and survivorship, aimed at optimising survival while minimising treatment-related toxicity and improving quality of life. While these advances are increasingly evident in high-income countries, several hurdles and challenges exist in the implementation of these strategies in low-income and middle-income countries (LMICs). Key barriers include restricted accessibility and affordability of newer and advanced diagnostic modalities and therapeutic agents, deficient infrastructure, non-availability of targeted agents and newer immunotherapy drugs, logistical and regulatory hurdles, limited access to clinical trials and inadequate long-term follow-up. Substantial changes are requisite to facilitate the translation of these changing paradigms into reality in India and LMICs.
Purpose: Since survival rates have improved over recent decades, there is an increasing number of childhood cancer survivors. Besides the late medical effects of the therapy, survivors experience financial and … Purpose: Since survival rates have improved over recent decades, there is an increasing number of childhood cancer survivors. Besides the late medical effects of the therapy, survivors experience financial and legal burdens and discrimination linked to their cancer history. The objective of this study was to examine the prevalence and types of discrimination faced by childhood cancer survivors in Germany. Methods: We conducted a survey in the German childhood cancer community assessing domains of discrimination. Results: Within 111 participants, recruited through social media campaigns and direct outreach to organizations in the field of pediatric oncology, 76.6% (n = 85) reported experiencing at least one form of discrimination. The most common areas of discrimination involved various types of insurance coverage (51.4%), employment (27.9%), and educational matters (16.2%). Conclusion: Our findings highlight the significant prevalence of lifelong financial and legal burdens and discrimination among childhood cancer survivors. It reveals the urgent need for education, awareness campaigns regarding cancer survival, and legal measures to end discrimination and to establish equal treatment in terms of social and financial issues. Our results contribute to the ongoing discussion surrounding the law named "Right to be Forgotten" and advocate an implementation in Germany.
Abstract Background: Survivors of adolescent and young adult cancer (AYA, age 15 to 39 years at diagnosis) are at increased risk for second malignant neoplasms (SMNs) of which lung cancer … Abstract Background: Survivors of adolescent and young adult cancer (AYA, age 15 to 39 years at diagnosis) are at increased risk for second malignant neoplasms (SMNs) of which lung cancer is the most lethal. Factors contributing to lung SMN development and outcomes are not well-characterized. Methods: Survivors of AYA cancer diagnosed between 1998 and 2020 were identified in the California Cancer Registry (n=251,632). Pearson’s chi-square and Fisher’s exact tests were used to determine associations between sociodemographic and cancer characteristics with SMN status. Multivariable Cox proportional hazard regression, adjusting for age, time from primary diagnosis, race/ethnicity, insurance, primary cancer site, stage, and treatment, evaluated associations between these characteristics and lung SMN incidence and mortality. Results: A total of 675 (0.7%) survivors were diagnosed with lung SMN, of whom 487 (72.1%) died. Median time from primary diagnosis to lung SMN was 13.0 years (IQR 4.0-20.0 years). Nearly half (46.5%) of survivors with lung SMN had metastatic disease. Non-Hispanic Black survivors were more likely than non-Hispanic White survivors to develop lung SMN (adjusted hazard ratio [aHR] 1.47, 95% confidence interval [95%CI] 1.13-1.91) but not more likely to die from lung SMN (aHR 0.84, 95%CI 0.56, 1.27). Primary cancer treatment with both chemotherapy and radiation was associated with greater likelihood of lung SMN (aHR 1.41, 95%CI 1.11-1.80) compared to receiving neither. Conclusions: Lung SMN has a long latency and high mortality among survivors of AYA cancer. Impact: More research is needed regarding lung cancer prevention, education, and early detection, particularly among survivors at higher risk.
The National Cancer Institute designated models of comprehensive cancer care centres endeavour to enable the delivery of high-quality, holistic cancer care, informed by research evidence across the cancer care trajectory. … The National Cancer Institute designated models of comprehensive cancer care centres endeavour to enable the delivery of high-quality, holistic cancer care, informed by research evidence across the cancer care trajectory. These comprehensive cancer centers have typically been adult-oncology-focused, leaving an important gap and opportunity to consider what a model of comprehensive cancer care might look like for children and young people. With the advent of the opening of the first comprehensive children’s cancer center in Australia and the southern hemisphere, this commentary considers the important role that psychosocial oncology needs to play in driving high-quality, person-centered comprehensive cancer care for all.
Adult specialist palliative care professionals have played a key role in the care of children with palliative care needs in the community. However, there is little known on their perceived … Adult specialist palliative care professionals have played a key role in the care of children with palliative care needs in the community. However, there is little known on their perceived level of preparedness or training in providing children's palliative care in the community setting. The aim of this scoping review is to appraise the current literature and identify any existing gaps in knowledge on the level of preparedness and training of adult specialist palliative care professionals caring for children in the community. The review question asks: "Do adult specialist palliative care professionals feel sufficiently prepared to deliver their services to children in the community?". In order to address the review question, a scoping review was conducted. This was guided by the framework of Arksey and O'Malley and further enhanced by the methodology of the Joanna Brigg's Institute in order to report the findings. Twenty studies were identified from the database searches. Common areas identified from the literature were that adult specialist palliative care professionals perceived that they had a lack of training or experience in children's palliative care, lack of knowledge or preparedness, and that they faced barriers preventing them from providing effective children's palliative care. This review highlights the lack of empirical research on adult specialist palliative care professionals providing children's palliative care in the community. While the available literature demonstrates both their limited training, experience and preparedness in caring for children.
Chronic illness in children elicits emotions within the family, impacts family bonds, and reshapes family dynamics. Support from healthcare professionals is vital for facilitating family adaptation. The aim of this … Chronic illness in children elicits emotions within the family, impacts family bonds, and reshapes family dynamics. Support from healthcare professionals is vital for facilitating family adaptation. The aim of this study is to describe the life situation of Finnish families with a chronically ill child and to enhance understanding of the types of support the families perceive. Data were collected in Finland as part of an international research project (2021-2023). 76 parents of chronically ill children completed an electronic survey. Analyses, conducted using IBM SPSS 29, included descriptive and inferential statistical methods. The ICE-FPSQ instrument assessed perceived support, generating composite variables for overall, emotional, and cognitive support. Association of background variables and adaptation with composite scores were examined using the Mann-Whitney U test. Life situation: Among respondents, 54.7 % (n = 41) reported that the illness strains their family, and 47.4 % (n = 36) noted it has changed them as a family. However, 81.5 % (n = 62) felt the experience improved their coping abilities. Support from healthcare professionals: The median ICE-FPSQ composite score was 37 (n = 71, Q1 = 28, Q3 = 44; range: 14-70). For cognitive support, the median was 16 (Q1 = 12, Q3 = 18; range: 5-25), and for emotional support, it was 20 (Q1 = 14.3, Q3 = 26.5; range: 9-45). Mothers perceived receiving less support than fathers, and the child's hospitalization increased the perceived amount of support. Chronic illness places a considerable burden on families. Healthcare professionals can support families in adapting to life with a child who has a chronic illness.
Background: Paediatric cancers are rare tumours. These tumours nevertheless represent the leading cause of death by disease in children under 15. Cameroon has recorded 800 new cases of cancer in … Background: Paediatric cancers are rare tumours. These tumours nevertheless represent the leading cause of death by disease in children under 15. Cameroon has recorded 800 new cases of cancer in 2022 in children aged between 0 and 14. Paediatric radiotherapy requires much more conformal irradiation techniques, and is practised very little in Cameroon compared with developed countries such as France. This study therefore describes paediatric radiotherapy techniques in Toulouse, with a view to popularising them in the Cameroonian practice. Methodology: We conducted a descriptive study of 32 patients treated for paediatric cancer in the Radiotherapy Department of Institut Universitaire du Cancer de Toulouse in France from 11 November 2024 to 31 January 2025. The 32 patients were included from the time of the radiotherapy consultation. Most of our variables were based on the environmental setting of the consultation, fusion imaging, restraint methods and dosimetry constraints. Results: The median age was 6.7 years, with first and third quartiles of 3.3 and 11.2 years respectively. The sex ratio was 1. We noted that 50% of our patients had central nervous system tumours. The consultation setting was adapted for each patient at the radiotherapy consultation. Cerebellar syndrome was present in 12 of the 16 patients with central nervous system involvement. Two of the most satisfactory mean dosimetry objectives in terms of PTV coverage and homogeneity concerned localised glioma without BRAF-V600E expression with a D95%=97% and cutaneous lymphoma with a D95%=99.2%. Dose constraints to organs at risk were generally satisfactory for the 32 patients. The restraint methods used allowed consistent repositioning during treatment. Conclusion: Radiotherapy for paediatric cancers is still quite special, given the specific characteristics of the patients and the tumours concerned. Our experience of therapeutic procedures for patients in Toulouse has strong points that deserve to be applied in Cameroon. Keywords: Paediatric cancer, low income, Radiotherapy techniques, Dosimetry, cameroon's prospects.
Abstract With advances in treatment options for severe congenital heart disease, there is a growing population of children and adults living with advanced heart disease, many of whom experience significant … Abstract With advances in treatment options for severe congenital heart disease, there is a growing population of children and adults living with advanced heart disease, many of whom experience significant long-term comorbidities and uncertain disease trajectories. Although palliative care (PC) plays an integral role in the care of children with advanced heart disease, there is a lack of PC education in pediatric cardiology fellowship training. We distributed a cross-sectional survey to pediatric cardiology fellowship program directors (PDs) nationally ( n = 58). Survey response rate was 48.3% (28/58). PDs reported PC didactic education in 71.4% (20/28) of programs, with 95% (19/20) reporting this education came from PC specialists, 35% (7/20) from pediatric cardiologists, 25% (5/20) from cardiac intensivists, and 10% (2/20) from general pediatric intensivists. Simulation was used by 10.7% (3/28) of programs. Only one program utilized online modules. Informal bedside teaching occurred in 92.9% (26/28) of programs, and dedicated PC rotations in 25% (7/28). Most programs endorsed annual formal didactics on various PC topics, although some topics were covered more frequently and some never covered by individual programs. Only 53.8% (14/26) of PDs were satisfied with the amount of PC education while 76.9% (20/26) were satisfied with the quality of PC education. Barriers included “too much other content to cover” (77%) and “lack of faculty expertise” (27%). A subset of PDs rated graduating fellows’ skills as less than competent in advance care planning (38.5%), criticall illness communication (15.4%), and complex symptom management (15.4%). With a wide range of PC education practices and high rate of PD dissatisfaction with PC education in their programs, there is a need for standardized PC training recommendations and curriculum.
Este estudo analisou o perfil epidemiológico das crianças atendidas na triagem oncológica infantil no Centro de Atenção à Saúde da Mulher e da Criança (CASMUC) em Belém, Pará, Brasil, de … Este estudo analisou o perfil epidemiológico das crianças atendidas na triagem oncológica infantil no Centro de Atenção à Saúde da Mulher e da Criança (CASMUC) em Belém, Pará, Brasil, de janeiro de 2014 a dezembro de 2022. Apesar dos avanços no tratamento do câncer pediátrico, esta condição continua sendo uma preocupação significativa de saúde pública. Foram analisados 282 prontuários de pacientes com idades entre 0 meses e 12 anos. Mais de 50% dos pacientes eram do sexo masculino, e a maioria residia na região metropolitana de Belém. Aproximadamente um terço das crianças buscaram atendimento em menos de três meses após o início dos sintomas, destacando a importância da detecção precoce. A faixa etária mais comumente atendida foi até os 6 anos de idade. Os sintomas mais frequentes incluíam linfonodos palpáveis, febre e dor. Os exames laboratoriais e de imagem desempenharam um papel crucial no diagnóstico e encaminhamento dos casos suspeitos. Dos casos atendidos, 146 foram considerados suspeitos de câncer infantil, sendo os mais comuns linfoma, leucemia e retinoblastoma. No entanto, houve deficiências na abordagem inicial ao paciente, resultando em atrasos no diagnóstico e tratamento. Este estudo destaca a importância do acesso precoce e facilitado ao atendimento especializado, bem como a necessidade de melhorar a conscientização sobre os sinais e sintomas do câncer infantil entre os pais e profissionais de saúde. Investimentos em educação e conscientização são cruciais para melhorar os desfechos clínicos e reduzir o impacto do câncer pediátrico na sociedade.
Amaç: Primer immün yetmezliği (PİY) ve kistik fibrozis (KF) hastalığı olan çocukların ve birincil bakım veren ebeveynlerinin COVID-19 pandemisi sırasında kaygı düzeylerini ölçmeyi ve kaygı düzeylerinin hastaların klinik özellikleri ile … Amaç: Primer immün yetmezliği (PİY) ve kistik fibrozis (KF) hastalığı olan çocukların ve birincil bakım veren ebeveynlerinin COVID-19 pandemisi sırasında kaygı düzeylerini ölçmeyi ve kaygı düzeylerinin hastaların klinik özellikleri ile ilişkisini incelemeyi amaçladık. Yöntemler: Çalışmaya 0-18 yaş arası 28 PİY hastası ve 0-18 yaş arası 28 KF hastası ve birincil bakım veren ebeveynleri dahil edildi. Kontrol grubuna çocuk polikliniği' ne başvuran ve kronik hastalığı olmayan 0-18 yaş arası 28 hasta ve onların birincil bakım veren ebeveynleri alındı. 8 yaş ve üzeri çocuklarda anksiyetenin durumunu ve özelliklerini değerlendirmek için Çocukluk Çağı Kaygı Bozuklukları Öz bildirim Ölçeği Çocuk Formu, ebeveynlere ise Beck depresyon ölçeği uygulandı. Bulgular: Çocuklarda anksiyete bozukluklarını tarama ölçeğinin sorularını 8 yaş üstü 54 hasta cevaplamış, sağlıklı gruptan 20 çocuktan 10'u, primer immün yetmezlik grubundan 16 hastadan 9'u ve kistik fibrozis grubundan 18 hastadan 9'unun ölçek puanı &gt;25 olmuştur. Ancak karşılaştırıldığında gruplar arasında istatistiksel olarak anlamlı fark yoktu (p&gt;0.05). Annelere verilen Beck depresyon ölçek sonuçları gruplar arasında anlamlı farklılık göstermedi (p=0.136). Sonuç: Corona virüs salgını boyunca kliniğimiz pediatrik kistik fibrozis ve primer immün yetmezlik hastalarına bakım sağlamaya devam etti. Aynı tarihler arasında çeşitli şikayetlerle kliniğimize başvuran kronik hastalığı olmayan benzer yaştaki çocuklarla karşılaştırıldığında, tedavi için hastaneye gitmek zorunda kalan kronik hastaların anksiyete düzeylerinin benzer olduğu saptanmıştır.
Abstract Purpose Travelling for cancer treatment imposes financial burden and disrupts routines, including food access and preparation. This study assessed the social return on investment (SROI) and acceptability of providing … Abstract Purpose Travelling for cancer treatment imposes financial burden and disrupts routines, including food access and preparation. This study assessed the social return on investment (SROI) and acceptability of providing a free, healthy meal to rural cancer patients and caregivers on arrival at a city-based accommodation lodge operated by a not-for-profit cancer support organisation. Methods Baseline survey data were collected from lodge guests over an 8-week period, and again during an 8-week Intervention period where guests received a free meal from an on-site fresh food vending machine on the day of arrival. Descriptive statistics, qualitative analyses, and concurrent forecast and evaluative SROI analyses were conducted to evaluate the free meal program. Results During Baseline and Intervention phases, 344 guests stayed at the lodge, with 178 (52%) and 106 (31%) surveys completed, respectively. From Baseline surveys, guests spent on average 60 min (range: 5–180 min) preparing and/or acquiring their meal on arrival, and paid AU$15.00 per person (range: AU$1.50–$50.00) for their meal and AU$10.00 per person (range: AU$3.00–$50.00) in travel/delivery costs. From Intervention surveys, guests valued the time saved preparing and/or acquiring a meal (90%), costs saved on travel/delivery (83%) and meals (80%), and a healthier or higher protein meal (60%). Every dollar invested in the meal program generated an estimated AU$3.06 of social value. For acceptability, meal enjoyment and satisfaction were higher among the Intervention group compared to Baseline (90% vs. 54%, 92% vs. 81%, respectively). Conclusion A free meal program for rural cancer patients and caregivers travelling for treatment generated a positive SROI and was highly acceptable.
Abstract Cancer remains a leading cause of death in children/adolescents. Approximately 8–18% of children/adolescents with cancer have an underlying pediatric Genetic Cancer Risk (p-GCR). P-GCR clinics offer surveillance aimed at … Abstract Cancer remains a leading cause of death in children/adolescents. Approximately 8–18% of children/adolescents with cancer have an underlying pediatric Genetic Cancer Risk (p-GCR). P-GCR clinics offer surveillance aimed at improving survival outcomes. Yet children/adolescents require more than surveillance protocols to support holistic health. A multidisciplinary model of care (MoC), including Advanced Practice Nurses (APN) is needed. Yet a MoC and formal description of the APN is lacking in p-GCR clinics. To explore existing evidence of holistic, multidisciplinary approaches to care for children/adolescents and families with a p-GCR; to identify how Advanced Practice Nurses (APN) contribute to care delivery in p-GCR services. A scoping review was conducted in three databases: MEDLINE (Ovid), Embase (Ovid) and CINAHL Complete. JBI methodology for conducting and reporting scoping reviews was used to search MEDLINE, Embase and CINAHL Complete. Gray and white literature was considered from 1991 to 2023. Thirty two studies met inclusion criteria. Thirteen aspects of a MoC in p-GCR were identified including: clinic scope, clinic locality, clinicians involved, care coordination, clinic activity, geography, centralisation of care, psychosocial aspects, shared decision making, education, referrals, transition to adult services and research. There were 10 APN roles described that supported the service/organisation and the delivery of holistic care to children/adolescents with a p-GCR. Using a systematic approach, this review identified how services provide care to children/adolescents with a p-GCR and the APN role in these services. A multidisciplinary MoC with dedicated care coordination can enable child and family centred care with a holistic healthcare approach.
PURPOSE Survivors of adolescent and young adult (AYA)-onset cancers require comprehensive cancer surveillance care. Guidelines recommend 1-4 clinician visits annually for 5 years depending on stage and disease. The goal … PURPOSE Survivors of adolescent and young adult (AYA)-onset cancers require comprehensive cancer surveillance care. Guidelines recommend 1-4 clinician visits annually for 5 years depending on stage and disease. The goal of this study was to identify factors associated with patterns of post-treatment primary and oncology care in a large cohort of survivors of AYA-onset cancers diagnosed within an integrated health care system. METHODS Patients diagnosed with cancer between 2006 and 2020 age 15-39 years were included. Surveillance visits were identified from electronic medical records 2-5 years after diagnosis. Multivariable logistic regression was used to assess associations with zero oncology specialty visits. RESULTS Of 7,925 survivors, 46% were Hispanic, 6% non-Hispanic Black, 11% non-Hispanic Asian, 35% non-Hispanic White, and 65% female. One-quarter had no oncology specialty visits in the first surveillance year rising to 38% in year 5; 31% had 3+ visits in the first year, declining to 13% in year 5. Over the surveillance period, 17% did not have any oncology specialty visits and 6% had no primary care or oncology visits. Those who were male (odds ratio [OR], 1.21 [95% CI, 1.02 to 1.45]), 20-24 years at diagnosis (OR, 1.58, 95% CI, 1.27 to 1.9; v 35 to 39), or non-Hispanic Black (OR, 1.38, 95% CI, 1.05 to 1.82; v non-Hispanic White) or had high-deductible commercial or Medicaid insurance (OR, 1.35, 95% CI, 1.15 to 1.59; OR, 1.42, 95% CI, 1.11 to 1.82, respectively; v no or low deductible commercial) were more likely to be in the 0-visit group for oncology specialty care. CONCLUSION Although the majority of this cohort received either primary or oncology specialty care, our study identifies those who may need tailored outreach for follow-up care. Continued research into development and testing of interventions to improve uptake of appropriate health care for survivors of AYA-onset cancers is critical.
Background The risk of cancers associated with psychiatric disorders is understudied. Aims To investigate whether cancer risk varies with the presence of psychiatric disorders. Method Patients diagnosed with psychiatric disorders … Background The risk of cancers associated with psychiatric disorders is understudied. Aims To investigate whether cancer risk varies with the presence of psychiatric disorders. Method Patients diagnosed with psychiatric disorders in South Korea between 1 January and 31 December 2017 were included in the study and referred to as the psychiatric disorder group. The non-psychiatric-disorder group, selected using a stratified random sampling technique based on age and gender, comprised individuals who had never been diagnosed with a psychiatric disorder. The primary outcome was a new cancer diagnosis, assessed over a 5-year period (1 January 2018 to 31 December 2022). Results Following 1:1 propensity score matching, the final analysis included data for 686 570 adults (343 285 in each group). The cancer incidence in the psychiatric disorder group from 2018 to 2022 was 15.4% (52 948/343 285), whereas in the non-psychiatric-disorder group, it was 12.8% (43 989/343 285). Cox regression analysis revealed that the psychiatric disorder group had a 23% higher occurrence of cancer compared with non-psychiatric-disorder controls (hazard ratio: 1.23, 95% CI: 1.21, 1.24; P &lt; 0.001). Significant associations between cancer incidence and specific psychiatric disorders were observed in individuals with alcohol-related disorders (hazard ratio: 1.27, 95% CI: 1.23, 1.32; P &lt; 0.001), anxiety disorders (hazard ratio: 1.15, 95% CI: 1.14, 1.17; P &lt; 0.001) and major depressive disorder (hazard ratio: 1.16, 95% CI: 1.15, 1.18; P &lt; 0.001). Conclusions Individuals with psychiatric disorders were more likely to develop cancer than those without. We identified associations of alcohol-related disorders, anxiety disorders and major depressive disorder with cancer risk.
In 2015 this core of authors wrote a "state of the union" overview of AYA oncology care at the time titled "Adolescent and Young Adult (AYA) Oncology in the United … In 2015 this core of authors wrote a "state of the union" overview of AYA oncology care at the time titled "Adolescent and Young Adult (AYA) Oncology in the United States: A Specialty in Its Late Adolescence." Since then, the landscape of cancer care in this unique population has changed, with encouraging improvement in some areas and persistent challenges in others. Nine years later, we have decided to update our review to demonstrate how far we have come in caring for 15 to 39-year olds with cancer in the United States and how much further we need to go to truly improve both their short-term and long-term outcomes. What started as a call to arms after the AYA-specific Progress Review Group (PRG) in 2006 became a national initiative, which has had successes and failures nationally, regionally, and locally in trying to move the needle for a group of patients that continues to straddle both the pediatric and adult oncology worlds. Back in 2015, we described the field as in its late adolescence, still trying to define itself. With this 2-part review, we hope to demonstrate that as a subspecialty it has grown up but is still trying to firmly establish its place in the larger world of oncology, much like a young adult that has moved away from home and is establishing its own identity in a changing world. In part 1 we focus on epidemiology of AYA cancer as well as acute lymphoblastic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, and sarcoma in this unique population of patients.
Abstract Background Childhood cancer survivors (CCS) often develop late complications after their primary disease is cured. Cardiovascular disease is one of the most frequent and serious complications that significantly affects … Abstract Background Childhood cancer survivors (CCS) often develop late complications after their primary disease is cured. Cardiovascular disease is one of the most frequent and serious complications that significantly affects prognosis and quality of life. Early detection and appropriate intervention are expected to improve their prognosis. However, the risk factors for late cardiotoxicity in CCS are not well defined, and biomarkers that can detect cardiac dysfunction prior to the development of heart failure have not yet been established. Methods Medical records of childhood hematologic cancer survivors referred to our department for transitional care between January 2016 and October 2023 were reviewed for this cross-sectional study. The relationships between the most recent cardiac function at the review and history of cancer treatment were analyzed. Results This study included 34 patients and the median elapsed time since cancer diagnosis was 16.5 years (range, 5–30 years). None of the patients had symptomatic cardiac complications. The E/e’ ratio was significantly higher in survivors with a history of hematopoietic stem cell transplantation (HSCT) than in those who did not undergo HSCT (median, 8.4% vs. 6.25%, P = 0.040), while no intergroup differences were observed in ejection fraction (EF), global longitudinal strain (GLS), or the brain natriuretic protein (BNP) level. In addition, the E/e’ ratio was positively correlated with years elapsed since cancer diagnosis (ρ = 0.38, P = 0.034). While there was no clear correlation between years since cancer diagnosis and the BNP level in the overall cohort, a strong correlation was found in patients with a history of HSCT (ρ = 0.73; P &lt; 0.01). No significant differences were observed in EF, E/e’ ratio, GLS, and BNP level by cumulative anthracycline dose or history of chest irradiation. Conclusions In this study, no patient had late symptomatic cardiac complications. However, in those who had survived for a long time since their cancer diagnosis, particularly those with a history of HSCT, there were significant elevations in the E/e’ ratio and the BNP level. Continuous follow-up is required to determine whether these abnormalities lead to symptomatic cardiotoxicity and whether they serve as useful markers for the early detection of cardiac complications.
Background: The number of young adults living with life-limiting conditions is increasing. This population requires palliative care responsive to their needs and preferences. Aim: To identify patient reported outcome measures … Background: The number of young adults living with life-limiting conditions is increasing. This population requires palliative care responsive to their needs and preferences. Aim: To identify patient reported outcome measures developed, adapted and validated to assess the health outcomes of young adults (aged 18–25 years) living with life-limiting conditions. To examine their measurement properties and identify the most comprehensive, valid and reliable measures. Design: A systematic review and evaluation of measurement properties. PROSPERO ID (CRD42023443273). Data sources: MEDLINE; EMBASE; CINAHL; PsycInfo; AMED and Cochrane Library from inception to 03/07/2023. Searches were emented by hand-searching references. Results: Four thousand nine hundred twenty-two papers were identified. Five hundred and fifty-six full texts were assessed for eligibility. Thirty-five papers reporting 68 patient reported outcome measures were included. Most studies recruited young adults living with cancer ( n = 29/35), we did not identify any studies with young adults living with complex neurodisability. Most measures ( n = 61/68) were existing paediatric or adult patient reported outcome measures. Seven ( n = 7/68) were young adult measures. Most were two-dimensional. The most assessed measurement properties were internal consistency, construct validity and structural validity. None of the measures were recommended for use as they did not meet sufficient criteria for content validity and internal consistency. Conclusion: There is a lack of multi-dimensional patient reported outcome measures for young adults living with life-limiting conditions, especially for non-cancerous conditions. Future studies may identify existing holistic measures developed for children or adults and adapt them for use with young adults. Studies should ask young adults and professionals about the relevance, comprehensiveness and comprehensibility of items.
As more and more educational therapists (ETs) have been increasingly encountering terminally-ill or life-limited children in their practice, the need for training and involvement in Pediatric Palliative Care (PPC) has … As more and more educational therapists (ETs) have been increasingly encountering terminally-ill or life-limited children in their practice, the need for training and involvement in Pediatric Palliative Care (PPC) has become more pressing. The author of this paper advocates to equip ETs with the adequate competencies necessary to support holistic care, consistent with PPC principles encompassing physical, emotional, psychosocial, and spiritual needs. The paper outlines the key types of terminal conditions commonly seen in educational therapy (EdTx) and also introduces the HEARTS Checklist, an easy-to-remember planning tool for delivering developmentally appropriate, compassionate, and individualized interventions. It also explores the application of the Pediatric Palliative Screening Scale (PePaS), which requires the involvement of medical professionals, as a collaborative assessment tool to inform EdTx strategies, despite its medical origins. Emphasizing interdisciplinary collaboration, family-centered planning, and cultural sensitivity, this paper positions ETs as essential contributors to enhancing quality of life for terminally-ill children and their families.
Objective: Siblings of youth with cancer face increased psychosocial risk. The psychosocial standards of care in pediatric oncology recommend siblings be involved in cancer treatment (i.e., visit patients during hospitalizations, … Objective: Siblings of youth with cancer face increased psychosocial risk. The psychosocial standards of care in pediatric oncology recommend siblings be involved in cancer treatment (i.e., visit patients during hospitalizations, receive developmentally appropriate information about cancer) to promote adjustment to cancer. However, siblings are frequently absent from treatment settings, and it is unclear how families determine siblings’ level of involvement in cancer treatment. This qualitative study aimed to characterize family decision-making regarding siblings’ involvement in cancer treatment. Methods: We conducted semi-structured qualitative interviews with 16 families ( n = 22 siblings; n = 16 parents) of youth with cancer, querying siblings’ involvement in cancer treatment, families’ decision-making processes, and siblings’ levels of satisfaction with involvement. Data were transcribed, cleaned, systematically coded, and analyzed with Applied Thematic Analysis. Results: Parents often decided on sibling involvement based on competing considerations: the best interests of the child with cancer, sibling routines, logistics, and systemic barriers (e.g., scarcity of hospital-based supports). Siblings want to be included in decision-making processes regarding their involvement, which they describe helps them feel included and important. Conclusions: Providers can take active roles in facilitating communication within the family about siblings’ needs and treatment involvement preferences. Potential avenues for improvement include hospital-based sibling supports and healthcare providers’ relationships with families.
Abstract Purpose Due to the labor intensity demanded by proton beam therapy (PBT) in pediatric patients, information on operational procedures related to efficiency is crucial to optimize quality and safety. … Abstract Purpose Due to the labor intensity demanded by proton beam therapy (PBT) in pediatric patients, information on operational procedures related to efficiency is crucial to optimize quality and safety. We aimed to identify patient factors that affect the duration of the pediatric PBT session and to develop an easy-to-use predictive score of extended duration. Methods/patients This is an observational retrospective cohort study in an academic medical centre, between May 2020 and February 2024. Seventy seven ASA III pediatric patients treated with PBT were recruited. Results The mean age was 4.8 years [standard deviation (SD): 2.1] and 52% were women. The mean duration of the PBT session was 50 min (SD: 17). Extended duration of the PBT session (&gt; 45 min) occurred in 39 patients (51%). Five predictors of extended duration were selected for the final prediction model. In the multivariable model, an age &gt; 45 months showed a near eightfold increased odds of extended duration [Odds ratio (OR): 7.76, 95% confidence interval (95% CI) 1.63–36.99, P = 0.010]. The OR (95% CI) for long-term venous access, no recurrent tumors, hydrocephalus, and craniospinal location were 5.91 (1.47 to 23.79), 3.81 (0.67 to 21.69), 3.79 (0.90 to 15.97), and 2.59 (0.69 to 9.76), respectively. This five-variable model was used to build a nomogram-based score with an area under the receiver operating characteristic curve of 0.84 (95% CI 0.76–0.93). Conclusions A simple nomogram based on readily available pretreatment data has potential for planning pediatric PBT standard clinical expert practice.
As survival rates for teenagers and young adults (TYAs) with cancer exceed 80%, they are living longer post treatment, yet often experience prolonged health and quality of life concerns. Many … As survival rates for teenagers and young adults (TYAs) with cancer exceed 80%, they are living longer post treatment, yet often experience prolonged health and quality of life concerns. Many TYAs also experience unmet support needs. This study aimed to identify TYAs support needs following treatment at a UK hospital and explore how and when TYAs prefer to receive support. This study involved two phases: Phase 1 involved semi-structured interviews with 16 TYAs, 1-6 years post-treatment, aged 16-25 years at time of treatment completion and examined their experiences of support services, and preferences for future care. Phase 2 consisted of co-design workshops with eight TYAs and feedback from five healthcare/allied professionals (HCAPs) to refine and develop recommendations. Phase 1 findings revealed six key themes: (1) survivorship as disrupted continuity; (2) negotiating legitimacy and relational safety in help seeking; (3) support offered vs. support sought: pathways of referral and self-initiation; (4) emotional readiness as context dependent and non-linear; (5) support as an ecosystem, not a moment; and (6) personalised autonomy in support engagement. Phase 2 findings informed recommendations that emphasise the importance of flexible, personalised, and accessible post-treatment support, with pathways of care/support that can adapt to TYAs changing needs and preferences over time.
In an effort to ease the emotional devastation of parents who had just learned their child has diabetes, a pediatric emergency medicine fellow struggles with crossing the professional-personal line to … In an effort to ease the emotional devastation of parents who had just learned their child has diabetes, a pediatric emergency medicine fellow struggles with crossing the professional-personal line to share his experience with diabetes.
<title>Abstract</title> INTRODUCTION: Over the past few years, there has been growing concern about the treatment and management of adolescents and young adults (AYA) with cancer, due to the unique characteristics … <title>Abstract</title> INTRODUCTION: Over the past few years, there has been growing concern about the treatment and management of adolescents and young adults (AYA) with cancer, due to the unique characteristics of these patients transitioning to adulthood and the lack of progress in improving survival compared to younger patients. The main objective of the study is to analyze the epidemiology and overall survival of the adolescent patient cohort at Gregorio Marañón Hospital since the creation of the Adolescent Unit. RESULTS AND DISCUSSION: A study was conducted in the Adolescent Unit of the Gregorio Marañón Hospital, analyzing epidemiology and survival. A total of 111 patients were included, with a wide variety of diagnoses, with lymphomas being the most frequent pathology. The 5-year survival rate was 73%. Pediatric treatment protocols were used in 77% of the patients, and fertility preservation techniques were performed in 25% of the cases. CONCLUSIONS: The Adolescent Unit undertakes a multidisciplinary approach to adolescents and it is necessary to improve the factors that allow an increase in survival and quality of life.
The aim of the present study was to evaluate the reliability and validity of the Korean version of the Obsession with COVID-19 Scale (OCS) and the feasibility of cognitive-behavioral models … The aim of the present study was to evaluate the reliability and validity of the Korean version of the Obsession with COVID-19 Scale (OCS) and the feasibility of cognitive-behavioral models of COVID-related hypochondriasis among patients with cancer. Furthermore, we explored whether intolerance of uncertainty and cancer-related dysfunctional beliefs about sleep could be incorporated into this model. An online survey was conducted among patients who visited a cancer treatment center from March to June 2022. Responses were collected for questionnaires including the OCS, Coronavirus Reassurance-seeking Behaviors Scale (CRBS), Stress and Anxiety to Viral Epidemics-6 items (SAVE-6), Cancer-related Dysfunctional Beliefs and Attitudes about Sleep-14 items (C-DBAS-14) scale, and Intolerance of Uncertainty-12 items (IUS-12) scale. A total of 154 patients with cancer were included. The OCS was a reliable and valid measure for coronavirus-related concerns among cancer patients, and it was significantly correlated with CRBS (p<0.01), SAVE-6 (p<0.01), IUS-12 (p<0.01), and C-DBAS-14 (p<0.01). Linear regression revealed that OCS was expected by CRBS (p<0.001), SAVE-6 (p=0.032), and IUS-12 (p=0.003). The mediation analysis revealed that dysfunctional beliefs about sleep did not directly affect coronavirus-related concerns. Instead, this relationship was fully mediated by anxiety toward coronavirus, coronavirus reassurance-seeking behavior, and intolerance of uncertainty. The cognitive-behavioral model of COVID-related hypochondriasis is feasible for patients with cancer. Anxiety toward coronavirus, coronavirus reassurance-seeking behavior, and intolerance of uncertainty are positively correlated with coronavirus-related concerns. Additionally, dysfunctional beliefs about sleep may mediate this relationship.
Background Parents caring for children with cancer face substantial physical, emotional, social, and financial challenges, especially in low- and middle-income countries like India. Objective In this study, we aimed to … Background Parents caring for children with cancer face substantial physical, emotional, social, and financial challenges, especially in low- and middle-income countries like India. Objective In this study, we aimed to assess caregiver burden and quality of life among parents of children with cancer in the Indian context, and to describe the socio-cultural and economic factors influencing these outcomes. Methods In this cross-sectional study, 200 primary caregivers of paediatric oncology patients were assessed using the Zarit Burden Interview (ZBI), WHOQoL-BREF, and the Multidimensional Scale of Perceived Social Support (MSPSS). Socio-demographic and clinical data were collected through interviews and review of medical records. Results The median ZBI score was 66 (IQR 23.5), with 66% of caregivers experiencing severe burden. Caregiver burden was higher among mothers, caregivers with lower education, those unemployed, and those living in nuclear families. Burden negatively correlated with duration of illness (r = −0.75, P &lt; 0.05) and quality of life across all domains. Perceived social support was low, particularly among caregivers living alone or in nuclear families. Conclusions High caregiver burden and impaired quality of life were observed among caregivers in a resource-limited setting. Strengthening social support and implementing family-centred interventions may help reduce the burden and improve outcomes.
Abstract Purpose Health-related quality of life (HRQoL) is a commonly assessed patient-reported outcome that might be especially relevant for the adolescent and young adult (AYA) cancer survivor population. However, limited … Abstract Purpose Health-related quality of life (HRQoL) is a commonly assessed patient-reported outcome that might be especially relevant for the adolescent and young adult (AYA) cancer survivor population. However, limited data is available regarding the HRQoL of long-term AYA cancer survivors compared to a matched normative population and associated factors. Methods AYA cancer survivors (18–39 years at initial diagnosis; 5–20 years post-diagnosis), identified by the Netherlands Cancer Registry (NCR), were invited for participation in the SURVAYA questionnaire study. Participants self-reported their socio-demographics, health-related conditions, healthcare use, positive life outlook, and HRQoL (EORTC QLQ-C30). An age- and sex-matched normative population was randomly composed. Clinical data were retrieved from the NCR. Results A total of 3745 AYAs (on average 32 years old at diagnosis, 12 years post-diagnosis) and 517 peers without cancer (normative population) were included. All functioning scales showed significant differences, with AYA cancer survivors scoring lower: cognitive (77.9 vs. 92.2), role (83.2 vs. 91.3), social (87.9 vs. 93.6), physical (91.5 vs. 94.3), and emotional functioning (79.5 vs. 83.4). No significant difference was observed in global QoL. Female sex, lower educational attainment, older age at diagnosis, several tumor types, radiotherapy, chemotherapy, higher stage, more health-related conditions, and more healthcare visits were negatively associated with several HRQoL scales. Conclusions AYA cancer survivors face worse HRQoL compared to peers in all functioning domains, but it is most pronounced in cognitive functioning. This study underlines the need for timely cancer survivorship care to regain, improve, and ensure the quality of life of current and future AYA cancer survivors. Clinical trial registration. NCT05379387.
Abstract Purpose Exercise-induced symptoms (EIS) are common in children and understudied in childhood cancer survivors (CCS). We assessed the prevalence of EIS in CCS and identified associated risk factors. Methods … Abstract Purpose Exercise-induced symptoms (EIS) are common in children and understudied in childhood cancer survivors (CCS). We assessed the prevalence of EIS in CCS and identified associated risk factors. Methods We included children aged 6-20 years who had been diagnosed with cancer ≥ 1 year(s) before study entry, had completed cancer treatment, received pediatric oncology follow-up care, and were treated with systemic anticancer treatment, chest surgery, radiotherapy, or hematopoietic stem cell transplantation. Participants completed a questionnaire on respiratory symptoms and lifestyle. To explore risk factors of EIS, we used multivariable logistic regression and calculated population attributable fractions (PAFs). Results Of 196 participants (median age 14 years [IQR 10-17]), 46 (24%) reported EIS, including dyspnea (14%), cough (12%), and wheeze (7%). EIS were more common among females (OR 2.5, 95%CI: 1.1-5.9), older survivors (OR 1.2 per year, 95%CI: 1.1-1.3,), and those with obesity (OR 4.7, 95%CI: 1.1-19.6), asthma (OR 10.1, 95%CI: 3.3-31.2), and physical inactivity (OR 2.9, 95%CI: 1.3-6.6). Chest-directed radiotherapy tended also to increase the risk (OR 2.4, 95%CI: 0.6-9.2). Twenty percent of EIS were attributable to asthma, 18% to physical inactivity, and 7% to obesity, with a combined PAF of 44%. Conclusions EIS affect one in four CCS and are primarily associated with risk factors common in the general population rather than cancer treatments. Implications for Cancer Survivors Clinical investigation and management of common causes of EIS—particularly asthma, physical inactivity, and obesity—could reduce symptom burden and support long-term health in CCS.
Study aimed to investigate effect of therapeutic play on quality of life and symptom control of children with cancer. Participants were 15 children, aged 6-12, who were diagnosed with cancer, … Study aimed to investigate effect of therapeutic play on quality of life and symptom control of children with cancer. Participants were 15 children, aged 6-12, who were diagnosed with cancer, and treated in oncology-hematology clinics. Data were collected from two university hospitals between 2019-2021. It was quasi-experimental clinical research with single-group pretest-posttest model. Pediatric Patient Information Form, PedsQL Cancer Module, and Visual Analog Scale for symptoms were used as data collection tools. Mean PedsQL Cancer Module total score of children was 57.97±14.83 before therapeutic play and 62.08±12.97 after therapeutic play. There was no statistical difference between time-dependent median PedsQL Cancer Module total scores of children (p&gt;0.05). According to Visual Analog Scale for symptoms, there was statistically significant difference in all symptoms after therapeutic play intervention (p˂0.05). Study showed that therapeutic play affected symptom control of pediatric patients receiving long cancer treatment. No statistically significant difference was found between scores children obtained from PedsQL Cancer Module Child Report before, during, and after therapeutic play intervention. However, PedsQL Cancer Module Child Report total score increased.