Late outcomes of adult survivors of childhood non-Hodgkin lymphoma: A report from the St. Jude Lifetime Cohort Study.

BACKGROUND: Survivors of childhood non-Hodgkin lymphoma (NHL) are at increased risk for chronic health conditions. The objective of this study was to characterize health conditions, neurocognitive function, and physical performance among a clinically evaluated cohort of 200 childhood NHL survivors. METHOD: Chronic health and neurocognitive conditions were graded as per a modified version of the National Cancer Institute Common Terminology Criteria for Adverse Events (CTCAE) and impaired physical function defined as performance < 10th percentile of normative data. Multivariable regression was used to investigate associations between sociodemographic characteristics, therapeutic exposures, and outcomes. RESULTS: Survivors were a median age of 10 years (range 1-19) at diagnosis and 34 years (range 20-58) at evaluation. Eighty-eight (44%) received radiation, 46 (23%) cranial radiation, and 69 (35%) high-dose methotrexate. Most prevalent CTCAE Grades 3-4 (severe life-threatening) conditions were obesity (35%), hypertension (9%), and impairment of executive function (13%), attention (9%), and memory (4%). Many had impaired strength (48%), flexibility (39%), muscular endurance (36%), and mobility (36%). Demographic and treatment-related factors were associated with the development of individual chronic diseases and functional deficits. CONCLUSIONS: Clinical evaluation identified a high prevalence of chronic health conditions, neurocognitive deficits, and performance limitations in childhood NHL survivors.

Seroprevalence of Measles (Rubeola) Antibodies in Childhood Cancer Survivors.

Background: Measles is reemerging as a public health threat, raising important questions about disease vulnerability among childhood cancer survivors. This secondary analysis assessed the seroprevalence of anti-measles immunoglobulin G (IgG) antibodies as a marker of immune status in survivors of childhood cancer and associated demographic/treatment variables. Method: Participants were childhood cancer survivors who were free of active disease, having routine blood studies drawn, and could provide documentation of having received two doses of measles, mumps, and rubella vaccine before their cancer diagnosis. Patient record review documented demographic and treatment variables. Antimeasles (rubeola) IgG antibody seroprevalence was assessed by enzyme immunoassay for vaccine-specific antibodies. Results: Of 270 survivors evaluated, 110 (42%) were female, 196 (75%) were White, and 159 (61%) were leukemia/lymphoma survivors. Of these 262, 110 (42%) had negative measles seroprevalence, suggesting loss of immunity. Conclusion: Measles antibody surveillance and the need for reimmunization for survivors of childhood cancer survivors outside the transplant setting remains controversial. Our analysis indicates that a substantial proportion of survivors lose vaccine-related immunity to measles. Pediatric oncology nurses play important roles in educating cancer survivors regarding their risk of measles infection, evaluating the need for reimmunization, correcting misinformation about vaccine safety and effectiveness, and working to optimize community herd-based immunity.

Health status in long-term survivors of pediatric craniopharyngiomas.

Craniopharyngiomas are the third most common pediatric brain tumor and most common pediatric suprasellar tumor. Contemporary treatment of craniopharyngiomas uses limited surgery and radiation in an effort to minimize morbidity, but the long-term health status of patients treated in this fashion has not been well described. The purpose of this study was to analyze the health status of long-term survivors of pediatric craniopharyngioma treated primarily with radiation and conservative surgical resection. Medical records of all long-term survivors of craniopharyngioma treated at St. Jude Children's Research Hospital and then transferred to the long-term follow-up clinic were reviewed. The initial cohort comprised 55 patients. Of these, 51 (93%) were alive at the time of this analysis. The median age at diagnosis was 7.1 years (range, 1.2-17.6 years), and 29 (57%) were male. At the time of analysis, the median survival was 7.6 years (range, 5.0-21.3 years). Diagnosis and treatment included surgical biopsy, resection (n = 50), and radiation therapy (n=48). Only 1 patient received chemotherapy. Polyendocrinopathy was the most common morbidity, with hypothyroidism (96%), adrenocorticotropic hormone deficiency (84%), and diabetes insipidus (53%) occurring most frequently. Half of the patients were hypogonadal, and 33 (65%) were overweight or obese. The most common neurologic problems included shunt dependence (37%), seizures (28%), and headaches (39%). Psychological and educational deficits were also identified in a significant number of these individuals. Despite efforts to reduce morbidity in these patients, many survivors remain burdened with significant medical complications. In a small percentage of patients, complications may result in death even during extended remission of craniopharyngioma. Because of the broad spectrum or morbidities experienced, survivors of craniopharyngioma continue to benefit from multidisciplinary care.

The changing burden of long-term health outcomes in survivors of childhood acute lymphoblastic leukaemia: a retrospective analysis of the St Jude Lifetime Cohort Study.

BACKGROUND: Treatment for childhood acute lymphoblastic leukemia has evolved over the past five decades, with moderation of traditional chemotherapy and radiotherapy and the introduction of targeted immune-based and cellular-based therapies. The affect of these changes on late health outcomes has not been assessed. Using data from the The St Jude Lifetime (SJLIFE) Cohort, we aimed to characterise the magnitude of morbidity and patterns of late health outcomes among survivors of childhood acute lymphoblastic leukaemia treated over time. METHODS: The St Jude Lifetime (SJLIFE) Cohort is a retrospective cohort study with prospective follow-up and ongoing data accrual designed to facilitate longitudinal, clinically-based assessment of health outcomes among survivors of paediatric malignancies. 980 survivors included in this analysis were diagnosed with paediatric acute lymphoblastic leukaemia at St Jude Children's Research Hospital (SJCRH) between Aug 28, 1963, and July 19, 2003, were aged 18 years old and older at enrolment, had a minimum follow-up of 10 years after diagnosis, and completed an initial on-campus SJLIFE assessment as of data cutoff (June 30, 2015). 272 community control participants, matched to survivors on 5-year age blocks in each sex, were recruited for comparison. Cumulative chemotherapy and radiation dose exposures and major medical events during and after therapy were retrieved from the medical records of the survivors. History or physical examination, laboratory analysis, physical fitness, and neurocognitive testing were done. Health conditions were graded according to a modified version of the Common Terminology Criteria for Adverse Events. Neurocognitive domains of attention (Trial Making Test Part A and Conner's Continuous Performance Test-II) and executive function (Trail Making Test Part B, Controlled Oral Word Association Test, and Wechsler Adult Intelligence Scale-III Digit Span Test Backward) were measured and age-adjusted Z scores were calculated. Mean cumulative count was used to calculate the age-standardised cumulative burden of health conditions over time. This cohort study is registered at ClinicalTrials.gov, number NCT00760656. FINDINGS: 980 survivors of acute lymphoblastic leukaemia (50% women, median age at diagnosis 5 years [IQR 3·1-9·1 years], and median time from diagnosis of 30·0 years [22·7-36·3]) had a median age of 35·8 years (29·4-42·9) at assessment compared with 35·1 years (28·7-42·6) for 272 controls. Survivors had significantly more growth hormone deficiency, hypogonadism, and neuropathy than controls. By age 30 years, survivors of acute lymphoblastic leukaemia had, on average, 5·4 (95% CI 5·1-5·8) grade 1-4 health conditions, including 3·2 (2·9-3·4) grade 2-4 health conditions, compared with 2·0 (CI 1·7-2·2) grade 1-4 and 1·2 (1·03-1·4) grade 2-4 health conditions among controls. The cumulative burden of grade 2-4 health conditions involved multiple organ systems for survivors treated on protocols between 1962-91, but after elimination of cranial radiotherapy for children with acute lymphoblastic leukaemia, conditions now predominately include musculoskeletal and endocrine disorders for survivors on protocols between 1991-2007. INTERPRETATION: Although changes in paediatric acute lymphoblastic leukaemia treatment protocols have improved overall survival, the burden of late morbidity remains high for these patients. We show that the pattern of late toxic effects has markedly changed over time, with survivors having a reduction in health conditions that are immediately life-threatening, however, maintaining health status and quality of life for survivors of paediatric acute lymphoblastic leukaemia requires continued medical surveillance, counselling, and lifestyle modifications. FUNDING: US National Cancer Institute and the American Lebanese Syrian Associated Charities.

Workplace experiences and turnover intention among adult survivors of childhood cancer.

PURPOSE: The purpose of this study was to investigate workplace experiences and turnover intention (consideration of leaving or changing a job) and to examine factors associated with turnover intention among survivors. METHODS: Adult survivors of childhood cancer with a history of employment (n = 289) completed measures of workplace experiences (n = 50, 18-29 years; n = 183, 30-44 years; n = 56; > 45 years of age at follow-up). Turnover intention was assessed using three items from the Job Satisfaction Scale. Responses were dichotomized as reflecting high vs. low turnover intention. Path analysis was used to estimate the influence of demographic characteristics, treatment exposures (cranial radiation therapy [CRT]), and workplace experiences on turnover intention. RESULTS: Thirty percent of survivors reported high turnover intention (95% CL, 25 to 36%). Exposure to CRT (P = 0.003), older attained age (P < 0.001), experiencing formal workplace discrimination (P = 0.008), and having lower continuance (P < 0.001) or affective commitment (P < 0.001) were associated with high turnover intention among survivors. Informal discrimination, mediated through job satisfaction, also influenced survivors' reported intent to leave their jobs. CONCLUSIONS: One third of adult survivors of childhood cancer report turnover intention, which is related to their cancer treatment, but more temporally proximal, workplace discrimination. Additional research is needed to understand the consequences of turnover intention among survivors. IMPLICATIONS FOR CANCER SURVIVORS: Survivors and their health care providers should be aware of legislative policies related to workplace discrimination (e.g., American with Disabilities Act) and related implications for job turnover.

Retention of survivors of acute lymphoblastic leukemia in a longitudinal study of bone mineral density.

Attrition in longitudinal studies of survivors of childhood cancer reduces these studies' statistical power, introduces bias and threatens internal and external validity. This study investigated the variables associated with dropout of survivors of acute lymphoblastic leukemia in a trial investigating the effect of vitamin D and calcium supplementation and nutritional counseling on bone mineral density (BMD). Twenty-five participants withdrew from the study. Common reasons given for withdrawing were intolerance of the study drug, family hardship and schedule conflicts. Few statistically and clinically significant differences identified participants who completed the study. Nurses need to be aware of the reasons that participants withdraw from clinical trials, as they are in a strategic position to encourage patients to participate in health promotion studies.

Life satisfaction in adult survivors of childhood brain tumors.

Adult survivors of childhood brain tumors experience multiple, significant, lifelong deficits as a consequence of their malignancy and therapy. Current survivorship literature documents the substantial impact such impairments have on survivors' physical health and quality of life. Psychosocial reports detail educational, cognitive, and emotional limitations characterizing survivors as especially fragile, often incompetent, and unreliable in evaluating their circumstances. Anecdotal data suggest some survivors report life experiences similar to those of healthy controls. The aim of our investigation was to determine whether life satisfaction in adult survivors of childhood brain tumors differs from that of healthy controls and to identify potential predictors of life satisfaction in survivors. This cross-sectional study compared 78 brain tumor survivors with population-based matched controls. Chi-square tests, t tests, and linear regression models were used to investigate patterns of life satisfaction and identify potential correlates. Results indicated that life satisfaction of adult survivors of childhood brain tumors was similar to that of healthy controls. Survivors' general health expectations emerged as the primary correlate of life satisfaction. Understanding life satisfaction as an important variable will optimize the design of strategies to enhance participation in follow-up care, reduce suffering, and optimize quality of life in this vulnerable population.

Marriage, employment, and health insurance in adult survivors of childhood cancer.

INTRODUCTION: Adult survivors of childhood cancer are at risk for disease- and therapy-related morbidity, which can adversely impact marriage and employment status, the ability to obtain health insurance, and access to health care. Our aim was to identify factors associated with survivors' attainment of these outcomes. METHODS: We surveyed 1,437 childhood cancer survivors who were >18 years old and >10 years past diagnosis. We compared our cohort's data to normative data in the Medical Expenditure Panel Survey and the U.S. Census Bureau's Current Population Surveys. Respondents were stratified by hematologic malignancies, central nervous system tumors, or other solid tumors and by whether they had received radiation therapy. RESULTS: Most respondents were survivors of hematologic malignancies (71%), white (91%), and working full-time (62%); 43% were married. Compared with age- and sex-adjusted national averages, only survivors of hematologic malignancies who received radiation were significantly less likely to be married (44 vs. 52%). Full-time employment among survivors was lower than national norms, except among survivors of hematologic malignancies who had not received radiation therapy. The rates of coverage of health insurance, especially public insurance, were higher in all diagnostic groups than in the general population. While difficulty obtaining health care was rarely reported, current unemployment and a lack of insurance were associated with difficulty in obtaining health care (P < 0.05 and P < 0.001, respectively). CONCLUSIONS/IMPLICATIONS FOR CANCER SURVIVORS: Subgroups of cancer survivors do experience long-term differences in functional outcomes that should be addressed early. Survivors who are unmarried, unemployed, and uninsured experience difficulty accessing health care needed to address long-term health concerns.

Creating the basis for a breast health program for female survivors of Hodgkin disease using a participatory research approach.

PURPOSE/OBJECTIVES: To learn from female survivors of Hodgkin disease about their perceptions of their current health status and future health risks, self-care practices to prevent or diminish health risks, and what kind of breast health program could benefit them, including the most effective methods and optimal times for learning about breast health. DESIGN: Participatory research using focus groups. SETTING: Urban pediatric cancer center. SAMPLE: 1 African American and 19 Caucasian female survivors of Hodgkin disease aged 16-26 years, diagnosed at least two years before the start of the study, and treated with mantle radiation therapy. Participants were recruited during visits to an outpatient clinic. METHODS: Six open-ended questions were asked during three separate focus group sessions. Transcribed data were evaluated by content analysis techniques and analyzed to identify common themes. MAIN RESEARCH VARIABLES: Current health status and perceived health risks, current health practices, and effective methods and timing for breast health teaching. FINDINGS: Survivors reported feeling damaged by their cancer and its treatment and perceived that they were at risk for breast cancer. Self-care and risky behaviors also were reported. Internal influences (e.g., fear) and external influences (e.g., family) motivated survivors to participate in health promotion activities. Effective methods identified for learning about breast health included having access to other survivors, being respected as an adult, and having one-on-one staff teaching and peer support. The preferred timing of teaching varied, but survivors generally supported a gradual provision of information. CONCLUSIONS: A positive listening environment is important for developing a breast health program for survivors. An essential first step is to create an opportunity for survivors to tell about their experiences with cancer, including its impact on their lives. Information regarding breast health must be provided in multiple formats during and after treatment if good practices are to be undertaken. IMPLICATIONS FOR NURSING: The provision of adequate information during and after therapy as well as peer counseling in a positive listening environment are important in helping survivors participate in health promotion activities.