Quality of life in long-term childhood cancer survivors and the relation of late effects and subjective well-being (original) (raw)
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SAGE Open, 2013
The present study aims to investigate the relationship between severity of late effects and subjective quality of life of childhood cancer survivors in different age brackets. The sample consisted of 147 cancer survivors (70 boys and 77 girls) aged 8 to 18 who were in remission 2 to 5 years. The analyses were carried out separately for younger (8-12 years) and older (13-19 years) age groups. Cancer survivors were asked to complete Minnesota-Minneapolis Quality of Life Instrument (MMQL) as well as other methods of measuring involvement in everyday life activities and parent-child interactions Social And Health Assessment (SAHA) were used. Severity of late effects was assessed on a 4-point scale in accordance with Common Terminology Criteria for Adverse Events v3.0. While severity of late effects correlated positively only with parental warmth in younger age bracket, there were many relationships between severity of late effects and quality of life in older age bracket. The difference between the two age brackets is explained by the fact that adolescents are able to assess the impact of the disease.
Late effects in adult survivors of childhood cancer: the need for life-long follow-up
Annals of Oncology, 2007
Background: To assess health status and health-related quality of life (HRQoL) in childhood cancer survivors who were not involved in regular long-term follow-up. Patients and methods: One hundred and twenty-three long-term survivors, median age 33 (19-50) years, followup 27 (9-38) years, were recalled to the long-term follow-up clinic. Most of them were treated in the period 1970-1990. Late effects were graded using the Common Terminology Criteria for Adverse Events, version 3 (CTCAEv3). HRQoL was assessed by RAND-36. Socioeconomic factors were compared with data from Statistics Netherlands (CBS). Results: Grade 1-2 late effects were found in 54% of the survivors, grade 3-4 in 39%, two or more late effects in 70% and grade 2-4 previously unknown late effects in 33%. Survivors had significantly lower scores on RAND-36 compared with controls. Conclusions: As nearly 40% of these long-term childhood cancer survivors suffer from moderate to severe late effects and 33% had previously unknown late effects it is worthwhile recalling these patients to follow-up. Where and by whom this follow-up can best be done is still a question that needs to be answered.
Cancer Epidemiology Biomarkers & Prevention, 2008
Purpose: Psychological outcomes, health-related quality of life (HRQOL), and life satisfaction are compared between 7,147 adult childhood cancer survivors and 388 siblings from the Childhood Cancer Survivor Study, examining demographic and diagnosis/treatment outcome predictors. Methods: Psychological distress, HRQOL, and life satisfaction were measured by the Brief Symptom Inventory-18, the Medical Outcomes Survey Short Form-36, and Cantril Ladder of Life, respectively. A self-report questionnaire provided demographic/health information and medical record abstraction provided cancer/treatment data. Siblings' and survivors' scores were compared using generalized linear mixed models, and predictor effects of demographic and cancer/treatment variables were analyzed by multivariate logistic regression. Results: Although survivors report greater symptoms of global distress (mean, 49.17; SE, 0.12) than do siblings (mean, 46.64; SE, 0.51), scores remain below population norms, indicating that survivors and siblings remain psychologically healthy. Survivors scored worse than siblings on overall physical (51.30 F 0.10 versus 54.98 F 0.44; P < 0.001) but not emotional aspects of HRQOL, but effect sizes were small, other than in vitality. Most survivors reported present (mean, 7.3; SD, 0.02) and predicted future (mean, 8.6; SD, 0.02) life satisfaction. Risk factors for psychological distress and poor HRQOL were female gender, lower educational attainment, unmarried status, annual household income <$20,000, unemployment, lack of medical insurance, having a major medical condition, and treatment with cranial radiation. Conclusion: Compared with population norms, childhood cancer survivors and siblings report positive psychological health, good HRQOL, and life satisfaction. The findings identify targeted subgroups of survivors for intervention. (Cancer Epidemiol Biomarkers Prev 2008;17(2):435 -46) Cancer Epidemiol Biomarkers Prev
Health-related quality of life in young survivors of childhood cancer
Quality of Life Research, 2015
Purpose Childhood cancer and its treatment may affect health-related quality of life (HRQoL) in childhood cancer survivors, but population-based studies in young survivors are scarce. We aimed to: (1) compare HRQoL between young survivors and population norms and (2) find factors that influence parent-reported HRQoL in survivors. Methods As part of the Swiss Childhood Cancer Survivor Study, a questionnaire was mailed to parents of survivors aged 8-16 years, registered in the Swiss Childhood Cancer Registry, C5 years after diagnosis. We used the KIDSCREEN-27 instrument to compare self-and parent-reported HRQoL between survivors (N = 425) and standardized norms in the five dimensions of physical well-being, psychological well-being, autonomy, peers and school environment (mean = 50, SD = 10). We then used multivariable linear regressions to test the influence of socio-demographic and cancer-related factors on HRQoL. Results Self-reported physical well-being was comparable to norms. Other HRQoL dimensions were higher than norms, with the highest mean = 52.2 (p \ 0.001) for school environment. Parent-reported HRQoL in survivors was comparable to population norms; only physical well-being was lower (mean = 47.1, p \ 0.001), and school environment was higher (mean = 51.1, p = 0.035). Parent-reported HRQoL was lower for survivors of CNS tumors (physical well-being: b =-5.27, p = 0.007; psychological well-being: b =-4.39, p = 0.044; peers b =-5.17, p = 0.028), survivors of neuroblastoma (psychological well-being b =-5.20, p = 0.047), and survivors who had had a relapse (physical well-being b =-5.41, p = 0.005). Conclusions Assessing HRQoL during follow-up care, with a focus on physical well-being, specific diagnoses (e.g., CNS tumor) and late complications (e.g., relapse) might help to early identify problems and offer support to survivors with reduced HRQoL.
Pediatric Blood & Cancer, 2010
Due to advances in medicine there has been a considerable improvement in childhood cancer survival rates. Today three out of four children who have been diagnosed with cancer are cured [1]. In the growing population of long-term survivors of childhood cancer treatment related health problems have been widely acknowledged [2-5]. Furthermore, the literature reveals negative impacts on close relationships and life goals such as education and work as well as worries about illness recurrence and uncertainty about the future [6,7]. However, other studies of survivors report the same or better quality of life [8,9] and psychological functioning [6,10] as that found in comparison groups. Nevertheless, the importance of following up healthcare needs after childhood cancer is highlighted owing to physical problems that may have negative consequences for the individual [11]. Healthcare providers' inability to meet such needs was reported in a Swedish study, where 30% of the long-term survivors of childhood cancer were dissatisfied with the follow-up visits they had been offered [12]. There is as yet no commonly accepted definition of what constitutes quality of life nor is there a 'gold standard' measure. Assessing quality of life generally includes the individual's appraisal of different dimensions, such as physical, emotional and social functioning [13]. Measures of quality of life are often health related and standardized and are designed to assess the impact of illness and treatment on a person's life [14]. An alternative approach to assessing quality of life is to use an individualized measure that enables identification and evaluation of aspects considered important in life [15]. Thus, using such an approach it may be possible to detect the individual's perspective on factors that influences quality of life factors not necessarily detected with standardized measures. It is clear that many survivors of childhood cancer experience ongoing physical health problems. However, there is less knowledge about how young adult survivors perceive their current lives and about what influence health status has on their quality of life. Accordingly, the present objective was to describe quality of life in relation to self-reported health status and socio-demographic characteristics among long-term survivors of childhood cancer as compared to that among a sample from the general population.
Quality of Life in Adult Survivors of Childhood Cancer
Social Work in Health Care, 1999
Sixty-four adult survivors of childhood cancer, recruited via Israel's largest pediatric cancer treatment center, participated in a multi-dimensional assessment of long-term adjustment and quality of life in the domains of educational achievement, employment status, military service, family status, health, and psychological well-being. Subjects had been diagnosed with cancer prior to age 18, were three years or more off therapy with no evidence of disease, and over 18 years old at the time of the study. Data from structured interviews were compared to responses on similar items from a control group with no history of serious illness during childhood, matched for age, sex, and parental education levels. Results indicated an overall pattern of integration into the social mainstream, with similar objective levels of achievement for survivors and controls for most measures of education, employment, significant relationships, and psychological well-being. Results also indicated certain areas of disadvantage, such as military recruitment difficulties, lower income levels, and higher rates of workplace rejection. Significantly, almost half of the survivor sample reported subjective feelings that their illness experience had impaired their achievement in several domains. Quality of life is considered an important outcome parameter in terms of clinical decision making as well as in guiding preventive and supportive
Journal of Clinical Oncology, 2009
Psychological quality of life (QOL), health-related QOL (HRQOL), and life satisfaction outcomes and their associated risk factors are reviewed for the large cohort of survivors and siblings in the Childhood Cancer Survivor Study (CCSS). This review includes previously published manuscripts that used CCSS data focused on psychological outcome measures, including the Brief Symptom Inventory (BSI-18), the Medical Outcomes Survey Short Form-36 (SF-36), the Cantril Ladder of Life, and other self-report questionnaires. Comparisons and contrasts are made between siblings and survivors, and to normative data when available, in light of demographic/health information and abstracted data from the medical record. These studies demonstrate that a significant proportion of survivors report more symptoms of global distress and poorer physical, but not emotional, domains of HRQOL. Other than brain tumor survivors, most survivors report both good present and expected future life satisfaction. Risk ...
BMC Cancer
Background Comprehensive insight in the longitudinal development of health-related quality of life (HRQOL) after childhood cancer diagnosis could improve quality of care. Thus, we aimed to study the course and biopsychosocial determinants of HRQOL in a unique national cohort of children with cancer. Methods HRQOL of 2154 children with cancer was longitudinally reported (median: 3 reports) between diagnosis and 5 years after, using the pediatric quality of life inventory generic core scales (PedsQL). HRQOL was modelled over time since diagnosis using mixed model analysis for children 2–7 years (caregiver-reports) and ≥ 8 years (self-reports). Differences in the course between hematological, solid and central nervous system malignancies were studied. Additional associations of demographics, disease characteristics (age at diagnosis, relapse, diagnosis after the national centralization of childhood cancer care and treatment components) and caregiver distress (Distress thermometer) were...
PEDIATRICS, 2005
Objective. To assess the health-related quality of life (HRQL) of 8-to 12-year-old children undergoing therapy for cancer or childhood-cancer survivors by using the Minneapolis-Manchester Quality of Life-Youth Form (MMQL-YF), a comprehensive, multidimensional self-report instrument with demonstrable reliability and validity. Design, Setting, and Patients. The MMQL-YF consists of 32 items comprising 4 scales: physical functioning, psychologic functioning, physical symptoms, and outlook on life. Scoring on the MMQL ranges from 1 to 5; 5 indicates maximal HRQL. An overall quality-of-life (QOL) score is also computed. By using a cross-sectional study design, the MMQL-YF was administered to 90 offtherapy cancer survivors, 72 children with cancer undergoing active therapy, and 481 healthy children without a history of cancer or other chronic disease. Results. Compared with healthy controls, children actively undergoing cancer treatment report low overall QOL, physical functioning, and outlook-on-life scores. However, off-therapy survivors report a superior overall QOL, compared with age-matched healthy controls. Conclusions. Young survivors of childhood cancer report a favorable HRQL relative to healthy controls. These results are reassuring, suggesting that this group of survivors may have been too young to encounter some of the negative psychosocial impacts of cancer and its treatment. Pediatrics 2005;115:435-442; health-related quality of life, childhood-cancer survivors.