Quality of life and late-effects among childhood brain tumor survivors: a mixed method analysis.

BACKGROUND: Reports on the quality of life (QOL) of childhood brain tumor (BT) survivors have been inconsistent. As cognitive limitations may restrict their participation in questionnaire-based studies, our aim was to evaluate in depth the QOL with a mixed-method analysis. METHODS: The 5-year survivors of childhood BTs born in 1975-2000 and alive in 2010 were identified via the Finnish Cancer Registry and treating clinics. Twenty-one survivors (32%) participated in a mixed-method analysis including 15D (a general health-related QOL questionnaire), the Beck Depression Inventory, and a qualitative semi-structured interview. RESULTS: Based on the 15D-questionnaire, the BT survivors had an impaired health-related QOL in several dimensions such as speech and usual activities. On the other hand, no difference was found in other dimensions such as distress or vitality. A majority (95%) of the survivors showed no increased risk for depression. The qualitative interview revealed that the most important aspects affecting the QOL of the survivors were positive mental growth, negative conceptions concerning illness, living one day at a time, age at diagnosis, time since diagnosis, social relationships, learning disabilities and limitations in vocational opportunities, limitations in independent life, and changed understanding of the term 'health'. CONCLUSIONS: Childhood BT survivors have heterogeneous attitudes on QOL. The survivors assess social aspects to be more important than functionality for their QOL. Social concerns should actively be brought up to offer support for those with significant social difficulties. Interventions for social difficulties should be more actively developed. Copyright © 2015 John Wiley & Sons, Ltd.

Increased prevalence of chronic fatigue among survivors of childhood cancers: a population-based study.

BACKGROUND: Fatigue is prevalent in adult cancer survivors but less studied in childhood cancer survivors. Aims were to assess fatigue levels, prevalence of chronic fatigue (CF) and the association of CF with health-related quality of life (HRQoL) in survivors of acute myeloid leukemia (AML), infratentorial astrocytoma (IA), and Wilms tumor (WT) in childhood. PROCEDURE: Seventy percent (398/567) of Nordic patients treated for AML, IA, and WT between 1985 and 2001 at age >1 year responded to a postal survey, encompassing the Fatigue Questionnaire and the Short Form 36 (SF-36). Participants were divided into two groups at time of study; younger (YG, 13-18 years) and older (OG, 19-34 years). Respondents (19-34 years, n = 763) from a Norwegian general population (GP) survey served as controls for the OG. RESULTS: The OG [mean age was 24 years (SD 3.3)] had higher fatigue levels compared to the YG and the GP, especially the females (P < 0.05). There was also a higher prevalence of CF in the OG than in the GP (14 vs. 6%, P < 0.001). Regardless of diagnosis, the OG with CF had poorer physical health (P < 0.05) on the SF-36 but better mental health (P < 0.05 and P = 0.001) relative to controls with CF. CONCLUSIONS: The prevalence of CF is higher among Nordic survivors of AML, IA, and WT than GP controls of similar age. CF is associated with impaired HRQoL in survivors. However, they reported better mental health than CF GP controls. This might indicate different underlying mechanisms of CF in the two populations.

Fatigue in young survivors of extracranial childhood cancer: a Finnish nationwide survey.

PURPOSE/OBJECTIVES: To evaluate self-reports of fatigue by young cancer survivors (aged 11-18 years), to compare young survivors' fatigue scores with the scores of a healthy control group and of the parent proxy evaluation, and to analyze whether demographic or disease-related factors are associated with young survivors' fatigue. DESIGN: Cross-sectional quantitative study. SETTING: An urban hospital in southwestern Finland. SAMPLE: 384 survivors diagnosed with an extracranial malignancy at age 16 or younger, who have survived four or more years postdiagnosis, and who are free of cancer. General matched population controls were randomly selected from the Finnish Population Registry. METHODS: Demographic data and a self-report written fatigue questionnaire. MAIN RESEARCH VARIABLES: Total fatigue (TF), general fatigue (GF), sleep or rest fatigue (SF), and cognitive fatigue. FINDINGS: The control populations reported significantly more issues with TF, GF, and SF than did the survivor population. In survivors, older age, the need for remedial education at school, and a sarcoma diagnosis were associated with increasing fatigue, whereas female gender, better school grades, and greater health-related quality-of-life (HRQOL) scores were associated with lower fatigue. The study variables explained 49%-65% of the variation in fatigue scores. CONCLUSIONS: Although survivors and their matched controls seem to have similar fatigue, subgroups of survivors do experience excessive fatigue, which may have an impact on their HRQOL. IMPLICATIONS FOR NURSING: This study increases the knowledge about fatigue levels of young survivors of extracranial malignancies and identifies the need for instruments specifically designed to assess fatigue in this population. The healthcare team should pay attention to the fatigue level of young survivors, particularly SF.

Self-reported health-related quality of life of children and adolescent survivors of extracranial childhood malignancies: a Finnish nationwide survey.

PURPOSE: The purpose of this Finnish total cohort survey was to assess and compare the self-reported health-related quality of life (HRQL) in childhood cancer survivors to that of matched controls, to analyse demographic and disease-related factors explaining survivors' HRQL, and to compare the results of two different HRQL instruments, 16D/17D and PedsQL™. METHODS: Questionnaires were mailed to 384 childhood cancer survivors and their randomly selected gender-, age- and living place-matched controls. Eligible survivors (aged 11-18 years) had been treated for extracranial malignancies ≤16 years of age, had survived ≥4 years after the diagnosis, and were currently free of cancer. RESULTS: Of them, 203 (52.9%) survivors and 266 (30.4%) controls replied. Survivors reported higher HRQL than their controls. Diagnostic group, additional non-cancer diagnosis, need of remedial education, and self-rated unhappiness correlated significantly with HRQL. The survivors of Wilms tumor, or neuroblastoma, had lower HRQL scores than the reference group (leukemia). The studied variables explained only 28% of the variation in HRQL scores among survivors. Instrument correlations were moderate (R = 0.40-0.65). CONCLUSIONS: Our findings suggest that the diagnosis of Wilms tumor or neuroblastoma may carry substantial risks for lower HRQL. The available background variables, however, explained less than one-third of the variation in the HRQL scores. Thus, other factors than demographic or cancer-related seem to play a significant role as determinants of HRQL.

Cancer related factors do not explain the quality of life scores for childhood cancer survivors analysed with two different generic HRQL instruments.

THE AIMS: The aims of this Finnish total cohort survey were to compare the health related quality of life (HRQL) of childhood cancer survivors with for age, gender and place of residence matched controls, to analyse whether the disease-related factors do explain the survivors scores, and to evaluate the similarity of HRQL scores gained with two different generic instruments. METHODS: Questionnaires (SF-36 version 2 and the 15D) were mailed to 468 survivors and their controls. RESULTS: A total of 271 survivors and 329 controls replied. The survivors rated with both instruments their HRQL in most areas as high or higher than their controls. Mobility score was, however, significantly lower for survivors than controls. Females rated their HRQL lower than respective males. Self-rated happiness had the highest effect in explaining the variation of 15D and mental component summary (MCS) scores. Survivors treated for osteosarcoma or with stem cell transplantation (SCT) rated their physical HRQL significantly lower than the others. SCT treatment indicated significantly lower MCS scores than the reference treatment. Correlation between the physical component summary (PCS) scores and 15D total scores was low (R=0.20-0.28). MCS and 15D total scores correlated (R=0.48-0.60) better with each other, but the gained correlation coefficients still differed significantly from each other (p=0.04) and showed better correlation in the controls. CONCLUSIONS: Our findings suggest, that the diagnosis of osteosarcoma, and SCT treatment are substantial risks for adverse HRQL. However, disease related factors did not remarkably explain the variation of HRQL scores gained with generic HRQL instruments. Our findings suggest, that the diagnosis of osteosarcoma, and SCT treatment are substantial risks for adverse HRQL. More evaluation is needed in order to decide whether any of the available generic instruments are feasible for studying HRQL for this special population.