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Objective: The impact of childhood cancer on future quality of life (QoL) in survivors is unclear. Current studies focus on comparing outcomes to healthy peers and identifying related treatment and demographic variables, but a shift in our approach is necessary. This study is guided by the Wilson and Cleary Model (WMC) and seeks to identify longitudinal predictors of QoL in adolescent survivors of cancer that explain variance in QoL beyond the impact of treatment and demographic variables. Methods: The Childhood Cancer Survivor Study (CCSS) is a multi-institutional longitudinal study following a cohort of childhood cancer survivors. This study focuses on the CCSS cohort (N = 305) who completed the baseline survey in 1994 and the Teen survey in 2001. The baseline survey assessed parent-report of child’s psychological and physical symptoms, functional status, and health perceptions. The Teen survey utilized the Child Health and Illness Profile – Adolescent Edition (CHIP-AE), a self-report measure assessing QoL in six domains: achievement, resilience, satisfaction, discomfort, disorders, and risk. The primary hypothesis was that psychological and physical symptoms, functional status impairment, and health perceptions as rated by parents at baseline would predict variance in quality of life as rated by adolescents at follow-up after adjusting for demographic and treatment-related variables. Six separate hierarchical regressions were analyzed for each of the QoL domains. Results: The main hypothesis was supported. For each QoL outcome, a significant amount of variance was predicted: achievement, F (6, 259) = 8.90, p < .001, adjusted R2 = .152, resilience, F (12, 209) = 3.47, p < .001, adjusted R2 = .118, satisfaction, F (6, 265) = 8.73, p < .001, adjusted R2 = .146, discomfort, F (7, 273) = 6.75, p < .001, adjusted R2 = .126, disorders, F (9, 212) = 6.47, p < .0001, adjusted R2 = .182, and risk, F (7, 238) = 4.81, p < .001, adjusted R2 = .098. Furthermore, for all outcomes, psychological and physical symptoms, functional status impairment, and health perceptions predicted variance above and beyond the impact of demographic and treatment variables. These factors accounted for an additional 9.5% of the variance in the achievement domain, 6.2% for resilience, 10.8% for satisfaction, 6.5% for discomfort, 12.4% for disorders, and 6.1% for risk. Conclusions: Results suggest that psychological and physical symptoms, functional status and health perceptions should be assessed and targeted in interventions for childhood cancer survivors to promote future positive QoL. Future studies need to continue identifying factors related to positive long-term functioning in diverse samples of childhood cancer survivors.

Abstract Leukemia treatment has been implicated to be responsible for a diversity of long-term adverse effects (Pui 2008), which can occur even years after diagnosis and can seriously impair survivors’ performance status and quality of life (Campbell et al. 2007, Zeltzer et al. 2008). The aim of the present work was to assess health-related quality of life in long-term survivors of acute lymphoblastic leukemia (ALL), and to find out whether vocational rehabilitation can promote the coping at work of young people who take part in a training intervention or help them find employment. Neuropsychological testing was performed on 64 survivors. Cranial irradiation had been administered to 44 of the survivors, while 20 survivors had been treated solely with chemotherapy. A control group consisted of 45 healthy young adults. We found that young adult survivors of childhood ALL treated with cranial irradiation had clear progressive deficits in their neurocognitive functioning at a mean of 20 years after diagnosis compared with healthy controls. Non-irradiated ALL survivors performed significantly better, but even they had statistically significant impairments in some of the neuropsychological test scores compared with the controls. Rand-36-Item health Survey (RAND-36) was used to assess subjective HRQoL, depressive symptoms were assessed with Beck Depression Inventory (BDI-21), and mental distress with General Health Questionnaire (GHQ-12) in 74 survivors of ALL. The control group consisted of 146 healthy young adults selected from local population registry. ALL survivors showed good HRQoL scores in comparison to the control group. Patients who had been treated for an ALL relapse and had received the most intensive chemo- and radiotherapy had significantly higher scores on mental health and vitality than the controls. Survivors of ALL report fewer depressive symptoms and equal mental well-being compared to healthy controls. Nine out of 63 survivors were selected for rehabilitation based on their occupation and psychosocial difficulties. The occupational rehabilitation course improved physical fitness and decreased overweight in long-term survivors of ALL, but impaired their HRQoL. Our findings support the idea that ALL survivors’ subjective experience of well-being is possibly affected by a repressive adaptive style. / Tiivistelmä Leukemiahoidoilla on todettu olevan pitkäaikaisvaikutuksia (Pui 2008), jotka voivat ilmetä jopa vuosia diagnoosin jälkeen heikentäen sairaudesta selvinneiden toimintakykyä ja elämänlaatua (Campbell et al. 2007, Zeltzer et al. 2008). Tämän tutkimuksen tavoitteena oli arvioida akuutista lymfaattisesta (ALL) leukemiasta selvinneiden terveyteen liittyvää elämänlaatua pitkällä aikavälillä sekä selvittää, voidaanko ammatillisen kuntoutuksen avulla edistää interventioon osallistuneiden työssä selviytymistä tai työllistymistä. Neuropsykologiseen tutkimukseen osallistui 64 ALL pitkäaikaisselviytyjää. Heistä 44 oli saanut pään alueen sädehoitoa ja 20 pelkästään solunsalpaajahoitoa. Verrokkiryhmässä oli 45 tervettä nuorta aikuista. Havaitsimme, että lapsuudessa pään alueen sädehoitoa saaneilla ALL-selviytyjillä oli verrokkeihin verrattuna selkeitä progressiivisia muutoksia neurokognitiivisessa toimintakyvyssä keskimäärin 20 vuotta diagnoosista. Ne, jotka eivät olleet saaneet sädehoitoa suoriutuivat huomattavasti paremmin, mutta heilläkin havaittiin tilastollisesti merkittäviä puutoksia joillakin neuropsykologisten testien osa-alueilla verrokkeihin verrattuna. 74 entisen ALL-potilaan terveyteen liittyvää elämänlaatua (HRQoL) mitattiin Rand-36 -mittarilla, masennusoireita Beckin masennustestillä (BDI-21) ja henkistä hyvinvointia General Health Questionnaire -mittarilla (GHQ-12). Verrokkiryhmäksi valittiin väestörekisteristä 146 tervettä nuorta aikuista. ALL-ryhmässä tutkittavien terveyteen liittyvää elämänlaatua mittaavat pisteet olivat hyvät verrokkiryhmään verrattuna. Ne potilaat, joita oli hoidettu leukemian uusiutumisen takia ja jotka olivat saaneet intensiivisintä solunsalpaaja- ja sädehoitoa saivat huomattavasti paremmat pisteet psyykkisen hyvinvoinnin ja vitaalisuuden osa-alueilla kuin verrokit. ALL -selviytyjät raportoivat vähemmän masennusoireita, ja he arvioivat psyykkinen hyvinvointinsa yhtä hyväksi kuin verrokit. Yhdeksän ALL pitkäaikaisselviytyjää osallistui heille suunnattuun ammatilliseen kuntoutusinterventioon. Ammatillinen kuntoutuskurssi paransi ALL -selviytyjien fyysistä suorituskykyä ja vähensi ylipainoa, mutta heikensi terveyteen liittyvää elämänlaatua. Tutkimustulokset tukevat ajatusta, että repressiivinen adaptaatio voi vaikuttaa lapsuusiän leukemiasta selvinneiden subjektiiviseen hyvinvoinnin kokemukseen.