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Psychosocial outcomes in long-term Dutch adult survivors of childhood cancer: The DCCSS-LATER 2 psycho-oncology study
Authors:Anne Maas MSc  Heleen Maurice-Stam PhD  Leontien C M Kremer MD  PhD  Alied van der Aa-van Delden MSc  Eline van Dulmen-den Broeder PhD  Wim J E Tissing MD  PhD  Jacqueline J Loonen MD  PhD  Helena J H van der Pal MD  PhD  Andrica C H de Vries MD  PhD  Marry M van den Heuvel-Eibrink MD  PhD  Cécile Ronckers PhD  Sebastian Neggers MD  PhD  Dorine Bresters MD  PhD  Marloes Louwerens MD  Margriet van der Heiden-van der Loo PhD  Marloes van Gorp PhD  Martha Grootenhuis PhD  Dutch LATER study group
Institution:1. Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands;2. Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands

Department of Pediatrics, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands;3. Amsterdam UMC/location VUmc, Amsterdam, The Netherlands;4. Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands

Beatrix Children's Hospital/University of Groningen/University Medical Center Groningen, Groningen, The Netherlands;5. Radboud University Medical Center, Nijmegen, The Netherlands;6. Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands

Sophia Children's Hospital/Erasmus Medical Center, Rotterdam, The Netherlands;7. Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands

Department of Health Services Research, School of Medicine and Health Sciences, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany;8. Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands

Department of Medicine, Section Endocrinology, Erasmus Medical Center, Rotterdam, The Netherlands;9. Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands

Willem Alexander Children's Hospital/Leiden University Medical Center, Leiden, The Netherlands;10. Leiden University Medical Center, Leiden, The Netherlands

Abstract:

Background

This study compares a comprehensive range of psychosocial outcomes of adult childhood cancer survivors (CCS) to general population-based references and identifies sociodemographic and medical risk factors.

Methods

CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)-LATER cohort (diagnosed 1963–2001) part 2 (attained age ≥18 years, diagnosed <18 years, ≥5 years since diagnosis) completed the Rosenberg Self-Esteem Scale, Hospital Anxiety and Depression Scale, Distress Thermometer, Self-Rating Scale for Post-Traumatic Stress Disorder, and the Short Form-36 (Health Related Quality of Life). CCS’ scores were compared with references using analysis of variances and logistic regression analysis, controlling for age and sex (p < .05). Risk factors for worse psychosocial outcomes were assessed with regression analyses (p < .05).

Results

CCS, N = 1797, mean age 35.4 years, 49.0% female, all ≥15 years since diagnosis, participated. Three percent reported posttraumatic stress disorder because of childhood cancer and 36.6% experienced clinical distress. CCS did not differ from references on self-esteem and anxiety but were less depressed (d = −.25), and scored poorer on all health-related quality of life scales, except for bodily pain (.01 ≤ d  ≥  −.36). Female sex, lower educational attainment, not being in a relationship, and being unemployed were negatively associated with almost all psychosocial outcomes. Except for a central nervous system tumor diagnosis, few medical characteristics were associated with psychosocial outcomes.

Conclusion

CCS appear resilient regarding mental health but have slightly poorer health-related quality of life than references. Sociodemographic characteristics and central nervous system tumors were related to most psychosocial outcomes, but no clear pattern was observed for other medical factors. Future studies should address additional factors in explaining CCS’ psychosocial functioning, such as coping, social support, and physical late effects.
Keywords:anxiety  childhood cancer survivors  cohort study  depression  distress  health-related quality of life  post-traumatic stress  self-esteem
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