Journal Article

Support needs of Dutch young adult childhood cancer survivors

Versluys, B. A. B., Kremer, L. C. M., de Vries, A. C. H., Beek, L., van Gorp, M., Maurice-Stam, H., Huizinga, G. A., Tissing, W. J. E., van den Heuvel-Eibrink, M. M., van der Pal, H. J. H., van der Heiden-van der Loo, M., van Erp, L. M. E., Grootenhuis, M. A.

2022

Overview

Background Studies about support needs of young adult childhood cancer survivors (YACCS) previously focused mainly on information needs. This study assessed support needs and associated factors (sociodemographic, medical, and psychosocial functioning) in Dutch YACCS. Methods YACCS (aged 18–30, diagnosed ≤ 18 years, time since diagnosis ≥ 5 years) cross-sectionally filled out a questionnaire regarding their need for various types of support (concrete information, personal counseling, and peer contact) in eight domains (physical consequences of childhood cancer, social-emotional consequences, relationships and sexuality, fertility, lifestyle, school and work, future perspective, insurance and mortgage), and questionnaires assessing health-related quality of life (PedsQL-YA), anxiety and depression (HADS), and fatigue (CIS-20R). Descriptive statistics were used to describe support needs. Linear regression was used to identify characteristics associated with support needs. Results One hundred fifty-one YACCS participated (response = 40%). Most YACCS reported a need for support in one or more domains (88.0%, N  = 133). More than half of the participants reported a need for concrete information in the domains lifestyle, fertility, and physical consequences of childhood cancer and 25–50% in the domains insurance and mortgages, future perspective, and social-emotional consequences of childhood cancer. In the domains lifestyle and physical as well as emotional consequences of childhood cancer, 25–50% reported a need for counseling. Overall need for support was positively associated with middle (β = 0.26, p  = 0.024) and high (β = 0.35, p  = 0.014) compared to low educational attainment and (sub)clinical anxiety (β = 0.22, p  = 0.017), and negatively associated with social functioning (β =  − 0.37, p  = 0.002) in multivariate analyses. Conclusion YACCS report the strongest need for support, for concrete information, in the domains lifestyle, fertility, and physical consequences of childhood cancer. Associated factors were mostly socioeconomic and psychosocial in nature. Psychosocial care should be an integral part of survivorship care for YACCS, with screening for psychosocial problems, information provision including associated emotional consequences and support if necessary (psycho-education) and tailored interventions, and adequate referrals to more specialized care if necessary.

• Publisher: Springer Berlin Heidelberg,Springer,Springer Nature B.V
• Subject: Adolescent / Adult / Analysis / Anxiety / Attainment / Cancer / Cancer in children / Cancer Survivors / Child / Child & adolescent mental health / Childhood / Counseling / Educational attainment / Emotions / Fatigue / Fertility / Health insurance / Health Services Needs and Demand / Health status / Humans / Infertility / Information / Information needs / Information sharing / Lifestyles / Medical diagnosis / Medical screening / Medicine / Medicine & Public Health / Mental depression / Mental health / Mortgages / Needs / Neoplasms - psychology / Neoplasms - therapy / Nursing / Nursing Research / Oncology / Original / Original Article / Pain Medicine / Privacy / Psychosocial factors / Psychosocial functioning / Psychosocial problems / Quality of life / Quality of Life - psychology / Questionnaires / Rehabilitation Medicine / Sexual health / Sexuality / Social functioning / Social Support / Sociodemographics / Socioeconomic factors / Statistics / Surveys and Questionnaires / Survivor / Survivorship / Teenagers / Young Adult / Young adults / Youth