TY - JOUR
T1 - Support needs of Dutch young adult childhood cancer survivors
AU - van Erp, L. M. E.
AU - Maurice-Stam, H.
AU - Kremer, L. C. M.
AU - Tissing, W. J. E.
AU - van der Pal, H. J. H.
AU - Beek, L.
AU - de Vries, A. C. H.
AU - van den Heuvel-Eibrink, M. M.
AU - Versluys, B. A. B.
AU - van der Heiden-van der Loo, M.
AU - van Gorp, M.
AU - Huizinga, G. A.
AU - Grootenhuis, M. A.
N1 - Funding Information: We thank the survivor representatives from the VOX survivor working group from the Dutch Childhood Cancer Association (VKKN) for their input on the information materials for this study. We thank prof. Ad Vingerhoets for providing the HADS reference group and prof. Hans Knoop for providing the CIS-20R reference group. Funding Information: This research was funded by the KiKa Foundation (#293). Publisher Copyright: © 2021, The Author(s).
PY - 2022/4
Y1 - 2022/4
N2 - 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.
AB - 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.
KW - Childhood cancer
KW - Needs
KW - Psychosocial support
KW - Survivorship care
KW - Young adults
UR - http://www.scopus.com/inward/record.url?scp=85122244183&partnerID=8YFLogxK
U2 - https://doi.org/10.1007/s00520-021-06723-7
DO - https://doi.org/10.1007/s00520-021-06723-7
M3 - Article
C2 - 34981198
SN - 0941-4355
VL - 30
SP - 3291
EP - 3302
JO - Supportive Care in Cancer
JF - Supportive Care in Cancer
IS - 4
ER -