The unmet needs of childhood cancer survivors in long-term follow-up care: A qualitative study

Objective: Evidence suggests benefits of long-term follow-up care attendance for childhood cancer survivors, but studies show poor inclusion of survivorship issues and needs. While information needs of childhood cancer survivors have been addressed previously, few studies specifically investigated the supportive care needs of survivors beyond the domain of information and communication. Therefore, this qualitative study aimed to assess the unmet needs of childhood cancer survivors with regards to their long-term survivorship.

Methods: Childhood Cancer Switzerland invited survivors of childhood cancer to participate in our study. We used semistructured interviews to assess survivors' experiences regarding the impact of their disease and the (un)met needs during their survivorship. Data analysis followed the principles of qualitative content analysis.

Results: Interviews were conducted with 28 childhood cancer survivors (mean age 31 years, age at diagnosis 9 years, time since end of treatment 19 years). Key themes in relation to unmet needs of survivors were (1) lacking psychosocial support, (2) lacking collaboration and decentralization of care, (3) starting from zero, and (4) need for centralized, specialized, and individualized services.

Conclusions: Our findings revealed a demand for integrating psychosocial support in long-term follow-up care and a strong need for personalized, centralized, and interdisciplinary long-term follow-up care. Current established interdisciplinary clinics should be further extended to provide centralized, personalized, and evidence-based long-term follow-up care including adequate psychosocial support for all childhood cancer survivors.