\u201cI don\u2019t take for granted that I am doing well today\u201d: a mixed methods study on well-being, impact of cancer, and supportive needs in long-term childhood cancer survivors

Manya Jerina Hendriks,Nathalie Hartmann,Gisela Michel,Erika Harju,Katharina Roser

doi:10.1007/s11136-021-03042-6

Manya Jerina Hendriks, Nathalie Hartmann + Show 3 more

Open Access

https://doi.org/10.1007/s11136-021-03042-6

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Abstract

PurposeWith increasing numbers of childhood cancer survivors (CCS), it is important to identify the impact of cancer and CCS’ needs for support services that can mitigate the long-term impact on psychosocial wellbeing, including health-related quality of life (HRQOL). We aimed (1) to describe survivors’ wellbeing, impact of cancer, and supportive care needs and (2) to determine how socio-demographic or clinical characteristics and impact of cancer relate to survivors’ unmet needs.MethodIn this mixed methods study, a quantitative survey was used to assess HRQOL, psychological distress, impact of cancer, and supportive care needs. Qualitative interviews were conducted to explore the meaning of wellbeing, health, and impact of cancer.ResultsOverall, 69 CCS participated in the survey of which 28 participated in qualitative interviews (aged ≥ 18 years, diagnosed with cancer ≤ 18 years). Few CCS (13%) reported poor physical HRQOL, but almost half reported poor mental HRQOL (49%) and psychological distress (42%). Health was considered to encompass both: physical and emotional aspects of wellbeing. Cancer positively impacted CCS’ ability to care and attitude towards life, whereas relationships and insurance were negatively impacted. Risks for unmet needs increased in CCS with self-reported low health status, late effects, psychological distress, with older age at study or longer time since end of treatment.ConclusionIn our study, many CCS experienced various psychosocial, psychological and informational unmet needs, indicating that survivors’ needs are currently not duly addressed. Current efforts to provide supportive psychosocial care in Switzerland should be further operationalized to provide adequate support.

Highlights

Due to significant advances in therapy, more than 80% of children diagnosed with cancer survive ≥ 5 years [1]
We have explored in-depth the experiences of survivors living in Switzerland on their wellbeing, impact of cancer and unmet needs in care
With the growing population of cancer survivors (CCS), it is important to identify the negative impact of cancer and the related unmet needs faced by CCS to develop appropriate support services and targeted interventions that can mitigate longterm impact on wellbeing [21, 22]

Summary

Introduction

Due to significant advances in therapy, more than 80% of children diagnosed with cancer survive ≥ 5 years [1]. As a result, supportive care needs often remain undetected and undertreated [14,15,16] This is worrying, as evidence continues to show a critical subset of survivors at increased risk for psychosocial late effects, psychological distress and poor QoL [11, 17, 18], and warrants special attention from HCPs who work with and care for CCS. This broader understanding of CCS’ functioning will help tailoring interventions based on their needs This mixed methods study aimed to (1) describe survivors’ wellbeing (including HRQOL and psychological distress), the impact of cancer, and supportive care needs and (2) determine how socio-demographic or clinical characteristics and impact of cancer relate to survivors’ unmet needs

Methods

Participants and procedure

Results

Discussion