Abstract
Abstract
Purpose
Childhood cancer survivors (CCS) are at risk of deficits in their social outcomes, a key aspect of overall health and quality of life. Social outcomes of import are ill-defined leading to potential gaps in research and service provision. In this study, we undertook a preliminary consensus seeking exercise to support the development of a framework of the important social outcomes for CCS.
Methods
A modified e-Delphi study was conducted with four groups: CCS, health professionals, social workers and teachers. Round 1, developed from a literature review, included 34 questions rated for importance on a 7-point Likert scale. Rounds 2 and 3 presented items not achieving consensus, additionally proposed items and in round 3, a ranking question.
Results
Survey 1 was completed by 38 participants, 31 (82%) completed survey 2 and 28 (76%) completed survey 3. A total of 36 items were prioritised across 6 domains (education, independence, work, relationships, community, lifestyle), together forming the final list of social outcomes. Of these, 22 items met consensus for importance. Items rated most important were “having autonomy” and “avoiding social isolation”. Quantitative and qualitative results reflected that social outcomes for survivors and general public should be the same.
Conclusion
We have generated initial consensus on important social outcomes for CCS, highlighting the need for these to be matched to those of the general population. It suggests strategies are required to ensure autonomy and appropriate support for independence and relationships are provided through long-term aftercare and beyond. Further work is needed to validate and develop these findings into a framework to support appropriate social aftercare for CCS.
Publisher
Springer Science and Business Media LLC
Subject
Health Information Management,Health Informatics
Reference47 articles.
1. National Cancer Registration and Analysis Service for England (2021) Children, teenagers and young adult UK cancer statistics report 2021. UK
2. Cromie K et al (2022) Socio-economic and ethnic inequalities in childhood cancer survival, Yorkshire, UK. In: 54th Congress of the international society of paediatric oncology, Barcelona
3. Steliarova-Foucher E et al (2017) International incidence of childhood cancer, 2001–10: a population-based registry study. Lancet Oncol 18(6):719–731
4. Cancer Research UK. Young People’s Cancer Statistics 2020 [cited 2022 22.01.2022]. Available from: https://www.cancerresearchuk.org/health-professional/cancer-statistics/young-people-cancers/survival-heading-Three
5. Trama A et al (2016) Survival of European adolescents and young adults diagnosed with cancer in 2000–07: population-based data from EUROCARE-5. Lancet Oncol 17(7):896–906