Identifying social outcomes of importance for childhood cancer survivors: an e-Delphi study

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.

Plain English Summary

Following treatment for childhood cancer, survivors may face problems with their social health. These are the parts of life, besides physical and mental health, that help people to lead full, happy and satisfied lives. Social health is important as it affects all areas of our lives and includes many areas such as education, work and relationships. It is essential that we understand what the most important areas of social health are for childhood cancer survivors so that we can support these. This will help survivors lead the lives they want as adults. In this study, 38 childhood cancer survivors, children’s cancer doctors and nurses, social workers and teachers took part in a series of questionnaires designed to collect their views about social health for survivors. Participants established 22 areas of social health to be very important. ‘Having autonomy’ and ‘avoiding social isolation’ were selected as the most important. Participants felt that the aspects of social health which are important to survivors are the same outcomes as for the wider public. However, survivors may face many barriers to doing well in these areas. To fully identify the important areas of social health for childhood cancer survivors, we need to undertake further work to understand the views of other important groups, such as parents or carers. We also need to explore the barriers survivors face in achieving good social health.