2904 - Engaging Cancer Survivors, Healthcare Providers and Advocates in The Development of a Colorectal Cancer Survivorship Information Resource: A Participatory Action Research Study

Background

Up to three-quarters of colorectal cancer (CRC), survivors may experience one or more physical, psychological or social issues after treatment. Individuals with a cancer diagnosis report appropriate support and information from healthcare professionals during treatment. However, many are unprepared for the chronic effects of cancer and its treatment and lack the resources to devise self-management skills. This study aims to design and develop an evidence-based Cancer Survivorship Information Resource (CSIR) to support the education of people with CRC about potential survivorship issues.

Methods

The CSIR is being developed with key stakeholders via a three-phase participatory action research (PAR) approach. In Phase 1, chronic effects of CRC were explored in a mixed methods study (n = 304). In Phase 2, a 3-round modified Delphi was undertaken with key stakeholders, including CRC survivors, healthcare professionals and advocates to gain consensus on topics to be included in the CSIR (n = 36). Phase 3 will focus on the design, development and evaluation of the CSIR.

Results

In phase 1, CRC survivors reported symptoms including sexual dysfunction (66%), fatigue (64%), bowel dysfunction (57%) and fear of recurrence (60%). Seventeen survivorship information topics were identified in Phase 1; six further topics were proposed by Phase 2 participants. Seventeen items achieved agreement (≥80%) for inclusion in the CSIR, including fatigue, bowel function, sexual function, coping, and returning to work.

Conclusions

Stakeholder consensus and engagement has the potential to effect sustainable change and innovation in practice. Phase 2 participants will be engaged in Phase 3 to develop and evaluate the content of the CSIR. PAR methodology facilitates the development of interventions which are person-centred and appropriate to the stage of treatment. Once developed, the CSIR will form part of a larger complex intervention, which aims to address the unmet information and supportive care needs of cancer survivors; supporting them to develop self-management skills to cope with the chronic effects of CRC and its treatment.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

Trinity College Dublin.

Funding

The Health Research Board Research Training Fellowship for Healthcare Professionals (Grant#: HPF.2014.715).

Disclosure

All authors have declared no conflicts of interest.