Healthcare provision for cancer survivors with chronic bowel symptoms post pelvic radiotherapy. “… and then you're kind of cast adrift”: A qualitative study

Abstract

Purpose

Chronic bowel symptoms are common late-effects of pelvic radiotherapy associated with significantly decreased quality-of-life. For some, perhaps many, people these symptoms may be mitigated or treated, if appropriately investigated and diagnosed. We explored experiences of health service access and provision of support for people with chronic bowel symptoms after pelvic radiotherapy, from the perspectives of cancer survivors and health professionals. Our aim was to highlight processes and contextual factors that may hinder access to effective support and treatment.

Methods

We carried out semi-structured interviews with 28 cancer survivors (14 female) with experience of post-radiotherapy, chronic bowel symptoms, and 19 health professionals involved in the care of such patients. Recruitment was through three NHS hospitals, cancer charities and professional networks. Data were analysed thematically, deductively (guided by the Model of Pathways to Treatment (MPT)) and inductively.

Results

We organised data around three overarching themes positioning experiences within MPT's event sequence or describing health system factor. Gratitude for treatment of cancer, embarrassment and acceptance of symptoms led survivors not to seek further care. Health professionals not recognising symptoms or focusing only on discounting cancer recurrence were barriers to effective care for those who sought it. System barriers included professional specialities working in isolation and geographical disparity in availability of late-effects services.

Conclusions

Our findings suggest a need for raising awareness of late-effects of pelvic-radiotherapy among patients and health professionals encompassing recognition of symptoms and awareness of treatments and support and for accelerating access to specialist late-effects services nationally.