Chronic pain after cancer treatment: Insights from cancer survivors and healthcare professionals in England, UK to consider how cancer survivors’ experiences can be improved

Armoogum, Julie

Abstract

Chronic pain is a common side effect of cancer treatment. Pain is frequently cited as a top concern and unmet need for cancer survivors. This thesis explored experiences of cancer survivors living with chronic pain after cancer and investigated how their experiences can be improved.
A qualitative evidence synthesis highlighted a paucity of studies (n=4), all of which focused solely on women with breast cancer. Findings demonstrated pain sensations evoked memories of cancer diagnoses, treatment and subsequent threats to mortality and indicated this made pain harder to manage. These unique and bespoke dimensions to experiences of chronic pain are unreported in the non-malignant pain literature.
Qualitative interviews with cancer survivors (n=19) identified difficult and frustrating interactions with healthcare services: survivors did not feel informed or prepared about ongoing pain, nor heard or believed. Support was hard to identify and access, and the responsibility of this was left to the survivor. They experienced being bounced between services, often slipping between the gaps in provision, and reported healthcare professionals had little knowledge about pain after cancer. However, validation of their pain by healthcare professionals was key to improving experiences.
A survey was developed to gain insight into healthcare professionals’ knowledge, understanding and confidence about chronic pain after cancer. Respondents (n=135) acknowledged the significant clinical burden but demonstrated mixed levels of understanding of its impact. Approximately a quarter reported they never, or rarely, talked, listened or signposted about chronic pain after cancer.
Findings informed draft clinical recommendations. These were discussed and refined within expert review panels. Resultant clinical recommendations are summarised as: PAINS: Prepare and inform, Acknowledge and listen, Increase healthcare professional knowledge, Name and diagnose and Supported self-management interventions.
Limitations include excluding those with treatable but not curable cancer and survivors of childhood cancer plus the challenges and complexity of the language of pain, chronicity, and cancer survivorship. Further research is needed to co-design, co-produce and evaluate patient information, healthcare professional educational resources and self-management interventions to support people with chronic pain after cancer treatment.

• Thesis Type: Thesis
• Deposit Date: Apr 13, 2023
• Publicly Available Date: Jan 3, 2024
• Keywords: Cancer, cancer survivor, pain, late effects, patient experience, healthcare professional
• Public URL: https://uwe-repository.worktribe.com/output/10623386
• Award Date: Jan 3, 2024