Sources of support and perceptions of the role of the GP for patients following major pancreatic surgery for cancer: A qualitative study

Problem

Pancreatic cancer is the 10th most common cancer in the UK. Most are diagnosed at a late stage; around 10-15% patients undergo pancreaticoduodenectomy. Few studies have explored patients’ experiences of surgery, with little consideration of the role of the GP as a source of support. However, GPs are key in enabling effective care-coordination for people living with life-shortening conditions, and in identifying unmet support needs which can negatively impact patients’ quality of life. Our study explored patients’ sources of support and what role they perceived their GP to play in their support network and care-coordination, in order to identify opportunities for improved support interventions across primary and specialist care.

Approach

Ethical approval was obtained. Semi-structured interviews were conducted with patients who had undergone pancreaticoduodenectomy for pancreatic or distal biliary duct cancer at a specialist hepato-pancreatic-biliary centre in Northwest England. Interviews explored life after surgery, sources of support, and participants’ perspectives of the role of their GP. Data were analysed thematically using the principles of constant comparison.

Findings

Analysis of 20 interviews is reported. Participants described several sources of support including family, friends and faith communities. However, they expressed emotional conflict between accepting support from family or community networks and the desire to protect them from their fears. They were aware of support groups but were reluctant to engage with these. Participants expressed a wish for support from their GP post-operatively but found that asking for help was difficult, particularly if they experienced a lack of continuity of care. They were uncertain of the role of the GP in their ongoing care, recognising that GPs may have little experience with this condition, but expressed frustrations that they felt the burden was on them to offer information and education to their GP. However, participants felt that their GPs could play a vital role in their ongoing care, hoping for greater recognition of physical and psychological sequelae of major pancreatic surgery, as well as the impact of their illness on their families.

Consequences

Patients may be reluctant to ask for psychological support. Therefore, an awareness of the patient experience is crucial in order for GPs to proactively offer psychological support following diagnosis and treatment. This may also enable more effective liaison with specialist care. Understanding cancer’s impact on people’s quality of life is vital for the development of improved support interventions.