‘You know where we are if you need us.’ The role of the GP in supporting patients following major pancreatic surgery for cancer: A qualitative study

Problem

Pancreatic cancer is the 11th most common cancer in the UK. Most are diagnosed at a late stage, but around 15% of patients undergo a pancreaticoduodenectomy. There is limited research focusing on the experiences of patients living with pancreatic cancer; most qualitative studies have focused on shared decision-making around surgery, and secondary care surveillance. The role of the GP has thus far been unexplored, yet GPs are key in enabling effective coordination of care for people living with life-shortening conditions, and unmet support needs negatively impact patients’ quality of life.Our study aimed to explore patients’ experiences of help-seeking before diagnosis and following surgery, the impact of living with pancreatic cancer, and opportunities to develop improved support interventions in primary or secondary care.

Approach

Ethical approval was obtained. Semi-structured interviews were conducted with patients who had undergone a pancreaticoduodenectomy for pancreatic or biliary duct cancer at a specialist hepato-pancreatic-biliary (HPB) centre in Northwest England. Interviews explored their experience of the diagnostic process and surgery, life after surgery, and sources of support including primary care. Data were analysed thematically using the principles of constant comparison.

Findings

Interviews are ongoing, but analysis of 16 interviews has yielded several themes. Patients described difficulties navigating the healthcare system both prior to diagnosis and following surgery, and being uncertain of the role of the GP in their ongoing care. This was particularly articulated by patients referred to the HPB service via other hospitals in the cancer alliance. Participants recognized that GPs have little contact with patients who have had a pancreaticoduodenectomy, but felt that GPs should be more proactive in offering support. Participants described a significant treatment and monitoring burden, which included: difficulties managing medications (including creon and insulin), the impact of ongoing symptoms on daily activities, and the disruption of frequent appointments and investigations. Participants gained support from a variety of sources including family, friends, and faith communities, but rarely their GP. They reported that although they wanted more support post-operatively, they felt inhibited from asking for help because they did not perceive themselves to be unwell. Participants felt they would value recognition from GPs of both physical and psychological sequelae.

Consequences

Patients can feel they are not candidates for an increased level of support following surgery because they may not consider themselves sufficiently unwell. Therefore, an awareness of both physical and psychological sequelae is crucial in order for GPs to offer appropriate support proactively following discharge. Gaining an understanding of the surgical and medical treatments offered to patients will enable more effective liaison with specialist care including surgeons, oncologists and dieticians. Understanding the impact of cancer on patients’ quality of life is vital in enabling the development of improved support interventions across primary and secondary care.