‘You know where we are if you need us.’ The role of primary care in supporting patients following pancreaticoduodenectomy for cancer: a qualitative study

BACKGROUND: Ten per cent of patients diagnosed with pancreatic cancer undergo pancreaticoduodenectomy. It is known that these patients have unmet psychological support needs, and GPs are key in enabling effective coordination of care for people living with life-shortening conditions. AIM: To explore patients’ perspectives on the role of primary care in their management, and their sources of support. DESIGN & SETTING: Inductive qualitative study of patients who had undergone pancreaticoduodenectomy between 6 months and 6 years previously for pancreatic or distal biliary duct cancers. Participants were recruited by clinical nurse specialists (CNSs) from a single NHS trust in Northwest England. METHOD: Semi-structured interviews, either face-to-face or via video link, were conducted with 20 participants. Interviews were audio-recorded, transcribed, and anonymised. Thematic analysis utilised principles of constant comparison. RESULTS: Participants described immense treatment burden and uncertainty around the role of the GP in their ongoing care. They recognised that GPs may have little experience of patients who have undergone pancreaticoduodenectomy, but felt that GPs can play a vital role in offering support. Participants wished for emotional support postoperatively, and valued support networks including family and friends. However, they found expressing their deepest fears difficult. Participants felt they would value greater recognition by primary care of both physical and psychological sequelae of major pancreatic surgery, and the impact on their families. CONCLUSION: Patients may feel themselves to be a ‘burden’ to both healthcare professionals and their own support networks following pancreaticoduodenectomy. Primary care is in a key position to proactively offer psychological support.