Abstract
BackgroundTen 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.AimTo explore patients’ perspectives on the role of primary care in their management, and their sources of support.Design & settingInductive 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.MethodSemi-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.ResultsParticipants 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.ConclusionPatients 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.
Highlights
Ten percent of patients diagnosed with pancreatic cancer undergo pancreaticoduodenectomy
There is limited research focusing on the experiences of patients living with pancreatic cancer; most qualitative studies have focused on decision-making around treatment[4,5], secondary care surveillance[6,7], and symptom appraisal prior to diagnosis[8,9]
Patients were excluded if they were under the age of 18, if they had a current diagnosis of a severe mental illness, lacked capacity to consent, did not speak sufficient English, or were in their last days of life
Summary
Ten percent of patients diagnosed with pancreatic cancer undergo pancreaticoduodenectomy. Results: Participants described immense treatment burden and uncertainty around the role of the GP in their ongoing care. They recognized 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 post-operatively, and valued support networks including family and friends. 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. People aged over 70 may experience high levels of distress persisting for five years after cancer diagnosis[12]; since the incidence of pancreatic cancer is strongly related to age[1], recognizing and managing psychological distress is vital
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