Gut disruption impairs rehabilitation in patients curatively operated for pancreaticoduodenal cancer - a qualitative study

Kristine Elberg Dengsø,Tine Tjørnhøj-Thomsen,Bo Marcel Christensen,Susanne Oksbjerg Dalton,Thordis Thomsen,Jens Hillingsø

doi:10.1186/s12885-018-4933-1

Abstract

BackgroundHow patients recover and resume everyday life after curative hepato-pancreato-biliary (HPB) surgery with intestinal reconstruction has, to our knowledge, not previously been investigated. We wanted to explore the patient experience in order to develop our capability to support their rehabilitation and identify interventional gaps in the current post-surgical care of these patients. Therefore, the aim of the present study was to explore patients’ experiences of their gut, digestion, recovery and uptake of everyday life after HPB surgery with intestinal reconstruction.MethodsA qualitative explorative study with semi-structured interviews with 12 patients. We analysed data using qualitative content analysis with an inductive approach.ResultsTwo main themes with six sub-themes emerged from the analysis: 1. “Disrupted gut” covering the sub-themes: the weakened body; fighting cachexia; re-aligning to the altered body. 2. “Recovery work” with the sub-themes: the value of municipal rehabilitation programmes; reclaiming the sociality of meals; going back to work. The patients described overarching digestive changes, predominantly diarrhea and nausea. Diarrhea and nausea challenged rehabilitation efforts and limited patients’ participation in social activities. Patients toiled to regain strength and every-day life as it was before surgery. Current municipal rehabilitation programmes facilitated these efforts.ConclusionsThe patients articulated an overarching experience of gut disruption, predominantly presenting as nausea, diarrhea and difficulty eating. This challenged their recovery work and uptake of every-day life. Specialised follow-up at expert centres might mitigate the sequelae of gut disruption after HPB surgery. We suggest that follow-up programmes systematically monitor the experienced symptoms of gut disruption with HPB-specific PROMS. Furthermore, research into the pathophysiology of cachexia and novel interventions for reducing cachexia and weakness after curative HPB surgery is relevant.

Highlights

How patients recover and resume everyday life after curative hepato-pancreato-biliary (HPB) surgery with intestinal reconstruction has, to our knowledge, not previously been investigated
Evidence suggests that standardised follow-up does not improve survival rates, but follow-up should rather focus on symptoms, nutrition, and psycho-social support to improve quality of life [1,2,3]
After major surgery with extensive resection and reconstruction of the gastrointestinal tract some symptoms, like cachexia, remain, and the operation itself can infer sequelae impacting on nutrition, well-being, and rehabilitation [4,5,6]

Summary

Introduction

How patients recover and resume everyday life after curative hepato-pancreato-biliary (HPB) surgery with intestinal reconstruction has, to our knowledge, not previously been investigated. Evidence suggests that standardised follow-up does not improve survival rates, but follow-up should rather focus on symptoms, nutrition, and psycho-social support to improve quality of life [1,2,3]. This is especially important in cancer diseases, where there is no curative treatment available on recurrence, but only a question of choosing the best palliative support for the individual patient [2, 3]. Patients may experience burdensome symptoms, pain and fundamental bodily changes which complicate rehabilitation and return to every-day life [5, 7,8,9]

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