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Well, I Wouldn't be Any Worse Off, Would I, Than I am Now? A Qualitative Study of Decision-Making, Hopes, and Realities of Adults With Type 1 Diabetes Undergoing Islet Cell Transplantation

Speight, Jane PhD; Woodcock, Alison J. PhD; Reaney, Matthew D. MSc; Amiel, Stephanie A. MD; Johnson, Paul MD; Parrott, Neil MD; Rutter, Martin K. MD; Senior, Peter PhD; Shaw, James A.M. PhD

doi: 10.1097/TXD.0000000000000581
Pancreas and Islet Transplantation

Background: For selected individuals with type 1 diabetes, pancreatic islet transplantation (IT) prevents recurrent severe hypoglycemia and optimizes glycemia, although ongoing systemic immunosuppression is needed. Our aim was to explore candidates and recipients' expectations of transplantation, their experience of being on the waiting list, and (for recipients) the procedure and life posttransplant.

Methods: Cross-sectional qualitative research design using semistructured interviews with 16 adults (8 pretransplant, 8 posttransplant; from 4 UK centers (n = 13) and 1 Canadian center (n = 3)). Interviews were audio-recorded, transcribed, and underwent inductive thematic analysis.

Results: Interviewees were aged (mean ± SD) 52 ± 10 years (range, 30-64); duration of diabetes, 36 ± 9 years (range, 21-56); 12 (75%) were women. Narrative accounts centered on expectations, hopes, and realities; decision-making; waiting and uncertainty; the procedure, hospital stay, and follow-up. Expected benefits included fewer severe hypoglycemic episodes, reduced need for insulin, preventing onset/progression of complications and improved psychological well-being. These were realized for most, at least in the short term. Most interviewees described well-informed, shared decision-making with clinicians and family, and managing their expectations. Although life “on the list” could be stressful, and immunosuppressant side effects were severe, interviewees reported “no regrets.” Posttransplant, interviewees experienced increased confidence, through freedom from hypoglycemia and regained glycemic control, which tempered any disappointment about continued reliance on insulin. Most viewed their transplant as a success, though several reflected upon setbacks and hidden hopes for becoming “insulin-free.”

Conclusions: Independently undertaken interviews demonstrated realistic and balanced expectations of IT and indicate how to optimize the process and support for future IT candidates.

1 AHP Research, Hornchurch, United Kingdom.

2 The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria, Melbourne, Australia.

3 School of Psychology, Deakin University, Burwood, Australia.

4 Department of Psychology, Royal Holloway, University of London, Egham, United Kingdom.

5 Diabetes Research Group, King's College London School of Medicine, United Kingdom.

6 Nuffield Department of Surgery, University of Oxford, John Radcliffe Hospital, Oxford, United Kingdom.

7 Renal Transplant Unit, Manchester Royal Infirmary, Manchester, United Kingdom.

8 Manchester Diabetes Centre, Central Manchester University Hospitals, NHS Foundation Trust, Manchester, United Kingdom.

9 Cardiovascular Medicine Research Group, University of Manchester, Manchester, United Kingdom.

10 Division of Endocrinology, University of Alberta, Edmonton, AB, Canada.

11 Institute of Cellular Medicine, University of Newcastle, Newcastle, United Kingdom.

Published online 21 April 2016.

Received 16 October 2015. Revision requested 6 February 2016.

Accepted 14 February 2016.

Diabetes UK funded this work as part of the UK Islet Transplant Consortium project grant “Establishment of optimized biomedical and psychosocial measures to determine overall outcomes in islet transplant recipients” (no: BDA 06/0003362). Diabetes UK played no role in the preparation of this manuscript.

J.S. and M.D.R. disclose that AHP Research received consultancy fees from Astellas Pharma for an unrelated project to advise on the use of patient-reported outcome measures for the evaluation of antirejection medications used in transplantation. The remaining authors of this manuscript declare no conflicts of interest.

J.S. and J.A.M.S. conceived the qualitative study as part of the UK Islet Transplant Consortium research programme. J.S., J.A.M.S., A.W., and M.D.R. designed the interview schedule. J.S., M.D.R., and A.W. conducted the interviews. M.D.R. conducted preliminary analyses, and A.W. conducted in-depth analyses of the full data corpus. J.S. and M.D.R. each reviewed a selection of transcripts to verify the in-depth analyses. J.S. and A.W. prepared the first draft of this article. All other authors were involved in participant recruitment and management, contributed to revisions, and approved the final version of the article. J.S. and A.W. guarantee the content of this article.

Correspondence: Jane Speight, PhD, The Australian Centre for Behavioural Research in Diabetes, 570 Elizabeth Street, Melbourne 3000, Victoria, Australia. (jspeight@acbrd.org.au).

This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially.

© 2016 The Authors. Published by Wolters Kluwer Health, Inc.