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INTRODUCTION: Familial pancreatitis (FP) patients live with debilitating pain from a young age and have an increased risk of developing pancreas cancer. Quality of life (QOL) following total pancreatectomy with islet autotransplantation (TPIAT) in this patient population is not well understood.
METHODS: A prospectively collected database of patients undergoing TPIAT for FP was reviewed over a 1 year period. Data pertaining to insulin requirements and diabetes control, pain scores, and SF-12 physical quality of life (pQOL) and mental health QOL (mhQOL) (normal population 50, SD 10) in the perioperative period were reviewed. QOL is improved if the result increases by at least 3 points or is > or = to 35. Approval from the IRB was obtained.
RESULTS: Thirteen patients (6 males, median age 21, range 12-50) underwent TPIAT for FP. Average time from diagnosis to surgery was 10 years. Physical QOL (pQOL) changed from 35 pre-op to 39 at 6 months and 49 at 1 year. Mental health QOL (mh QOL) changed from 46 pre-op to 45 at 6 months and 41 at 1 year. Average pain score decreased from 3 pre-op to 2 at 6 months and at 1 year after surgery. 4/13 (30%) of patients were diabetics prior to surgery, 2 were insulin diabetics and took 10 and 40 units of insulin daily (u/D), and 2 were non-insulin diabetics. Number of islets transplanted averaged 186,297 (3,667 - 580,224). All patients required insulin post-op and averaged 26 u/D at 6 months and 32 u/D at 1 year following surgery. Average HbA1C was 5.7 pre-op, 8 at 6 months, and 8.2 at 1 year.
CONCLUSION: TPIAT effectively improves physical QOL in patients with FP despite all patients requiring daily insulin after surgery. Mental Health QOL remains normal after surgery. More experience is needed to better understand optimal timing of surgery but earlier referral may improve endocrine outcomes.