Total pancreatectomy with islet autotransplantation (TPIAT) can effectively improve pain and functional impairment associated with chronic pancreatitis (CP) in children. However, children undergoing this procedure usually develop post-pancreatectomy diabetes and require chronic insulin therapy. It can be difficult for providers and patients to conceptualize trading the symptoms of CP for the burden of diabetes. Therefore, we sought to evaluate diabetes-related quality of life (QOL) over time in children who underwent TPIAT, and compare QOL scores post-TPIAT with children who have type 1 diabetes (T1D). The Pediatric Quality of Life Inventory (PedsQL) 3.2 Diabetes Module was used to assess diabetes-related QOL. PedsQL scores were evaluated in 46 children (<20 years old) who underwent TPIAT and completed at least one survey. PedsQL data was collected at 3, 6, 9, 12, 18, and 24 months post-TPIAT. Total and Subscale scores were analyzed for change over time. The TPIAT cohort PedsQL scores at 24 months (n=16) were then compared to PedsQL scores from a historical cohort of demographically similar (age, race, sex) patients 24 months after new onset T1D (n=58). Mean age at TPIAT was 12.6 ± 4.7 years and 67% were female. Mean age at T1D diagnosis was 11.2 ± 3.2 years and 69% were female. The Diabetes Symptoms subscale (p=0.03) and the Total Score (p=0.049) decreased (worsened) over 24 months post-TPIAT (Diabetes subscale: median 68 to 56; Total Score: median 75 to 68). The other subscales did not significantly change over that time. At 24 months after diabetes onset, no PedsQL subscales were different between the TPIAT cohort and T1D cohort (all p>0.2). The Total PedsQL score, mostly attributable to the Diabetes Symptoms subscale, decreased over time in patients who underwent TPIAT. Additionally, diabetes-related QOL at 24 months was not significantly different from children with T1D. This data may be used to help counsel families who are considering TPIAT for treatment of CP.
J.M. Redel: None. L. Hornung: None. D.A. Elder: None. J.D. Nathan: None. M. Abu-El-Haija: None.
Cincinnati Children’s Hospital