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Fragmented patient-reported outcome measures currently characterize the clinical landscape of type 3c diabetesMapping how patients experience life with type 3c diabetes

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Key Takeaway
Note that patient-reported outcome measures for type 3c diabetes are currently fragmented and lack standardization.

This scoping review maps the availability and standardization of patient-reported outcome measures (PROMs) specifically for adults with type 3c diabetes. The review analyzed 40 reports to identify tools measuring generic health, physical function, and specific quality of life metrics such as PAID, ADDQoL, and treatment satisfaction.

Findings indicate that generic health and physical function are often impaired following total pancreatectomy. In some comparator studies, outcomes for PAID, ADDQoL, and treatment satisfaction were reported as similar to those seen in patients with type 1 or other insulin-treated diabetes. However, the review noted that the SARC-F measure was not used in any report.

The authors highlight significant limitations, noting that only six reports were available in full text. Furthermore, favorable technology signals were based on abstract-based reports and were considered hypothesis-generating. The current measurement of patient-reported burden in type 3c diabetes is fragmented. Future research should aim to combine complementary measures and report specific details regarding etiology, timing, and resection extent to improve clinical utility.

How this fits prior evidence

This scoping review addresses a gap in the clinical management of type 3c diabetes by mapping available patient-reported outcome measures. While previous coverage has addressed complications in cystic fibrosis, such as lung function and muscle mass, this review focuses specifically on the fragmented reporting of patient-reported burden in type 3c diabetes. It identifies that while some outcomes mirror those in other insulin-treated diabetes, specific measures for physical function are often impaired post-pancreatectomy.

Living with type 3c diabetes—a form of diabetes that occurs after surgery to remove the pancreas—comes with unique challenges. For many patients, this condition follows a total pancreatectomy. While doctors track blood sugar, it is just as important to understand how patients actually feel about their daily lives and physical abilities.

Researchers looked at 40 reports to map out how we measure these experiences. They found that patients with type 3c diabetes often show poorer physical function and general health compared to others. However, when looking at specific measures like treatment satisfaction, some patients reported results similar to those with type 1 diabetes.

Because the current tools to measure these experiences are fragmented, more consistent data is needed. The review noted that many of the findings were based on summaries rather than full texts, meaning the evidence is still early. More research is needed to combine different measures and better understand how the timing and extent of surgery affect a person's quality of life.

What this means for you:
Patients with type 3c diabetes often face physical and health challenges that need better, more consistent tracking.

Common questions

What is type 3c diabetes?

Type 3c diabetes is a form of diabetes that occurs after a total pancreatectomy, which is the surgical removal of the entire pancreas. This condition can affect how a person's body manages blood sugar and impacts their overall health and physical function.

How does type 3c diabetes affect daily life?

Research shows that general health and physical function are often impaired after a total pancreatectomy. While some patients report treatment satisfaction similar to those with type 1 diabetes, the current ways to measure these personal experiences are still fragmented.

Study Details

Study typeSystematic review
EvidenceLevel 1
PublishedSep 2026
View Original Abstract ↓
BackgroundType 3c diabetes is a heterogeneous secondary diabetes caused by pancreatic disease, injury or resection. Glycaemic outcomes alone do not capture the combined effects of insulin deficiency, impaired counter-regulation, exocrine insufficiency, pain, altered nutrition and treatment burden. We mapped standardized patient-reported outcome measures (PROMs) across aetiologies and pancreatic resection extent.MethodsMEDLINE via PubMed, Scopus and Web of Science Core Collection were searched from inception to 23–24 July 2026, supplemented by public trial registries and targeted citation checking. A scoping review framed by Population–Concept–Context followed JBI guidance and PRISMA-ScR. An automation-assisted title/abstract pathway was followed by independent report-level adjudication by two reviewers.ResultsThe searches yielded 5,132 records and 3,372 unique database records after deduplication. Fifty-six reports underwent independent report-level adjudication; one was not retrieved, 15 were excluded and 40 were included. In a reproducible post hoc random validation sample of 200 of 3,321 early exclusions, exact and binary reviewer agreement were 100% (Cohen’s kappa = 1.00); three records marked unclear by both reviewers were excluded after targeted adjudication, leaving no eligible record in the sample (0/200; Wilson 95% confidence interval 0–1.88%). Twenty-six included reports concerned pancreatic resection or an insulin-treated TPIAT subgroup, 11 cystic-fibrosis-related diabetes, two diabetes secondary to chronic pancreatitis and one fibrocalculous pancreatic diabetes. Generic health and physical function were often impaired after total pancreatectomy, whereas some comparator studies reported similar PAID, ADDQoL or treatment-satisfaction results to type 1 or other insulin-treated diabetes. No report used SARC-F. Only six reports were available to the authors in full text; the favorable technology signals depended on abstract-based reports and were therefore hypothesis-generating.ConclusionsPatient-reported burden in type 3c diabetes is multidimensional and measurement remains fragmented. Future studies should combine complementary measures and report aetiology, diabetes timing and total versus partial resection explicitly.
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