Diabetes distress instruments in adults with Type 1 diabetes: A systematic review using the COSMIN (COnsensus-based Standards for the selection of health status Measurement INstruments) checklist

Diabet Med. 2021 Apr;38(4):e14468. doi: 10.1111/dme.14468. Epub 2020 Dec 2.


Aims: To identify all extant instruments used to measure diabetes distress in adults with Type 1 diabetes and to evaluate the evidence for the measurement properties of these instruments.

Methods: Medline, Embase, CINAHL plus and PsycINFO were systematically searched from inception up until 12 March 2020 for all publications which evaluated the psychometric properties of diabetes distress measurement instruments. The quality of the methodology and the measurement properties in the identified studies were evaluated using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines.

Results: Seven out of the 7656 articles retrieved in the search were included in the final review. Four diabetes distress measurement instruments were identified, none of which displayed evidence for all measurement properties specified in the COSMIN guidelines. The Problem Areas in Diabetes-11 (PAID-11) demonstrated the best psychometric properties, displaying strong evidence for structural validity, internal consistency, hypothesis testing, responsiveness and criterion validity. The Problem Areas in Diabetes scale (PAID) was the most frequently investigated instrument, demonstrating good relevance and hypothesis testing across four studies; however, concerns remain over its factor structure.

Conclusion: The PAID-11 appears to be the most psychometrically sound instrument for measuring diabetes distress in adults with Type 1 diabetes, displaying strong evidence for a range of measurement properties. However, as only one study evaluated this instrument and its content validity has yet to be assessed, further validation is warranted. Additional qualitative work is needed to assess the content validity of these instruments among individuals with Type 1 diabetes.

Keywords: Type 1 diabetes; diabetes distress; emotional distress; psychometric properties; systematic review.

Publication types

  • Research Support, Non-U.S. Gov't
  • Systematic Review

MeSH terms

  • Adult
  • Checklist / methods*
  • Checklist / standards
  • Consensus
  • Diabetes Mellitus, Type 1 / diagnosis
  • Diabetes Mellitus, Type 1 / psychology*
  • Health Status
  • Humans
  • Practice Guidelines as Topic
  • Psychological Distress
  • Psychometrics / methods*
  • Psychometrics / standards
  • Reproducibility of Results
  • Stress, Psychological / diagnosis*