Abstract
Objective
We identified and evaluated measures of identity used with adolescents/young adults aged 16–24 years living with long-term physical health conditions (LTC-P), focusing on the conceptualization, development, and psychometric properties of measures. Review funded by Sir Halley Stewart Trust and the University of Bath. Review protocol: https://osf.io/bhkze.
Method
Five databases (APA PsychNET, PubMed, Web of Science, SCOPUS, and CINAHL) were searched. Studies were included if they were peer-reviewed, reported participants aged 16–24 years with LTC-P, and used a quantitative identity measure. Psychometric properties and risk of bias were evaluated using Consensus-Based Standards for the Selection of Health Measurement Instruments V1 (COSMIN) quality criteria, and content validity was reviewed narratively. Data analysis and synthesis followed COSMIN methodology for reviews.
Results
Thirty-seven papers met inclusion criteria, involving 9,486 participants and 16 identity measures. Across the papers, identity was defined and conceptualized in varied ways. Only three measures, the Illness Identity Questionnaire (IIQ), Dimensions of Identity Development Scale (DIDS), and Identity Motives Scale (IMS), were used in multiple studies and assessed for psychometric quality. Evaluated properties included structural validity, internal consistency, measurement invariance, and construct validity. The IIQ and DIDS were tentatively recommended for use. The IMS was rated as needing further validation due to limited content validity.
Conclusions
The IIQ and DIDS may be appropriate when their conceptual focus aligns with research objectives. Remaining measures should be used cautiously; many lack developmental or condition-specific relevance. Future identity measure development should integrate lived experience, expert input, and rigorous psychometric testing to ensure tools are both meaningful and fit for purpose in target populations.
We identified and evaluated measures of identity used with adolescents/young adults aged 16–24 years living with long-term physical health conditions (LTC-P), focusing on the conceptualization, development, and psychometric properties of measures. Review funded by Sir Halley Stewart Trust and the University of Bath. Review protocol: https://osf.io/bhkze.
Method
Five databases (APA PsychNET, PubMed, Web of Science, SCOPUS, and CINAHL) were searched. Studies were included if they were peer-reviewed, reported participants aged 16–24 years with LTC-P, and used a quantitative identity measure. Psychometric properties and risk of bias were evaluated using Consensus-Based Standards for the Selection of Health Measurement Instruments V1 (COSMIN) quality criteria, and content validity was reviewed narratively. Data analysis and synthesis followed COSMIN methodology for reviews.
Results
Thirty-seven papers met inclusion criteria, involving 9,486 participants and 16 identity measures. Across the papers, identity was defined and conceptualized in varied ways. Only three measures, the Illness Identity Questionnaire (IIQ), Dimensions of Identity Development Scale (DIDS), and Identity Motives Scale (IMS), were used in multiple studies and assessed for psychometric quality. Evaluated properties included structural validity, internal consistency, measurement invariance, and construct validity. The IIQ and DIDS were tentatively recommended for use. The IMS was rated as needing further validation due to limited content validity.
Conclusions
The IIQ and DIDS may be appropriate when their conceptual focus aligns with research objectives. Remaining measures should be used cautiously; many lack developmental or condition-specific relevance. Future identity measure development should integrate lived experience, expert input, and rigorous psychometric testing to ensure tools are both meaningful and fit for purpose in target populations.
| Original language | English |
|---|---|
| Pages (from-to) | 1-26 |
| Number of pages | 26 |
| Journal | Journal of Pediatric Psychology |
| Early online date | 13 Feb 2026 |
| DOIs | |
| Publication status | Published - 13 Feb 2026 |
Data Availability Statement
Data available on request.Acknowledgements
The authors thank MSc students Holly Jamieson (H.J.) andFengyi Tao (F.T.) for assistance with screening and data
extraction. Additionally, they thank the authors of included
papers for their assistance in gathering information required
for the review.
Funding
The first author is supported by a doctoral scholarship funded by Sir Halley Stewart Trust and University of Bath. The funders had no role in the design of this study, analyses, or involvement in writing and submitting the manuscript.
Keywords
- identity
- young adults
- long-term physical health conditions
- measure
- COSMIN
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