Evaluating the measurement properties of patient-reported outcome measures for young adults with life-limiting conditions: A systematic review.

BACKGROUND

The number of young adults living with life-limiting conditions is increasing. This population requires palliative care responsive to their needs and preferences.

AIM

To identify patient reported outcome measures developed, adapted and validated to assess the health outcomes of young adults (aged 18-25 years) living with life-limiting conditions. To examine their measurement properties and identify the most comprehensive, valid and reliable measures.

DESIGN

A systematic review and evaluation of measurement properties. PROSPERO ID (CRD42023443273).

DATA SOURCES

MEDLINE; EMBASE; CINAHL; PsycInfo; AMED and Cochrane Library from inception to 03/07/2023. Searches were emented by hand-searching references.

RESULTS

Four thousand nine hundred twenty-two papers were identified. Five hundred and fifty-six full texts were assessed for eligibility. Thirty-five papers reporting 68 patient reported outcome measures were included. Most studies recruited young adults living with cancer ( = 29/35), we did not identify any studies with young adults living with complex neurodisability. Most measures ( = 61/68) were existing paediatric or adult patient reported outcome measures. Seven ( = 7/68) were young adult measures. Most were two-dimensional. The most assessed measurement properties were internal consistency, construct validity and structural validity. None of the measures were recommended for use as they did not meet sufficient criteria for content validity and internal consistency.

CONCLUSION

There is a lack of multi-dimensional patient reported outcome measures for young adults living with life-limiting conditions, especially for non-cancerous conditions. Future studies may identify existing holistic measures developed for children or adults and adapt them for use with young adults. Studies should ask young adults and professionals about the relevance, comprehensiveness and comprehensibility of items.