Development of a conceptual model for research on cyclical variation of patient reported outcome measurements (PROMs) in patients with chronic conditions: a scoping review

BACKGROUND: Although circadian, seasonal, and other cycles have been observed for a number of chronic conditions, their impact on patient reported outcomes measurements (PROMs) has not been systematically explored, rendering our understanding of the effect of time of measurement on PROM scores very limited. The aim was to conduct a scoping review to determine what is known about how intra-individual cyclical variation might affect the way individuals with chronic conditions respond to patient-reported outcome measures. METHODS: A protocol of a systematic scoping review was registered on PROSPERO (CRD42017058365). We developed a search strategy based on previous relevant reviews and implemented it in: MEDLINE, Embase, PsycINFO, and CINAHL. No restrictions were placed on article types and backward and forward citation searches were conducted. Screening and data extraction were independently completed by up to four reviewers. An adapted version of CASP criteria was used to appraise the quality of included articles. Concepts that were important in understanding the impact of cyclical variation on PROM scores were elicited from the papers and iteratively refined through discussion amongst the authors. RESULTS: 2420 references resulted from the searches, with 33 articles meeting the inclusion criteria. Most study designs included observational research (particularly ecological momentary assessment), 2 were RCTs and 2 were systematic reviews. Studies mainly focused on specific health conditions: mental health, respiratory and musculoskeletal. There was a lack of qualitative research and theoretical framework to explore these concepts more fully. Five overarching concepts emerged: variation in outcomes, variation of scores, psychological status, individual factors, and environmental/situational factors. A conceptual model was developed outlining the relationships between these concepts. CONCLUSIONS: There is empirical evidence that supports cyclical variation in PROM scores across different chronic conditions, with potential very significant implications for administration and interpretation of PROMs. The proposed conceptual model can support further research in this area. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s41687-021-00395-x.