Psychometric Analyses of Commonly Used Patient‐Reported Outcome and Experience Measures in Genetic Counseling Research: Findings From the GC ‐ PRO S

ABSTRACT

Patient‐reported outcome measures (PROMs) and patient‐reported experience measures (PREMs) are standardized questionnaires that evaluate patients' outcomes and experiences of health services, respectively. Despite their widespread use in genetic counseling (GC) research, many PROMs and PREMs lack comprehensive evidence of measurement quality, particularly regarding validity, fairness, and reliability. This study evaluated 10 commonly used PROMs/PREMs in Stage 1 of the GC‐PRO study by examining content validity, internal structure, relationships to other variables, fairness, and internal consistency reliability. A total of 453 patients receiving GC services across prenatal, cancer, cardiology, and general genetics specialties completed pre‐ and post‐session surveys that included three PROMs: Genetic Counseling Outcomes Scale (GCOS), Patient Activation Measure (PAM), SURE Decisional Conflict, and seven PREMs: Healthcare Climate Questionnaire (HCCQ), Genetic Counseling Satisfaction Scale (GCSS), Patient‐Centered Communication Scale (PCCS), State‐Based Information Overload, Working Alliance Inventory (WAI), CollaboRATE, and CAHPS Health Literacy Supplemental. Content validity was assessed through expert and community partner interviews. Confirmatory factor analysis evaluated the internal structure of each measure using standard model fit indices (χ ² , root mean square error of approximation, comparative fit index, and the standardized root mean square residual). Cronbach's alpha was calculated for all multi‐item scales. Five measures (e.g., GCSS, PCCS, HCCQ, WAI, and CollaboRATE) demonstrated generally strong psychometric performance across multiple forms of evidence. Psychometric results for the GCOS, PAM, State‐Based Information Overload, and SURE scale were mixed with some results providing evidence of good measurement quality while other sources of evidence suggested that refinement may be needed. Our multi‐faceted approach to psychometric evaluation of 10 commonly used PROMs/PREMs provides a foundation for improving the quality of these instruments in the GC field. Ultimately, our results argue against a “one‐size‐fits‐all” approach to outcome measurement in GC research.