Background: There is a pressing need for standardized measures to assess the quality of home-based serious illness care. Currently, there are no validated quality measures that are specific to home-based serious illness programs (SIPs) and the unique needs of their patients. Objective: To develop and evaluate standardized survey-based measures of serious illness care experiences for assessing and comparing quality of home-based serious illness care programs. Methods: From October 2019 through January 2020, we administered a survey to patients who received care from 32 home-based SIPs across the United States. Using the 2263 survey responses, we assessed item performance and constructed composite measures via factor analysis, evaluated item-scale correlations, estimated reliability, and examined validity by regressing overall ratings and willingness to recommend care on each composite. Results: The overall survey response rate was 36%. Confirmatory factor analyses supported five composite quality measures: Communication, Care Coordination, Help for Symptoms, Planning for Care, and Support for Family and Friends. Cronbach's alpha estimates for the composite measures ranged from 0.69 to 0.85, indicating adequate internal consistency in assessing their underlying constructs. Interprogram reliability ranged from 0.67 to 0.80 at 100 completed surveys per measure, meeting common standards for distinguishing between programs' performance. Together, the composites explained 45% of the variance in patients' overall care ratings. Communication, Care Coordination, and Planning for Care were the strongest predictors of overall ratings. Conclusion: Our analyses provide evidence of the feasibility, reliability, and validity of proposed survey-based measures to assess the quality of home-based serious illness care from the perspective of patients and their families.
Keywords: patient and family care experiences; patient survey; quality measurement; serious illness care.