ABSTRACT
Purpose: We aimed to investigate patient and caregiver views on the relative importance of traditional and nontraditional domains of value, and to determine if these views differed according to key demographic characteristics.
Patients and methods: We conducted a modified Delphi approach using a web-based survey of adult patients managing a chronic condition or caregivers of a patient with chronic illness who were recruited using purposive sampling focused on demographic and clinical characteristics. The first survey round asked participants to rate the 13 domains of value on a 5-point Likert scale and rank each domain that they rated as important or very important. In the second survey round, participants reconsidered their own and aggregated round 1 results. New questions were added, including "rescuing" domains, challenges faced in taking medication, and a free-text option to add domains not already captured.
Results: Initial recruitment resulted in 79 participants. Sixty-three (79.7%) completed the first round, and 58 participants completed both rounds. Overall ratings and rankings were consistent between survey rounds, and respondents ranked most highly domains considered traditional domains of value (for example, survival, costs). Patient activists were about six times more likely to rate each domain as important or very important compared to general disease advocates. Significant factors associated with a higher odds of rating a domain as important or very important were age 35-54 and 55-64 compared to 18-34, while factors associated with a decreased odds were males and patients compared to caregivers.
Conclusion: Patients and caregivers place significant emphasis on traditional measures of value compared to nontraditional measures, and participants' prior beliefs impact what aspects of value they deem important.