OBJECTIVES: Increased use of cost-effectiveness analysis (CEA) in the US has provoked questions regarding the appropriateness of traditional methods for fully capturing health technology value. Researchers have explored the feasibility of integrating novel value measures (e.g., value of hope, scientific spillovers). We investigated patient and caregiver views on the importance of both traditional and novel domains of value, and assessed whether views differed according to participant characteristics.

METHODS: We conducted a web-based survey of adult patients managing a chronic condition, or caregivers of a patient with chronic illness. Participants rated 13 domains of value on a 5-point Likert scale (0=Not Important, 5=Very Important) and also ranked each domain they rated as important or very important.

RESULTS: Our sample population (n=63) was primarily comprised of patients (65%) and was mostly female (60%), aged between 35-54 years (54%), and managing only one chronic condition (68%). Approximately 70% and 30% of participants were recruited from general disease advocacy and patient activist networks, respectively. Scientific spillovers (mean: 3.87), equity (3.83), and costs (3.81) were rated the most important value domains, while adherence-improving factors and fear of contagion were rated lowest. Caregivers rated most value domains slightly higher than did patients, although differences were not significant. Compared to participants recruited via general disease advocacy networks, participants recruited from patient activist networks rated nearly all value domains as significantly more important (p<0.05) . In multivariate logistic regression predicting a 4 or 5 rating for any domain, patient status (OR: 0.66; 95% CI: 0.47, 0.93) and patient activist recruitment (OR: 3.88; 95% CI: 2.61, 5.79) were critical predictors.

CONCLUSIONS: Patients and caregivers vary in their consideration of the importance of novel domains of value. Policymakers should be cognizant of the perspectives that these stakeholders bring to assessment of both traditional and novel value domains.