Quantifying Value of Hope

Abstract

Background: 'Hope' is a construct in patient-centered value frameworks, but few studies have attempted to measure the value of hope separately from treatment-related gains in quality of life and survival to support its application in economic evaluation.Objective: To generate quantitative information on the "value of hope".Methods: We designed a discrete-choice experiment in which treatment alternatives varied the probability of achieving 10year survival, expected survival as the weighted sum of short-term and long-term survival, health status, and out-of-pocket cost. Two-hundred patients with cancer or history of cancer recruited by Cancer Support Community each completed 10 choice questions. We used mixed-logit and latent-class models to analyze the choice data.Results: Relative to fixed survival periods of two, three or five years with 0% chance of 10-year survival, participants positively valued treatments with 5% and 10% chances of 10-year survival. However, participants negatively valued a 20% chance of 10year survival that required an offsetting 80% chance of shorter survival. This finding was particularly strong when expected survival was two years. Compared to a 0% chance, dollar-equivalent values of 5% and 10% chances of long-term survival were $5,975 and $12,421, respectively, independent of health status or expected survival. The corresponding value for 20% versus 0% chance of long-term survival was negative. Latent-class analysis revealed 4 groups with distinct preference patterns.Conclusions: Our findings affirm positive value for hope independent of expected survival and health status. However, this finding does not universally hold in all situations nor across all groups.

The Net Benefit of Personalized Medicine: A Systematic Literature Review and Regression Analysis

“…It has been argued that the QALY insufficiently captures the value of gene therapies and that additional value elements, such as the value of a cure (ie, nonhealth-related welfare benefits, such as being able to do more future-planning), should also be considered. Although there may indeed be benefits beyond QALYs to being completely cured of a condition, our findings suggest that, on average, the monetary value of these additional benefits would have to be Int$21 287417 per patient for the DNMB to no longer be negative, which arguably is implausibly high, especially in the light of a recent study by Reed et al 32 in which much lower figures are found for the "value of hope". The genetic therapies included in our analysis were treatments for spinal muscle atrophy (Spinraza, Zolgensma) and loss of vision because of inherited retinal dystrophy (Luxturna), and CAR-T cell therapies.…”

Should We Consider Including a Value for “Hope” as an Additional Benefit Within Health Technology Assessment?

“…Using a discrete choice experiment, Hauber et al 20 found that patients diagnosed of nonsmall cell lung cancer expressed a preference for increasing best case survival (of the 85th percentile) relative to expected survival (of the 50th percentile). Nevertheless, a clearer presentation of the survival options presented in a similar discrete choice experiment by Reed et al 21 with respondents with a history of cancer found that although respondents preferred options with a 5% and 10% chance of long-term survival when holding constant expected survival, at a 20% chance of survival, preferences were reversed.…”

Incorporating risk preferences of patients in the valuation of immune checkpoint inhibitors for non-small cell lung cancer

“…Another method to quantify ‘hope’ was presented by using a discrete choice experiment (DCE) ( 42 ). Using a DCE for 200 patients with cancer or a history of cancer, Reed et al.…”

“…First a pilot DCE was designed, and “participants were asked to assume that they had recently been diagnosed with cancer that had begun to metastasize” ( 42 ). Participants then had to consider choices “when expected survival was three years, with a given chance of 10-year survival, or a case with certain 3-year survival outcome (i.e., 10-year survival was zero)” ( 42 ). After piloting the DCE using general participants, cancer patients were asked to complete the online DCE survey.…”

“…After piloting the DCE using general participants, cancer patients were asked to complete the online DCE survey. The study authors found that the “estimated value of ‘hope’ for a 5% chance of survival was on average about $6,000, and 10% for $12,500” ( 42 ). “With a life expectancy of 5 years, when a 20% chance of 10-year survival corresponds to 80% of an average 3.8 years, participants’ choices were consistent with expectations according to utility theory and risk neutrality” ( 42 ).…”