Can we assess utility using the patient's own words?

Area of Science:

• Health Services Research
• Medical Decision Making
• Patient-Reported Outcomes

Background:

• Traditional utility assessment relies on healthcare provider terminology, potentially misrepresenting patient values.
• Effective medical treatment decision-making requires systematic elicitation of patient values, especially when interventions involve tradeoffs.

Purpose of the Study:

• To evaluate the feasibility of a novel utility assessment protocol using patients' own terminology.
• To assess the utility of individualized multidimensional quality of life (IMQOL) models derived from patient language.

Main Methods:

• A protocol was developed to elicit individualized multidimensional quality of life (IMQOL) models from patients.
• Fifteen dialysis patients were interviewed using the protocol to create their IMQOL models.
• IMQOL models were used to assess different dialysis modes, complications, and current health status.

Main Results:

• The interview completion rate was 88.2%.
• 80% of participants indicated a desire for their IMQOL model results to guide decisions during mental incapacity.
• 53% found the IMQOL model represented their values as well as or better than traditional methods.

Conclusions:

• A utility assessment protocol using patient terminology is feasible and acceptable to patients.
• Patient-derived IMQOL models can effectively capture individual values for medical decision-making.
• This approach holds promise for improving shared decision-making and respecting patient preferences in healthcare.