What Do Patients Want? Outcome Measures in a Diverse World

Abstract

Purpose

Quantifying the outcomes of medical interventions has evolved, but challenges remain in hand surgery. Initially, hand surgeons used concrete assessments like range of motion and/or pinch strength. With a shift toward patient-centered care, numerous pathology-specific patient-reported outcome measures (PROMs) were developed. These measures typically used standardized closed-ended outcomes and mostly originated from Western country languages. However, it is unclear how well measures with specific items capture diverse patient values. Therefore, we used an open-ended PROM, the patient-specific functional scale (PSFS) to assess patients’ difficulties associated with daily living for the following two common hand diagnoses: carpal tunnel syndrome (CTS) and trigger finger (TF), allowing us to evaluate the breadth of variation of experiences and treatment goals across cultures.

Methods

We conducted a multi-institutional, international study on patients with a diagnosis of CTS and TF. Patient desires were recorded using the PSFS. Data were qualitatively interrogated using template analysis.

Results

Patient responses from 225 PSFS scores from three continents and five countries were evaluated. Patients provided diverse functional impacts from CTS/TF, which were categorized according to the International Classification of Functioning. There were diverse patient responses with variations in the proportion of domains represented in each country. Closed-ended PROMS (Quick disabilities of arm, shoulder, and hand; Boston carpal tunnel score; and PROM information system) did not fully capture the priorities identified by patients in each country. Although these PROMS measure specific outcomes, they do not address the broader range of issues that patients in different countries consider most important.

Conclusions

This study highlights the diversity of patients’ priorities in hand function. There is a clear cultural influence on the perception and prioritization of specific hand functions in daily life.

Clinical relevance

Standardized tools with closed formats miss the richness of the individuals’ goals, cannot adapt to new hand uses, and overlook cross-cultural differences. This weakness hinders the accurate evaluation of patient satisfaction and limits intercultural comparisons. Achieving truly patient-focused care necessitates more open and inclusive assessment tools.