Exploring patient-reported outcomes to assess progress in inpatient low vision rehabilitation

TL;DR

This study explores patient-reported outcomes in low vision rehabilitation to guide the development of effective outcome measures.

Contribution

The study identifies potential patient-reported outcomes and factors influencing low vision rehabilitation effectiveness.

Findings

Seven potential PROs were identified, including mindset, practical skills, and social participation.

Factors like patient characteristics, social support, and care quality influence these outcomes.

Implementation suggestions include using varied administration modes and reducing patient burden.

Abstract

To date, (cost-)effectiveness of multidisciplinary inpatient low vision rehabilitation (ILVR) programs is unknown and adequate patient-reported outcome measures (PROMs) are lacking. The purpose of this exploratory study was to identify relevant patient-reported outcomes (PROs) within ILVR, personal, contextual and procedural factors affecting ILVR outcomes, and PROMs implementation preferences.

Semi-structured interviews were conducted among adults with vision impairment (VI) who follow(ed) an ILVR program between January 2020 and January 2022 (n = 19). Healthcare providers of each professional group were interviewed as well (n = 10). Tailored interview guides were used to explore PROMs in ILVR from an early development stage. Interview data was sorted into categories of relevant PROs, personal, contextual and procedural factors, and implementation suggestions.

Participants indicated seven potential PROs: mindset, knowledge and strategies, practical skills, self-reliance, social participation, relationships and personal development. Personal, contextual and procedural factors affecting these PROs were related to patient characteristics, coping mechanisms, social support, rehabilitation circumstances, quality of care and transfer to the home environment. Implementation suggestions such as modes of administration, frequency, burden and customization were discussed.

This exploratory study provides the first step toward future development and implementation of PROMs in ILVR. Further establishment of a set of PROMS requires an extensive process of matching the themes with accurate PROMs, in which it seems generic and specific PROMs for individuals with VI can be effectively combined. Moreover, the accessibility and the burden on patients and healthcare providers should be taken into account, for example by using different modes of administration and computer adaptive testing.

The online version contains supplementary material available at 10.1186/s41687-025-00960-8.