Defining patient-centred outcomes to measure success in hearing rehabilitation with clients and professionals

Abstract

A variety of outcome measures are currently used for the assessment of hearing rehabilitation. However, there is to date no consensus about which outcome measures should be used, when they should be applied, and how they should be collected. In addition, most studies seeking to develop outcome measures for hearing rehabilitation services have primarily focused on the opinions and expertise of researchers, and to a lesser extent clinicians, rather than also involving clients of those services. The principles of experience-based co-design suggest that health services, researchers and policymakers should come together with clients and their families to design health services and define what metrics should be used for their success.

Objectives This study aimed to seek views and consensus from a range of key stakeholders to define which standardised client-centred outcome measures should be used, when they should be used, and how they should be delivered, in a national Australian publicly-funded hearing rehabilitation scheme. In addition, the study aimed to identify current and future potential mechanisms and systems to standardise the collection of data and reporting of outcomes, to enable comparison across clients and hearing service providers.

Methods

A group of hearing rehabilitation services clients identified by not-for-profit consumer organisations and a group of professional stakeholders involved in the delivery of hearing services in Australia took part in an online Delphi process. After an initial set of in-person workshops to scope the key issues upon which to develop the initial open-ended questions and subsequent Likert-scale statements addressing these issues, the statements were distributed to both groups as an online survey. The respondent ratings were summarised, and the summary was returned to respondents along with a second version of the questionnaire. This process was repeated once more. The five most important domains from both the professionals and the consumers’ perspectives were then combined, and a consensus workshop of professionals and client advocates agreed on the top four ranked domains.

Results

There was strong support among both groups for the move towards outcomes-based evaluation of hearing rehabilitation services. A variety of potential outcome domains were identified as likely relevant indicators of successful hearing rehabilitation, with the top four relating to domains of communication ability, wellbeing, personal relationships, and reduction in participation restrictions. There was little agreement on the preferred timepoints for collection of outcome measures, with respondents expressing the view that this should be established by research once a set of outcome measures has been selected. However, there was broad agreement that outcomes should be collected at baseline (before the provision of hearing rehabilitation) and no earlier than three months following the completion of rehabilitation. Several potential benefits and issues with the development of a national outcomes database/collection system were identified and prioritised.

Conclusion

These results suggest a set of outcome domains for the evaluation of hearing rehabilitation and provide important background information for the design of methods to implement them across hearing healthcare systems. However, the wide variety of suggested outcome domains and measures, potential purposes for outcomes collection, and concerns with the establishment of centralised national outcomes collection and analysis systems strongly suggest that ongoing stakeholder engagement will be vital for future implementation. In addition, further research is required to determine the optimal time following hearing rehabilitation to utilise any particular outcome measure.

David Allen

Senior Research Audiologist, Honorary Research Fellow

Dr David Allen is Head of Research at Incept Labs and a Senior Research Audiologist at the National Acoustic Laboratories.