Evaluating and Quantifying User and Carer Involvement in Mental Health Care Planning (EQUIP): Co-Development of a New Patient-Reported Outcome Measure.

Claire Fraser,Takeru Abe,Patrick Callaghan,Penny Bee,Karina Lovell,Chris Gibbons

doi:10.1371/journal.pone.0149973

Abstract

International and national health policy seeks to increase service user and carer involvement in mental health care planning, but suitable user-centred tools to assess the success of these initiatives are not yet available. The current study describes the development of a new reliable and valid, interval-scaled service-user and carer reported outcome measure for quantifying user/carer involvement in mental health care planning. Psychometric development reduced a 70-item item bank to a short form questionnaire using a combination of Classical Test, Mokken and Rasch Analyses. Test-retest reliability was calculated using t-tests of interval level scores between baseline and 2–4 week follow-up. Items were worded to be relevant to both service users and carers. Nine items were removed following cognitive debriefing with a service user and carer advisory group. An iterative process of item removal reduced the remaining 61 items to a final 14-item scale. The final scale has acceptable scalability (Ho = .69), reliability (alpha = .92), fit to the Rasch model (χ2(70) = 97.25, p = .02), and no differential item functioning or locally dependent items. Scores remained stable over the 4 week follow-up period, indicating good test-retest reliability. The ‘Evaluating the Quality of User and Carer Involvement in Care Planning (EQUIP)’ scale displays excellent psychometric properties and is capable of unidimensional linear measurement. The scale is short, user and carer-centred and will be of direct benefit to clinicians, services, auditors and researchers wishing to quantify levels of user and carer involvement in care planning.

Highlights

Mental health services have undergone marked transformation over the last decade, reflecting a shift towards user-led models of care
Promoting shared decision making and involving service users and carers in care planning are central to national policy initiatives aimed at optimising recovery and improving the quality of mental health care [12]
Despite long standing support for the ideology of user/carer involvement, patient-reported measures of participatory care are lacking. Current measures, such as those used by the UK Care Quality Commission (CQC), focus on objective indicators of care planning administration rather than those aspects of care planning that service users value most

Summary

Introduction

Mental health services have undergone marked transformation over the last decade, reflecting a shift towards user-led models of care. Consolidation of contemporary care philosophies including patient-centred care [1], shared decision-making [2] and patient empowerment [3] have led to a rise in recovery-orientated services and a long standing drive towards increased service user and carer involvement in care planning. In the UK, this shift is most recently reflected in the personalisation agenda championed by adult social care, and gives rise to increasing demands for service implementation, local and regional evaluations and nationallevel audits focussed on service user and carer experience. Data from PROMs are increasingly being incorporated into audits and research trials, and when aggregated and analysed at a systems level, provide a viable means by which to improve care quality and health outcomes across services and specialities [4,5]

Objectives

Methods

Results

Conclusion