Currently submitted to: Journal of Medical Internet Research
Date Submitted: Sep 28, 2017
Open Peer Review Period: Sep 28, 2017 - Nov 23, 2017
Title: Patient reported measures for person-centred coordinated care: a comparative domain map and online compendium for supporting policy development and implementation.
Patient Reported Measure (PRM) questionnaires were originally used in research to measure outcomes of intervention studies. They have now evolved into a diverse family of tools measuring a range of constructs including quality of life (QoL) and experiences of care. Current health and social care policy increasingly advocates their use for embedding the patient voice into service redesign through new models of care such as Person Centred Coordinated Care (P3C). If chosen carefully and used efficiently, these tools can help improve care delivery through a variety of novel ways, including system-level feedback for healthcare management and commissioning. Support and guidance on how to use these tools would be critical to achieve these goals.
To develop evidence based guidance and support for the use of P3C-PRMs in health and social care policy through: 1) identification of PRMs that can be used to enhance the development of P3C; 2) mapping P3C-PRMs against an existing model of domains of P3C; and 3) integration and organisation of the information in a user-friendly online database.
A pragmatic approach was used for the systematic identification of candidate P3C-PRMs, which aimed at balancing comprehensiveness and feasibility. This utilised a number of resources, including existing compendiums, published and grey literature (using a flexible search strategy) and stakeholder engagement (which included guidance for relevant clinical areas). A subset of those candidate measures (meeting pre-specified eligibility criteria) were then mapped against a theoretical model of P3C, facilitating classification of the construct being measured and the subsequent generation of shortlists for: 1) generic P3C measures, 2) specific aspects of P3C (e.g. “communication” or “decision making”), in addition to 3) condition specific measures (e.g. diabetes, cancer, stroke etc.) in priority areas as highlighted by stakeholders.
In total, 328 P3C-PRMs were identified, which were used to populate a freely available online database (“the compendium”). 63 of these P3C-PRMs met eligibility criteria for shortlisting and were classified according to their measurement constructs and mapped against the theoretical P3C model. We identified tools with the best coverage of P3C, thereby providing evidence of their content validity as outcome measures for new models of care. Transitions and medications were two areas currently poorly covered by existing measures All the information is currently available at a user-friendly online portal (p3c.org.uk), which includes all relevant information on each measure such as the constructs targeted, links to relevant literature, item lists of the mapped measures, in addition to shortlists according to relevant constructs.
A detailed compendium of P3C-PRMs has been developed using a pragmatic systematic approach supported by stakeholder engagement. Our user-friendly suite of tools is designed to act as a portal to the world of PRMs for P3C, and have utility for a broad audience, including (but not limited to) healthcare commissioners, managers, and researchers.