A SHORTLIST OF MEASURES FOR PERSON CENTRED COORDINATED CARE

Measures for Person Centred Coordinated Care is an NHS England funded project undertaken by the Primary Care Group at Plymouth University. The research was also supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula at the Royal Devon and Exeter NHS Foundation Trust.

The aim of the project is to deliver a portfolio of intelligence about measures for Person Centred Coordinated Care (“P3C”) for people with Long-Term Conditions (LTCs), multiple-LTCs, and those at the End of their Life (EoL). One component of this project was to provide a compendium of measures – defined as Patient Reported Outcomes Measures (PROMs) and Patient Reported Experience Measures (PREMs) – that can be utilised within programs that aim to deliver or evaluate P3C in the target populations.  This website provides a user-friendly frontend to that compendium, with the aim to act as a gateway to measures for person centred care. 

In the shortlist, we signpost to some examples of person-centred coordinated care (“P3C”) and Quality of Life (QoL) measures.  It is a complex and disparate world – encompassing multiple concepts and domains – and hopefully this resource helps make some sense of it. However, the vastness of the task means that comprehensive review is unfeasible, but where possible we direct users to further resources of appropriate information.

To identify our shortlist of P3C measures, we first scoped for existing measures, followed by a pragmatic shortlisting process. For the scoping, we trawled a number of sources (including existing databases, compendiums and academic literature) to identify patient-reported measures (PRMs).  This identified several hundred candidate measures that were available. 

For the shortlisting process,  we pragmatically shortlisted measures in a number of categories, identifying those measures in each group that had the best overall characteristics  - such as measures that had the lowest respondent burden (i.e. we preferred those that tended to be short), good coverage of the target domains and adequate psychometric properties. More details about the scoping and shortlisting process will be detailed in our report, the publication of which will be forthcoming (and linked here).

Most of the measures that we identified are included in the “Full Database”, although many of these entries were not shortlisted (e.g. they were too long, or didn’t cover our target domains).  Those entries that were not shortlisted tend to have very sparse information available.  In contrast, entries that are discussed in the shortlist tend to have more complete information, often including links to the survey instrument, graphical representation of the domains covered, and (when available) systematic review of the psychometric properties of the survey instrument.

Mostly, we have focused on those measures that are patient reported.  However, in some instances – such as dementia and end-of-life care – we have also included tools where it is necessary to use a proxy respondent, such as healthcare professional or carer.