What self-management outcomes matter most to patients, family care-givers, healthcare professionals and commissioners? Insight 2013

Study 1 – understanding what outcomes matter

Currently a disjoint exists between policies promoting self-management and the implementation in practice, as it is assumed that improvements in clinical indicators or health behaviours are the outcomes of most value. However, there is little empirical evidence that this is indeed the case, nor is there much about which outcomes are of most value to different stakeholder groups.

This in-depth study, focused on three exemplar long-term conditions (diabetes, stroke, colorectal cancer) relevant to self-management, aims to explore what outcomes are valued by four key stakeholder groups: patients; family, friends and carers; healthcare professionals; and commissioners.

The research adopts a three phased mixed methods approach:

• synthesis of existing evidence
• collation and analysis of qualitative data generated from a range of stakeholders
• a modified Delphi survey to determine what outcomes matter most to different stakeholders and to identify areas of consensus and disparity.

The findings can be used to improve health care by helping to inform and develop effective interventions and support systems that are meaningful to all stakeholders, and also to help guide the development of appropriate and valid outcome measures that capture the concepts relevant to all stakeholders.

Study 2 – helping commissioners measure what matters

The first study identified that commissioners were using mostly process measures, such as number of visits to Accident and Emergency or the number of unplanned hospital admissions, as indicators of the success of self-management interventions. Commissioners rarely used patient reported outcomes measures (PROMS), which would allow them to evaluate how much benefit patients gained in terms of confidence, knowledge and skills from self-management interventions. They reported that this was because they didn’t know which measurement tools they should use and had concerns that they would take too long or be too difficult to use or interpret.

This study aims to develop a resource which will help commissioners to identify and select appropriate patient reported outcome measures:

• that assess the outcomes of SM that matter to patients, families, health professionals and commissioners - as identified by our first study
• which are psychometrically robust; and,
• have pragmatic utility.    

To do this we will:

• Review patient reported outcome measures (PROMS) used in studies included in the PRISMS meta-reviews of self-management interventions
• Map these against the concepts that matter framework developed in study 1
• Use the COSMIN checklist to assess the psychometric properties of the outcome measures
• Evaluate pragmatic utility by scoring patient time, staff time, costs to use for each PROM
• Create an on-line resource with links to the PROMS and psychometric and pragmatic evaluation scores
• Get commissioner feedback on usage and usefulness.

Stage one of the research is due to be completed in early 2016 and stage 2 in early 2017.

Contact details

For more information about this project, please contact Darshan Patel, Research Manager and Sara Demain, University of Southampton.