Patient-generated, patient-reported outcome measures (PG-PROMs)

South LondonMental Health
Start Date: 1 Jan 2014

Patient-generated, patient-reported outcome measures (PG-PROMs) 

What are patient-reported outcome measures (PROMs)?

'Patient-reported outcome measures' (PROMs) are questionnaires used by researchers and healthcare professionals to determine whether patients think a treatment or service is working.

By comparing a patient or service user's views about their symptoms or quality of life at different times, professionals can measure the effectiveness of care.

Since 2009, for example, hospitals in England have asked patients to complete PROMs before and after four common surgical procedures: groin hernia operations, hip replacements, knee replacements and varicose vein operations.

The information collected on PROMs can be used to help prove the success of a treatment or service and may influence NHS spending decisions. The information can also allow comparisons to be made between different providers of health services.

There are thousands of PROMs that seek to ascertain the views of patients and service users about different aspects of their care, but the majority have developed by researchers.

Professor Diana Rose, who is leading the CLAHRC South London's work about patient and public involvement, has been involved in creating a method for producing patient-generated PROMS(1) – questionnaires that are developed by patients and service users who have personal experience of the relevant condition.

Research has shown that a professional's view of what constitutes a 'good outcome', or what aspects of health or care should be measured, doesn't always tally with the opinion of the individual whose condition and life is being assessed(2).

Professor Rose is co-director of the Service User Research Enterprise at the Institute of Psychiatry, King's College London and she and her colleagues there have developed four patient-generated PROMs(3) for use in research. Their method uses focus groups, expert panels and then psychometric testing to ensure each measure's validity. The development of each patient-generated PROM is led by a researcher who has personal experience of that particular condition, or service, or treatment – as do members of the focus groups.

The CLAHRC South London PPI team will develop new patient-generated PROMs to support some of the research being carried out by other CLAHRC South London specialist teams.

How do PROMs compare to traditionally prepared outcome measures?

The CLAHRC research team has recently completed an evaluation of the PROMs against traditionally prepared outcome measures. They analysed psychological interventions in psychiatric acute wards comparing conventional outcome measures against measures based on the perspective of patients or service users. This showed that the patient-generated PROMs are more sensitive to changes brought about by psychological interventions on acute wards.

As a result, in March 2017, NICE recommended the CLAHRC’s PROMs as a tool to help commissioners assess acute mental health services.

Professor Rose says: "The effectiveness of these PROMs when compared with conventional ‘top-down’ measures has implications for other areas of health care which rely on measures developed by academics or clinicians, and which could benefit from developing measures based on the perspective of patients or service users.’’

Prof Diana Rose