Using patient?reported outcome measures (PROMs) in long?term conditions in primary care

Background

Ensuring positive outcomes for patients is a central feature of current government policy, and improving quality of life of patients with long?term conditions (LTCs) is a key domain of the Department of Health Outcomes Framework. The use of patient?reported outcome measures (PROMs) in LTCs may present a method to gain more information on quality of life and outcomes in a similar manner to the use of PROMs in surgical procedures.

Since April 2009, PROMs have been used to assess outcomes in four surgical procedures (hip or knee replacement, varicose veins surgery or groin hernia repair) on a routine basis in the NHS. The role of PROMs in these four elective surgical procedures is relatively straightforward as they are used to help assess the effectiveness of single, discrete procedures in relation to patients with fairly clearly?defined problems for which surgery is normally effective.

The role of PROMs is far less clearly understood with regard to LTCs such as chronic obstructive pulmonary disease (COPD), diabetes and stroke. LTCs are complex to manage as they pose multiple physical, social and emotional problems, with diverse service providers and interventions involved over long time-lines. Often the objectives of services are to maintain or avoid deterioration in function, autonomy and well?being rather than achieve major health gains observed in, for example, hip and knee replacement surgery. This means that their role is more challenging to identify but potentially even more positive, particularly if they facilitate patient involvement and personalised care.

This was a pilot study to investigate the feasibility of using PROMs in people with LTCs in primary care. The LTCs include asthma, COPD, epilepsy, diabetes, heart failure and stroke. If the use of PROMs is feasible in LTCs, their application can be extended to a broader use than the current programme for four elective surgical procedures.

Aims

To assess the feasibility and acceptability of collecting patient?reported outcome measures (PROMs) data through primary care for one of six LTCs (asthma, COPD, diabetes, epilepsy, heart failure and stroke)
To assess differences in response rates and completeness of data between two alternative strategies of survey data collection (cohort vs cross?sectional)
To examine differences in response rates and completeness of data between different conditions, and in terms of other patient characteristics
To gather information on resources needed for using PROMs in primary care
To understand the extent to which PROMs data produce evidence that is useful to various stakeholders

Methods

A mixed?method strategy of data collection and analysis was used to assess the various objectives. The majority of evidence was quantitative, but qualitative data and analysis were used to gain evidence of the usefulness of PROMs to stakeholders.

The quantitative methods were two surveys in which PROMs were administered either as repeated cross?sectional surveys or as cohort?type surveys. The data for the cohort survey were collected twice, one year apart. This meant that the study tested two ways of openly and explicitly engaging and involving respondents in providing PROMs data. The questionnaires consisted of a core of two PROMs instruments, one generic and one disease?specific, and a small number of additional demographics and comorbidity questions.

Patients identified through the Quality and Outcomes Framework (QOF) were recruited through GP practices in the north?west of England and London. Eligible patients were identified through an automatic database search by a subcontracted IT company. Half of the patients in each practice were invited into the cohort survey and half were invited into the cross?sectional survey. Patients were eligible if they were aged 18 years or over and if they had one of the six LTCs. Practices had the opportunity to exclude patients whom they did not consider suitable to be included in the study. Patients with multiple LTCs were sent a questionnaire for the rarest LTC. Survey data were analysed to compare response rates and PROMs scores between the participating practices for each LTC, adjusted for co?variates such as age, gender and co?morbidities. Analyses also compared response rates and PROMs scores for the two types of survey, and assessed the rate of missing data for each of the LTCs. The data was entered and verified by a professional data-entry company. The qualitative part of the study involved gaining feedback from lay and professional stakeholders about the value of the PROMs data from the surveys. Stakeholders have been presented with a summary of the findings and were invited to give feedback on the value of the data. A thematic analysis of the data was conducted using NVivo.

Timing and outputs

The project ran until October 2012 and is now complete. The results of the study will be used to evaluate the feasibility of using PROMs in LTCs in primary care and to assess the extent to which PROMs data is viewed as useful by various stakeholders.

Michele Peters, Helen Crocker, Crispin Jenkinson, Helen Doll, Ray Fitzpatrick (2014) The routine collection of patient-reported outcome measures (PROMs) for long-term conditions in primary care: a cohort survey, BMJ Open, DOI:10.1136/bmjopen-2013-003968 [21 Feb 2014] [Link]

Michele Peters, Helen Crocker, Sarah Dummett, Crispin Jenkinson, Helen Doll, Elizabeth Gibbons, Ramon Luengo-Fernandez, Ray Fitzpatrick (2013) Pilot study of patient reported outcome measures (PROMs) in primary care, Department of Public Health, University of Oxford, Oxford [Link]

Michele Peters, Helen Crocker, Sarah Dummett, Crispin Jenkinson, Helen Doll, Ray Fitzpatrick (2014) Change in health status in long-term conditions over a one year period: a cohort survey using patient-reported outcome measures, journal submission in process.

Research team

Michele Peters, Ray Fitzpatrick, Crispin Jenkinson