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This study aims to find out if health questionnaires are an acceptable way of collecting health information for long-term conditions (LTCs) in primary care. The six LTCs are asthma, COPD, diabetes, epilepsy, heart failure and stroke.

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Background

Patient-reported outcome measures (PROMs) were developed over 30 years ago in the form of short self-complete questionnaires to find out more about aspects of health of most concern to people. PROMs are increasingly used in clinical trials and from 2009 in the NHS to assess health outcomes of some elective surgical procedures. Their role as a health outcome measure for long-term conditions is likely to be more complex and needs to be assessed. The primary aim of this pilot is to assess the feasibility and acceptability of collecting PROMs data for six long-term conditions through primary care. The pilot aims to assess response rates to PROMs and the completeness and interpretability of PROMs between the different conditions, according to different methods of data collection. The six long-term conditions are asthma, COPD, diabetes, epilepsy, heart failure and stroke.

Methods

The main element of this pilot is a survey with individuals with one of the six long-term conditions, and an additional element is short qualitative interviews. For the survey, volunteering primary care practices will mail questionnaires to 2250 individuals with one of the conditions. Individuals will be identified from the practices’ Quality and Outcome Framework (QOF) database. Individuals who would like to participate are asked to return their completed questionnaire to the research team. The questionnaire is comprised of one generic and one disease-specific PROM, and a few additional items on demographics. Half of the individuals who are contacted to participate will be asked to complete the questionnaire once and the other half will be asked to complete the questionnaire a second time one year after completing the initial questionnaire.

A sub-sample will be invited to participate in a short interview about the idea of completing a PROMs questionnaire. A total of 55 interviews with patients will be conducted to identify barriers to completing PROMs. Additionally, 30 professional stakeholders (such as GPs, senior PCT and SHA staff) will be interviewed about their views on the value of using PROMs to measure outcomes in primary care. Information on the resources necessary for collecting PROMs data will include costs associated with mailing the survey and NHS primary care staff time. Finally, the project will attempt to work with some practices to find ways of improving response rates, for example, from those with poorer health status.

Outcomes

The results of this pilot, together with some estimation of costs, will inform Department of Health decisions about whether PROMs are an acceptable way of involving the public and measuring health outcomes of the NHS on a large, national scale in individuals with one of these conditions. Finding from this pilot will enable the Department of Health to decide whether PROMs can be more generally rolled out to engage the public in the assessment of quality of health care services for long-term conditions.