The development of a PROM for long term conditions

Aims

The aim of this project is to develop a short questionnaire for patients with long-term conditions to report their experiences of their conditions and to assess their quality of life – a Patient Reported Outcome Measure (PROM) – and to provide evidence for its reliability and validity.

Why this is important?

Living with long-term conditions – such as chronic back pain, cancer, diabetes, depression, irritable bowel syndrome (IBS), or multiple sclerosis (MS) – can seriously affect people’s enjoyment and quality of life.

According to NHS England, 15.4 million people in England (over a quarter of the population) have a long-term condition, and an increasing number of these have multiple conditions (multimorbidity).

Long-term conditions also use a significant proportion of health care services (50% of all GP appointments and 70% of days spent in hospital beds), taking up around 70% of hospital and primary care budgets in England.

As such, health and social care services should be supporting people with long-term conditions to be as healthy and independent as possible.

The NHS Outcomes Framework lays out a range of indicators across five key 'domains' – one of which is ‘enhancing quality of life for people with long-term conditions’ – against which the performance of the NHS is assessed.

A questionnaire, called EQ 5D, is often used to obtain and understand how people living with long-term conditions experience their health.  However, the EQ 5D has only five questions and does not address many important aspects of living with long-term conditions, such as multimorbidity.

This project aims to develop and test a new questionnaire for 'Patient Reported outcome Measures' (PROMs), complimentary to the EQ 5D, to measure a broader range of important aspects of living with long-term conditions, including multimorbidity.

Methods

A series of in-depth interviews with 42 people with a range of different long-term conditions, from a variety of GP surgeries, were carried out. Interviews were transcribed and analysed to identify themes reflecting people’s experiences of living with long-term conditions.  From these themes, 23 candidate questionnaire items were developed.

The questionnaire was further refined using patient feedback using 'cognitive interviewing' (interviews structured around memory-enhancing strategies), resulting in a 20-item questionnaire. 

This draft questionnaire was sent to a stakeholder consultation group and to a 'Patient and Public Involvement' advisory group to gauge the potential relevance of the emerging questionnaire. 

To test how reliable, valid and acceptable the questionnaire, called the 'Long-Term Conditions Questionnaire' (LTCQ),  is to use a number of general practices will be approached to agree to send the LTCQ – and copy of the EQ5D – to patients with at least one long-term condition.

A sample of 1,000 returned questionnaires is sought from respondents, half of which will be invited to complete the questionnaire again on a second occasion to check the reliability of the LTCQ.

At the baseline survey, respondents will also be invited to complete the EQ5D5L, the Patient Activation Measure (PAM) and a multimorbidity scale.   

How could this benefit patients?

More accurate indicators of how NHS services are performing, that truly reflect patients own experiences with long-term conditions, should lead to patient-focused improvements in both quality of care and patient outcomes.