Cookies on this website
We use cookies to ensure that we give you the best experience on our website. If you click 'Continue' we'll assume that you are happy to receive all cookies and you won't see this message again. Click 'Find out more' for information on how to change your cookie settings.

Working with patients to develop and test a questionnaire for 'Patient Reported outcome Measures' (PROMs), measuring a broader range of important aspects of living with long-term conditions, to help improve the care of people with long-term conditions.


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.


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.


Related research themes