The development of a PROM for long term conditions
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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.