Which conditions are included?
The LTCs included are asthma, chronic obstructive pulmonary disease (COPD), diabetes, epilepsy, heart failure and stroke. These conditions cover approximately 6.8 million diagnosed patients nationally according to Quality and Outcome Framework (QOF) prevalence estimates.
What happens if an invited individual has more than one of the relevant LTCs?
The PROMs questionnaire will invite participants to record where they have LTCs other than the LTC to which the questionnaire relates. This information will be taken into account when the results are analysed.
What are the questionnaires?
Each questionnaire will comprise two PROMs (patient-reported outcome measures), one that assesses generic health status and one that assesses disease-specific health status. Some additional questions on demographics will also be included.
A report by the University of Oxford (2006) made initial recommendations on appropriate PROMs for use with the relevant LTCs. Further work has been completed by the University of Oxford to refine the recommendations and to test suggested measures with an expert group (including clinicians and representatives from patient organizations). The reports are available here. The intellectual property (IP) contained in many of the PROMs questionnaires are owned by other organizations and the Department of Health conducted an IP review to clarify the terms for usage of the PROMs questionnaires recommended by the University of Oxford.
The EUROQoL or EQ-5D is the generic PROM and is used for all of the six LTCs. The disease-specific PROMs are the mini Asthma Quality of life Questionnaire (miniAQLQ), the Clinical COPD questionnaire (CCQ), the Quality of Life in Epilepsy (QOLIE-31) questionnaire, the Diabetes Health Profile, the Minnesota Living with Heart Failure Questionnaire (MLHFQ) and the Stroke Impact Scale version 3 (SIS).
The questionnaires (pdf files) can be viewed below (if you don’t have a pdf reader you can download Adobe Acrobat this for free here: http://www.adobe.com/
Will individuals selected to participate have to do so?
No. Participation in the pilot by individuals with LTCs is entirely voluntary. One of the main objectives of the pilot is to establish the response rates under the proposed administration methodology. Knowing what percentage of invited individuals actually choose to complete the PROMs questionnaires will help the research team to understand the relative costs and benefits of collecting PROMs data on in this way.
What will happen with the results of the pilot?
The results of the pilot, together with some estimation of costs, will inform Department of Health decisions about whether PROMs are an effective way of involving the public and measuring outcomes of the NHS on a large, national scale in individuals with one of these conditions. If successful in terms of feasibility, acceptability and cost, this pilot will suggest that PROMs can be more generally rolled out to engage the public in the assessment of quality of health care services for long-term conditions.