London School of Economics Survey about how quality of life is measured and reported in Health Technology Assessments (HTA)
Another survey for patients and carers to take part.
HTA organisations, such as for example NICE (National Institute for Clinical Health and Excellence) mostly use a questionnaire called the EQ-5D to measure the impact of an illness. From our experience with MDS patients, we have found this EQ-5D questionnaire inadequate to reflect the various issues faced by our group of patients. This survey is an opportunity to test and evaluate this widely used questionnaire.
We therefore welcome this survey and project – and encourage you to take part – both patients and caregivers/carers.
Here is the official invitation, background and links to the survey:
The London School of Economics (LSE) is leading an EU-funded research project, Advance-HTA, looking at aspects of health technology assessment (a method used to determine where and how new treatments should be introduced into a national healthcare system). The goal is to work with a range of stakeholders to explore how the methods used in HTA can be improved to better meet the needs of both patients and modern healthcare systems. There are 13 institutions involved in the research from a number of EU countries and North America.
One area of particular interest is the way in which patients’ experience in quality of life is measured. Currently, a tool called EQ-5D-5L is used but there is considerable discussion about how well this reflects the aspects of health-related quality of life that matter to people living with an illness.
We are asking patients with a range of illnesses, from a number of countries, to complete a short questionnaire aimed at finding out ‘Does EQ-5D-5L accurately and reliably reflect the aspects of their health that matter most to patients?’. This is important because it will help ensure that the things that matter to patients are at the heart of future decisions about access to medicines.
The questionnaire will take approximately 5minutes to complete and can be found at the following link:
Another version of the questionnaire has been developed to capture the responses of the caregivers who are providing support and care for patients. If you know any family members and friends who are caring for a patient, please provide them with the following link to complete the questionnaire: https://lse.qualtrics.com/SE/?SID=SV_9sM3VwpFLDT1xVH
Each questionnaire must be completed in one sitting and all responses are anonymous.
If you are involved in a patient organisation, please consider posting the links to the surveys on your organisation’s website. If you know other patient organisations in Europe, please do forward them the links. The more completed questionnaires we receive, the more reliable the results will be.
Thank you very much for taking the time to complete the questionnaire and support this important piece of research. More information about the project and the institutions involved can be found at http://www.advance-hta.eu.