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Developing a myeloma specific quality of life questionnaire (MyPOS)

This project was conducted between 2010-2013.

Aim of project

This project aimed to develop and test a myeloma specific questionnaire to assess quality of life.

Project summary

Assessment of quality of life is important to ensure that the real benefit of treatment is captured in ways that are meaningful to patients. A questionnaire to provide specific information on quality of life for people with multiple myeloma can also help to make health care more patient centred and adapted to the needs of the individual.

20 people with myeloma were asked to describe what brings quality to their lives and how having myeloma has affected their quality of life.  They indicated that emotional wellbeing, being active, and being able to do what they wanted to do were most important to their quality of life. They also said that symptoms could affect quality of life by hindering them from doing what they want to do or what they enjoy.

From the literature, the investigators identified existing questionnaires that measure quality of life which they showed to another group of people affected by myeloma to find out about the type of questions and layouts that they preferred. A group of doctors and nurses was interviewed to find out in what way questionnaires that assess quality of life can be included in their day-to-day practice.

On the basis of these personal views, a short myeloma specific questionnaire was developed – the Myeloma-Specific Quality of Life Questionnaire (MyPOS). Further interviews were conducted to check whether the questions were clear and easy to understand. Then in a large survey, 380 patients from 14 hospital trusts in England filled in the MyPOS. The results showed that the questionnaire provides important information to doctors and nurses helping to care for people affected by myeloma and takes only a short time (7 minutes on average) to complete.

Who was involved with the project

The principal investigator was Professor Higginson, Head of the Department of Palliative Care, Policy and Rehabilitation at King’s College London.

How this project will help Myeloma patients

The questionnaire can help doctors, nurses, and other professionals to understand the problems and concerns of those affected by myeloma, to screen for these problems, and to monitor and address these problems.

Acknowledgements and funding

This project was funded by a Myeloma UK Health Services Research grant.

Outputs

This research has been published in the European Journal of Haematology which you can read here and the BMC Cancer journal which you can read here.