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UK myeloma patients invited to test new quality of life questionnaire

Patient advocacy news, Research news // 30th October 2017

Myeloma patients in the UK are being invited to take part in a study that is testing a new questionnaire which aims to support patients and their clinicians in discussing, addressing and better recording quality of life issues that matter patients.

Called the HM-PRO, this is the first tool which has been developed specifically for use in the clinic, and Myeloma UK is supporting its testing because of the potential it has to improve outcomes for patients.

The HM-PRO is being funded by the European Haematology Association Scientific Working Group, a group which has been set up to advance science and share knowledge in clinical research in haematology.

It is important that the questionnaire is now tested for how well it captures the issues that myeloma patients consider important. To do this, Myeloma UK is helping the researchers find patients who are willing to test the HM-PRO. All myeloma patients in the UK are eligible to take part.

What is involved?

Questionnaires such as this go through a rigorous process of development and testing to make sure they record information that is completely reliable and relevant to the condition. This involves a long process of study and questionnaire refinement.

If you consent to take part in the study you will be sent four questionnaires, in the post, to complete. One of these will be the HM-PRO. The other three questionnaires will be different quality of life questionnaires that are often used in myeloma. By asking patients to complete all four, the researchers can test how effective the HM-PRO is in capturing what matters to myeloma patients. This is also known as testing the ‘psychometric properties’ of the new questionnaire.

You would complete the questionnaires at a time convenient to you. It may take up to an hour to complete.

As part of this evaluation, you would be asked to repeat this exercise at a later date; that is at 7 days and 12 weeks after you complete them the first time. If you choose to take part in the repeat testing, the data you provide will be compared to the earlier information you gave, helping to confirm the reliability and relevance of the HM-PRO.

For more information

For further information please refer to the patient information sheet. If you are interested in taking part in the study please leave your contact details in this form.

The researchers will then send you the questionnaires together with a pre-paid return envelope. If you require further information about the study and your participation, please contact: Pushpendra Goswami (e-mail: p.goswami@herts.ac.uk; mobile: 01707286548) or the Chief Investigator, Professor Salek (e-mail: mssalek@gmail.com; mobile: 07765374022).