First phase complete in PREFER’s NMD case study

2019-04-15

PREFER partners working on the neuromuscular disorders (NMD) case study, led by Newcastle University and MDUK, have now completed their qualitative data collection. Over the last couple of months, the team have carried out 14 interviews and 5 focus groups with NMD patients and caregivers across the UK.

Cecilia Jimenez Moreno, Newcastle University

Study participants described how their neuromuscular disease affects their daily lives or, in the case of caregivers, how it affects the daily lives of patients they care for. Participants also discussed what they would expect from a hypothetical NMD treatment.

“Participants discussed the impact of the disease on their everyday life. They talked about their most burdensome symptoms, and what they would expect from a treatment, if treatment was suddenly an option. Which risks would put them off a treatment that offers to cure their most burdensome symptoms?”, says Cecilia Jimenez Moreno, PREFER clinical case study lead.

When discussing risk tolerance with patients and caregivers, examples from the PREFER methodological preference tools were discussed in relation to a flu vaccination scenario. This provided a first insight into how patients and caregivers understand tools like Q-methodology and Discrete Choice Experiments and others ways of measuring preferences.

A total of 49 patients and caregivers participated in the focus groups and interviews. The team is now in the process of data transcription and analysis. After this, they will be ready to proceed to the next phase of the study where the results from the qualitative work will form the basis for a patient preference questionnaire.

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By Anna Holm