iPREFER
Research type
Research Study
Full title
Patient experiences and preference of treatment for Multiple Myeloma
IRAS ID
337372
Contact name
Sally Taylor
Contact email
Sponsor organisation
The Christie NHS Foundation Trust
Duration of Study in the UK
0 years, 6 months, 0 days
Research summary
Summary of Research
People can receive many lines of treatment for multiple myeloma. We would like to understand more about the experiences of people being treated for multiple myeloma including what matters most to them when considering treatment options, how their experiences have differed with different treatments and if they have any treatment preferences. Patients at The Christie who have received five or more lines of treatment for Multiple Myeloma will be eligible to take part in this study. They will be asked to participate in an interview which should take approximately 30 minutes to an hour. During the interview they will be asked questions regarding their experiences and preference for treatment. Interviews will be conducted either in person or over the phone depending on patient preference. The interviews will be recorded by the research team using a Dictaphone and transcribed by an external transcription service called 1st Class Secretarial. The transcripts of all participant interviews will be reviewed by members of the research team and experiences will be identified and described.
Summary of Results
The Christie Patient Centred Research Team carried out a study to explore the experiences and preferences of patients receiving treatment for multiple myeloma (MM). We wanted to understand what matters most to patients, how experiences varied across different treatment lines, and their treatment preferences. The results will be published in an academic journal and a summary of the results can be found below.
Nine people took part in an interview. Four main areas were discussed:Living with multiple myeloma and quality of life Participants spoke about the everyday and long-lasting effects of MM and its associated treatment on the physical, emotional, and professional aspects of life, including relationships, views on mortality, and independence.
Decision making and information
Participants valued family members’ and healthcare professionals’ support when making treatment decisions. Treatment attitudes and motivations were often based on remission and extension of life. Regardless of treatment type, participants appreciated receiving information and were reassured by it.Treatment experience
Participants relied on self-management techniques to help them manage treatment schedules, side effects and the emotional impact of treatment. The logistical practicalities of treatment were highlighted including travel and personal commitments e.g. childcare. Participants often felt that treatment exceeded their expectations if it had achieved their goals of care.Treatment preference
Preference for treatment was influenced by social aspects, decisions surrounding treatment schedules, convenience, and side effects. Even those without a strong preference evaluated treatment based on the impact of logistics on everyday life. Participants shared how their years of treatment experience prepared them for these challenges and helped them to accept the trade-off between symptom burden and treatment outcomes.REC name
North of Scotland Research Ethics Committee 1
REC reference
24/NS/0028
Date of REC Opinion
11 Mar 2024
REC opinion
Favourable Opinion