Experiences of new drug therapies for adults with Cystic Fibrosis
Research type
Research Study
Full title
Experiences of drug therapy treatment advancements ('Kaftrio') for adults with Cystic Fibrosis: an interpretative phenomenological analysis
IRAS ID
299604
Contact name
Naomi White
Contact email
Sponsor organisation
NHS Greater Glasgow & Clyde
Duration of Study in the UK
0 years, 8 months, 31 days
Research summary
Summary of Research
Cystic Fibrosis (CF) is a lifelong disease which affects people’s wellbeing in various ways. A newly developed drug treatment (Kaftrio) has been found to increase life expectancy and improve quality of life. This treatment has recently been made available to about 90% of people with CF in Scotland. These people may expect to live longer with improved physical health. There is a need to explore experiences of individuals commencing treatment in this new era of CF care to further an understanding of the wider impact of treatment in relation to how individuals experience adjustment, benefits, and potentially new challenges alike.
The researcher will ask participants questions about their experiences of living with CF and new treatment.
Between 4-10 people who have a diagnosis of CF and are receiving Kaftrio will be interviewed. Participants will be included if they have a diagnosis of CF, are over 18 and have received full dosage of Kaftrio for at least 12 months.
Participants will be recruited from an NHS CF clinical service. Clinicians will identify service users who they feel can provide a detailed account of their experiences.
Staff working in the CF service will ask participants whether they wish to be contacted by the researcher. The researcher will explain details of the study and answer any questions that participants may have. Participants can decide if they wish to be involved in the study by providing informed consent.
Information will be guided by interview questions and by participants providing personal accounts of their experience.
These interviews will be held online, recorded, typed up, and analysed using Interpretative Phenomenological Analysis (IPA), a research method focusing on how individual make sense of their experiences.
Exploring the experiences of people with CF receiving new treatment will hope to further understand the needs of this population and
inform CF care.Summary of Results
: “A Whole New Ball Game”: Exploring the Experiences of Drug Therapy Advancements (‘Kaftrio’) for Adults with Cystic Fibrosis Background Cystic Fibrosis (CF) is a lifelong disease which affects people’s wellbeing in many ways. Living with CF can involve having to overcome physical, psychological and social challenges. A new drug treat-ment (Kaftrio) has been developed, that has been evidenced to help people live longer. Kaftrio has been made available to about 90% of Adults with CF (AwCF) in Scotland. AwCF may expect to live longer with better physical health as a result of Kaftrio. Although, it remains unclear how AwCF are experiencing the new treatment and what impact Kaftrio is having on an individuals’ psycholog-ical wellbeing. There is a need to understand the wider impact of this new treatment.
Aim
The researcher asked participants questions about their experiences of living with CF and Kaftrio. With a better understanding of AwCF’s experiences of starting Kaftrio, services may be better able to help AwCF manage any challenges associated with new treatment.
Methods
Five Adults (aged 22-49) who had a diagnosis of CF and receiving Kaftrio treatment were recruited from the West of Scotland Adult Cystic Fibrosis (WoSACF) service. Participants were aged 18+, had a diagnosis of CF, had received Kaftrio for over 12 months and were receiving the full prescribed amount of Kaftrio at the time of interviews. CF clinicians helped to identify participants who were suitable to contact. Participants gave consent for the researcher to make contact with them and to discuss the purpose of the study. All five adults agreed to participate by providing an electronic sig-nature and interviews were carried out. Interviews were held online, recorded, typed up, and ana-lysed using a research method known as Interpretative Phenomenological Analysis (IPA), which focuses on how individuals make sense of their experiences.
Results
Participants’ experiences were represented in three themes; 1) Shifting Attitudes towards Kaftrio over time - “The Game-Changer” but “Not a Cure”; 2) Adapting and Learning to live in a new Body - “Re-learning Myself Again”; 3) Ambivalence towards an Unimaginable Future - “There is Uncertainty and there is Hope”.
Conclusion
This study provides valuable information into how AwCF have experienced Kaftrio treatment, with participants describing their experiences as being given a new lease of life and highlighting associated opportunities as well as challenges. Participants described that living with Kaftrio has involved making significant adjustments to manage the changes associated with Kaftrio. Participants felt that there was a need for psychological support to help them make sense of their emotional experiences of living with CF on Kaftrio.
Dissemination
This research was submitted to meet requirements for the degree of Doctor of Clinical Psychology (DClinPsy) at the University of Glasgow. It is anticipated that further dissemination of findings will be sought through submission for publication in a peer-reviewed scientific journal. Additionally, findings will be disseminated to clinicians involved in CF care at a local and national level. All participants were given the option of receiving a summary of results.REC name
West of Scotland REC 1
REC reference
21/WS/0162
Date of REC Opinion
15 Dec 2021
REC opinion
Favourable Opinion