Cystic fibrosis in the modulator era
Research type
Research Study
Full title
Illness perceptions, treatment beliefs and identity in cystic fibrosis in the modulator era: A mixed methods study
IRAS ID
308876
Contact name
Susan Carroll
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
4 years, 4 months, 28 days
Research summary
Cystic fibrosis (CF) is a genetic condition that affects the lungs, digestive system and other organs in the body. CF brings many challenges for patients, including frequent chest infections, difficult physical symptoms, time-consuming treatments and lots of hospital appointments. CF also impacts life expectancy; with about 50% of people with CF expected to live past their 50th birthday.
In recent years, new treatments for CF (called modulators) have meant that life expectancy and quality of life have continued to improve. However, modulators are only available to about 90% of people with CF; about 10% cannot access modulators because of their specific type of CF.
It is important to understand how people who can and cannot access modulators have experienced and perceived CF since modulators were introduced. It is also important to understand healthcare professionals’ views of the changing care needs of people with CF. Therefore, this study has two aims: (1) to understand patient and healthcare professionals’ views of CF and healthcare needs, beliefs about treatment, impact on identity and (2) to explore relationships between patients’ views of CF, identity, beliefs about treatment and their physical and psychological well-being in CF.
To achieve aim one, adults with CF and healthcare professionals will be asked to take part in a 60-minute interview (telephone, video call or in-person) about their views about CF and treatment, identity, and current and future healthcare needs.
To achieve aim two, adults with CF will be asked to complete a set of online questionnaires every six months for three years. This is so the research team can understand how people’s views about CF and treatments change over time. The questionnaires will ask about people’s thoughts about CF, beliefs about CF treatments, identity, whether people take medications as advised by healthcare professionals, and questions about psychological well-being.
REC name
London - Hampstead Research Ethics Committee
REC reference
22/PR/0716
Date of REC Opinion
4 Jul 2022
REC opinion
Further Information Favourable Opinion