Patient views on, & consultation content of, cystic fibrosis clinics
Research type
Research Study
Full title
Understanding the concerns of adults with cystic fibrosis: an exploration of patient perspectives on, and consultation content of, outpatient clinics
IRAS ID
209635
Contact name
Rachael Summers
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
1 years, 3 months, 18 days
Research summary
Cystic fibrosis (CF) is a genetic condition that affects many body systems including the lungs, gut, skin, liver and kidneys. Often diagnosed around birth, we know that CF affects people’s roles, relationships and well-being. People living with CF spend a lot of time having daily treatment and medicine to maintain their health as long as possible. Visits to specialist outpatient clinics are routine, often around every three months. In these clinics, people with CF see a range of health professionals, including, doctors, nurses, dieticians, physiotherapists and psychologists, to support them in managing their condition.
CF was once known as a childhood condition; for many years people with CF did not survive past adolescence. Because of this, most research has been done in children and adolescents. In more recent years, life expectancy has improved a lot; in 2016, average life expectancy is 41 years old. To date, little is known about the needs and concerns (i.e., the agendas) of adults with CF (AwCF). Although some may be similar to younger populations, others may be specific to adults. Only one study has looked at AwCF and this study hinted that unmet needs are a problem. Understanding the agendas of AwCF is important for helping adult CF services to meet the needs of their patients.
This study will take a first step to filling this gap. We will audio-record 25-45 adult CF outpatient consultations to find out what is talked about in clinics. After the consultations, we will survey AwCF to find out the number and types of concerns they wish to talk about and if they feel they were able to do this. Interviews with up to 15 AwCF will explore in more detail views on, and experiences of, voicing their agendas in CF outpatient clinics.REC name
Wales REC 7
REC reference
16/WA/0258
Date of REC Opinion
30 Aug 2016
REC opinion
Favourable Opinion