Exploring Knowledge in CF Patients with Adulthood-diagnoses
Research type
Research Study
Full title
Exploring Knowledge in CF Patients with Adulthood-diagnoses in order to identify appropriate support and information provision
IRAS ID
161767
Contact name
Angus Clarke
Contact email
Sponsor organisation
Cardiff University
Duration of Study in the UK
0 years, 5 months, 23 days
Research summary
Cystic fibrosis (CF) is a progressive, autosomal recessive genetic condition and one of the most common life-limiting diseases in Caucasian populations. Cystic fibrosis is a simple Mendelian condition; however, it has a broad spectrum of disease severity. When CF was first described by D. Andersen in 1963, the life expectancy of patients were less than 2 years. Currently there is no cure for CF patients but once it is diagnosed they can start a lifelong treatment plan. With the advancement in the treatment and management of CF, the average lifespan grew way beyond the teenage years. There has been an increasing focus within research on improving the quality of life for the adult CF patient population. Furthermore, there is an increasing interest of the impact of CF in patients diagnosed as adults (>16 years of age), compared to those diagnosed during childhood. Most these diagnoses was suspected from fertility clinics or general adult respiratory clinics.
The patients who received adulthood-diagnoses are relatively healthier than the patient with an early diagnosis and their needs are often unrecognised and unmet. Whilst previous studies contributed to recognising knowledge gaps in CF patients and their families, the majority of research focused on CF patients with childhood diagnoses. The actual knowledge gap between adulthood-diagnoses patients and patients with childhood diagnoses has also not been explored. Furthermore, there has been no study exploring information-seeking coping styles in patients and explore perceptions of ‘knowledge gaps’ in adulthood-diagnosed patients among the health professionals and compare it to ‘actual’ knowledge gaps.
Therefore, this research at the All Wales Adult Cystic Fibrosis Centre will be important in assessing the level of patients’ knowledge about the condition and understanding their concerns, expectations and educational needs. This could potentially guide the development of an appropriate educational programme in Wales for CF patients with adulthood-diagnoses.REC name
East of England - Cambridge South Research Ethics Committee
REC reference
15/EE/0095
Date of REC Opinion
18 Apr 2015
REC opinion
Further Information Favourable Opinion