Quality of Life in Cystic Fibrosis Intravenous Antibiotic Patients
Research type
Research Study
Full title
Measuring Quality of Life in patients with Cystic Fibrosis undergoing routine intravenous antibiotic treatment
IRAS ID
199911
Contact name
anne Gowing
Contact email
Sponsor organisation
Leeds Teaching Hospitals NHS Trust
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
People with Cystic Fibrosis (CF) frequently receive Intravenous (IV) antibiotic treatment to limit the damage caused by bacterial infections. Patients may have either a course of treatment as an inpatient or, with the appropriate training, in their own home.
The proposed research will examine Quality of Life (QoL) before and after receiving IV antibiotic treatment to determine whether Quality of Life improves after treatment. The study will use Patient Reported Outcome Measures (PROMs), which are becoming more common in assessing the impact of various treatments. Specifically, these would be two short questionnaires: the Cystic Fibrosis Questionnaire Revised (CFQ-R) and the Euro Quality of Life Questionnaire (EQ-5D).
This study will be led by the Regional Paediatric CF Unit (LRPCFU), within both the Centre in Leeds and its associated Network Clinics (Bradford, York, and Calderdale). Paediatric CF patients and their parents attending any of these clinics will be asked to complete the two QoL questionnaires before and after receiving IV antibiotic treatment. Health data that is routinely collected at outpatient appointments - including weight, lung function, and illness symptoms - will also be compared to the QoL data to see whether there are any associations.
We would also ask patients to complete the Beliefs about Treatment Questionnaire. This examines a patient’s/parent’s belief about their/their child’s medicines, and specifically focuses on beliefs about necessity (are the medicines needed?) and beliefs about concerns (do the medicines cause worry?). This would allow us to determine potential associations between a patient’s reported QoL post-treatment and their/their parent’s beliefs about the necessity of, versus their concerns about, IV antibiotics.
Finally, we would compare the questionnaire responses of IV inpatients versus home-IV patients. This would allow us to explore potentially significant differences in reported Quality of Life between those who receive IV treatment in hospital and those who receive treatment whilst at home.
Whilst the rationale for the research is to inform practice within Leeds Regional Paediatric CF Unit, it may produce conclusions that are relevant to the CF population as a whole. Sharing of this research more widely (e.g. conference presentations, journal publications) will therefore be considered.
REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
17/LO/0146
Date of REC Opinion
23 Feb 2017
REC opinion
Further Information Favourable Opinion