Cystic Fibrosis Respiratory Cystic Fibrosis
Conditions
Interventions
CFHealthHub is an online portal which displays adherence data and provides behaviour change resources and tools for people with Cystic Fibrosis (PWCF), these tools used alongside trained CF health pro
Assessment, Diagnose, Treatment and Standardise, where tools such as assessment using the 5 P’s (Purpose, Patients, Professionals, Processes, Patterns) process mapping, time series measurements, Plan
Sponsors
Sheffield Teaching Hospitals NHS Foundation Trust
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: 1. Diagnosed with CF and with data within the CF registry 2. Aged 16 years and above 3. Taking inhaled mucolytics or antibiotics via a chipped nebuliser (e.g. eTrack or I-Neb) or able and willing to take via eTrack or I-Neb
Exclusion criteria
Exclusion criteria: Lacking in capacity to give informed consent
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Current primary outcome measure as of 11/02/2020: Objective nebuliser adherence measured using adherence information stored in the CFHealthHub system. Three-monthly and annual adherence for each individual will be calculated as unadjusted adherence, normative adherence (Hoo, 2016) and total nebuliser used per week. Previous primary outcome measure: Sophisticated normative adherence as defined by Hoo (2016) | — |
Secondary
| Measure | Time frame |
|---|---|
| Current secondary outcome measures as of 13/02/2020: 1. Lung function assessed by FEV1 captured on CFHealthHub at baseline and every clinical encounter 2. Process data (prescription checks, duration of inhalation) is measured using data recorded on CFHealthHub at baseline and every clinical encounter 3. The rate of consent as measured by the number of completed consent forms. Rate of follow up is measured by the number of completed follow-up questionnaires, data sharing is available by extracting the number of participants with data sharing switched on or off on the CFHealthHub system. Previous secondary outcome measures as of 11/02/2020: 1. Lung function assessed by FEV1 on spirometry 2. Process data (prescription checks, duration of inhalation) is measured using data recorded on CFHealthHub 3. The rate of consent as measured by the number of completed consent forms. Rate of follow up is measured by the number of completed follow-up questionnaires, data sharing is available by extracting the number of participants with data sharing switched on or off on the CFHealthHub system. Previous secondary outcome measures: 1. Unadjusted adherence is measured using adherence information stored in the CFHealthHub system 2. Simple normative adherence is measured using the CFHealthHub system 3. Process data (prescription checks, duration of inhalation) is measured using data recorded on CFHealthHub 4. The rate of consent as measured by the number of completed consent forms. Rate of follow up is measured by the number of completed follow-up questionnaires, data sharing is available by extracting the number of participants with data sharing switched on or off on the CFHealthHub system. | — |
Countries
England, United Kingdom, Wales
Contacts
Public ContactSophie;India Farrell;Davids
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Outcome results
None listed