Outcomes in CF Patients Accessing Their Registry Health Records
- Conditions
- Cystic Fibrosis
- Interventions
- Other: CFViewOther: CF educational videos
- Registration Number
- NCT03434886
- Lead Sponsor
- Cystic Fibrosis Registry of Ireland
- Brief Summary
A multifactorial, parallel group, randomised control study in cystic fibrosis (CF) patients aged 13-30 years over an 18 month period. Patients will be offered read-only access to their CF registry electronic health record (CF View), or educational videos on CF (videos), or videos and CF View, or usual standard of care. The study aims are to examine the effect of patient access to C View on a range of clinical outcomes, health service usage, health literacy and patient reported outcomes.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 282
- diagnosed with CF
- registered with their national CF patient registry
- FEV1pp ≥40
- aged 13-30 years
- organ transplantation
- FEV1pp <40
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- PARALLEL
- Arm && Interventions
Group Intervention Description CF View CFView - CF View and videos CFView - CF Educational videos CF educational videos - CF View and videos CF educational videos -
- Primary Outcome Measures
Name Time Method FEV1pp 18 months forced expiratory volume in 1 second percentage predicted
- Secondary Outcome Measures
Name Time Method Health literacy 12 months Health Literacy Survey - HLS- EU - Q16 score
Health-related quality of life 12 months CFQr score - (Cystic Fibrosis questionnaire revised)
BMI 18 months kg/m\^2
Pulmonary exacerbations 18 months pulmonary exacerbation requiring IV antibiotics
Hospitalisations 18 months hospitalisation for treatment of pulmonary exacerbation