Primary ciliary dyskinesia Respiratory
Conditions
Interventions
The study involves a behavioural change intervention via a mobile health app and wrist-worn wearables to support engagement with airway clearance techniques (ACT).
Participants were randomised via an
Sponsors
Aparito Limited
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: 1. Adolescents (from 14 upwards) and adults diagnosed with PCD (written proof such as a letter of diagnosis from their reference specialist centre will be required, and/or genetic information, if known) and performing regular airway clearance techniques (ACTs) 2. Able and willing to provide consent or, if appropriate, participants having an acceptable individual capable of providing consent on their behalf, e.g., parent or guardian of a child under 18 years of age 3. Able to speak and understand English 4. Able and willing to engage with the technology 5. Access to an internet-connected smartphone with iOS or Android system
Exclusion criteria
Exclusion criteria: 1. Severe/acute disease, including: 1.1. Severe haemoptysis 6 months prior study start 1.2. Congenital heart defects, other than dextrocardia 1.3. Cardiac disease 1.4. Ongoing exacerbation. Once their exacerbation is resolved, they could be considered eligible for the study.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Change in engagement with prescribed airway clearance techniques (ACTs) measured using data collected in a daily self-reported ACT diary to the end of the study period (week 12) | — |
Secondary
| Measure | Time frame |
|---|---|
| Health-related quality of life (HRQoL) of people with PCD measured using the PCD-specific QoL instrument: QOL-PCD adult and adolescent (13-17) versions at baseline, weeks 6, and 12. Additionally, weeks 16 and 24 for those participating in the extension. | — |
Countries
England, United Kingdom, Wales
Contacts
Public ContactNavdeep Sahota
Outcome results
None listed