Exploring attitudes towards emerging technologies in a paediatric cystic fibrosis clinic: airway gene therapy and XV LVAS imaging

Not Applicable

Recruiting

• Conditions: cystic fibrosis; Respiratory - Other respiratory disorders / diseases; Human Genetics and Inherited Disorders - Cystic fibrosis

• Registration Number: ACTRN12623000930684
• Lead Sponsor: Women's and Children's Hospital

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2023-08-29
• Last Update Posted: 9 September 2024

Recruitment & Eligibility

• Status: Recruiting
• Sex: All
• Target Recruitment: 30

Inclusion Criteria

Participants will be invited to take part in the study if they fall into one of three focus groups:
Group 1: Children who participated in XV Feasibility study (WCH_XV_001, ACTRN12623000109606) and additionally were:
•Diagnosed with cystic fibrosis
•Aged 6-18 years old at Consent
•Completed XV LVAS imaging
•Completed the Cystic Fibrosis Questionnaire – Revised (CFQ-R) for their age group (6 to 13 years old or 14 years old to adult)
Group 2: Parents of eligible children in Group 1 regardless of whether the child participates in this study.
Group 3: Health care workers (clinicians, nurses, scientists and support staff) involved in the care of child, adolescent and/or adult cystic fibrosis patients.

Exclusion Criteria

None

Study & Design

• Study Type: Observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Primary composite outcome: Opinions of families (child and parent/guardian who have experienced the use of the technology) expressed in the semi-structured interviews will be analysed for trends with regard to potential uptake, benefits and risks of XV LVAS scans and airway gene therapy.[ At time of interview]

Secondary Outcome Measures

Name	Time	Method
Secondary composite outcome: Health care worker's (doctors, nurses, scientists who care for cystic fibrosis children) opinions expressed in the semi-structured interviews will be analysed for trends with regard to potential uptake, benefits and risks of XV LVAS scans and airway gene therapy.[ At time of interview]