None listed
Conditions
Brief summary
For medical technology and advances to be utilised in clinical practice they need to be not only effective and safe but also acceptable to consumers. To achieve this, it is important to invite the users of health technologies, including patients, carers and clinicians to provide feedback on new and emerging technologies. To determine the opinions, motivations, barriers and potential uptake of new technologies for cystic fibrosis care we are inviting paediatric patients, their parents/carers and associated health care workers to provide their opinion on two emerging technologies: XV LVAS imaging and airway gene therapy. It is important to determine the opinions of paediatric patients as well as their care team as in cystic fibrosis lung health in the early years impacts lifelong health and wellbeing for these patients. Mitigation of barriers to existing and emerging health interventions in this group will have a lifelong impact on wellbeing, life expectancy and healthcare utilization. Subjects will be invited to participate in this study based on their experience in the XV Feasibility Study (Protocol No: WCH_XV_001, ACTRN12623000109606). During this study cystic fibrosis affected children were offered an XV LVAS scan which is compared to results of routine Lung Function testing to determine whether this technology is safe, effective and an appropriate addition to paediatric cystic fibrosis care. Those children and their care teams will be interviewed to determine their attitudes towards the new technology and also that of airway gene therapy which is under development. Subjects will be invited to participate in a one-hour semi-structured interview to discuss their lived or clinical experience of cystic fibrosis, XV LVAS scans and understanding of gene therapy. This will be complemented by limited demographic data collection and complimentary data extracted from the XV Feasibility Study (WCH_XV_001).
Interventions
A single, Semi-structured Interview with an individual participant (plus carer) conducted online. This study is examining the experience of participants in Study ID ACTRN12623000109606, who have cystic fibrosis and elected to undergo the XV imaging scan. These participants, their parents/carers and associated medical personnel are being invited to interview about their experience with the new imaging techniques and also their views on airway gene therapy.
Three groups of participants are being i
A single, Semi-structured Interview with an individual participant (plus carer) conducted online. This study is examining the experience of participants in Study ID ACTRN12623000109606, who have cystic fibrosis and elected to undergo the XV imaging scan. These participants, their parents/carers and associated medical personnel are being invited to interview about their experience with the new imaging techniques and also their views on airway gene therapy. Three groups of participants are being invited to participate in this study. These include a selection of patients from the parent study ACTRN12623000109606, which involved children trialling a new imaging technique (XV LVAS scan). Children with cystic fibrosis who completed this scan will make up one group, their parents/guardians will make up a second group and finally health care workers including doctors, nurses, scientists who are involved in cystic fibrosis care will be asked for their opinions on the technologies. Namely XV LVAS scans and airway gene therapies. A sub-set of participants from the parent study will be invited to consent to this interview study. The interview will occur after participation in the parent study, allowing participants to reflect on their experience. The interview will take approximately 1 hour for each participant ( 1 hour for child, 1 hour for a parent/carer, 1 hour for a health care worker).
Sponsors
Women's and Children's Hospital
Eligibility
Sex/Gender
All
Age
6 Years to No maximum
Healthy volunteers
No
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
Outcome results
None listed