None listed
Conditions
Brief summary
Cystic fibrosis (CF) is a progressive, multi-system genetic disorder that increases in complexity and severity with age. A substantial increase in survival has occurred over the past 50 years and where previously affected individuals died predominantly in childhood, this is now a rare event. CF population projections predict that the majority of children now living with CF will survive into their fifth decade. The challenge facing adult healthcare providers is how to consolidate the gains made during paediatric care and to assist adult CF patients to manage a condition made increasingly complex by the onset of CF-related diabetes, progressive lung and liver disease, and osteoporosis in the context of trying to lead an independent life. Equipping individuals affected by chronic disease with skills to self-manage has been shown to improve both health-related outcomes and quality of life, but there has been little work in CF in this area. The aim of this pilot study is to assess the feasibility of a mentor-based behavioural modification intervention to enhance self-efficacy to self-manage, with some individuals utilizing an information and communication technology (IT) tool - a modified mobile phone - that enabled self-recording of symptoms with immediate visual feedback on reported symptoms.
Interventions
Behavioural interventions including goal setting, action planning and self-monitoring using an IT tool and facilitated by telephone mentoring. There are three treatment arms;
1. Mentor plus IT tool (modified mobile phone)
2. Mentor only
3. Control = usual CF care.
The active intervention lasted for six months followed by a six month washout. The IT tool consists of a mobile phone that has been modified to allow self-recording of symptoms. Entries were then sent to a central data server, convert
Behavioural interventions including goal setting, action planning and self-monitoring using an IT tool and facilitated by telephone mentoring. There are three treatment arms; 1. Mentor plus IT tool (modified mobile phone) 2. Mentor only 3. Control = usual CF care. The active intervention lasted for six months followed by a six month washout. The IT tool consists of a mobile phone that has been modified to allow self-recording of symptoms. Entries were then sent to a central data server, converted into graphical format and send back to the participant immediately. This allowed them to viw their progress compared to baseline when well, which had been recorded at the study commencement. The participants were asked to use the moble phone on a daily basis. The frequency of participant-mentor telephone interaction occurred initially on a weekly basis, initiated by the mentor with the intention of becoming increasingly negotiated by the participant as their self-efficacy developed.
Sponsors
Department of Health and Aging.
Study design
Allocation
Randomised controlled trial
Intervention model
Factorial
Primary purpose
Educational / counselling / training
Masking
Blinded (masking used)
Eligibility
Sex/Gender
All
Age
16 Years to No maximum
Healthy volunteers
No
Inclusion criteria
Diagnosis of Cystic Fibrosis and no exacerbation for one month.
Exclusion criteria
An exacerbation within the past month and severe disease.
Outcome results
None listed