IMPROVING SELF-MANAGEMENT IN ADOLESCENTS AND ADULTS WITH CYSTIC FIBROSIS.
The use of mentoring to improve self-efficacy and management in adolescents and adults with Cystic Fibrosis
Australian Cystic Fibrosis Research Trust
60 participants
Apr 1, 2007
Interventional
Conditions
Summary
Life expectancy has improved dramatically in CF over the past three decades, mainly due to advances in paediatric care. The number of adults with CF may soon exceed that of the paediatric population but their needs are different and earlier gains may be lost because of reduced adherence to treatment regimes. The primary purpose of this Project is to improve self-efficacy of adolescents and adults with CF through a system of mentorship assisted by innovative Information Technology tools that allow patients to follow their own progress and get feedback on how their own management decisions affect outcomes, such as avoidance of an exacerbation. The mentorship system facilitates self-management and empowers the individual with CF. This sort of intervention may prove particularly effective during the transition period from childhood to adulthood.
Eligibility
Inclusion Criteria1
- Confirmed diagnosis of Cystic Fibrosis (CF). Clinical stability for two weeks as assessed by physician.
Exclusion Criteria1
- Severe lung disease or associated co-morbidities such as cirrhosis and bleeding varices.Inability to comply with instructionsRecruitment should not occur during an acute exacerbation.
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Interventions
Intervention Group 1. Programme of mentoring alone. Weekly contact initially and then determined by participants preference. Goal-setting, motivational interviewing, role modelling are the tools to improve self-efficacy. Intervention Group 2. Programme of mentoring as Intervention arm 1, but with an IT tool to allow self-monitoring. The IT tool will either be a modified mobile phone or a desk top computer. Participants record their breathlessness, cough, sputum volume, general well-being on the phone and relate these symptoms to when they are well. A 0-10 visual analogue scale is used. They are also texted a rolling series of questions once a week to assess adherence with medication and airway clearance techniques. The intervention arms go for six months and there is a six month washout period and self-efficacy is then re-assessed by questionnaire.
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ACTRN12607000234415