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RecruitingPhase 4ACTRN12607000234415

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

Sponsor

Australian Cystic Fibrosis Research Trust

Enrollment

60 participants

Start Date

Apr 1, 2007

Study Type

Interventional

Conditions

Cystic FibrosisAdolescence and the transition period

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

Sex: Both males and femalesMin Age: 12 YearssMax Age: 19 Yearss

Plain Language Summary

Simplified for easier understanding

This study is designed to help teenagers and young adults with cystic fibrosis (CF) take better care of themselves. CF is a lifelong condition that affects the lungs and digestive system, and sticking to treatment routines can be really hard, especially when transitioning from childhood to adulthood. The program uses mentors and online technology tools to help young people track their own progress, understand how their decisions affect their health, and feel more in control of their condition. You may be eligible if: - You are between 12 and 19 years old - You have a confirmed diagnosis of cystic fibrosis - You have been clinically stable (no major flare-ups) for at least two weeks You may NOT be eligible if: - You have severe lung disease - You have serious health complications such as cirrhosis of the liver or bleeding from internal veins - You are unable to follow the program instructions - You are currently experiencing an acute worsening (flare-up) of your CF Talk to your doctor about whether this trial might be right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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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 i

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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