Quittner 2012.
Study name | CFfone: A cell phone support program for adolescents with CF. |
Methods | The investigators propose to evaluate the efficacy of a cell phone support program for adolescents and young adults (CFfone) in improving CF knowledge, treatment adherence, and quality of life compared to a CF‐related educational website intervention (control group). Study type: interventional. Study design: efficacy study, randomised allocation. |
Participants | Inclusion criteria 1. Have a diagnosis of CF. 2. Be within the target age range of 11‐20 years old at enrolment. 3. Have regular access to an internet‐connected computer that does not prevent access to websites (i.e. firewall). Exclusion criteria 1. Have a developmental disorder that would affect ability to respond to survey questions. Estimated enrolment: n = 146. |
Interventions | Cell phone support program for adolescents and young adults (CFfone): Is a behavioral intervention which contains a password‐protected, secure website, which can be accessed via web capable cell phone. The website provides age appropriate medical and behavioral information, disease management tools and social networking features for adolescents. CF‐related educational website intervention (control group): The interventions contains a CF‐related educational website which has some areas of CF information and services relevant to adolescents. |
Outcomes |
Primary outcome The participants' CF‐related knowledge will be assessed via the CFK. It will be administered at baseline, month 3, month 6 and month 9. Secondary outcomes The participants' quality of life will be assessed via the CFQ‐R. The adolescent/adult version will be used for participants aged 15‐20 years and the CFQ‐R Older Child version will be used for participants ages 11‐14 years. Quality of life will be administered at baseline, month 3, month 6 and month 9. To measure treatment adherence a print out of CF related medications and pharmacy refill data will be collected. To obtain participants' prescription information in order to have adherence calculations for three month periods, the attending physician will fill out a prescribed treatment plan at every clinic visit during the study. Pharmacy refill data will be collected at baseline for the 12 months prior to enrolment; and again after the 9 month clinic visit for the 9 months of the study. The prescribed treatment plan will be collected at baseline, month 3, month 6 and month 9. Exploratory end point: social support. |
Starting date | September 2010. |
Contact information | Prof. Alexandra Quittner, University of Miami, Department of Psychology. |
Notes | Information provided by the investigator Prof. Quittner: "This study is ongoing, an already completed enrolment with a sample size of 100 adolescents ages 11 to 20. The study is going on at 6 CF Centers. We anticipate that all measures will be completed in April of 2013." |