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      Strategies to optimize treatment adherence in adolescent patients with cystic fibrosis

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          Abstract

          While development of new treatments for cystic fibrosis (CF) has led to a significant improvement in survival age, routine daily treatment for CF is complex, burdensome, and time intensive. Adolescence is a period of decline in pulmonary function in CF, and is also a time when adherence to prescribed treatment plans for CF tends to decrease. Challenges to adherence in adolescents with CF include decreased parental involvement, time management and significant treatment burden, and adolescent perceptions of the necessity and value of the treatments prescribed. Studies of interventions to improve adherence are limited and focus on education, without significant evidence of success. Smaller studies on behavioral techniques do not focus on adolescents. Other challenges for improving adherence in adolescents with CF include infection control practices limiting in-person interactions. This review focuses on the existing evidence base on adherence intervention in adolescents with CF. Future directions for efforts to optimize treatment adherence in adolescents with CF include reducing treatment burden, developing patient-driven technology to improve tracking, communication, and online support, and rethinking the CF health services model to include assessment of individualized adherence barriers.

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          Most cited references57

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          Shared Treatment Decision Making Improves Adherence and Outcomes in Poorly Controlled Asthma

          American Journal of Respiratory and Critical Care Medicine, 181(6), 566-577
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            Origins of cystic fibrosis lung disease.

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              Apps and Adolescents: A Systematic Review of Adolescents’ Use of Mobile Phone and Tablet Apps That Support Personal Management of Their Chronic or Long-Term Physical Conditions

              Background The prevalence of physical chronic or long-term conditions in adolescents aged 10-24 years is rising. Mobile phone and tablet mobile technologies featuring software program apps are widely used by these adolescents and their healthy peers for social networking or gaming. Apps are also used in health care to support personal condition management and they have considerable potential in this context. There is a growing body of literature on app use in health contexts, thereby making a systematic review of their effectiveness very timely. Objective To systematically review the literature on the effectiveness of mobile apps designed to support adolescents’ management of their physical chronic or long-term conditions. Methods We conducted a review of the English-language literature published since 2003 in five relevant bibliographical databases using key search terms. Two independent reviewers screened titles and abstracts using data extraction and quality assessment tools. Results The search returned 1120 hits. Of the 19 eligible full-text papers, four met our review criteria, reporting one pilot randomized controlled trial and three pretest/post-test studies. Samples ranged from 4 to 18 participants, with a combined sample of 46 participants. The apps reported were targeted at type 1 diabetes, asthma, and cancer. Two papers provided data for calculating effect size. Heterogeneity in terms of study design, reported outcomes, follow-up times, participants’ ages, and health conditions prevented meta-analyses. There was variation in whether adolescents received guidance in using the app or were solely responsible for navigating the app. Three studies reported some level of patient involvement in app design, development, and/or evaluation. Health professional involvement in the modelling stages of apps was reported in all studies, although it was not always clear whether specific clinical (as opposed to academic) expertise in working with adolescents was represented. The dearth of studies and the small overall sample size emphasizes the need for future studies of the development, evaluation, use, and effectiveness of mobile apps to support adolescents’ personal management of their conditions. Conclusions A key finding of the review is the paucity of evidence-based apps that exist, in contrast to the thousands of apps available on the app market that are not evidence-based or user or professional informed. Although we aimed to assess the effectiveness of apps, the dearth of studies meeting our criteria meant that we were unable to be conclusive in this regard. Based on the available evidence, apps may be considered feasible health interventions, but more studies involving larger sample sizes, and with patient and health professional input at all stages, are needed to determine apps’ acceptability and effectiveness. This review provides valuable findings and paves the way for future rigorous development and evaluation of health apps for adolescents with chronic or long-term conditions.
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                Author and article information

                Journal
                Adolesc Health Med Ther
                Adolesc Health Med Ther
                Adolescent Health, Medicine and Therapeutics
                Adolescent Health, Medicine and Therapeutics
                Dove Medical Press
                1179-318X
                2016
                21 October 2016
                : 7
                : 117-124
                Affiliations
                Division of Respiratory Diseases, Boston Children’s Hospital, Boston, MA, USA
                Author notes
                Correspondence: Lara C Bishay, Boston Children’s Hospital, 300 Longwood Avenue, Boston, MA 02115, USA, Tel +1 617 355 1900, Fax +1 617 730 0084, Email lara.bishay@ 123456childrens.harvard.edu
                Article
                ahmt-7-117
                10.2147/AHMT.S95637
                5085292
                27799838
                b7afe1cf-9738-4e45-8764-2de62e17c746
                © 2016 Bishay and Sawicki. This work is published and licensed by Dove Medical Press Limited

                The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed.

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                compliance,adolescence,medication,self management,intervention

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