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      Patient-Centered eHealth Interventions for Children, Adolescents, and Adults With Sickle Cell Disease: Systematic Review

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          Abstract

          Background

          Sickle cell disease is an inherited blood disorder that affects over 100,000 Americans. Sickle cell disease–related complications lead to significant morbidity and early death. Evidence supporting the feasibility, acceptability, and efficacy of self-management electronic health (eHealth) interventions in chronic diseases is growing; however, the evidence is unclear in sickle cell disease.

          Objective

          We systematically evaluated the most recent evidence in the literature to (1) review the different types of technological tools used for self-management of sickle cell disease, (2) discover and describe what self-management activities these tools were used for, and (3) assess the efficacy of these technologies in self-management.

          Methods

          We reviewed literature published between 1995 and 2016 with no language limits. We searched MEDLINE, EMBASE, CINAHL, PsycINFO, and other sources. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Two independent reviewers screened titles and abstracts, assessed full-text articles, and extracted data from articles that met inclusion criteria. Eligible studies were original research articles that included texting, mobile phone–based apps, or other eHealth interventions designed to improve self-management in pediatric and adult patients with sickle cell disease.

          Results

          Of 1680 citations, 16 articles met all predefined criteria with a total of 747 study participants. Interventions were text messaging (4/16, 25%), native mobile apps (3/16, 19%), Web-based apps (5/16, 31%), mobile directly observed therapy (2/16, 13%), internet-delivered cognitive behavioral therapy (2/16, 13%), electronic pill bottle (1/16, 6%), or interactive gamification (2/16, 13%). Interventions targeted monitoring or improvement of medication adherence (5/16, 31%); self-management, pain reporting, and symptom reporting (7/16, 44%); stress, coping, sleep, and daily activities reporting (4/16, 25%); cognitive training for memory (1/16, 6%); sickle cell disease and reproductive health knowledge (5/16, 31%); cognitive behavioral therapy (2/16, 13%); and guided relaxation interventions (1/16, 6%). Most studies (11/16, 69%) included older children or adolescents (mean or median age 10-17 years; 11/16, 69%) and 5 included young adults (≥18 years old) (5/16, 31%). Sample size ranged from 11 to 236, with a median of 21 per study: <20 in 6 (38%), ≥20 to <50 in 6 (38%), and >50 participants in 4 studies (25%). Most reported improvement in self-management–related outcomes (15/16, 94%), as well as high satisfaction and acceptability of different study interventions (10/16, 63%).

          Conclusions

          Our systematic review identified eHealth interventions measuring a variety of outcomes, which showed improvement in multiple components of self-management of sickle cell disease. Despite the promising feasibility and acceptability of eHealth interventions in improving self-management of sickle cell disease, the evidence overall is modest. Future eHealth intervention studies are needed to evaluate their efficacy, effectiveness, and cost effectiveness in promoting self-management in patients with sickle cell disease using rigorous methods and theoretical frameworks with clearly defined clinical outcomes.

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          Most cited references65

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          The "meaningful use" regulation for electronic health records.

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            Text Messaging and Mobile Phone Apps as Interventions to Improve Adherence in Adolescents With Chronic Health Conditions: A Systematic Review

            Background The number of adolescents with chronic health conditions (CHCs) continues to increase. Medication nonadherence is a global challenge among adolescents across chronic conditions and is associated with poor health outcomes. While there has been growing interest in the use of mHealth technology to improve medication adherence among adolescents with CHCs, particularly text messaging and mobile phone apps, there has been no prior systematic review of their efficacy. Objective The purpose of this review was to systematically evaluate the most recent evidence for the efficacy of text messaging and mobile phone apps as interventions to promote medication adherence among adolescents with CHCs. Methods PubMed, Embase, CENTRAL, PsycINFO, Web of Science, Google Scholar, and additional databases were searched from 1995 until November 2015. An additional hand search of related themes in the Journal of Medical Internet Research was also conducted. The Preferred Reporting Results of Systematic Reviews and Meta-Analyses guidelines were followed. Two reviewers independently screened titles/abstracts, assessed full-text articles, extracted data from included articles, and assessed their quality using Grades of Recommendation, Assessment, Development, and Evaluation criteria. Included studies were described in original research articles that targeted adherence in adolescents with CHCs (12-24 years-old). Results Of the 1423 records examined, 15 met predefined criteria: text messaging (n=12) and mobile phone apps (n=3). Most studies were performed in the United States (11/15, 73%), were randomized-controlled trials (8/15, 53%), had a sample size <50 (11/15, 73%), and included adherence self-report and/or biomarkers (9/15, 60%). Only four studies were designed based on a theoretical framework. Approaches for text messaging and mobile phone app interventions varied across studies. Seven articles (7/15, 47%) reported significant improvement in adherence with moderate to large standardized mean differences. Most of the included studies were of low or moderate quality. Studies varied in sample size, methods of adherence assessment, and definition of adherence, which prohibited performing a meta-analysis. Conclusions The use of text messaging and mobile phone app interventions to improve medication adherence among adolescents with CHCs has shown promising feasibility and acceptability, and there is modest evidence to support the efficacy of these interventions. Further evaluation of short- and long-term efficacy and cost-effectiveness of these interventions is warranted given the early and evolving state of the science.
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              Texting and Mobile Phone App Interventions for Improving Adherence to Preventive Behavior in Adolescents: A Systematic Review

              Background Many preventable behaviors contribute to adolescent mortality and morbidity. Non-adherence to preventive measures represents a challenge and has been associated with worse health outcomes in this population. The widespread use of electronic communication technologies by adolescents, particularly the use of text messaging (short message service, SMS) and mobile phones, presents new opportunities to intervene on risk and preventive risk behavior, but little is known about their efficacy. Objective This study aimed to systematically evaluate evidence for the efficacy of text messaging and mobile phone app interventions to improve adherence to preventive behavior among adolescents and describe intervention approaches to inform intervention development. Methods This review covers literature published between 1995 and 2015. Searches included PubMed, Embase, CENTRAL, PsycINFO, CINAHL, INSPEC, Web of Science, Google Scholar, and additional databases. The search strategy sought articles on text messaging and mobile phone apps combined with adherence or compliance, and adolescents and youth. An additional hand search of related themes in the Journal of Medical Internet Research was also conducted. Two reviewers independently screened titles and abstracts, assessed full-text articles, and extracted data from articles that met inclusion criteria. Included studies reflect original research—experimental or preexperimental designs with text messaging or mobile phone app interventions—targeting adherence to preventive behavior among adolescents (12-24 years old). The preferred reporting items of systematic reviews and meta-analyses (PRISMA) guidelines were followed for reporting results, and findings were critically appraised against the Oxford Centre for Evidence-based Medicine criteria. Results Of 1454 records, 19 met inclusion criteria, including text messaging (n=15) and mobile phone apps (n=4). Studies targeted clinic attendance, contraceptive use, oral health, physical activity and weight management, sun protection, human papillomavirus (HPV) vaccination, smoking cessation, and sexual health. Most studies were performed in the United States (47%, 9/19), included younger adolescents (63%, 12/19), and had sample size <100 (63%, 12/19). Although most studies were randomized controlled trials (RCTs; 58%, 11/19), only 5 followed an intent-to-treat analysis. Only 6 of 19 studies (32%) incorporated a theoretical framework in their design. Most studies reported good feasibility with high acceptability and satisfaction. About half of the included studies (42%, 8/19) demonstrated significant improvement in preventive behavior with moderate standardized mean differences. As early efforts in this field to establish feasibility and initial efficacy, most studies were low to moderate in quality. Studies varied in sample size and methods of preventive behavior adherence or outcome assessment, which prohibited performing a meta-analysis. Conclusions Despite the promising feasibility and acceptability of text messaging and mobile phone apps in improving preventive behavior among adolescents, overall findings were modest in terms of efficacy. Further research evaluating the efficacy, effectiveness, and cost-effectiveness of these intervention approaches in promoting preventive behavior among adolescents is needed.
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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J. Med. Internet Res
                JMIR
                Journal of Medical Internet Research
                JMIR Publications (Toronto, Canada )
                1439-4456
                1438-8871
                July 2018
                19 July 2018
                : 20
                : 7
                : e10940
                Affiliations
                [01] 1 Division of Hematology, Oncology and Stem Cell Transplant Ann & Robert H Lurie Children's Hospital of Chicago Chicago, IL United States
                [02] 2 Department of Pediatrics Feinberg School of Medicine Northwestern University Chicago, IL United States
                [03] 3 Department of Pediatrics, Division of Hematology and Oncology Faculty of Medicine Zagazig University Zagazig Egypt
                [04] 4 Department of Biomedical Informatics Vanderbilt University Medical Center Nashville, TN United States
                [05] 5 Department of Internal Medicine Vanderbilt University Medical Center Nashville, TN United States
                [06] 6 Department of Hematology St Jude Children’s Research Hospital Memphis, TN United States
                [07] 7 Cincinnati Children's Hospital Medical Center Cincinnati, OH United States
                [08] 8 Department of Psychology University of Cincinnati Cincinnati, OH United States
                [09] 9 Division of Hematology and Oncology, Department of Pediatrics Vanderbilt-Meharry Center for Excellence in Sickle Cell Disease Vanderbilt University Medical Center Nashville, TN United States
                [10] 10 Division of Hematology Duke University School of Medicine Durham, NC United States
                Author notes
                Corresponding Author: Sherif M Badawy sbadawy@ 123456luriechildrens.org
                Author information
                http://orcid.org/0000-0002-4739-265X
                http://orcid.org/0000-0003-1916-6521
                http://orcid.org/0000-0003-4439-7321
                http://orcid.org/0000-0001-6656-7745
                http://orcid.org/0000-0002-0574-1604
                http://orcid.org/0000-0003-4961-8103
                http://orcid.org/0000-0002-7506-0935
                Article
                v20i7e10940
                10.2196/10940
                6072976
                30026178
                b1534c60-1684-4d12-abe9-1e756e126ffe
                ©Sherif M Badawy, Robert M Cronin, Jane Hankins, Lori Crosby, Michael DeBaun, Alexis A Thompson, Nirmish Shah. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 19.07.2018.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/.as well as this copyright and license information must be included.

                History
                : 2 May 2018
                : 24 May 2018
                : 6 June 2018
                : 21 June 2018
                Categories
                Review
                Review

                Medicine
                sickle cell,self-management,ehealth,mhealth,interventions,internet,anemia, sickle cell,telemedicine
                Medicine
                sickle cell, self-management, ehealth, mhealth, interventions, internet, anemia, sickle cell, telemedicine

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