TY - JOUR
T1 - Patient-centered eHealth interventions for children, adolescents, and adults with sickle cell disease
T2 - Systematic review
AU - Badawy, Sherif M.
AU - Cronin, Robert M.
AU - Hankins, Jane
AU - Crosby, Lori
AU - DeBaun, Michael
AU - Thompson, Alexis A.
AU - Shah, Nirmish
N1 - Publisher Copyright:
© Sherif M Badawy, Robert M Cronin, Jane Hankins, Lori Crosby, Michael DeBaun, Alexis A Thompson, Nirmish Shah.
PY - 2018/7
Y1 - 2018/7
N2 - 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.
AB - 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.
KW - Anemia
KW - Internet
KW - Interventions
KW - Self-management
KW - Sickle cell
KW - Telemedicine
KW - eHealth
KW - mHealth
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UR - http://www.scopus.com/inward/citedby.url?scp=85052018984&partnerID=8YFLogxK
U2 - 10.2196/10940
DO - 10.2196/10940
M3 - Review article
C2 - 30026178
AN - SCOPUS:85052018984
SN - 1439-4456
VL - 20
JO - Journal of medical Internet research
JF - Journal of medical Internet research
IS - 7
M1 - e10940
ER -