Patient-centered eHealth interventions for children, adolescents, and adults with sickle cell disease: Systematic review

Sherif M. Badawy*, Robert M. Cronin, Jane Hankins, Lori Crosby, Michael DeBaun, Alexis A. Thompson, Nirmish Shah

*Corresponding author for this work

Research output: Contribution to journalReview article

19 Citations (Scopus)

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.

Original languageEnglish (US)
Article numbere10940
JournalJournal of medical Internet research
Volume20
Issue number7
DOIs
StatePublished - Jul 2018

Fingerprint

Sickle Cell Anemia
Self Care
Mobile Applications
Text Messaging
Health
Cognitive Therapy
Directly Observed Therapy
Child Health
Medication Adherence
Reproductive Health
MEDLINE
Internet
Sample Size
Cost-Benefit Analysis
Meta-Analysis
Young Adult
Sleep
Chronic Disease
Language
Learning

Keywords

  • Anemia
  • Internet
  • Interventions
  • Self-management
  • Sickle cell
  • Sickle cell
  • Telemedicine
  • eHealth
  • mHealth

ASJC Scopus subject areas

  • Health Informatics

Cite this

@article{33e44cf89d374765b99cc54e6e0dd254,
title = "Patient-centered eHealth interventions for children, adolescents, and adults with sickle cell disease: Systematic review",
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.",
keywords = "Anemia, Internet, Interventions, Self-management, Sickle cell, Sickle cell, Telemedicine, eHealth, mHealth",
author = "Badawy, {Sherif M.} and Cronin, {Robert M.} and Jane Hankins and Lori Crosby and Michael DeBaun and Thompson, {Alexis A.} and Nirmish Shah",
year = "2018",
month = "7",
doi = "10.2196/10940",
language = "English (US)",
volume = "20",
journal = "Journal of Medical Internet Research",
issn = "1439-4456",
publisher = "Journal of medical Internet Research",
number = "7",

}

Patient-centered eHealth interventions for children, adolescents, and adults with sickle cell disease : Systematic review. / Badawy, Sherif M.; Cronin, Robert M.; Hankins, Jane; Crosby, Lori; DeBaun, Michael; Thompson, Alexis A.; Shah, Nirmish.

In: Journal of medical Internet research, Vol. 20, No. 7, e10940, 07.2018.

Research output: Contribution to journalReview article

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

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 - Sickle cell

KW - Telemedicine

KW - eHealth

KW - mHealth

UR - http://www.scopus.com/inward/record.url?scp=85052018984&partnerID=8YFLogxK

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

VL - 20

JO - Journal of Medical Internet Research

JF - Journal of Medical Internet Research

SN - 1439-4456

IS - 7

M1 - e10940

ER -