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

Abstract

BackgroundSickle 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.ObjectiveWe 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.MethodsWe 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.ResultsOf 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%).ConclusionsOur 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 t...

Mapping the evidence and gaps of interventions for pediatric chronic pain to inform policy, research, and practice: A systematic review and quality assessment of systematic reviews

“…8,37,[41][42][43][44][45][46][47][48][49][50][51][52][53][54][55][56][57][58] Reviews focused on single populations most frequently examined abdominal pain (n = 10; 21.3%), 10,35,39,40,57,[59][60][61]77,78 headaches or migraines (n = 5; 10.6%), [62][63][64][65][66] rheumatological conditions (e.g., juvenile idiopathic arthritis, lupus; n = 4; 8.5%), [67][68][69][70] cancer-related pain (n = 3; 6.4%), [71][72][73] or sickle cell disease (n = 2; 4.3%). 74,75 Single reviews focused on patellar tendon pain/Osgood-Schlatter's (n = 1; 2.1%), 76 cerebral palsy (n = 1; 2.1%), 80 endometriosis (n = 1; 2.1%), 79 or joint hypermobility/ Ehlers-Danlos/osteogenesis imperfecta (n = 1; 2.1%).…”

“…Most reviews included studies crossing childhood and adolescence (n = 45; 95.7%), with two reviews (4.3%) focused on adolescents (>12-18 years old). 41,75 Five reviews also included studies with adults (>18 years old). 48,50,70,74,75 Types of Settings Reviews included studies conducted in a variety of settings, including primarily tertiary care or hospital settings (inpatient, day treatment, outpatient clinics, and emergency departments), followed by primary care or community-based clinics and, rarely, schools.…”

“…Three reviews (6.4%) focused exclusively on "e-health" or remotely delivered interventions. 47,56,75 The setting was not clearly reported in 12 (25.5%) reviews.…”

“…82 Three reviews focused on the remote or computerized delivery of psychological interventions. 47,56,75 Far fewer systematic reviews examined interdisciplinary interventions despite this being the recommended approach to chronic pain management, 83 followed by reviews of other interventions such as alternative diets, herbal supplements, and surgeries. The fewest reviews examined physical interventions, which highlights this as a key area for further research given its prioritization by patients and families, 7 as well as the evidence for multimodal interventions, of which physical interventions are included.…”

eHealth and mHealth interventions in pediatric cancer: A systematic review of interventions across the cancer continuum

“…“eHealth” has been referred to as the general use of information technology in the promotion, prevention, treatment, and maintenance of health (e.g., internet, digital gaming, virtual reality, and robotics), whereas “mHealth” has been referred to as the use of mobile and wireless applications (e.g., text messaging, apps, wearable devices, remote sensing, and social media platforms) in the delivery of health‐related services . There is growing evidence to support the feasibility, acceptability, and efficacy of eHealth and mHealth interventions in improving medication adherence, self‐management, psychosocial well‐being, and health outcomes in children, adolescents, and adults with chronic health conditions, yet cost‐effectiveness remains unclear …”