scholarly journals Patient-Centered eHealth Interventions for Children, Adolescents, and Adults With Sickle Cell Disease: Systematic Review (Preprint)

2018 ◽  
Author(s):  
Sherif M Badawy ◽  
Robert M Cronin ◽  
Jane Hankins ◽  
Lori Crosby ◽  
Michael DeBaun ◽  
...  

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.

2018 ◽  
Author(s):  
Ashaunta T Anderson ◽  
Nhu Tran ◽  
Kathryn Smith ◽  
Lorraine I Kelley-Quon

BACKGROUND Sickle cell disease (SCD) is a genetic disorder of red blood cells that results in acute and chronic health problems, including painful syndromes. Opioid analgesia is the mainstay of moderate to severe pain management in SCD, although adjunctive psychosocial approaches such as cognitive behavioral therapy (CBT) are increasingly incorporated. CBT has been used in populations of various ages to address a wide range of issues, such as mood disorders and chronic pain. It is unclear if effective CBT reduces the use of opioids to manage pain in pediatric SCD. OBJECTIVE The aim of this study is to evaluate the association between CBT and decreased opioid use in children with SCD. METHODS In this systematic review protocol, we describe our approach to applying predetermined eligibility criteria to searches of PubMed (including Medline), Embase, Cochrane, Web of Science, and PsycINFO databases, as well as Google Scholar and grey literature. In particular, we will use keywords to search for English-language studies of individuals with SCD aged 21 years old and younger published before November 2018. Keywords will allow us to assess for the primary outcome—total use of opioid medications—and the secondary outcomes—pain intensity and emotional functioning—during pain management using a combined opioid and CBT approach, opioids alone, or CBT alone. The review team will use standardized abstraction forms to review articles at the title, abstract, and full-text levels. Finally, reviewers will assess the risk for bias, quality of evidence, and adequacy of data for quantitative versus qualitative synthesis. If meta-analysis is deemed inappropriate, a narrative review will be conducted. RESULTS We will report a summary of findings across studies that meet eligibility criteria to compare the extent to which adjunctive CBT is associated with decreased opioid use among children with SCD. CONCLUSIONS This systematic review will present the current state of the evidence on CBT and opioid use in pediatric SCD, which may inform clinical practice and health policy to support optimized pain management. INTERNATIONAL REGISTERED REPOR PRR1-10.2196/13211


2015 ◽  
Vol 21 (1) ◽  
pp. 38-46 ◽  
Author(s):  
Sheena Daniels

Introduction: Sickle cell disease (SCD) is an inherited autosomal recessive disorder. In the United States, most individuals with SCD are African Americans, with an incidence of 1 in 400 to 1 in 500 live births. SCD is a lifelong disorder with no known cure.Background: SCD causes anemia, frequent painful episodes, and reduced life expectancy. The most disturbing clinical problem associated with SCD is severe pain episodes, the most common reason for hospitalization. Pharmacological interventions have been the mainstream for treatment; however, psychological interventions such as cognitive behavioral therapy (CBT) may complement current medical treatment, leading to better coping and overall improved quality of life.Methods: In a quasi-experimental one-group pretest–posttest study, 9 African American individuals with SCD completed 3 weekly educational sessions learning CBT methods.Results: Participants demonstrated increased frequency of use of CBT methods post-intervention, including diverting attention, coping self-statements, and behavioral activities, leading to better pain control. However, quality of life and role limitation did not show significant improvement.Discussion: CBT may be beneficial to those suffering from SCD when combined with conventional treatment options; however, there are still barriers to incorporating psychological interventions into practice.Conclusions: CBT shows promise for individuals with chronic conditions such as SCD, but more investigation into its efficacy is needed with larger sample sizes over longer periods of time.


Author(s):  
Abigail Radomsky

A clinical decision report appraising: Schatz J, Schlenz AM, McClellan CB, et al. Changes in coping, pain, and activity after cognitive-behavioral training. The Clinical Journal of Pain 2015;31(6):536-47 https://doi.org/10.1097/ajp.0000000000000183 for a child with sickle cell disease.


2021 ◽  
Vol 3 ◽  
Author(s):  
David-Zacharie Issom ◽  
Marie-Dominique Hardy-Dessources ◽  
Marc Romana ◽  
Gunnar Hartvigsen ◽  
Christian Lovis

Sickle cell disease (SCD) is the most common genetic blood disorder in the world and affects millions of people. With aging, patients encounter an increasing number of comorbidities that can be acute, chronic, and potentially lethal (e.g., pain, multiple organ damages, lung disease). Comprehensive and preventive care for adults with SCD faces disparities (e.g., shortage of well-trained providers). Consequently, many patients do not receive adequate treatment, as outlined by evidence-based guidelines, and suffer from mistrust, stigmatization or neglect. Thus, adult patients often avoid necessary care, seek treatment only as a last resort, and rely on self-management to maintain control over the course of the disease. Hopefully, self-management positively impacts health outcomes. However, few patients possess the required skills (e.g., disease-specific knowledge, self-efficacy), and many lack motivation for effective self-care. Health coaching has emerged as a new approach to enhance patients' self-management and support health behavior changes. Recent studies have demonstrated that conversational agents (chatbots) could effectively support chronic patients' self-management needs, improve self-efficacy, encourage behavior changes, and reduce disease-severity. To date, the use of chatbots to support SCD self-management remains largely under-researched. Consequently, we developed a high-fidelity prototype of a fully automated health coaching chatbot, following patient-important requirements and preferences collected during our previous work. We recruited a small convenience sample of adults with SCD to examine the usability and perceived usefulness of the system. Participants completed a post-test survey using the System Usability Scale and the Usefulness Scale for Patient Information Material questionnaire. Thirty-three patients participated. The majority (64%) was affected by the most clinically severe SCD genotypes (Hb SS, HbSβ0). Most participants (94%) rated the chatbots as easy and fun to use, while 88% perceived it as useful support for patient empowerment. In the qualitative phase, 72% of participants expressed their enthusiasm using the chatbot, and 82% emphasized its ability to improve their knowledge about self-management. Findings suggest that chatbots could be used to promote the acquisition of recommended health behaviors and self-care practices related to the prevention of the main symptoms of SCD. Further work is needed to refine the system, and to assess clinical validity.


SLEEP ◽  
2021 ◽  
Vol 44 (Supplement_2) ◽  
pp. A139-A140
Author(s):  
Janannii Selvanathan ◽  
Chi Pham ◽  
Mahesh Nagappa ◽  
Philip Peng ◽  
Marina Englesakis ◽  
...  

Abstract Introduction Patients with chronic non-cancer pain often report insomnia as a significant comorbidity. Cognitive behavioral therapy for insomnia (CBT-I) is recommended as the first line of treatment for insomnia, and several randomized controlled trials (RCTs) have examined the efficacy of CBT-I on various health outcomes in patients with comorbid insomnia and chronic non-cancer pain. We conducted a systematic review and meta-analysis on the effectiveness of CBT-I on sleep, pain, depression, anxiety and fatigue in adults with comorbid insomnia and chronic non-cancer pain. Methods A systematic search was conducted using ten electronic databases. The duration of the search was set between database inception to April 2020. Included studies must be RCTs assessing the effects of CBT-I on at least patient-reported sleep outcomes in adults with chronic non-cancer pain. Quality of the studies was assessed using the Cochrane risk of bias assessment and Yates quality rating scale. Continuous data were extracted and summarized using standard mean difference (SMD) with 95% confidence intervals (CIs). Results The literature search resulted in 7,772 articles, of which 14 RCTs met the inclusion criteria. Twelve of these articles were included in the meta-analysis. The meta-analysis comprised 762 participants. CBT-I demonstrated a large significant effect on patient-reported sleep (SMD = 0.87, 95% CI [0.55–1.20], p &lt; 0.00001) at post-treatment and final follow-up (up to 9 months) (0.59 [0.31–0.86], p &lt; 0.0001); and moderate effects on pain (SMD = 0.20 [0.06, 0.34], p = 0.006) and depression (0.44 [0.09–0.79], p= 0.01) at post-treatment. The probability of improving sleep and pain following CBT-I at post-treatment was 81% and 58%, respectively. The probability of improving sleep and pain at final follow-up was 73% and 57%, respectively. There were no statistically significant effects on anxiety and fatigue. Conclusion This systematic review and meta-analysis showed that CBT-I is effective for improving sleep in adults with comorbid insomnia and chronic non-cancer pain. Further, CBT-I may lead to short-term moderate improvements in pain and depression. However, there is a need for further RCTs with adequate power, longer follow-up periods, CBT for both insomnia and pain, and consistent scoring systems for assessing patient outcomes. Support (if any):


Author(s):  
Shannon Phillips ◽  
Julie Kanter ◽  
Martina Mueller ◽  
Amy Gulledge ◽  
Kenneth Ruggiero ◽  
...  

Abstract Sickle cell disease (SCD) is an inherited hemoglobinopathy that leads to blood vessel occlusion and multiorgan complications, including pain, that may be experienced daily. Symptom management often begins at home, and tools are needed to support self-management strategies that can be implemented by children with SCD and families. The purpose of this study was to assess the feasibility of the mHealth self-management intervention (application) Voice Crisis Alert V2 for children with SCD and families. Feasibility assessment was guided by the Reach, Efficacy, Adoption, Implementation, and Maintenance framework. Data were collected with 60 dyads (children with SCD/caregivers) at four time points. Self-management data were collected via application use, and postintervention interviews were conducted. Analyses included descriptive statistics and constant comparison with directed content analysis. Recruitment was completed in 28 weeks, with 82% retention at end-of-intervention. Mobile Application Rating Scale scores and interview data indicated high satisfaction. From baseline to mid-intervention, 94% of dyads used the application (75% of total use); 45% used the application from mid-intervention to the end-of-intervention. Dyads made 2,384 actions in the application; the most commonly used features were recording health history and recording and tracking symptoms. Few reported issues with the application; most issues occurred early in the study and were corrected. After the intervention period was completed, 37% continued to use the application. Feasibility was confirmed by meeting recruitment and retention goals, high adoption of the application, and high reported satisfaction with the application. Challenges with sustained use were encountered, and areas for improvement were identified.


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