scholarly journals Integration of Mobile Health Into Sickle Cell Disease Care to Increase Hydroxyurea Utilization: Protocol for an Efficacy and Implementation Study (Preprint)

2019 ◽  
Author(s):  
Jane S Hankins ◽  
Nirmish Shah ◽  
Lisa DiMartino ◽  
Donald Brambilla ◽  
Maria E Fernandez ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Mobile Health ◽  
Self Efficacy ◽  
Large Scale ◽  
Cell Disease ◽  
Prescribing Behavior ◽  
Blood Institute ◽  
Mhealth Intervention ◽  
Knowledge Barriers

BACKGROUND Hydroxyurea prevents disease complications among patients with sickle cell disease (SCD). Although its efficacy has been endorsed by the National Health Lung and Blood Institute evidence-based guidelines, its adoption is low, both by patients with SCD and providers. Mobile health (mHealth) apps provide benefits in improving medication adherence and self-efficacy among patients with chronic diseases and have facilitated prescription among medical providers. However, mHealth has not been systematically tested as a tool to increase hydroxyurea adherence nor has the combination of mHealth been assessed at both patient and provider levels to increase hydroxyurea utilization. OBJECTIVE This study aims to increase hydroxyurea utilization through a combined two-level mHealth intervention for both patients with SCD and their providers with the goals of increasing adherence to hydroxyurea among patients and improve hydroxyurea prescribing behavior among providers. METHODS We will test the efficacy of 2 mHealth interventions to increase both patient and provider utilization and knowledge of hydroxyurea in 8 clinical sites of the NHLBI-funded Sickle Cell Disease Implementation Consortium (SCDIC). The patient mHealth intervention, <i>InCharge Health,</i> includes multiple components that address memory, motivation, and knowledge barriers to hydroxyurea use. The provider mHealth intervention, <i>Hydroxyurea Toolbox</i> (<i>HU Toolbox</i>), addresses the clinical knowledge barriers in prescribing and monitoring hydroxyurea. The primary hypothesis is that among adolescents and adults with SCD, adherence to hydroxyurea, as measured by the proportion of days covered (the ratio of the number of days the patient is covered by the medication to the number of days in the treatment period), will increase by at least 20% after 24 weeks of receiving the <i>InCharge Health</i> app, compared with their adherence at baseline. As secondary objectives, we will (1) examine the change in health-related quality of life, acute disease complications, perceived health literacy, and perceived self-efficacy in taking hydroxyurea among patients who use <i>InCharge Health</i> and (2) examine potential increases in the awareness of hydroxyurea benefits and risks, appropriate prescribing, and perceived self-efficacy to correctly administer hydroxyurea therapy among SCD providers between baseline and 9 months of using the <i>HU Toolbox</i> app. We will measure the reach, adoption, implementation, and maintenance of both the <i>InCharge Health</i> and the <i>HU Toolbox</i> apps using the reach, effectiveness, adoption, implementation, and maintenance framework and qualitatively evaluate the implementation of both mHealth interventions. RESULTS The study is currently enrolling study participants. Recruitment is anticipated to be completed by mid-2021. CONCLUSIONS If this two-level intervention, that is, the combined use of InCharge Health and HU Toolbox apps, demonstrates efficacy in increasing adherence to hydroxyurea and prescribing behavior in patients with SCD and their providers, respectively, both apps will be offered to other institutions outside the SCDIC through a future large-scale implementation-effectiveness study. CLINICALTRIAL ClinicalTrials.gov NCT04080167; https://clinicaltrials.gov/ct2/show/NCT04080167 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/16319

scholarly journals Integration of Mobile Health Into Sickle Cell Disease Care to Increase Hydroxyurea Utilization: Protocol for an Efficacy and Implementation Study

10.2196/16319 ◽  
2020 ◽  
Vol 9 (7) ◽  
pp. e16319
Author(s):  
Jane S Hankins ◽  
Nirmish Shah ◽  
Lisa DiMartino ◽  
Donald Brambilla ◽  
Maria E Fernandez ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Mobile Health ◽  
Self Efficacy ◽  
Large Scale ◽  
Cell Disease ◽  
Prescribing Behavior ◽  
Blood Institute ◽  
Mhealth Intervention ◽  
Knowledge Barriers

Background Hydroxyurea prevents disease complications among patients with sickle cell disease (SCD). Although its efficacy has been endorsed by the National Health Lung and Blood Institute evidence-based guidelines, its adoption is low, both by patients with SCD and providers. Mobile health (mHealth) apps provide benefits in improving medication adherence and self-efficacy among patients with chronic diseases and have facilitated prescription among medical providers. However, mHealth has not been systematically tested as a tool to increase hydroxyurea adherence nor has the combination of mHealth been assessed at both patient and provider levels to increase hydroxyurea utilization. Objective This study aims to increase hydroxyurea utilization through a combined two-level mHealth intervention for both patients with SCD and their providers with the goals of increasing adherence to hydroxyurea among patients and improve hydroxyurea prescribing behavior among providers. Methods We will test the efficacy of 2 mHealth interventions to increase both patient and provider utilization and knowledge of hydroxyurea in 8 clinical sites of the NHLBI-funded Sickle Cell Disease Implementation Consortium (SCDIC). The patient mHealth intervention, InCharge Health, includes multiple components that address memory, motivation, and knowledge barriers to hydroxyurea use. The provider mHealth intervention, Hydroxyurea Toolbox (HU Toolbox), addresses the clinical knowledge barriers in prescribing and monitoring hydroxyurea. The primary hypothesis is that among adolescents and adults with SCD, adherence to hydroxyurea, as measured by the proportion of days covered (the ratio of the number of days the patient is covered by the medication to the number of days in the treatment period), will increase by at least 20% after 24 weeks of receiving the InCharge Health app, compared with their adherence at baseline. As secondary objectives, we will (1) examine the change in health-related quality of life, acute disease complications, perceived health literacy, and perceived self-efficacy in taking hydroxyurea among patients who use InCharge Health and (2) examine potential increases in the awareness of hydroxyurea benefits and risks, appropriate prescribing, and perceived self-efficacy to correctly administer hydroxyurea therapy among SCD providers between baseline and 9 months of using the HU Toolbox app. We will measure the reach, adoption, implementation, and maintenance of both the InCharge Health and the HU Toolbox apps using the reach, effectiveness, adoption, implementation, and maintenance framework and qualitatively evaluate the implementation of both mHealth interventions. Results The study is currently enrolling study participants. Recruitment is anticipated to be completed by mid-2021. Conclusions If this two-level intervention, that is, the combined use of InCharge Health and HU Toolbox apps, demonstrates efficacy in increasing adherence to hydroxyurea and prescribing behavior in patients with SCD and their providers, respectively, both apps will be offered to other institutions outside the SCDIC through a future large-scale implementation-effectiveness study. Trial Registration ClinicalTrials.gov NCT04080167; https://clinicaltrials.gov/ct2/show/NCT04080167 International Registered Report Identifier (IRRID) DERR1-10.2196/16319

Newborn Experience in the Cooperative Study of Sickle Cell Disease

PEDIATRICS ◽  
1989 ◽  
Vol 83 (5) ◽  
pp. 827-829
Author(s):  
Frances M. Gill ◽  
Audrey Brown ◽  
Dianne Gallagher ◽  
Steven Diamond ◽  
Eleanor Goins ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Newborn Screening ◽  
Sickle Cell ◽  
Large Scale ◽  
Collaborative Study ◽  
Developmental State ◽  
Cooperative Study ◽  
Cell Disease ◽  
Blood Institute ◽  
Rural And Urban

In 1978, the National Heart, Lung, and Blood Institute of the NIH initiated a large-scale, multiinstitutional collaborative study to investigate the clinical course of sickle cell disease from birth to death. Twenty-three institutions participate in the cooperative study, of which 19 have pediatric components. Newborn screening is performed in 18 institutions. Centers are located along the east coast, and in the South, the Midwest, and California. Both rural and urban populations are represented in the study. This Cooperative Study of Sickle Cell Disease has been described in detail. MATERIALS AND METHODS Newborn screening began in late 1978, and patient entry began in 1979. Between late 1978 and August 1986, 633 infants were found to have a hemoglobin pattern of FS and 326 were found to have FSC. A major effort was made to enroll these infants with sickle cell disease in the cooperative study. Other infants whose diseases were not diagnosed by screening but referred to the centers were also enrolled. From these two sources a total of 600 infants less than 6 months of age had been enrolled in the study as of August 1986. Diagnoses were established by cellulose acetate and citrate agar gel electrophoreses or by isoelectric focusing studies. The children have been followed up regularly at the study centers. Visits are scheduled for the ages of 2, 4, 6, 9, 12, 15, 18, 21, and 24 months and twice yearly thereafter. During the visits an interval history is obtained, a complete physical examination is performed, and developmental state is assessed.

scholarly journals Validity and Reliability of Sickle Cell Self-efficacy Scale

2014 ◽  
Vol 8 (4) ◽  
pp. 31-35
Author(s):  
Sheyda Javadipour ◽  
Shiva Javadipour ◽  
Bijan Keikhaeidehdezi ◽  
Meymanat Akbari
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Self Efficacy ◽  
Research Center ◽  
Cell Disease ◽  
Validity And Reliability ◽  
Medical Sciences ◽  
Functional Activities ◽  
Rehabilitation Research ◽  
The Relationship

Correction: On 20/08/2014 the spelling of the third author was changed from Bijan Keykhah DehdeziTO Bijan Keikhaeidehdezi.Correction: On 20/08/2014 the affiliation of the first author was changed fromMusculoskeletal Rehabilitation Research Center, Jundishapur University of Medical Sciences of Ahvaz, IranTO Musculoskeletal Rehabilitation Research Center, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran Abstract:Background: psychometric properties of a 9-item self-appraisal scale for studying self-efficacy in sickle cell disease was evaluated in order to survey people’s comprehension of their capabilities to be engaged in functional activities of daily living who were suffering from sickle cell disease and in order to manage syndromes.Methods: the participants of this study were aged between 11-19 years with sickle cell disease under treatment for at least one year.Result: reliability analysis showed the internal consistency and correlation coefficient of the scale to be acceptable values. Construct validity analysis showed moderate positive correlation between the scores obtained using Sickle Cell Self-Efficacy Scale and those obtained using Mental Components Scale of SF36. There is a weak correlation between the score obtained from SCSES and that of Physical Components Scale of SF36.Conclusion: this scale can be used in the future for future studies on self-efficacy and also to find the relationship between this component and other components.DOI: http://dx.doi.org/10.3126/ijls.v8i4.10931

scholarly journals Advancing Healthcare Outcomes for Sickle Cell Disease in Nigeria Using Mobile Health Tools

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2173-2173
Author(s):  
Arwa Fraiwan ◽  
Muhammad Noman Hasan ◽  
Ran An ◽  
Amy J. Rezac ◽  
Nicholas J. Kocmich ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Mobile Health ◽  
Sub Saharan Africa ◽  
Diagnosis And Treatment ◽  
Test Results ◽  
Cell Disease ◽  
The World ◽  
Equity Ownership ◽  
Sub Saharan

Nigeria leads the world in the number of cases of sickle cell disease (SCD). An estimated 150,000 babies are born annually in Nigeria with SCD, a heredity disorder, and 70-90% die before age 5. Only a small portion of affected infants and children in sub Saharan Africa (SSA) reach adolescence. Over 650 children die per day in sub-Saharan Africa from SCD. These dismal statistics are in sharp contrast to outcomes in high-income countries (HICs) where more than 90% of SCD patients reach adulthood. The World Health Organization (WHO) estimates that 70% of deaths could be prevented with a low cost diagnostic and treatment plan. Meaningful preventive care and treatment cannot be implemented without a structured plan for early diagnosis and patient tracking.Early diagnosis requires improved access to parents and guardians of children with SCD, and gaining this access remains a challenge in most of SSA. In 2015, Nigeria's Kano state government, with support from foreign partners, established a community-based program for newborn registration. This platform provides unique access to newborn babies in one of Nigeria's most populous cities, but still lacks a functioning patient testing, tracking, and monitoring system, which we plan to address in our ongoing study. This study will introduce mobile health in a low-income country with low literacy rate and hopefully accustom that segment of the population to more varied mobile health applications that will ultimately improve their health in the long run. Our current operational platform in Kano, Nigeria provides access to a large population with a high prevalence of SCD. We have previously completed pilot testing of 315 subjects for SCD using our microchip electrophoresis test. We are planning to test up to 4,500 additional subjects less than 5 years of age at Murtala Muhammed Specialist Hospital. The hospital staff includes 97 physicians and 415 nurses and outpatient clinics serve about 30,000 patients monthly. The maternity department has a 200-bed capacity and the antenatal clinic performs about 1,000 deliveries and serves an average of 3,000 mothers monthly. Enrollment is planned to start on September 15, 2019 and medical staff are currently being trained to run the tests. Our study is registered in the United States National Library of Medicine's ClinicalTrials.gov (Identifier: NCT03948516). Our technology is uniquely paired with an automatic reader and an Electronic Medical Record (EMR) and patient management solution to record POC test results, register new cases, and track patients for follow-up (Fig. 1). The reader enables automated interpretation of test results, local and remote test data storage, and includes geolocation (Global Positioning System) (Fig. 2). The system will generate reports for all cases of SCD, track hospital visits, appointments, lab tests, and will have mobile and dashboard applications for tracking patients and samples. The application will be installed on mobile devices provided to users. The proposed system will be compliant with the existing privacy standards to handle medical data (e.g., HIPAA in the US and GDPR in the EU). All communications between the parties will be secured via end-to-end encryption as a safeguard. We anticipate that our project will increase the rates of screening, diagnosis and timely treatment of SCD in Kano State of Nigeria. The project's broader impact will likely be the ability to track and monitor screening, disease detection, diagnosis and treatment, which can be scaled up to the whole nation of Nigeria, then to sub-Saharan Africa. The data obtained and analyzed will be the first of their kind and will be used to inform the design of programs to improve access to, and availability of, effective care for this underserved populations. The importance of increased access to diagnosis and treatment should not be underestimated - it is crucial for realizing effective management of people with SCD. The impact can be enhanced by complementing diagnosis and patient tracking with education for the families so they can provide or seek the necessary preventative treatment. Identification of the location of the patients in need would help identify the areas where family, parent, caregiver education should be provided. Disclosures Fraiwan: Hemex Health, Inc.: Equity Ownership, Patents & Royalties. Hasan:Hemex Health, Inc.: Equity Ownership, Patents & Royalties. An:Hemex Health, Inc.: Patents & Royalties. Thota:Hemex Health, Inc.: Employment. Gurkan:Hemex Health, Inc.: Consultancy, Employment, Equity Ownership, Patents & Royalties, Research Funding.

Health-Related Stigma, Social Support, Self-Efficacy, and Self-Care Actions Among Adults With Sickle Cell Disease in Oman

2021 ◽  
pp. 105477382110467
Author(s):  
Huda Al Raqaishi ◽  
Mohammad Al Qadire ◽  
Omar Alzaabi ◽  
Omar Al Omari
Keyword(s):  
Social Support ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Self Efficacy ◽  
Self Care ◽  
Care Seeking ◽  
Cell Disease ◽  
Cross Sectional ◽  
Related Stigma ◽  
Health Related

Stigma contributes to the burden of individuals and families affected by Sickle cell disease (SCD) and causes delay in appropriate care seeking. The aim of this study is to examine the levels and associations between stigma, social support, self-efficacy, and self-care actions among adult patients with SCD in Oman using a cross-sectional, correlational design. Of the 264 participants, 56.1% ( n = 148) were males, with mean age of 30.1 years ( SD 7.7). Half of the participants were married, and 88.3% had no other associated diseases. The results demonstrate that patients in Oman suffer from health-related stigma. However, social support, self-efficacy, and self-care actions were reported to be high and correlated with several clinical and demographic variables. Based on the results, effective, low-cost interventions such as psycho-educational groups, individual counseling, or group therapies might be developed. They can promote belief in enhanced efficacy and improved SCD adaptation, thereby increasing patient, and provider satisfaction.

scholarly journals Sex Based Differences in Sickle Cell Disease

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 37-37
Author(s):  
Rita V Masese ◽  
Dominique Bulgin ◽  
Mitchell Knisely ◽  
Liliana Preiss ◽  
Eleanor Stevenson ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Board Of Directors ◽  
Sickle Cell ◽  
Research Funding ◽  
Categorical Variables ◽  
Continuous Variables ◽  
Cell Disease ◽  
Advisory Committees ◽  
Blood Institute ◽  
National Heart Lung

Introduction Sickle cell disease (SCD) is the most common inherited blood disorders in the United States. The disease predominantly affects African Americans with 1 out of every 365 individuals born with SCD. The disease is characterized by vascular inflammation and vaso-occlusion leading to numerous complications and multi-organ dysfunction. Previous studies have shown women with SCD tend to outlive their male counterparts. Other than the increased life expectancy, sex-based clinical outcome differences in SCD remain largely unknown. To better characterize sex-based differences in SCD, we assessed sociodemographic characteristics, pain, treatment characteristics, laboratory measures and complications among males and females currently enrolled in the Sickle Cell Disease Implementation Consortium (SCDIC) registry. Methods The SCDIC consists of eight academic and comprehensive SCD centers, and one data-coordinating center that received funding from the National Heart Lung and Blood Institute to improve outcomes for individuals with SCD. Participants were eligible for the enrollment in the SCDIC registry if they were 15 to 45 years of age and had a confirmed diagnosis of SCD. Participants were excluded if they had sickle cell trait or had a successful bone marrow transplant. Enrolled participants completed surveys. Data were also abstracted from the participants' medical records. Data were entered into a REDCap database and analyzed using SAS version 9.4 (SAS Institute; Cary, NC). Categorical variables were presented as frequencies and percentages, continuous variables were presented as medians and interquartile ranges (IQR) or means and standard deviations. Categorical variables were analyzed using Chi-Square or Fisher exact tests when appropriate. Continuous variables were compared using the Mann-Whitney U test or independent sample t-tests depending on the distribution. A two-sided p-value less than 0.05 was deemed significant. Results A total of 2,124 participants were included in the study. The mean (SD) age of our participants was 27.8 (7.9) years. Almost all (95.6%) were Africa American, female (56%) and had hemoglobin SS (68.2%) SCD genotype. More males (55.4 % vs. 44.6%, p &lt;0.0001) were taking hydroxyurea. Females had significantly worse reports of pain frequency and severity (p=0.0002 and &lt;0.0001 respectively), more vaso-occlusive episodes (p=0.01) and a higher occurrence of 3 or more hospital admissions in the past year (30.9 % vs. 25.5, p= 0.03). Males had significantly more skin ulcers and respiratory, musculoskeletal, genitourinary and cardiovascular complications while females had more anxiety, depression and autoimmune conditions. Males also had significantly higher creatinine, blood urea nitrogen, albumin and liver enzymes (alkaline phosphatase, aspartate and alanine aminotransferases). Females had higher fetal hemoglobin levels with and without hydroxyurea use. There were no statistical differences in ethnicity, marital and employment status. Conclusion Key differences in SCD presentation and occurrence of complications exist among males and females. Females had higher rates of depression and anxiety while males had more chronic end-organ complications that are life threatening. Our findings emphasize the need for stratification of data analysis by sex in future SCD studies. Disclosures Hankins: Global Blood Therapeutics: Consultancy, Research Funding; National Heart, Lung, and Blood Institute: Honoraria, Research Funding; LINKS Incorporate Foundation: Research Funding; American Society of Pediatric Hematology/Oncology: Honoraria; MJH Life Sciences: Consultancy, Patents & Royalties; UptoDate: Consultancy; Novartis: Research Funding. Treadwell:UpToDate: Honoraria; Global Blood Therapeutics: Consultancy. King:Tioma Therapuetics: Consultancy; WUGEN: Current equity holder in private company; RiverVest: Consultancy; Celgene: Consultancy; Cell Works: Consultancy; Incyte: Consultancy; Magenta Therapeutics: Membership on an entity's Board of Directors or advisory committees; Bioline: Consultancy; Novimmune: Research Funding; Amphivena Therapeutics: Research Funding. Gordeuk:CSL Behring: Consultancy, Research Funding; Global Blood Therapeutics: Consultancy, Research Funding; Imara: Research Funding; Ironwood: Research Funding; Novartis: Consultancy. Kanter:bluebird bio, inc: Consultancy, Honoraria; SCDAA Medical and Research Advisory Board: Membership on an entity's Board of Directors or advisory committees; AGIOS: Membership on an entity's Board of Directors or advisory committees; Novartis: Consultancy; Sanofi: Consultancy; Medscape: Honoraria; Guidepoint Global: Honoraria; GLG: Honoraria; Jeffries: Honoraria; Cowen: Honoraria; Wells Fargo: Honoraria; NHLBI Sickle Cell Advisory Board: Membership on an entity's Board of Directors or advisory committees; BEAM: Membership on an entity's Board of Directors or advisory committees. Glassberg:Eli Lilly and Company: Research Funding; Pfizer: Research Funding; Global Blood Therapeutics: Consultancy. Shah:Bluebird Bio: Consultancy; Novartis: Consultancy, Research Funding, Speakers Bureau; Global Blood Therapeutics: Consultancy, Research Funding, Speakers Bureau; CSL Behring: Consultancy; Alexion: Speakers Bureau.

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