The Department of Health and Human Services (DHHS) Sickle Cell Disease (SCD) Initiative: Increasing Access and Improving Care

Blood ◽  
2011 ◽  
Vol 118 (21) ◽  
pp. 4834-4834
Author(s):  
Susan B. Shurin ◽  
Hani Atrash ◽  
Coleen Boyle ◽  
R. Lorraine Brown ◽  
Janet L. Collins ◽  
...  
Keyword(s):  
Health Care ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Care Providers ◽  
The United States ◽  
Evidence Based ◽  
Care Providers ◽  
Cell Disease ◽  
Evidence Based Guidelines ◽  
Support Research

Abstract Abstract 4834 Over the past half century, the course of sickle cell disease has been transformed in the United States through the conduct of rigorous biomedical research and broad application of the results. Universal newborn screening with comprehensive medical care has dramatically reduced death and disability in childhood, and increased the numbers of patients surviving into adulthood. However, access to health care has not kept up with the changing demographics of those affected by sickle cell disease. Health care often becomes fragmented when patients transition from pediatric to adult health care providers. Access to comprehensive care has impeded both conduct of clinical and implementation of research results. To address these needs in this changing environment, HHS Secretary Kathleen Sebelius has charged six agencies of HHS – NIH, CDC, HRSA, FDA, AHRQ and CMS – and the Offices of Minority Health and Planning and Evaluation, to improve the health of people with SCD. The agencies are coordinating their programs and collaborating with the Office of the Secretary, to achieve the following goals:create a comprehensive database of individuals with SCD to facilitate the monitoring of health outcomes and clinical research;improve the care of adults and children through development and dissemination of evidence-based guidelines, which are anticipated in Spring, 2012, with broad implementation plans;identify measures of quality of care for individuals with SCD and incorporate them into quality improvement programs at HHS;increase the availability of medical homes to improve patient access to quality primary and specialty care;provide State Medicaid officials, health care providers, patients, families and advocacy groups with information about resources related to SCD care and treatment;work with the pharmaceutical industry and academic investigators to increase the development of effective treatments for patients with SCD;support research to improve health care for people with SCD;support research to understand the clinical implications of SC trait;engage national and community-based SCD advocacy organizations and experts in ongoing discussions to ensure that issues of importance to persons affected are addressed. Organizational and strategic actions are being taken at each agency to enhance implementation of research advances; provide evidence-based guidelines to families, health care providers, and payers; facilitate new drug development; and provide public health data to impact both the health care delivery and research agendas. The enthusiastic support of the American Society of Hematology and its members is essential for long-term success of this endeavor. Disclosures: No relevant conflicts of interest to declare.

scholarly journals A Clinician's Experience in Initiation and Navigation of a Support Group for Sickle Cell Disease Patients - Can We Break Patient Bias?

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 13-14
Author(s):  
Chekwube Nwabueze
Keyword(s):  
Health Care ◽  
Sickle Cell Disease ◽  
Health Care System ◽  
Sickle Cell ◽  
Support Group ◽  
Health Care Providers ◽  
Health Care Systems ◽  
Care Providers ◽  
Cell Disease ◽  
Care System

Abstract Title A Clinician's Experience in Initiation and Navigation of a Support group for Sickle Cell Disease Patients - Can we Break Patient Bias? Introduction: A 2010 qualitative research study by the Journal of the Health Care for the Underserved validates the finding that African Americans are suspicious of health care programs that are targeted specifically for African American as they believe that the system would have ill-intent. This adversarial relation with health care providers persists in the aftermath of the Tuskegee experiment and other historical research abuses. This is particularly relevant to sickle cell disease (SCD) as it affects minorities, especially the black population. SCD is one of the most common genetic disorders in the nation affecting approximately 100,000 Americans. 1 in 365 African American and 1 in 16,300 Hispanic American are affected by SCD. Chronic pain with frequent episodes of vasoocclusive or pain crises (VOC) are defining clinical features of the disease. Opioids are required during VOC for effective treatment and often is a source of difficulty for patients negotiating the health care system. Over time, SCD can cause multiple organ complications including strokes, cardiopulmonary disease, renal disease and neurocognitive deficits. The disease is associated with a decreased life expectancy. Methods Case vignettes of real-life experiences of adult patient with SCD were used to highlight the basis of suspicion of health care providers and health care systems. 25 adult patients aged > 18years old were allowed to express their concern with joining and attending a monthly support group by questionnaire. We captured the various narratives, sought to address their concern through individualized in person dialogue with the social worker, and then invited them again to attend. Results: There were several reasons presented by patients for their reluctant to attend the support group sessions. These included difficulty with transportation, competing demands such as need to provide for family, lack of child care, educational level and ability to comprehend in a group environment, hospitalizations, frequent overwhelmingly concerns over privacy and confidentiality including use of photographs for media event by the hospital. After social work provider intervention including providing taxi vouchers, 80% of patients could be convinced to attend their first monthly group sessions. Retention rates of approximately 90% were achieved though we did note that participation was influenced by weather and competing domestic events. Conclusions: Our study highlights the difficulty SCD patients had with trusting health care providers including social workers. However, the majority of patients could be convinced to attend support groups sessions by acknowledging and addressing their concerns. The study highlighted the various challenges patient had negotiating health care systems; and we highlight the difficulties surrounding trust of providers. However, we demonstrated feasibility in achieving the goals by addressing their legitimate concern. Printed Program Description: This program will explore historical practices that influence minority patient's engagement in groups and research and discuss best practices on how to address this. References Scharff, Darcell P., et al. "More than Tuskegee: Understanding Mistrust about Research Participation." Journal of Health Care for the Poor and Underserved, vol. 21, no. 3, 2010, pp. 879-897., doi:10.1353/hpu.0.0323. Nguyen, Bich-May. "The Most Shocking and Inhuman." Family Medicine, vol. 51, no. 1, 2019, pp. 5-7., doi:10.22454/fammed.2019.175092. Singhal, Astha, et al. "Racial-Ethnic Disparities in Opioid Prescriptions at Emergency Department Visits for Conditions Commonly Associated with Prescription Drug Abuse." Plos One, vol. 11, no. 8, 2016, doi:10.1371/journal.pone.0159224. Cohen, Rachel D. "Distrust Of Health Care System May Keep Black Men Away From Prostate Cancer Research." NPR, NPR, 17 Oct. 2018, www.npr.org/sections/health-shots/2018/10/17/658101432/distrust-of-health-care-system-may-keep-black-men-away-from-prostate-cancer-rese. Center for Disease Control and Prevention. (2019) Sickle Cell Disease (SCD) [online]. Available at: https://www.cdc.gov/ncbddd/sicklecell/data.html (Accessed: 8/29/2019). Disclosures No relevant conflicts of interest to declare.

scholarly journals Perspectives on building sustainable newborn screening programs for sickle cell disease: Experiences from Tanzania

2020 ◽  
Author(s):  
Daima Bukini ◽  
Siana Nkya ◽  
Sheryl McCurdy ◽  
Columba Mbekenga ◽  
Karim Manji ◽  
...  
Keyword(s):  
Health Care ◽  
Sickle Cell Disease ◽  
Newborn Screening ◽  
Sickle Cell ◽  
Health Care Providers ◽  
Local Level ◽  
Comprehensive Care ◽  
Care Providers ◽  
Cell Disease ◽  
Screening Programs

1.0AbstractPrevalence of Sickle Cell Disease is high in Africa, with significant public health effects to the affected countries. Many of the countries with the highest prevalence of the disease also have poor health care system, high burden of infectious diseases with many other competing healthcare priorities. Though, considerable efforts have been done to implement newborn screening for Sickle Cell Disease programs in Africa but still coverage is low. Tanzania has one of the highest birth prevalence of children with Sickle Cell Disease in Africa. Also, it is one of many other African countries to implement pilot projects for Newborn Screening for Sickle Cell Disease to assess feasibility. Several efforts have been made afterwards to continue providing the screening services as well as comprehensive care for Sickle Cell Disease. Using qualitative methods, we conducted In- Depth Interviews and Focus Group Discussions with policy makers, health care providers and families to provide an analysis of their experiences and perspectives on efforts to expand and sustain Newborn Screening for Sickle Cell Disease and related comprehensive care services in the country. Findings have demonstrated both the opportunities and challenges in the implementation and sustainability of the services in low resource settings. A key area of strengthening is full integration of the services in countries’ health care systems to facilitate coverage, accessibility and affordability of the services. However, efforts at the local level to sustain the programs are encouraging and can be used as a model in other programs implemented in low resources settings.

scholarly journals Level of Utilization and Provider-Related Barriers to Hydroxyurea Use in the Treatment of Sickle Cell Disease in Jos, Nigeria

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 1029-1029 ◽  
Author(s):  
Akinyemi Olugbenga David Ofakunrin ◽  
Kehinde Adekola ◽  
Edache Sylvanus Okpe ◽  
Stephen Oguche ◽  
Tolulope Afolaranmi ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Care Providers ◽  
Conflicts Of Interest ◽  
Sampling Technique ◽  
P Value ◽  
Care Providers ◽  
Cell Disease ◽  
Cross Sectional ◽  
Inadequate Knowledge

Background: Hydroxyurea is one of the currently approved medications capable of modifying the pathogenesis of sickle cell disease (SCD), and its use has transformed the management of this disease worldwide.However, available evidences suggest that hydroxyurea is underutilized by sickle cell health-care providers in Nigeria despite the huge burden of the disease. Objectives: This study assessed the level of utilization and provider-related barriers to the use of hydroxyurea in the treatment of SCD patients in Jos, Nigeria. Methods: A cross-sectional study conducted among 132 medical doctors providing care for SCD patients in four tertiary hospitals in Jos using a multistage sampling technique. In this setting, SCD patients are cared for by the Hematologists, Pediatricians, Family Physicians and General Practitioners. Data on socio-demographics of the respondents, knowledge, utilization and barriers to the utilization of hydroxyurea were obtained using an interviewer-administered questionnaire. The data were processed and analysed using SPSS version 23. Hydroxyurea was adjudged utilized if a provider has prescribed hydroxyurea to any SCD patient within the last 12 months. Chi square test was used to test the association between the demographic, provider-related barrier variables and the level of utilization of hydroxyurea. The barriers were fed cumulatively into logistic regression model as predictors of utilization of hydroxyurea. Adjusted odds ratio and 95% confidence interval were used as point and interval estimates respectively. A P-value of <0.05 was considered statistically significant. Results: Of the 132 respondents, 88 (67%) had been in medical practice for upward of six years while 80 (60.6%) of them affirmed that they have attended to more than 10 SCD patients in the last 6 months. Sixty-seven (50.8%) of the participants had inadequate knowledge of hydroxyurea use in SCD management while the level of utilization of hydroxyurea in SCD treatment was 24.2%. The odds of non-utilization of hydroxyurea was 5.1 times higher in providers with no expertise in its use (OR =5.1; 95% CI =2.65-9.05; P<0.0001). Other barriers that predicted its non-utilization included inadequate knowledge (OR =0.17; 95% CI =0.29-0.71; P=0.017), fear of side-effects (OR =0.50; 95% CI =0.22-0.68; P=0.019) and doubt about the effectiveness of the medication (OR =0.30; 95% CI =0.20-0.90; P=0.002). Conclusion: The level of utilization of hydroxyurea in the treatment of SCD among the sickle cell care-providers is sub-optimal with the lack of expertise in its use identified as the most prominent barrier. Therefore, training of Nigeria sickle cell care-providers to attain and maintain competence in the use of hydroxyurea for the treatment of SCD is required. Keywords: Sickle cell disease, hydroxyurea, utilization, barriers, Jos, Nigeria Disclosures No relevant conflicts of interest to declare.

scholarly journals Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: a qualitative study

2020 ◽  
Vol 4 (18) ◽  
pp. 4463-4473
Author(s):  
Jason R. Hodges ◽  
Shannon M. Phillips ◽  
Sarah Norell ◽  
Chinonyelum Nwosu ◽  
Hamda Khan ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Care Providers ◽  
Constructivist Grounded Theory ◽  
Theory Approach ◽  
Care Providers ◽  
Cell Disease ◽  
Structured Interviews ◽  
Medication Nonadherence ◽  
Negative Perceptions

Abstract Hydroxyurea is an efficacious treatment for sickle cell disease (SCD), but adoption is low among individuals with SCD. The objective of this study was to examine barriers to patients’ adherence to hydroxyurea use regimens by using the intentional and unintentional medication nonadherence framework. We interviewed individuals with SCD age 15 to 49.9 years who were participants in the Sickle Cell Disease Implementation Consortium (SCDIC) Needs Assessment. The intentional and unintentional medication nonadherence framework explains barriers to using hydroxyurea and adds granularity to the understanding of medication adherence barriers unique to the SCD population. In total, 90 semi-structured interviews were completed across 5 of the 8 SCDIC sites. Among interviewed participants, 57.8% (n = 52) were currently taking hydroxyurea, 28.9% (n = 26) were former hydroxyurea users at the time of the interview, and 13.3% (n = 12) had never used hydroxyurea but were familiar with the medication. Using a constructivist grounded theory approach, we discovered important themes that contributed to nonadherence to hydroxyurea, which were categorized under unintentional (eg, Forgetfulness, External Influencers) and intentional (Negative Perceptions of Hydroxyurea, Aversion to Taking Any Medications) nonadherence types. Participants more frequently endorsed adherence barriers that fell into the unintentional nonadherence type (70%) vs intentional nonadherence type (30%). Results from this study will help SCD health care providers understand patient choices and decisions as being either unintentional or intentional, guide tailored clinical discussions regarding hydroxyurea therapy, and develop specific, more nuanced interventions to address nonadherence factors.

scholarly journals Neonatal Screening for Sickle Cell Disease in Belgium for More than 20 Years: An Experience for Comprehensive Care Improvement

2018 ◽  
Vol 4 (4) ◽  
pp. 37 ◽  
Author(s):  
Béatrice Gulbis ◽  
Phu-Quoc Lê ◽  
Olivier Ketelslegers ◽  
Marie-Françoise Dresse ◽  
Anne-Sophie Adam ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Care Providers ◽  
Neonatal Screening ◽  
Clinical Care ◽  
Care Providers ◽  
Cell Disease ◽  
Clinical Registry ◽  
Birth Prevalence ◽  
Screening Programs

Our previous results reported that compared to sickle cell patients who were not screened at birth, those who benefited from it had a lower incidence of a first bacteremia and a reduced number and days of hospitalizations. In this context, this article reviews the Belgian experience on neonatal screening for sickle cell disease (SCD). It gives an update on the two regional neonatal screening programs for SCD in Belgium and their impact on initiatives to improve clinical care for sickle cell patients. Neonatal screening in Brussels and Liège Regions began in 1994 and 2002, respectively. Compiled results for the 2009 to 2017 period demonstrated a birth prevalence of sickle cell disorder above 1:2000. In parallel, to improve clinical care, (1) a committee of health care providers dedicated to non-malignant hematological diseases has been created within the Belgian Haematology Society; (2) a clinical registry was implemented in 2008 and has been updated in 2018; (3) a plan of action has been proposed to the Belgian national health authority. To date, neonatal screening is not integrated into the respective Belgian regional neonatal screening programs, the ongoing initiatives in Brussels and Liège Regions are not any further funded and better management of the disease through the implementation of specific actions is not yet perceived as a public health priority in Belgium.

Health care utilization and expenditures for privately and publicly insured children with sickle cell disease in the United States

2009 ◽  
Vol 53 (4) ◽  
pp. 642-646 ◽  
Author(s):  
Mercy Mvundura ◽  
Djesika Amendah ◽  
Patricia L. Kavanagh ◽  
Philippa G. Sprinz ◽  
Scott D. Grosse
Keyword(s):  
United States ◽  
Health Care ◽  
Sickle Cell Disease ◽  
Health Care Utilization ◽  
Sickle Cell ◽  
The United States ◽  
Care Utilization ◽  
Cell Disease ◽  
Publicly Insured

scholarly journals Disease burden and quality of life of in children with sickle cell disease in Italy: time to be considered a priority

2021 ◽  
Vol 47 (1) ◽  
Author(s):  
Raffaella Colombatti ◽  
Maddalena Casale ◽  
Giovanna Russo
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Care Providers ◽  
Treatment Options ◽  
Care Providers ◽  
Cell Disease ◽  
Term Care ◽  
Social And Emotional

AbstractThe objective of the present article is to highlight the need for attention to Quality of Life of patients with Sickle Cell Disease living in Italy. The transformation of sickle cell disease from a severe life-threatening disease of childhood into a chronic, lifelong condition due to the significant improvements in care and treatment options, imposes increasing new challenges to health care providers and patients. Patients now face physical, psychosocial and emotional challenges throughout their lives. They generally have to receive chronic treatments and regular multidisciplinary monitoring which increase social and emotional burden rendering adherence to treatment sometimes complicated. A chronic disease impacts all aspects of patients’ lives, not only the physical one, but also the social and emotional aspects as well as the educational and working life. The entire “Quality of Life” is affected and recent evidence demonstrates the importance quality of life has for patients with chronic illness. The results of this review focus on emerging data regarding quality of life across the lifespan of patients with Sickle Cell Disease, and highlight the need for more action in this field in Italy, where recent immigration and improved care determine an increasing population of children with sickle cell disease being taken into long term care.

scholarly journals Level of utilization and provider-related barriers to the use of hydroxyurea in the treatment of sickle cell disease patients in Jos, North-Central Nigeria

2021 ◽  
Vol 21 (2) ◽  
pp. 765-774
Author(s):  
Akinyemi OD Ofakunrin ◽  
Edache S Okpe ◽  
Tolulope O Afolaranmi ◽  
Rasaq R Olaosebikan ◽  
Patience U Kanhu ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Care Providers ◽  
Clinical Guidelines ◽  
Cross Sectional Study ◽  
Medical Doctors ◽  
Care Providers ◽  
Cell Disease ◽  
Cross Sectional ◽  
North Central

Background: Hydroxyurea is underutilized by sickle cell health-care providers in Nigeria despite available evidence of its effectiveness in reducing the manifestations and complications of sickle cell disease (SCD). Objectives: To assess the level of utilization and provider-related barriers to the use of hydroxyurea in SCD therapy in Jos, Nigeria. Methods: A cross-sectional study conducted among 132 medical doctors providing care for SCD patients. Data on so- cio-demographics, utilization and barriers to hydroxyurea use were obtained. The barriers were fed cumulatively into the logistic regression model as predictors of utilization. Results: Of the 132 care providers, 88 (67%) had been in medical practice for ≥6years. The level of utilization of hy- droxyurea was 24.2%. The significant barriers that predicted the non-utilization of hydroxyurea included lack of expertise (OR=5.1; 95% CI=2.65–9.05), lack of clinical guidelines (OR=3.84; 95% CI=2.37-14.33), fear of side-effects (OR=0.50; 95% CI=0.22–0.68) and doubt about its effectiveness (OR=0.30; 95% CI=0.20–0.90). Conclusion: The level of utilization of hydroxyurea in the treatment of SCD among the care providers is sub-optimal with the lack of expertise in its use identified as the most prominent barrier. There is an urgent need for the training of sickle cell care-providers and the development of clinical guidelines on hydroxyurea use. Keywords: Hydroxyurea utilization; barriers to hydroxyurea; sickle cell disease; Nigeria.

scholarly journals Neurologic complications of sickle cell disease in Africa

Neurology ◽  
2017 ◽  
Vol 89 (14) ◽  
pp. 1516-1524 ◽  
Author(s):  
Jean Jacques Noubiap ◽  
Michel K. Mengnjo ◽  
Nicolas Nicastro ◽  
Joseph Kamtchum-Tatuene
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Care Providers ◽  
Diagnostic Tools ◽  
Screening Methods ◽  
Neurologic Complications ◽  
Care Providers ◽  
Neurocognitive Deficits ◽  
Cell Disease ◽  
Methodologic Quality

Objective:To summarize prevalence data on the neurologic complications of sickle cell disease (SCD) in Africa.Methods:We searched EMBASE, PubMed, and African Index Medicus to identify all relevant articles published from inception to May 31, 2016. Each study was reviewed for methodologic quality. A random-effects model was used to estimate the prevalence of neurologic complications of SCD across studies.Results:Thirty-one studies were included. Methodologic quality was high or moderate in 90% of studies. Stroke, conditional and abnormal cerebral blood flow, seizures, and headache were the complications most frequently reported, with overall prevalence rates of 4.2%, 10.6%, 6.1%, 4.4%, and 18.9%, respectively. Some complications, like silent brain infarcts, peripheral neuropathies, neurocognitive deficits, or moyamoya disease, have been rarely or not studied at all in the African setting. Incidence data were scarce and of poor quality.Conclusions:The burden of neurologic complications of SCD is important in Africa and most likely underestimated. A better evaluation of this burden requires larger prospective studies using standard up-to-date screening methods. Accessibility to diagnostic tools such as neuroimaging, transcranial Doppler, EEG, and neuropsychological evaluation, as well as to preventive and therapeutic interventions and trained health care providers, should be improved in routine clinical practice.

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