scholarly journals Health-care providers’ views on pursuing reproductive benefit through newborn screening: the case of sickle cell disorders

2011 ◽  
Vol 20 (5) ◽  
pp. 498-504 ◽  
Author(s):  
Yvonne Bombard ◽  
Fiona A Miller ◽  
Robin Z Hayeems ◽  
Brenda J Wilson ◽  
June C Carroll ◽  
...  
Keyword(s):  
Health Care ◽  
Newborn Screening ◽  
Sickle Cell ◽  
Health Care Providers ◽  
Care Providers ◽  
Sickle Cell Disorders

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 Developmental and Behavioral Pediatricians' Attitudes Toward Screening for Fragile X

2013 ◽  
Vol 118 (4) ◽  
pp. 284-293 ◽  
Author(s):  
Kruti Acharya ◽  
Abigail Schindler
Keyword(s):  
Health Care ◽  
Newborn Screening ◽  
Fragile X Syndrome ◽  
Health Care Providers ◽  
Response Rate ◽  
Fragile X ◽  
Educational Interventions ◽  
Care Providers ◽  
Cross Sectional Survey ◽  
Cross Sectional

Abstract Developmental and behavioral pediatricians (DBP) diagnose and care for children with fragile X syndrome. Their attitudes toward FMR1 newborn screening (NBS) and FMR1 carrier testing in childhood could highlight potential pitfalls with FMR1 NBS. We conducted a cross-sectional survey with an adjusted response rate of 61%. Among DBP, 74% supported universal FMR1 NBS, preferring to identify both full mutations and premutations. DBP also support FMR1 testing of asymptomatic siblings. Although DBP support testing for premutations at various points in the lifespan, DBP are not familiar with the array of fragile X–associated disorders (FXAD). Targeted educational interventions are needed to ensure that all health care providers have the knowledge and competence to consent and to counsel families on FXAD.

Consent for Newborn Screening: The Attitudes of Health Care Providers

2010 ◽  
Vol 13 (3) ◽  
pp. 181-190 ◽  
Author(s):  
F.A. Miller ◽  
R.Z. Hayeems ◽  
J.C. Carroll ◽  
B. Wilson ◽  
J. Little ◽  
...  
Keyword(s):  
Health Care ◽  
Newborn Screening ◽  
Health Care Providers ◽  
Care Providers

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 Health-care providers’ perspectives on uncertainty generated by variant forms of newborn screening targets

2019 ◽  
Vol 22 (3) ◽  
pp. 566-573 ◽  
Author(s):  
Paul J. Azzopardi ◽  
Ross E. G. Upshur ◽  
Stephanie Luca ◽  
Viji Venkataramanan ◽  
Beth K. Potter ◽  
...  
Keyword(s):  
Health Care ◽  
Newborn Screening ◽  
Health Care Providers ◽  
Care Providers

scholarly journals Incidental Findings of Sickle Cell Trait From an Everyday Diabetes Test: Should General Health Care Providers and Testing Centers Report, Retest, or Refer?

2019 ◽  
Vol 38 (1) ◽  
pp. 101-107
Author(s):  
Anna Cronin de Chavez ◽  
Karl M. Atkin ◽  
Fiona Babbington ◽  
Maria J. Berghs ◽  
Simon M. Dyson ◽  
...  
Keyword(s):  
Health Care ◽  
Sickle Cell ◽  
Health Care Providers ◽  
General Health ◽  
Incidental Findings ◽  
Sickle Cell Trait ◽  
Care Providers

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 Understanding the health-care experiences of people with sickle cell disorder transitioning from paediatric to adult services: This Sickle Cell Life, a longitudinal qualitative study

2020 ◽  
Vol 8 (44) ◽  
pp. 1-94
Author(s):  
Alicia Renedo ◽  
Sam Miles ◽  
Subarna Chakravorty ◽  
Andrea Leigh ◽  
John O Warner ◽  
...  
Keyword(s):  
Health Care ◽  
Young People ◽  
Sickle Cell ◽  
Health Care Providers ◽  
Care Staff ◽  
Health Care Staff ◽  
Care Providers ◽  
Specialist Services ◽  
Specialist Health Care ◽  
Cell Disorder

Background Transitions from paediatric to adult health-care services cause problems worldwide, particularly for young people with long-term conditions. Sickle cell disorder brings particular challenges needing urgent action. Objectives Understand health-care transitions of young people with sickle cell disorder and how these interact with broader transitions to adulthood to improve services and support. Methods We used a longitudinal design in two English cities. Data collection included 80 qualitative interviews with young people (aged 13–21 years) with sickle cell disorder. We conducted 27 one-off interviews and 53 repeat interviews (i.e. interviews conducted two or three times over 18 months) with 48 participants (30 females and 18 males). We additionally interviewed 10 sickle cell disease specialist health-care providers. We used an inductive approach to analysis and co-produced the study with patients and carers. Results Key challenges relate to young people’s voices being ignored. Participants reported that their knowledge of sickle cell disorder and their own needs are disregarded in hospital settings, in school and by peers. Outside specialist services, health-care staff refuse to recognise patient expertise, reducing patients’ say in decisions about their own care, particularly during unplanned care in accident and emergency departments and on general hospital wards. Participants told us that in transitioning to adult care they came to realise that sickle cell disorder is poorly understood by non-specialist health-care providers. As a result, participants said that they lack trust in staff’s ability to treat them correctly and that they try to avoid hospital. Participants reported that they try to manage painful episodes at home, knowing that this is risky. Participants described engaging in social silencing (i.e. reluctance to talk about and disclose their condition for fear that others will not listen or will not understand) outside hospital; for instance, they would avoid mentioning cell sickle disorder to explain fatigue. Their self-management tactics include internalising their illness experiences, for instance by concealing pain to protect others from worrying. Participants find that working to stay healthy is difficult to reconcile with developing identities to meet adult life goals. Participants have to engage in relentless self-disciplining when trying to achieve educational goals, yet working hard is incompatible with being a ‘good adult patient’ because it can be risky for health. Participants reported that they struggle to reconcile these conflicting demands. Limitations Our findings are derived from interviews with a group of young people in England and reflect what they told us (influenced by how they perceived us). We do not claim to represent all young people with sickle cell disorder. Conclusions Our findings reveal poor care for young people with sickle cell disorder outside specialist services. To improve this, it is vital to engage with young people as experts in their own condition, recognise the legitimacy of their voices and train non-specialist hospital staff in sickle cell disorder care. Young people must be supported both in and outside health-care settings to develop identities that can help them to achieve life goals. Future work Future work should include research into the understanding and perceptions of sickle cell disease among non-specialist health-care staff to inform future training. Whole-school interventions should be developed and evaluated to increase sickle cell disorder awareness. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 44. See the NIHR Journals Library website for further project information.

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