Sickle Cell News Round-Up

ATLANTA -  Sickle Cell Day Unit at Feist-Weiller Cancer Center in Shreveport LA  Provides Emergency Room Alternative http://www.feistweiller.org/index.php?src=gendocs&ref=Sickle_Cell_Unit&category=Patient_Care

A new three-bed day unit developed to care for sickle cell patients experiencing pain crises has been established at the Feist-Weiller Cancer Center (FWCC) outpatient building at LSU Health Shreveport and was formally dedicated Thursday, Jan. 20.

 The eighth such facility in the country designed to provide sickle cell patients a dedicated unit as an Emergency Room alternative, the FWCC unit will be staffed Monday-Friday from 8 a.m. to 4:30 p.m. Nights, weekends and holidays patients in sickle cell crisis will go to the LSU Hospital emergency room for care.

 Nebu Koshy, MD, Assistant Professor of Medicine, is medical director for the unit and Jennifer Angelo, MPAS, PA-C, is clinical coordinator.

 Patients receiving care in dedicated sickle cell facilities like the one recently established at FWCC have been found to have better experiences and can often control the pain crisis through day visits. 

New Sickle Cell Center coming to Bahrain

http://www.gulf-daily-news.com/NewsDetails.aspx?storyid=296414

A LONG-AWAITED centre for genetic blood disorders will be able to treat more than 14,000 patients once it opens its doors next year, it was declared yesterday.

The foundation stone of the new haematology centre was laid yesterday at Salmaniya Medical Complex (SMC). All patients suffering from sickle cell and other blood diseases will be treated at the BD2.5 million facility and will not require visiting the SMC's Accident and Emergency Department.

"This centre is like a mini-hospital with an emergency department as well as wards for men, women and children," said Health Minister Dr Faisal Al Hamer. "We are building this centre of excellence with 90 beds for patients suffering from blood diseases.

"This is a major milestone as there will be a dedicated facility for about 14,000 sickle cell disease patients as well as others."

Education of Minority Ethnic Pupils: Young People with Sickle Cell Disease - A project to examine the issues facing young people at school who live with sickle cell disorder  -   funded by the Economic and Social Research Council (Grant Number RES-000-23-1486) and ran from 2006 to 2011.

Project Summary - Sickle cell disease (SCD) is the collective name for a number of inherited blood conditions that mainly affect people of African, Caribbean, Middle Eastern, South Asian, and Mediterranean descent. Clinical manifestations include episodes of chronic and acute pain, and strokes. The known number of people living with SCD will increase from the current estimate of 15,000 over the next decade as all newborn infants and most pregnant mothers will be screened for SCD. Prior to this research little was known about the impact of sickle cell on the educational experiences of young people. Read the full report at  http://www.dmu.ac.uk/research/sickle-cell/research-evidence.jsp

Excellent Education materials available at : http://www.dmu.ac.uk/research/sickle-cell/

Sickle cell disease still deadly despite advances in medicine http://www.businessdailyafrica.com/Sickle%20cell%20disease%20still%20deadly%20despite%20advances%20in%20medicine/-/539444/1083592/-/vlbehn/-/

A century after the drawing of an anaemic patient’s sickle-shaped red blood cells came out of Chicago in the USA —a sketch that officially placed this still pervasive genetic disorder into medical books — confusion, discrimination and lack of treatment continue to surround sickle cell disease (SCD), especially in Africa where more than 200,000 babies are born every year with the disease.

“Sickle cell is a true public health problem with medical, human and social dimensions,” Oumar Ibrahima Touré, Mali’s health minister until earlier this month, told IRIN.

Despite advances in treatment and research over the past century, SCD is still largely undiagnosed in the world’s most affected areas where the problem is too complex for any quick-fix solutions, researchers say. And without treatment there is a 50 percent chance a sickle cell patient will die before the age of five, most commonly of a blood infection.

For its impact on lives and livelihoods, SCD has been deemed a “threat to the economic and social development of Africa” by the West Africa-based Federation of Associations Combating Sickle Cell Disorder in Africa (FALDA).

New "Fact Sheet" For School Staff Developed By Minnesota Children's Staff With Minnesota Department Of Education

: The "Other Health Disabilities" Coordinators from Minnesota Department of Education, Ms. Barbara Sisco and Ms. Joan Breslin-Larson, met together with Dr. Karen Wills, Ph.D., neuropsychologist for the Children's Hospital Sickle Cell Disease Program; Ms. Judi Azar, Physical and Other Health Impaired Coordinator for Minneapolis Schools; and Ms. Diane Graham, School Nurse; to redesign the state's "Fact Sheet" used by school personnel when developing educational and nursing care plans for children with sickle cell disease. The newly published Fact Sheet can be used to help teachers, school nurses, and other school personnel understand the needs of a child with sickle cell disease.  It can be accessed here:

http://education.state.mn.us/mdeprod/groups/SpecialEd/documents/Publication/019066.pdf

  New Article On Neuropsychological Assessment For Children With Sickle Cell Disease:  The "Scd-Plane" (Sickle Cell Disease Program for Learning and Neuropsychological Evaluation) at Children's Hospitals and Clinics of Minnesota is described in a special supplement to the journal, "Pediatrics" (available online at http://pediatrics.aappublications.org/cgi/content/full/126/Supplement_3/S151 or, the full citation for access from library services is Wills KE, Nelson SC, Hennessy J, Nwaneri MO, Miskowiec J, McDonough E, Moquist K. Transition planning for youth with sickle cell disease: embedding neuropsychological assessment into comprehensive care. Pediatrics. 2010 Dec;126 Suppl 3:S151-9. PubMed PMID: 21123479.

Here is the abstract:

 Transition Planning for Youth With Sickle Cell Disease: Embedding Neuropsychological Assessment Into Comprehensive Care

> Karen E. Wills, PhD(a), Stephen C. Nelson, MD(a), Jane Hennessy, RN, CPNP(a), M. Osita Nwaneri, MD(b), Joyce Miskowiec, BA(a), Elizabeth McDonough, RN(a), Kristin Moquist, RN, CPNP(a)

> 

OBJECTIVE : Sickle cell disease (SCD) conveys a high risk of neuropsychological impairment due to chronic anemia, hypoxemia, cerebrovascular ischemia and stroke, in addition to causing pain and other biomedical complications. Few families accessed neuropsychological testing via the traditional referral system. In this paper, we describe a successful alternative strategy for addressing cognitive and behavioral needs of youth with SCD.

METHOD : The Sickle Cell Disease Program for Learning and Neuropsychological Evaluation (SCD-PLANE) was embedded in 2007 into the SCD Comprehensive Clinic of Children's Hospitals and Clinics of Minnesota. SCD-PLANE includes brief neuropsychological testing, individualized recommendations, patient education and advocacy, interdisciplinary collaboration, and follow-through to assure patients' access to recommended resources. The purpose of SCD-PLANE is to identify and recommend interventions for cognitive, academic, emotional, behavioral, or social problems affecting child development and transition to adulthood.

 RESULTS : Access to neuropsychological testing improved dramatically and is well accepted by SCD patients and families. Test results reveal increased risk of problems with executive function, speed of processing, graphomotor function, academic achievement, and parent-reported anxious/depressed symptoms, despite normal intelligence and language abilities. Patients' needs had not been previously identified or served by schools or other community agencies.

CONCLUSIONS : The SCD-PLANE, providing brief neuropsychological testing embedded within routine annual visits to SCD Comprehensive Clinic, is an effective approach to detect unmet developmental, educational, and behavioral needs within an underserved high-risk population. As youth move towards adulthood, considering cognitive, academic, and mental health status facilitates successful health care transitions.

New Article: Comparing Abstract Numerical and Visual Depictions of Risk in Survey of Parental Assessment of Risk in Sickle Cell Hydroxyurea Treatment

Patterson, Chavis A. PhD^*,†; Barakat, Lamia P. PhD^‡; Henderson, Phyllis K. LCSW^*,†; Nall, Faith BA^*; Westin, Anna MS^§; Dampier, Carlton D. MD^{∥}; Hsu, Lewis L. MD, PhD Journal of Pediatric Hematology/Oncology: January 2011 - Volume 33 - Issue 1 - p 4–9

Abstract Communicating risk is an important activity in medical decision-making; yet, numeracy is not a universal skill among the American public. We examined the hypothesis that numerical risk information about the use of hydroxyurea for children with sickle cell disease would elicit different risk assessment responses when visual depictions were used instead of abstract numbers and depending on the disease severity. Parents of 81 children with sickle cell disease participated in a survey in which hydroxyurea was first described as carrying a certain chance of risk for both birth defects and cancer. Then, the parents indicated the highest risk at which they would hypothetically consent to the treatment to help their child. Risk presentations were repeated with abstract numerical, pie graph, and 1000 people histogram formats. The χ² analyses comparing high-risk to low-risk assessment across presentation formats showed high consistency between visual depictions but low consistency of abstract numerical with visual depictions. The parents of children with SC and other less severe types of SCD were less willing to accept higher risk than those with SS when the data were presented numerically. Given earlier concerns about poor “numeracy” in the US population, visual depictions of risk could be an effective tool for routine communication in health education and medical decision-making.

 News from the CDC –The Division of Blood Disorders

Fellow colleagues, you are invited to participate in the

“Public Health Webinar Series on Hemoglobinopathies”

Hosted by: The Division of Blood Disorders, CDC

4^th Thursday of every month from 2:00PM – 3:00PM EST

The purpose of this webinar series is to offer a hemoglobinopathies

learning collaborative platform for providers, consumers, educators, and scientists.

This month’s webinar will take place on Thursday January 27^th from 2:00pm – 3:00pm EST, featuring

Dr. Simon Dyson’s presentation on “Sickle Cell Disease and Education”

Please forward this announcement to other interested collaborators. 

To Join The Webinar

Copy this address and paste it into your web browser: https://www.livemeeting.com/cc/cdc/join

Copy and paste the required meeting ID: 84QK2D and click “join”.

First Time Users: To save time before the meeting, check your system to make sure it is ready to use Microsoft Office Live Meeting.

 For Audio

Dial 1-877-953-6706 and enter participant code: 9706616

If you are unable to join us on the internet for viewing, you are welcome to call in for audio access only.

Participants outside the United States must be able to access 800 numbers to the US. Otherwise, please RSVP the location and number of participants for alternative international conference line access.

 Hemoglobinopathies Webinar Schedule 2011

1/27: Sickle Cell Disease and Education

Dr. Simon Dyson, De Montfort University

 2/24: --- No Webinar This Month ---

 3/24: Iron overload in Children with Sickle Cell Disease

Dr. Tom Adamkiewicz, Morehouse College School of Medicine

 4/28: New Born Screening Engagement with the Community

Dr. Allyson Streetly, King’s College London

 5/26: Vitamin Deficiency and Sickle Cell Disease

Dr. Ifeyinwa Osunkwo, Children’s Healthcare of Atlanta

 6/23: Transfusion Issues for Sickle Cell Disease and Thalassemia Patients

Dr. Rebecca Kruse-Jarres, Tulane University School of Medicine

 7/28: Administrative Data Sets

Dr. Scott Grosse, CDC Division of Blood Disorders

 8/25: Emerging Pathogens and Blood Safety for Transfused Populations

Sean Trimble MPH, CDC Division of Blood Disorders

If you have ideas on topics for future webinars, or have any questions or comments about this series please submit them to Shae Pope spope@cdc.gov.

To subscribe to the CDC Blood Disorders List Serv: