The Sickle Cell Awareness Group of Ontario (SCAGO) invites you to its World Sickle Cell Day (June 19) Events
What: World Sickle Cell Awareness Day Celebrations Where: 1st Floor, Hollywood Daniels Theatre (Rm 1246, Black Wing) 1st Floor, Rotunda (adjacent to Black Wing Elevators). The Hospital for Sick Children. 555 University Avenue. Toronto, ON.When: 12 PM-1:30 PM
We are also pleased to showcase some of the proclamations and illumination activities planned for June 19th in the province of Ontario as follows
City of Mississauga:Lighting the clock tower red and white from 8 p.m. Posting on the Community Recognition Calendar (Link: http://www.mississauga.ca/portal/cityhall/community-recognition-calendar) Displaying promotional messaging on digital screens at Celebration Square Social Media messages on the City’s Twitter account
City of Newmarket: Lighting: Riverwalk Commons and Fred A. Lundy Bridge (red): sunset to 11pm. Proclamation Advertised on the Town’s Section in the Newmarket Era newspaper. Social Media message on the City’s Twitter account .Town’s Website: Proclamation and Lighting.
City of Brampton: Lighting: Clock Tower
City of Sudbury:Proclamation at 10am by the Mayor
City of London: Buildings and Amenities (red and white) City Hall, JA Taylor Building, Fountain at the Forks. London Life.
City of Ottawa: Proclamation by the Mayor
City of Toronto: City Hall
CN Tower:Lighting (Red and White)
Niagara Falls: Lighting Show: 10:00 – 10:15pm.
Social Media Message: Reduce the number of unplanned sickle cell births; Join @scago1 to reach six people with the #EachReachSix to #gettested; for #sicklecelltrait; on #June19 as we celebrate the #WorldSickleCellDay 2019.www.sicklecellanemia.ca
Five nonprofit organizations to receive up to $250,000 through Novartis STEP Program™ to support sickle cell patient initiatives
- The Solutions to Empower Patients (STEP) Program™ continues to help nonprofit organizations deliver new solutions to address unmet patient needs
- This year’s focus is on addressing some of the most pressing issues in the sickle cell disease (SCD) community
EAST HANOVER, N.J., May 16, 2019 /PRNewswire/ — Novartis today announced that five nonprofit organizations will receive a total of nearly $250,000 in funding through the company’s STEP (Solutions to Empower Patients) Program™. Now in its second year, the STEP Program supports nonprofit organizations by funding innovative programs that empower patients with significant unmet needs to navigate a path to better care. This year’s focus is on addressing some of the most pressing issues in the sickle cell disease (SCD) community.
“People with sickle cell disease continue to face significant gaps in care which can be detrimental to their physical health and overall well-being,” said Ameet Mallik, Executive Vice President and Head, US, Novartis Oncology. “Through the STEP Program, we aim to help make a difference in these patients’ lives by supporting innovative programs developed by organizations in the best position to tackle these challenges.”
This year’s funding recipients will work to address these difficulties by encouraging self-advocacy, providing resources to help SCD patients better navigate the healthcare system, and supporting patients as they transition from pediatric to adult care. The diverse group of recipient organizations includes patient advocacy groups and research institutions, representing the broad impact of this disease.
The organizations and innovative SCD initiatives include:
- All One Blood’s commercial campaign series, which will reveal powerful stories and conversations with those living with SCD.
- Children’s Research Institute’s INSERTT (ImproviNg SicklE TRansition Through Telemedicine) study, which will evaluate the impact of telemedicine on improving health outcomes for SCD patients as they transition to adult care.
- Sickle Cell 101’s FACTSS (FAcilitating Communication BeTween PatientS and ProviderS) program, which will provide patients with a digital toolkit containing customized communications strategies.
- The Sickle Cell Foundation of Georgia, Inc., which will host interactive workshops to provide adolescents with tools to successfully transition from pediatric to adult health care.
- The Georgia Health Policy Center at Georgia State University, which will create educational videos to help patients and caregivers understand the benefits and potential complications of therapeutic blood transfusions.
Proposals were evaluated by an external review committee made up of experts in the fields of advocacy, psycho-social support and multi-cultural health, as well as an SCD practitioner and patient.
“The volume, breadth and quality of the proposals we received this year speaks to the deep need within this community to remove the hurdles people with sickle cell disease face every day,” said Charles Jonassaint, PhD, MHS, Assistant Professor of Medicine, Social Work, and Clinical & Translational Sciences at University of Pittsburgh and a member of the STEP Program external review committee. “It was inspiring to see the passion of so many organizations dedicated to improving the lives of those impacted by the disease, and on behalf of the entire review committee, we congratulate the five recipients. We look forward to seeing the impact their initiatives have on the lives of patients and their families.”
New Coloring Book
I have created an Educational Coloring book for children with Sickle Cell Disease titled “The Bear Necessities of Sickle Cell” to print or rebrand free!! Author:
Donna M. Doulton, RN
UT Health, San Antonio
Pediatric Hematology/Oncology Division
South Texas Sickle Cell Center
Scholarships Available for Individuals Living With SCD Apply by July 1
The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) has established a competitive college scholarship program to assist students with sickle cell disease (SCD) who will be attending an institution of higher learning in the United States. IASCNAPA plans to distribute four $1,000 scholarships this year. Applicants must have a form of SCD and be enrolled in, or have been accepted by, a recognized and accredited post-secondary school, including college, university, trade school, or other institution of higher learning. Applications are currently being accepted through July 1. IASCNAPA has two scholarship funds: The Steven Christy Scholarship Fund and the Christine A. Johnson Scholarship Fund. Steven Christy was a Caucasian male who lived with sickle cell disease and struggled with disease stereotypes throughout his life. He valued education and struggled to complete college, but persevered and graduated from Fitchburg State University. He spent his career helping others – first as a social worker at Favarh (a center to help people with developmental and intellectual disabilities integrate into the community), and then as a counselor and coordinator of newborn hemoglobinopathy screening programs at the combined UCONN/St. Francis sickle cell clinic. His family founded the scholarship in his honor. Dr. Christine A Johnson earned her medical degree in 1964 from Tufts University School of Medicine in Boston, MA. She was a provider and advocate for people with sickle cell disease for most of her adult career. She was the founder and Director of the Pediatric Sickle Cell Program at Wake Forest Baptist Medical Center, and an advocate for people with sickle cell disease for more than 30 years. She excelled in teaching and patient care. She had a tireless work ethic and was admired by all. Her co-workers founded the scholarship in her honor. For more information, to contribute to the scholarship fund, or to apply for a scholarship, go to www.iascnapa.org.
Articles in the medical literature
|1.||Clin Pediatr (Phila). 2019 May 21:9922819850476. doi: 10.1177/0009922819850476. [Epub ahead of print]Hydroxyurea Initiation Among Children With Sickle Cell Anemia.Reeves SL1, Jary HK1, Gondhi JP1, Raphael JL2, Lisabeth LD1, Dombkowski KJ1.AbstractThis study assesses characteristics of children with sickle cell anemia associated with hydroxyurea initiation. Medicaid administrative claims from 6 states (2005-2012) were used to identify children with sickle cell anemia enrolled in Medicaid for ≥2 years. Hydroxyurea use was defined as >30 days’ supply of filled prescriptions. Children were classified as initiators (no use in year 1; use in year 2) or nonusers (no use in either year). Logistic regression was used to estimate associations between initiation, health care encounters, and demographics. A total of 4435 children were enrolled for 2 years during the study period; 885 (20.0%) initiators and 3080 (69.4%) nonusers. Children had an annual mean of 2.0 sickle cell disease-related inpatient admissions (SD = 2.2), 8.2 sickle cell disease-related outpatient visits (SD = 7.2), and 3.6 emergency department visits (SD = 3.5). The odds of initiating hydroxyurea increased with increasing health care utilization, age, and calendar year (all P values <.05).|
|2.||Acta Haematol. 2019 May 20:1-6. doi: 10.1159/000500223. [Epub ahead of print]Decreased Bleeding Incidence with Direct Oral Anticoagulants Compared to Vitamin K Antagonist and Low-Molecular-Weight Heparin in Patients with Sickle Cell Disease and Venous Thromboembolism.Patel A1, Williams H2, Baer MR3,4, Zimrin AB3,4, Law JY3,4.AbstractBACKGROUND:Venous thromboembolism (VTE) is a recognized complication of sickle cell disease (SCD), yet the optimal pharmacologic anticoagulant is unknown.METHODS:A retrospective single-institution cohort study of patients with SCD complicated by first VTE from January 2009 through July 2017 was performed using ICD 9/10 codes. Data collected included the anticoagulant used, VTE recurrence, and incidence of bleeding.RESULTS:109 patients with VTE were identified. SCD genotypes included HbSS in 92 (84%), HbSC in 13 (12%), and HbS-β+ thalassemia in 4 (4%). After the initial VTE event, 32 patients received a vitamin K antagonist (VKA), 34 for low-molecular-weight heparin (LMWH), and 43 for direct oral anticoagulants (DOACs). 16 patients (15%) experienced a clinically significant bleeding event, including 9 on VKA, 5 on LMWH, and 2 on DOACs. At a median follow-up of 11.8 (range, 3.4-60) months, 33 patients had a recurrent VTE, including 10 on VKA, 10 on LMWH, and 13 on DOACs (p = 0.833). Bleeding incidence was least with the DOACs, which were associated with fewer bleeding events (OR 0.22), and greatest with VKA (OR 1.55) (p < 0.05).CONCLUSION:There was no difference between VTE recurrence and choice of anticoagulation in SCD patients with VTE. Bleeding events were lower for DOACs compared to VKA or LMWH.© 2019 S. Karger AG, Basel.|
|3.||PLoS One. 2019 May 20;14(5):e0216994. doi: 10.1371/journal.pone.0216994. eCollection 2019.Chronic pain in adults with sickle cell disease is associated with alterations in functional connectivity of the brain.Karafin MS1,2, Chen G3, Wandersee NJ1, Brandow AM4, Hurley RW5, Simpson P6, Ward D3, Li SJ3, Field JJ1,4.AbstractChronic pain affects 50% of adults with sickle cell disease (SCD). Although central sensitization is thought to contribute to the pathogenesis of this chronic pain, no studies have examined differences in functional connectivity of the brain between patients with SCD with and without chronic pain. We performed an observational cohort study using resting-state functional MRI (rsfMRI) of the brain on adults with SCD with and without chronic pain. We tested the hypothesis that, compared to those without chronic pain, those with chronic pain would have differences in functional connectivity between the periaqueductal grey (PAG) and other regions of the brain. Twenty-two adults with SCD, 15 with chronic pain and 7 without chronic pain, as well as 10 African-American controls, underwent rsfMRI of the brain. When SCD patients with chronic pain were compared to those without chronic pain, significant differences in connectivity were noted between the PAG and 9 regions of the brain, including several in the default mode network, a network involved in introspection that has been implicated in other chronic pain syndromes. Changes in functional connectivity between patients with SCD with and without chronic pain suggest a mechanism for chronic pain that involves neuro-plastic changes to the brain.Free Article|
|4.||Am J Hematol. 2019 May 20. doi: 10.1002/ajh.25510. [Epub ahead of print]Robust Clinical and Laboratory Response to Hydroxyurea Using Pharmacokinetically Guided Dosing for Young Children with Sickle Cell Anemia.McGann PT1,2, Niss O1,2, Dong M2,3, Marahatta A1, Howard T1, Mizuno T3, Lane A1,2, Kalfa TA1,2, Malik P1,2, Quinn CT1,2, Ware RE1,2, Vinks AA2,3.AbstractHydroxyurea is FDA-approved and now increasingly used for children with sickle cell anemia (SCA), but dosing strategies, pharmacokinetic (PK) profiles, and treatment responses for individual patients are highly variable. Typical weight-based dosing with step-wise escalation to maximum tolerated dose (MTD) leads to predictable laboratory and clinical benefits, but often takes 6-12 months to achieve. The Therapeutic Response Evaluation and Adherence Trial (TREAT,NCT02286154) was a single-center study designed to prospectively validate a novel personalized PK-guided hydroxyurea dosing strategy with a primary endpoint of time to MTD. Enrolled participants received a single oral 20 mg/kg dose of hydroxyurea, followed by a sparse PK sampling approach with 3 samples collected over three hours; analysis of individual PK data into a population PK model generated a starting dose that targets the MTD. The TREAT cohort (n=50) was young, starting hydroxyurea at a median age of 11 months (IQR 9-26 months), and PK-guided starting doses were high (27.7 ± 4.9 mg/kg/day). Time to MTD was 4.8 months (IQR 3.3-9.3), significantly shorter than comparison studies, thus meeting the primary endpoint. More remarkably, the laboratory response for participants starting with a PK-guided dose were quite robust, achieving higher hemoglobin (10.1 ± 1.3 g/dL) and HbF (33.3 ± 9.1%) levels than traditional dosing. Though higher than traditional dosing, PK-guided doses were safe without excess hematologic toxicities. Our data suggest early initiation of hydroxyurea using a personalized dosing strategy for children with SCA provides laboratory and clinical response beyond what has been seen historically with traditional, weight-based dosing. This article is protected by copyright. All rights reserved.This article is protected by copyright. All rights reserved.|
|5.||Glob Pediatr Health. 2019 May 3;6:2333794X19847026. doi: 10.1177/2333794X19847026. eCollection 2019.Barriers to Pediatric Sickle Cell Disease Guideline Recommendations.Cabana MD1,2, Kanter J3, Marsh AM4, Treadwell MJ1,4, Rowland M1,4, Stemmler P5, Bardach NS1,2.AbstractNational guidelines recommend that providers counsel all patients with sickle cell anemia about hydroxyurea (HU) therapy and screen children with sickle cell anemia annually for the risk of stroke with transcranial Doppler (TCD). We surveyed a national convenience sample of sickle cell disease clinicians to assess factors associated with low adherence. Adherence was 46% for TCD screening. Low adherence was associated with a lack of outcome expectancy (eg, a belief that there would be poor patient follow-up to TCD testing; P < .05). Adherence was 72% for HU counseling. Practice barriers (eg, lack of support staff or time) and a lack of agreement with HU recommendations were associated with low adherence (P < .05). This study demonstrates that different types of strategies are needed to improve TCD screening (to address follow-up and access to testing) versus HU counseling (to address physician agreement and practice barriers).PMCID: PMC6501475 Free PMC Article|
|6.||Haematologica. 2019 May 16. pii: haematol.2018.213207. doi: 10.3324/haematol.2018.213207. [Epub ahead of print]Long-term event-free survival, chimerism and fertility outcomes in 234 patients with sickle-cell anemia younger than 30 years after myeloablative conditioning and matched-sibling transplantation in France.Bernaudin F1, Dalle JH2, Bories D3, Peffault de Latour R4, Robin M4, Bertrand Y5, Pondarre C6, Vannier JP7, Neven B8,Kuentz M9, Maury S9, Lutz P10, Paillard C10, Yakouben K11, Thuret I12, Galambrun C12, Dhedin N13, Jubert C14,Rohrlich P15, Bay JO16, Suarez F17, Raus N18, Vernant JP19, Gluckman E20, Poirot C21, Socié G4; Société Française de Greffe de Moelle et de Thérapie Cellulaire.AbstractAllogeneic stem cell transplantation remains the only curative treatment for sickle-cell anemia, but the place of myeloablative conditioning remains to be defined. The aim of the present study was to analyze long-term outcomes, including chimerism, sickle-cell anemia-related events and biological data (hemoglobin, reticulocytes, HbS%), and fertility, in a French series of 234 SCA-patients younger than 30 years who received (1988-2012) a matched-sibling-donor stem cell transplantation following standardized myeloablative conditioning (Busulfan, Cyclophosphamide and rabbit anti-thymocyte globulin). Since the first report of the series (1988-2004), 151 new consecutive patients with sickle-cell anemia were similarly transplanted. Considering death, non-engraftment or rejection (donor cells<5%) as events, the 5-year event-free survival was 97.9% (95% confidence interval:95.5-100%), confirming at least 95% chance of cure since year 2000. In the overall cohort (n=234, median follow-up of 7.9 years), event-free survival was not associated with age, but chronic-graft-vs-host disease was independently associated with recipien’s age>15 (hazard ratio=4.37,P=0.002) and lower (5-15 vs 20 mg/kg) anti-thymocyte globulin dose (hazard ratio=4.55,P=0.001). At one year, 44% of patients had mixed chimerism (5-95% donor cells), but those prepared with anti-thymocyte globulin had no graft rejection. No events related to sickle cell anemia occurred in patients with mixed chimerism, even those with 15-20% donor cells, but hemolytic anemia stigmata were observed with donor cells<50%. Currently, myeloablative transplantation with matched-sibling donor has a higher event-free survival (98%) in patients younger than 30 than that reported for non-myeloablative conditioning (88%). Nevertheless, the risk of chronic graft-vs-host disease in older patients and need for fertility preservation might be indications in patients older than 15 for a non-myeloablative conditioning.Copyright © 2019, Ferrata Storti Foundation.Free Article|
|7.||Pain Manag Nurs. 2019 May 10. pii: S1524-9042(18)30157-7. doi: 10.1016/j.pmn.2018.10.002. [Epub ahead of print]Acceptability and Feasibility of a Mindfulness-Based Intervention for Pain Catastrophizing among Persons with Sickle Cell Disease.Simmons LA1, Williams H2, Silva S3, Keefe F4, Tanabe P5.AbstractBACKGROUND:Few investigators have developed and tested nonpharmacological interventions for helping persons with sickle cell disease (SCD) manage persistent pain.AIMS:The purpose of this pilot study was to examine the feasibility and acceptability of a mindfulness-based intervention (MBI) in adults with SCD and chronic pain and to gather preliminary data on its efficacy.DESIGN:Data on feasibility and acceptability, including recruitment, retention, and attendance rates, were collected during a single-site, randomized control trial. Participants were randomly assigned to either a 6-session group telephonic MBI or a wait-listed control. Pain catastrophizing was assessed at baseline and at weeks 1, 3, and 6.SETTING:Outpatient, comprehensive, interdisciplinary sickle cell disease center in the Southeast.PARTICIPANTS/SUBJECTS:Adults at least 18 years of age with a self-reported diagnosis of sickle cell disease who self-identified as having chronic, non-cancer pain that persisted on most days for at least 6 months and adversely affected function and/or well-being.METHODS:Seventy-eight adults were recruited; 18 (23%) declined to participate; 60 were randomly assigned to either the MBI (N = 40) or control (N = 20). Of those, 14 (35%) from the MBI and 12 (60%) from the control group withdrew immediately after random allocation, resulting in 34 evaluable cases (MBI: N = 26; control: N = 8).RESULTS:Among the 26 assigned to MBI, the median number of sessions attended per person was 4; 7 (27%) attended all six sessions. Qualitative findings indicated that MBI participants viewed the program as acceptable and liked the telephonic format, community, and content. Reductions in pain catastrophizing outcomes were identified after intervention.CONCLUSIONS:An MBI is feasible and acceptable for persons with SCD experiencing chronic pain. A larger randomized controlled trial to establish MBI efficacy on pain and related outcomes for SCD will provide nonpharmacologic, behavioral pain management options for nurses and other clinicians caring for persons with SCD and chronic pain.Copyright © 2018 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.|
|8.||Am J Hematol. 2019 May 9. doi: 10.1002/ajh.25508. [Epub ahead of print]High Incidence of Venous Thromboembolism Recurrence in Patients with Sickle Cell Disease.Brunson A1, Keegan T1, Mahajan A1, White R2, Wun T1,3.AbstractPrevious reports show increased incidence of venous thromboembolism [VTE, deep-vein thrombosis (DVT) and pulmonary embolus (PE)] in sickle cell disease (SCD) patients. The incidence, time course, and risk factors for VTE recurrence have been less well described. We determined the cumulative incidence of first VTE recurrence and bleeding in a cohort of SCD patients with incident VTE. Risk factors for recurrence and bleeding were also determined using multivariable Cox regression models, adjusting for gender, race/ethnicity, era of incident VTE, location and hospitalization-associated status of incident VTE, and SCD-related complications. Results are presented as adjusted hazard ratios (HR) and 95% confidence intervals (CI). Among 877 SCD patients with an incident VTE, the 1-year and 5-year cumulative incidence of recurrence was 13.2% (95% CI 11.0%-15.5%) and 24.1% (95% CI 21.2%-27.1%). Risk factors for VTE recurrence included more severe SCD (HR=2.41; CI: 1.67-3.47), lower extremity DVT as the incident event (HR=1.64; CI: 1.17-2.30), and pneumonia/acute chest syndrome (HR=1.68; CI: 1.15-2.45). The cumulative incidence of bleeding was 4.9% (CI 3.5%-6.4%) at 6 months and 7.9% (CI: 6.2%-9.8%) at 1 year. More severe SCD (HR=1.61; CI: 1.11-2.35) was associated with bleeding. The high incidence of VTE recurrence in patients with SCD suggests that extended anticoagulation may be indicated; however, this must be weighed against a relatively high risk of bleeding. Prospective, randomized studies of anticoagulation in SCD patients with VTE are needed. This article is protected by copyright. All rights reserved.This article is protected by copyright. All rights reserved.|
|9.||PLoS One. 2019 May 7;14(5):e0216414. doi: 10.1371/journal.pone.0216414. eCollection 2019.Barriers and facilitators to care for individuals with sickle cell disease in central North Carolina: The emergency department providers’ perspective.Masese RV1, Bulgin D1, Douglas C2, Shah N3, Tanabe P1.AbstractBACKGROUND:Sickle cell disease (SCD) is an inherited blood disorder associated with acute pain crisis and other complications that lead to frequent emergency department (ED) visits. To improve outcomes, the National Heart, Lung and Blood Institute (NHLBI) published recommendations for management of acute pain crisis. NHLBI also funded eight centers across the United States to participate in the Sickle Cell Disease Implementation Consortium. This six-year effort consists of two phases. Phase one involved conducting needs assessments of barriers and facilitators to SCD care. The aim of this study was to describe challenges and facilitators to caring for SCD from the perspective of ED providers in central North Carolina (NC).METHODS AND FINDINGS:We conducted a needs assessment survey with ED providers throughout NC. We also conducted focus groups and an interview with ED providers from three healthcare facilities in central NC. One hundred and eleven surveys (60.6% physicians, 26% registered nurses, 13.5% physician assistants) were completed and 13 providers participated in 3 focus groups and 1 interview. Slightly more than half (50. 4%) utilized individualized dosing protocols to treat sickle cell pain. Only 32.4% of the providers were aware of the NHLBI SCD recommendations. Barriers to care from the survey included: patient behavior (67.57%), the opioid epidemic (67.57%), overcrowding (64.86%), and concern about addiction (49.55%). Perceived barriers to care identified in the focus groups and interview included: high patient volumes, lack of SCD care protocols, poor communication among providers and stigma. Facilitators to care included: individualized pain plans, comfort prescribing opioids and electronic medical records.CONCLUSION:SCD care is influenced by many factors. Our results illuminate the need for increased use of the NHLBI SCD recommendations, individualized pain protocols, and use of electronic medical records and other care-interventions, specifically geared towards improving provider knowledge and mitigating provider bias.PMCID: PMC6504169 Free PMC Article|
|10.||Pain. 2019 Apr 24. doi: 10.1097/j.pain.0000000000001591. [Epub ahead of print]Do chronic pain and comorbidities affect brain function in sickle cell patients? A systematic review of neuroimaging and treatment approaches.Da Silva JT1,2, Letzen JE2, Haythornthwaite JA2, Finan PH2, Campbell CM2, Seminowicz DA1.AbstractSickle cell disease (SCD) is a medical condition in which chronic pain is common and negatively impacts psychosocial function and quality of life. While the brain mechanisms underlying chronic pain are well studied in other painful conditions, the brain mechanisms underlying chronic pain and the associated psychosocial comorbidities are not well established in SCD. A growing literature demonstrates the effect of treatment of chronic pain, including pharmacological and nonpharmacological treatments, on brain function. The present systematic review aimed to: 1. determine the effects of chronic pain and psychosocial comorbidities on brain function of SCD patients; 2. summarize pharmacological and nonpharmacological approaches to treat these symptoms; and 3. identify areas for further investigation of potential beneficial effects of treatments on brain function. Titles were screened using predefined criteria, including SCD, and abstracts and full texts were reviewed by 2 independent reviewers. A total of 1,167 SCD articles were identified and 86 full articles were included covering 3 sections: chronic pain (4 studies), psychosocial comorbidities (11 studies), and pharmacological and nonpharmacological treatments (71 studies). Neuroimaging evidence demonstrates aberrant neural processing related to chronic pain and psychosocial comorbidities in SCD beyond ischemic stroke and cerebral hemorrhage. Although neuroimaging studies show an important role for psychological factors, pain management is nearly exclusively based on opioids. Behavior therapy appears useful to improve psychological symptoms as well as chronic pain and quality of life. Further investigation is required with larger cohorts, matched-controls, and examination of treatment-related neural mechanisms.|
|11.||Pediatr Blood Cancer. 2019 May 1:e27755. doi: 10.1002/pbc.27755. [Epub ahead of print]Integrated psychology support and comprehensive cognitive evaluation improves access to special education services for children with sickle cell disease.Ghafuri DL1, Sanger M1, Rodeghier M2, DeBaun MR1.AbstractBACKGROUND:Children with sickle cell disease (SCD) are at risk for cognitive deficits. Limited data describe whether comprehensive cognitive evaluation improves education resources and whether caregivers perceive the assessment as beneficial. We tested our two hypotheses: (a) an integrated comprehensive cognitive evaluation program in children with SCD results in increased special education services allocation; and (b) caregivers will value comprehensive cognitive evaluation services provided.PROCEDURE:In a tertiary care medical facility, as part of quality improvement project, in a before-and-after evaluation between March 2011 and July 2014, we examined the impact of targeted comprehensive cognitive evaluation on change in special education services. We also evaluated the caregiver’s perception regarding the utility of the provided services.RESULTS:A total of 21% (42 of 196) students (median age 11 years, range 3-18) with SCD were referred for cognitive assessment due to overt stroke (n = 11), silent stroke (n = 14), or concerns about cognitive or academic functioning without evidence of strokes (n = 17). At baseline, 45.2% received special education services and after the comprehensive cognitive evaluation 86.7% received special education services (P < 0.001). Among 33 caregivers who completed the survey, 97% reported that the assessment was helpful and 60% indicated that assessment led to beneficial changes for their children at school.CONCLUSION:Education advocacy coupled with comprehensive cognitive assessment in students with SCD improved access to special education services, and caregivers uniformly endorse this service as having added value.© 2019 Wiley Periodicals, Inc.|
Sickle Cell Conferences and Events
The Foundation for Sickle Cell Disease Research will be hosting its 13th Annual Symposium June 7-9, 2019 in Fort Lauderdale, FL. Registration is now open.
The EMBRACE-SCD (Education and Mentoring to BRing Access to CarE for Sickle Cell) Network is hosting the InauguralAcute Care Mini-Symposium on Friday, July 19, 2019 from 12:00-5:30PM at Atrium Health’s Levine Cancer Institute (Conference Room 3035ABC), located at: 1021 Morehead Medical Drive Charlotte, NC 28204.
This half-day symposium will focus on acute care provider education on NHLBI guidelines and comfort care to patients living with SCD. This event is free. CME/MOC/CEUs will be provided. RSVP at: firstname.lastname@example.org
Sickle Cell Disease Association of America’s 47th National Convention will be held October 9-12, 2019 in Baltimore, MD. https://www.sicklecelldisease.org/2019/01/18/47th-annual-national-convention-call-for-abstracts/
Sickle Cell in Focus 2019 will be held October 10 – 11, 2019 in Kingston, Jamaica at The Jamaica Pegasus Hotel. More details to come.
5th Annual Sickle Cell Symposium: Saturday November 9th, 2019 At
The Speedway Club, 5555 Concord Parkway South Concord, NC 28027