scholarly journals Utilizing a Peer Patient Advocate to Develop Sickle Cell Transition Educational Materials

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 5807-5807
Author(s):  
Ronisha Edwards-Elliott ◽  
Robin Johnson ◽  
Divya Bhandar ◽  
Sharice Bradford ◽  
Caroline Hodgson ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Educational Material ◽  
National Institutes Of Health ◽  
Healthcare Team ◽  
Cell Disease ◽  
Educational Materials ◽  
Patient Advocate ◽  
Patient Advocates ◽  
American Society

Background: Peer patient advocates, also called peer advocates or peer supporters have the same chronic illness as the patients that they aid to manage their health care (MacLellan, 2017). Our team developed an interactive group educational program that aimed to prepare and guide adolescents and emerging adults (AEAs) with Sickle Cell Disease (SCD) as they transition from pediatric to adult care and included a peer patient advocate as a co-facilitator of the program. Here we describe a peer advocate led process to develop an educational booklet equipped with visual aids, tables, and pertinent definitions. To our knowledge, this is a novel use of a peer patient advocate as it has not been seen in the literature before. Methods: The first iteration of the booklet was developed by the peer patient advocate based on topics discovered as important to AEAs and parents through qualitative interviews. The intent of the booklet was to be a guide and resource to four AEA's ages 16-21 as they completed the group healthcare meetings The peer advocate drew on personal experiences with SCD to make the educational booklet as relevant as possible while integrating health information from the National Institutes of Health (National Institutes of Health, 2015), American Society of Hematology (American Society of Hematology, n.d.), and Got Transition (Got Transition, n.d.). The second iteration of the program and booklet facilitated by the peer patient advocate integrated lessons learned from the pilot and was used by twelve patients ranging in age from 14-21. Each AEA was called 1-7 days prior to the next group meeting to evaluate the educational material and share their experiences. These structured interviews took between 5-10 minutes to complete was audio-recorded and transcribed into a text file that could be used for feedback analysis. Results: The AEAs overall described the booklet as useful, easy to understand, and beneficial to their learning. It was described as a resources that they found useful to go to for quick information and they enjoyed that it was related to the information presented within the group. The project overall demonstrated that using peer patient advocates as guides to the healthcare team can be very instrumental in developing patient educational materials and programs. Although peer patient advocates are not experts in developing educational material, this project demonstrates that peer patient advocates can develop excellent patient educational materials that are usable and relatable to adolescent patients with sickle cell disease. Conclusions: Having a peer patient advocate as part of the team that creates the education material can increase pertinent, usable, and relatable information for AEAs with sickle cell disease. The team felt the peer advocate's contributions were vital to the booklet content. Including a peer patient advocate to develop patient education development for other chronic diseases may be valuable for AEAs with other chronic health conditions. Disclosures No relevant conflicts of interest to declare.

scholarly journals End points for sickle cell disease clinical trials: renal and cardiopulmonary, cure, and low-resource settings

2019 ◽  
Vol 3 (23) ◽  
pp. 4002-4020 ◽  
Author(s):  
Ann T. Farrell ◽  
Julie Panepinto ◽  
Ankit A. Desai ◽  
Adetola A. Kassim ◽  
Jeffrey Lebensburger ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Patient Reported Outcome ◽  
Cell Disease ◽  
End Points ◽  
Low Resource Settings ◽  
Low Resource ◽  
Patient Reported ◽  
The Us ◽  
American Society

Abstract To address the global burden of sickle cell disease and the need for novel therapies, the American Society of Hematology partnered with the US Food and Drug Administration to engage the work of 7 panels of clinicians, investigators, and patients to develop consensus recommendations for clinical trial end points. The panels conducted their work through literature reviews, assessment of available evidence, and expert judgment focusing on end points related to patient-reported outcome, pain (non–patient-reported outcomes), the brain, end-organ considerations, biomarkers, measurement of cure, and low-resource settings. This article presents the findings and recommendations of the end-organ considerations, measurement of cure, and low-resource settings panels as well as relevant findings and recommendations from the biomarkers panel.

scholarly journals American Society of Hematology 2020 guidelines for sickle cell disease: transfusion support

2020 ◽  
Vol 4 (2) ◽  
pp. 327-355 ◽  
Author(s):  
Stella T. Chou ◽  
Mouaz Alsawas ◽  
Ross M. Fasano ◽  
Joshua J. Field ◽  
Jeanne E. Hendrickson ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Iron Overload ◽  
Sickle Cell ◽  
Conflicts Of Interest ◽  
Guideline Development ◽  
Practice Research ◽  
Evidence Based ◽  
Red Cell ◽  
Cell Disease ◽  
American Society

Background: Red cell transfusions remain a mainstay of therapy for patients with sickle cell disease (SCD), but pose significant clinical challenges. Guidance for specific indications and administration of transfusion, as well as screening, prevention, and management of alloimmunization, delayed hemolytic transfusion reactions (DHTRs), and iron overload may improve outcomes. Objective: Our objective was to develop evidence-based guidelines to support patients, clinicians, and other healthcare professionals in their decisions about transfusion support for SCD and the management of transfusion-related complications. Methods: The American Society of Hematology formed a multidisciplinary panel that was balanced to minimize bias from conflicts of interest and that included a patient representative. The panel prioritized clinical questions and outcomes. The Mayo Clinic Evidence-Based Practice Research Program supported the guideline development process. The Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach was used to form recommendations, which were subject to public comment. Results: The panel developed 10 recommendations focused on red cell antigen typing and matching, indications, and mode of administration (simple vs red cell exchange), as well as screening, prevention, and management of alloimmunization, DHTRs, and iron overload. Conclusions: The majority of panel recommendations were conditional due to the paucity of direct, high-certainty evidence for outcomes of interest. Research priorities were identified, including prospective studies to understand the role of serologic vs genotypic red cell matching, the mechanism of HTRs resulting from specific alloantigens to inform therapy, the role and timing of regular transfusions during pregnancy for women, and the optimal treatment of transfusional iron overload in SCD.

scholarly journals 2019 sickle cell disease guidelines by the American Society of Hematology: methodology, challenges, and innovations

2019 ◽  
Vol 3 (23) ◽  
pp. 3945-3950 ◽  
Author(s):  
M. Hassan Murad ◽  
Robert I. Liem ◽  
Eddy S. Lang ◽  
Elie A. Akl ◽  
Joerg J. Meerpohl ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Guideline Development ◽  
A Priori ◽  
Cell Transplant ◽  
Cell Disease ◽  
Hematopoietic Stem ◽  
Assessment Development ◽  
Cerebrovascular Complications ◽  
American Society

Abstract The American Society of Hematology (ASH) convened 5 guideline panels to develop clinical practice recommendations addressing 5 management areas of highest importance to individuals living with sickle cell disease: pain, cerebrovascular complications, pulmonary and kidney complications, transfusion, and hematopoietic stem cell transplant. Panels were multidisciplinary and consisted of patient representatives, content experts, and methodologists. The Mayo Clinic Evidence-Based Practice Center conducted systematic reviews based on a priori selected questions. In this exposition, we describe the process used by ASH, including the GRADE approach (Grades of Recommendations, Assessment, Development and Evaluation) for rating certainty of the evidence and the GRADE Evidence to Decision Framework. We also describe several unique challenges faced by the guideline panels and the specific innovations and solutions used to address them, including a curriculum to train patients to engage in guideline development, dealing with the opioid crisis, and working with indirect and noncomparative evidence.

scholarly journals American Society of Hematology 2020 guidelines for sickle cell disease: management of acute and chronic pain

2020 ◽  
Vol 4 (12) ◽  
pp. 2656-2701 ◽  
Author(s):  
Amanda M. Brandow ◽  
C. Patrick Carroll ◽  
Susan Creary ◽  
Ronisha Edwards-Elliott ◽  
Jeffrey Glassberg ◽  
...  
Keyword(s):  
Chronic Pain ◽  
Pain Management ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Practice Research ◽  
Management Approach ◽  
Evidence Based ◽  
Cell Disease ◽  
Targeted Interventions ◽  
American Society

Background: The management of acute and chronic pain for individuals living with sickle cell disease (SCD) is a clinical challenge. This reflects the paucity of clinical SCD pain research and limited understanding of the complex biological differences between acute and chronic pain. These issues collectively create barriers to effective, targeted interventions. Optimal pain management requires interdisciplinary care. Objective: These evidence-based guidelines developed by the American Society of Hematology (ASH) are intended to support patients, clinicians, and other health care professionals in pain management decisions for children and adults with SCD. Methods: ASH formed a multidisciplinary panel, including 2 patient representatives, that was thoroughly vetted to minimize bias from conflicts of interest. The Mayo Evidence-Based Practice Research Program supported the guideline development process, including updating or performing systematic reviews. Clinical questions and outcomes were prioritized according to importance for clinicians and patients. The Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach was used, including GRADE evidence-to-decision frameworks, to assess evidence and make recommendations, which were subject to public comment. Results: The panel reached consensus on 18 recommendations specific to acute and chronic pain. The recommendations reflect a broad pain management approach, encompassing pharmacological and nonpharmacological interventions and analgesic delivery. Conclusions: Because of low-certainty evidence and closely balanced benefits and harms, most recommendations are conditional. Patient preferences should drive clinical decisions. Policymaking, including that by payers, will require substantial debate and input from stakeholders. Randomized controlled trials and comparative-effectiveness studies are needed for chronic opioid therapy, nonopioid therapies, and nonpharmacological interventions.

scholarly journals Clinical Guideline Highlights for the Hospitalist: Management of Acute and Chronic Pain in Sickle Cell Disease

2021 ◽  
Author(s):  
Charles D Pham ◽  
Duong T Hua
Keyword(s):  
Chronic Pain ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Pediatric Patients ◽  
Clinical Guideline ◽  
Target Population ◽  
Cell Disease ◽  
Release Date ◽  
History Of ◽  
American Society

GUIDELINE TITLE: American Society of Hematology 2020 Guidelines for Sickle Cell Disease: Management of Acute and Chronic Pain RELEASE DATE: June 19, 2020 PRIOR VERSION: Not applicable DEVELOPER: American Society of Hematology Guideline Panel on Sickle Cell Disease-Related Pain FUNDING SOURCE: American Society of Hematology TARGET POPULATION: Adult and pediatric patients with a history of sickle cell disease with acute and chronic pain.

Serum Levels of Substance P Are Elevated in Patients With Sickle Cell Disease and Increase Further During Vaso-Occlusive Crisis

Blood ◽  
1998 ◽  
Vol 92 (9) ◽  
pp. 3148-3151 ◽  
Author(s):  
Lisa A. Michaels ◽  
Kwaku Ohene-Frempong ◽  
Huaqing Zhao ◽  
Steven D. Douglas
Keyword(s):  
Sickle Cell Disease ◽  
Substance P ◽  
Sickle Cell ◽  
Therapeutic Potential ◽  
Serum Levels ◽  
Control Group ◽  
Cell Disease ◽  
Neurokinin Receptor ◽  
Pain Crisis ◽  
American Society

As a mediator of neurogenic inflammation and pain, we hypothesized that levels of the neuropeptide Substance P (SP) would be elevated in patients with sickle cell disease (SCD) with vaso-occlusive pain crisis. SP is a known stimulator of tumor necrosis factor- (TNF-) release and a promoter of interleukin-8 (IL-8), which are reported to be increased in SCD. These cytokines enhance adhesion of leukocytes to endothelium and may play a role in vaso-occlusive events. Serum levels of IL-8, TNF, and SP were studied in three groups of children aged 2 to 18 years: 30 well children with SCD, 21 with SCD in pain crisis, and 20 healthy age-matched controls. Serum levels of SP were elevated in all SCD patients and were highest in patients in pain crisis. The percentage of sera with detectable levels of IL-8 (>5.0 pmol/L) was increased in SCD patients as compared with the control group. IL-8 levels were similar for well SCD patients and those with pain. TNF levels were not significantly different among the three groups. In three children with SCD, SP was measured at baseline and again during pain crisis. In each case, serum levels during pain crisis were higher than they were when the patient was well. We conclude that levels of SP are high in patients with SCD and increase during pain crisis. These results imply that SP plays a prominent role in the pain and inflammation of SCD and may be a measurable laboratory marker of vaso-occlusive crisis. We speculate that neurokinin receptor antagonists may have a therapeutic potential in the treatment of crisis pain. © 1998 by The American Society of Hematology.

scholarly journals American Society of Hematology 2020 guidelines for sickle cell disease: prevention, diagnosis, and treatment of cerebrovascular disease in children and adults

2020 ◽  
Vol 4 (8) ◽  
pp. 1554-1588 ◽  
Author(s):  
M. R. DeBaun ◽  
L. C. Jordan ◽  
A. A. King ◽  
J. Schatz ◽  
E. Vichinsky ◽  
...  
Keyword(s):  
Cognitive Function ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Clinical Care ◽  
Diagnosis And Treatment ◽  
Practice Research ◽  
Evidence Based ◽  
Ultrasound Screening ◽  
Cell Disease ◽  
American Society

Abstract Background: Central nervous system (CNS) complications are among the most common, devastating sequelae of sickle cell disease (SCD) occurring throughout the lifespan. Objective: These evidence-based guidelines of the American Society of Hematology are intended to support the SCD community in decisions about prevention, diagnosis, and treatment of the most common neurological morbidities in SCD. Methods: The Mayo Evidence-Based Practice Research Program supported the guideline development process, including updating or performing systematic evidence reviews. The panel used the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach, including GRADE evidence-to-decision frameworks, to assess evidence and make recommendations. Results: The panel placed a higher value on maintaining cognitive function than on being alive with significantly less than baseline cognitive function. The panel developed 19 recommendations with evidence-based strategies to prevent, diagnose, and treat CNS complications of SCD in low-middle– and high-income settings. Conclusions: Three of 19 recommendations immediately impact clinical care. These recommendations include: use of transcranial Doppler ultrasound screening and hydroxyurea for primary stroke prevention in children with hemoglobin SS (HbSS) and hemoglobin Sβ0 (HbSβ0) thalassemia living in low-middle–income settings; surveillance for developmental delay, cognitive impairments, and neurodevelopmental disorders in children; and use of magnetic resonance imaging of the brain without sedation to detect silent cerebral infarcts at least once in early-school-age children and once in adults with HbSS or HbSβ0 thalassemia. Individuals with SCD, their family members, and clinicians should become aware of and implement these recommendations to reduce the burden of CNS complications in children and adults with SCD.

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