The management of end-organ damage represents a major challenge facing individuals living with sickle cell disease (SCD), the majority of whom now survive into adulthood. The strength of a recommendation has important implications to patients, clinicians, policymakers, and researchers (Table 1). Patients developed a script to use during panel deliberations (eg, what to do when the conversation includes too much jargon). The guideline panel dealing with hematopoietic stem cell transplant faced the challenge of the absence of comparative studies. Listen to the podcasts below to learn more about ASH's clinical guidelines. The Mayo Evidence-Based Practice Research Program supported the guideline development process, including performing systematic evidence reviews up to September 2017. Additional research may not be needed to support this specific effect estimate. Panels were multidisciplinary and consisted of patient representatives, content experts, and methodologists. All panel members rated the importance of outcomes on a scale of 1 to 9 (1-3 of limited importance, 4-6 important, and 7-9 critical). These remarks contain practical information needed to implement and apply the recommendation. 2017 Jul 3;7(7):CD012380. 2020 May 12;4(9):2095-2110. doi: 10.1182/bloodadvances.2020001755. In terms of feasibility, the panel considered the effect of the recommendations on access to pain care for individuals with SCD who suffer from severe and disabling pain. HHS Despite therapeutic advances focused on disease modification and curative intent, the care of individuals with SCD may be fragmented and negatively affected by poor access to providers with the necessary expertise in SCD. 2020 May 26;4(10):2351-2365. doi: 10.1182/bloodadvances.2020001768. M. Hassan Murad, Robert I. Liem, Eddy S. Lang, Elie A. Akl, Joerg J. Meerpohl, Michael R. DeBaun, John F. Tisdale, Amanda M. Brandow, Sophie M. Lanzkron, Stella T. Chou, Starr Webb, Reem A. Mustafa; 2019 sickle cell disease guidelines by the American Society of Hematology: methodology, challenges, and innovations. The panel prioritized clinical questions and outcomes according to their importance for clinicians and patients. The guides cover such topics as thrombocytopenia in pregnancy, heparin-induced thrombocytopenia, red blood cell transfusion, anticoagulant dosing and … ASH has developed a series of brief, evidence-based pocket guides to help physicians provide quality care to patients. Prescribing guidelines published by the Centers for Disease Control and Prevention in 2016 restricted the use of opioids for patients with chronic noncancer pain. However, additional research can be needed to extend findings to other populations or settings or to support implementation. ASH formed a multidisciplinary guideline panel that included 2 patient representatives and was balanced to minimize potential bias from conflicts of interest. Abdallah K, Buscetta A, Cooper K, Byeon J, Crouch A, Pink S, Minniti C, Bonham VL. The panel developed 10 critical questions that centered on commonly encountered pain management issues in both the outpatient and inpatient settings. Although patient engagement in guideline development is supported by a strong moral and ethical rationale, the quality and depth of this engagement varies, and guideline developers often struggle with achieving adequate engagement.9 Tokenistic engagement, that is, offering engagement as a gesture, is not unusual.10 For the SCD guidelines, 2 patient representatives were recruited for each of the 5 guideline panels. Emergency Department Utilization for Patients Living With Sickle Cell Disease: Psychosocial Predictors of Health Care Behaviors. Longstanding practices in pain management related to transfusion therapy, basal opioid infusions, and administration of parenteral hydration during acute pain episodes were subjected to scrutiny. However, transplant has been historically only offered to the most severely affected patients, rendering these comparisons unbalanced. Using this framework is critical for transparency and to show guideline users how decisions were made (the effect of values on the decision, and which criteria drove the decision). 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. T1 - American Society of Hematology 2019 guidelines for sickle cell disease. doi: https://doi.org/10.1182/bloodadvances.2019000931. USA.gov. Searches for primary studies included at a minimum Medline and Embase. | 2020 Aug 13;105(10):239350. doi: 10.3324/haematol.2019.239350. Conflict-of-interest disclosure: The authors declare no competing financial interests. A recommendation for shared decision making about using tissue plasminogen activator in patients with SCD presenting with acute ischemic stroke was followed by remarks that included guidance on patient selection. The first phase focused on direct evidence (ie, studies of pain management in individuals with SCD). GRADE evidence to decision frameworks for tests in clinical practice and public health, Decision making about healthcare-related tests and diagnostic test strategies. Duckworth L, Black LV, Ezmigna D, Green J, Yao Y, Grannis S, Klann J, Applegate R, Lipori G, Wallace T, Wilkie DJ.
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