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ASH guidelines intended to fill gaps in care for individuals with sickle cell disease
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ASH has initiated an effort to develop clinical practice guidelines for the management of sickle cell disease.
The guidelines — expected to be published in 2019 — will account for data that has been published or presented since the NHLBI issued its own guidelines in 2014.
“These guidelines will help specialists provide optimal care for patients throughout their lives,” Robert I. Liem, MD, MS, chair of the ASH sickle cell disease guidelines coordination panel, said in a press release. “We are eager to work with other hematologists, pediatricians, emergency room physicians and people with sickle cell disease to improve patients’ overall quality of life.”
HemOnc Today spoke with Liem about the need for these guidelines, what they likely will encompass, and how they can help ensure optimal care and improve patient outcomes.
Question: Can you describe the need for these guidelines?
Answer: These guidelines best represent a broader initiative by ASH to address sickle cell disease and to improve care for individuals with the disease. Many patients with sickle cell disease do not have access to providers who have specific expertise in this condition. These guidelines will represent a valuable resource for clinicians who care for this patient population.
Q: What key issues will be addressed?
A: For the development of these evidence-based guidelines, ASH has put together five panels to address specific issues and gaps related to care in the areas of pain, cerebral vascular disease, cardiopulmonary and kidney disease, transplantation and transfusion.
Q: Can you describe the guideline development process?
A: Development of these guidelines will start with a systematic review of available evidence. The final recommendations will be based on a formal methodologic process that grades the quality of evidence found in the literature. ASH has contracted with the Mayo Clinic Evidence-Based Practice Research Center to support the development of these guidelines.
Q: Who will serve on each panel?
A: Each panel is headed by a chair and co-chair. The chair is either an adult hematologist or a pediatric hematologist with expertise in sickle cell disease. The co-chair will be a methodologist from the Mayo Clinic Evidence-Based Practice Research Center. Members of the panel include specialists who have expertise in this particular area, such as pain, stroke, transplantation, cardiopulmonary disease or kidney disease. There also will be one to two patient representatives on each panel so we can get their input when developing these guidelines.
Q: How will these guidelines ensure optimal care and improve outcomes?
A: A major goal is to optimize care and ultimately lead to better patient outcomes for individuals with sickle cell disease. The 2014 NHLBI expert panel recommendation guidelines target a more general provider audience. The ASH guidelines are intended to supplement — not replace — the NHLBI guidelines by providing even greater detail for hematologists and other specialists. We hope the ASH guidelines will reach a broad, multidisciplinary audience. We believe these guidelines will help fill gaps in the care of individuals with sickle cell disease by providing evidence-based recommendations that providers — both general and specialists — will find valuable in their practice. The sickle cell disease community — including patients, their families and physicians — have the common goal of improving care for this disease. These guidelines will take us a step closer to that goal.
Q: Is there anything else that you would like to mention?
A: Many gaps remain in the care of individuals with sickle cell disease, both in the United States and around the world. The guidelines really represent a major area that we need to address within sickle cell disease — access and quality of care. ASH has committed to this in its call-to-action initiative last year. I believe these guidelines are going to be invaluable to the sickle cell community. – by Jennifer Southall
For more information:
Robert I. Liem, MD, MS, can be reached at Ann and Robert H. Lurie Children’s Hospital of Chicago, 225 East Chicago Ave., Chicago, IL 60611; email: rliem@luriechildrens.org.
Disclosure: Liem reports no relevant financial disclosures.