Integrative holistic approaches for children, adolescents, and young adults with sickle cell disease: A single center experience

Laila A. Mahmood; Lisa Thaniel; Brenda Martin; Stefanie Marguiles; Sarah Reece-Stremtan; Risi Idiokitas; Elizabeth Bettini; Steven J. Hardy; Ira Cohen; Megan Connolly; Deepika S. Darbari

Complementary Therapies in Medicine (Aug 2021)

Integrative holistic approaches for children, adolescents, and young adults with sickle cell disease: A single center experience

Laila A. Mahmood,
Lisa Thaniel,
Brenda Martin,
Stefanie Marguiles,
Sarah Reece-Stremtan,
Risi Idiokitas,
Elizabeth Bettini,
Steven J. Hardy,
Ira Cohen,
Megan Connolly,
Deepika S. Darbari

Affiliations

Laila A. Mahmood: Pediatric Palliative Care Program, Children’s National Medical Center, Washington, District of Columbia, USA; Division of Hematology, Center for Cancer and Blood Disorders, Children’s National Medical Center, Washington, District of Columbia, USA; Department of Pediatrics, George Washington University School of Medicine and Health Sciences, District of Columbia, USA; Corresponding author at: Children’s National Medical Center, 111 Michigan Avenue NW, Washington DC, 20010, USA.
Lisa Thaniel: Division of Hematology, Center for Cancer and Blood Disorders, Children’s National Medical Center, Washington, District of Columbia, USA
Brenda Martin: Division of Hematology, Center for Cancer and Blood Disorders, Children’s National Medical Center, Washington, District of Columbia, USA
Stefanie Marguiles: Division of Hematology, Center for Cancer and Blood Disorders, Children’s National Medical Center, Washington, District of Columbia, USA
Sarah Reece-Stremtan: Division of Anesthesiology, Pain, and Perioperative Medicine, Children’s National Medical Center, Washington, District of Columbia, USA; Department of Pediatrics, George Washington University School of Medicine and Health Sciences, District of Columbia, USA
Risi Idiokitas: Pediatric Palliative Care Program, Children’s National Medical Center, Washington, District of Columbia, USA
Elizabeth Bettini: Pediatric Palliative Care Program, Children’s National Medical Center, Washington, District of Columbia, USA
Steven J. Hardy: Division of Hematology, Center for Cancer and Blood Disorders, Children’s National Medical Center, Washington, District of Columbia, USA; Department of Pediatrics, George Washington University School of Medicine and Health Sciences, District of Columbia, USA
Ira Cohen: Division of Anesthesiology, Pain, and Perioperative Medicine, Children’s National Medical Center, Washington, District of Columbia, USA; Department of Pediatrics, George Washington University School of Medicine and Health Sciences, District of Columbia, USA
Megan Connolly: Division of Hematology, Center for Cancer and Blood Disorders, Children’s National Medical Center, Washington, District of Columbia, USA; Department of Pediatrics, George Washington University School of Medicine and Health Sciences, District of Columbia, USA
Deepika S. Darbari: Division of Hematology, Center for Cancer and Blood Disorders, Children’s National Medical Center, Washington, District of Columbia, USA; Department of Pediatrics, George Washington University School of Medicine and Health Sciences, District of Columbia, USA; Corresponding author at: Division of Hematology, Children’s National Medical Center, 111 Michigan Avenue NW, Washington DC, 20010, USA.

Journal volume & issue: Vol. 60
p. 102680

Abstract

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Context: Painful vaso-occlusive crises (VOCs) associated with sickle cell disease (SCD) are the most common cause of morbidity, hospitalizations, and poor quality of life. Additional symptoms such as sleep disturbances, fatigue, and stress are also common. Non-traditional approaches are often used by families, but concerns remain that patients may forgo standard of care effective therapies in favor of dangerous unproven alternatives. Objectives: To describe a single center experience related to a multidisciplinary integrative medicine clinic within the division of hematology dedicated to children and young adults with SCD. Methods: The Sickle Cell Integrative Clinic at Children’s National Hospital services patients with SCD. The main goal of this clinic is to provide access to non-pharmacologic interventions, and to manage patients’ symptoms in a holistic manner along with standard of care management of SCD. This IRB approved study evaluated experiences of both patients and parents who attended this clinic. Results: Thirty-seven unique patients attended this clinic over 2 years and 31 participated in the study. After attending the SCD integrative clinic, the majority of patients reported integrative therapies to be an acceptable way of treating pain and believed these to be effective. Overall, the vast majority (88 %) of patients reported having a positive experience with the therapies offered in the clinic. None of the patients experienced any adverse events related to integrative therapies provided in the clinic. Conclusion: Our experience suggests that encouraging conversations and offering safe and potentially effective integrative therapies alongside conventional SCD therapies under medical guidance allows patients to have an open discussion about their beliefs and treatment goals, improves patient satisfaction and can improve outcomes.

Published in Complementary Therapies in Medicine

ISSN: 0965-2299 (Print); 1873-6963 (Online)
Publisher: Elsevier
Country of publisher: United Kingdom
LCC subjects: Medicine: Other systems of medicine
Website: https://www.sciencedirect.com/journal/complementary-therapies-in-medicine

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