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Recent treatment guidelines for managing adult patients with sickle cell disease: challenges in access to care, social issues, and adherence

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Pages 541-552 | Received 21 Jan 2016, Accepted 15 Apr 2016, Published online: 24 May 2016

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Neha Durgam, Triza Brion, Hannah B Lewis, Biba Tinga, Wilson Sanon, Mark Lundie & Chantal Cadieux. (2023) Patient and Caregiver Perspectives on Care-Seeking During a Vaso-Occlusive Crisis in Sickle Cell Disease: Results from Qualitative Interviews in Canada. Patient Preference and Adherence 17, pages 41-49.
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Aderson da Silva Araújo, Ana Cristina Silva Pinto, Clarisse Lopes de Castro Lobo, Maria Stella Figueiredo, Sandra Fátima Menosi Gualandro, Sara Teresinha Olalla Saad & Rodolfo Delfini Cancado. (2023) Novel Insights into the Pathophysiology and Treatment of Sickle Cell Disease. Hemoglobin 47:2, pages 71-79.
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Ugochi O Ogu, Nnenna U Badamosi, Pamela E Camacho, Amado X Freire & Patricia Adams-Graves. (2021) Management of Sickle Cell Disease Complications Beyond Acute Chest Syndrome. Journal of Blood Medicine 12, pages 101-114.
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Sharon A. Singh, Nitya Bakshi, Prashant Mahajan & Claudia R. Morris. (2020) What is the future of patient-reported outcomes in sickle-cell disease?. Expert Review of Hematology 13:11, pages 1165-1173.
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Christine Berg, Allison King & Dorothy Farrar Edwards. (2018) Mentoring Program for Young Adults with Sickle Cell Disease. Occupational Therapy In Health Care 32:2, pages 124-136.
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Adrienne D. Mishkin, Elizabeth J. Prince, Elizabeth J. Leimbach, Markus Y. Mapara & C. Patrick Carroll. (2023) Psychiatric comorbidities in adults with sickle cell disease: A narrative review. British Journal of Haematology 203:5, pages 747-759.
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Ana A. Baumann, Jane S. Hankins, Lewis L. Hsu, Robert W. Gibson, Lynne D. Richardson, Marsha Treadwell, Jeffrey A. Glassberg, Sarah Bourne, Lingzi Luo, Rita V. Masese, Terri Demartino, Judith Nocek, Elizabeth Taaffe, Sierra Gollan, Ome-Ollin Ruiz, Chinonyelum Nwosu, Nai Qashou, Aimee S. James, Paula Tanabe & Allison A. King. (2023) “The project did not come to us with a solution”: Perspectives of research teams on implementing a study about electronic health record-embedded individualized pain plans for emergency department treatment of vaso-occlusive episodes in adults with sickle cell disease. BMC Health Services Research 23:1.
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Rachel G. Sinkey, Foluso J. Ogunsile, Julie Kanter, Cynthia Bean & Mara Greenberg. (2023) Society for Maternal-Fetal Medicine Consult Series #68: Sickle cell disease in pregnancy. American Journal of Obstetrics and Gynecology.
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Stephanie Harris Mercado. (2023) An Outpatient Pain Plan and Emergency Department Pain Pathway for Adults With Sickle Cell Disease. Topics in Pain Management 38:10, pages 1-5.
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Stephanie Harris Mercado. (2023) An outpatient pain plan and ED pain pathway for adults with sickle cell disease. JAAPA 36:3, pages 20-23.
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Natalia Scaramellini, Dania Fischer, Anand R. Agarvas, Irene Motta, Martina U. Muckenthaler & Christina Mertens. (2023) Interpreting Iron Homeostasis in Congenital and Acquired Disorders. Pharmaceuticals 16:3, pages 329.
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Han-Wei Wu, Michael Gannon & Lewis L. Hsu. (2023) Evaluation of Glutamine Utilization in Patients With Sickle Cell Disease. Journal of Pediatric Hematology/Oncology 45:1, pages e52-e55.
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Dora L. Clayton-Jones, Jill B. Hamilton, Kristin Haglund, Lee Za Ong, Kalen C. Kennedy, Sylvia Pena, Latoya Stamper & Coretta Jenerette. (2023) Sickle cell disease and adolescents’ perspectives on self-care management resources. Health Care Transitions 1, pages 100026.
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Sherif M Badawy, Lisa DiMartino, Donald Brambilla, Lisa Klesges, Ana Baumann, Ebony Burns, Terri DeMartino, Sara Jacobs, Hamda Khan, Chinonyelum Nwosu, Nirmish Shah & Jane S Hankins. (2022) Impact of the COVID-19 Pandemic on the Implementation of Mobile Health to Improve the Uptake of Hydroxyurea in Patients With Sickle Cell Disease: Mixed Methods Study. JMIR Formative Research 6:10, pages e41415.
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Sarah L. ReevesPooja N. PatelBrian MaddenSophia NgSusan E. CrearyDominic SmithChad Ellimoottil. (2022) Telehealth Use Before and During the COVID-19 Pandemic Among Children with Sickle Cell Anemia. Telemedicine and e-Health 28:8, pages 1166-1171.
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Izabella Khachikyan, Barbara Speller-Brown, Veronica Gomez-Lobo, Gylnthia Trotman & Deepika Darbari. (2022) Reproductive Health and Knowledge Among Youth with Sickle Cell Disease. The Journal for Nurse Practitioners 18:7, pages 726-729.
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Stephanie Guarino, Charmaine Wright & Sophie Lanzkron. (2022) Health Care Utilization by Adolescent/Young Adult Patients With Sickle Cell Disease in Delaware. Cureus.
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Matthew P Smeltzer, Kristen E Howell, Marsha Treadwell, Liliana Preiss, Allison A King, Jeffrey A Glassberg, Paula Tanabe, Sherif M Badawy, Lisa DiMartino, Robert Gibson, Julie Kanter, Lisa M Klesges & Jane S Hankins. (2021) Identifying barriers to evidence-based care for sickle cell disease: results from the Sickle Cell Disease Implementation Consortium cross-sectional survey of healthcare providers in the USA. BMJ Open 11:11, pages e050880.
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April Grady, Anthony Fiori, Dhaval Patel & Jessica Nysenbaum. (2021) Profile of Medicaid enrollees with sickle cell disease: A high need, high cost population. PLOS ONE 16:10, pages e0257796.
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Anna Flattau, Giacomo Vinces, Shuo You, Andrew S. Crouch & Caterina P. Minniti. (2021) Colocating Wound Care for Patients with Sickle Cell Ulcers in a Hematology Clinic. Advances in Skin & Wound Care 34:10, pages 539-541.
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Myriam Edjlali, Marie‐Pierre Gobin‐Metteil, Nicolas Mélé, Benjamin Maïer, Anoosha Habibi, Paul Kauv, Hassan Hosseini, Jean‐Louis Mas, Catherine Oppenheim, Frédéric Galactéros, Pablo Bartolucci & David Calvet. (2021) Transcranial color‐coded duplex sonography reliably identifies intracranial vasculopathy in adult patients with sickle cell disease. American Journal of Hematology 96:8, pages 961-967.
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Adekunle Sanyaolu, Ejoke Agiri, Carl Bertram, Latasha Brookes, Jesy Choudhury, Dorina Datt, Amira Ibrahim, Anna Maciejko, Anna Mansfield, Jasmine Nkrumah & Martina Williams. (2020) Current modalities of sickle cell disease management. Blood Science 2:4, pages 109-116.
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Julie Kanter, Robert Gibson, Raymona H. Lawrence, Matthew P. Smeltzer, Norma L. Pugh, Jeffrey Glassberg, Rita V. Masese, Allison A. King, Cecelia Calhoun, Jane S. Hankins & Marsha Treadwell. (2020) Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care. JAMA Network Open 3:5, pages e206016.
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David-Zacharie Issom, André Henriksen, Ashenafi Zebene Woldaregay, Jessica Rochat, Christian Lovis & Gunnar Hartvigsen. (2020) Factors Influencing Motivation and Engagement in Mobile Health Among Patients With Sickle Cell Disease in Low-Prevalence, High-Income Countries: Qualitative Exploration of Patient Requirements. JMIR Human Factors 7:1, pages e14599.
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Megan M. Miller, Amy E. Williams, Tamika C.B. Zapolski, Kevin L. Rand & Adam T. Hirsh. (2020) Assessment and Treatment Recommendations for Pediatric Pain: The Influence of Patient Race, Patient Gender, and Provider Pain-Related Attitudes. The Journal of Pain 21:1-2, pages 225-237.
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Monica Ter-Minassian, Sophie Lanzkron, Alphonse Derus, Elizabeth Brown & Michael A. Horberg. (2019) Quality Metrics and Health Care Utilization for Adult Patients with Sickle Cell Disease. Journal of the National Medical Association 111:1, pages 54-61.
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Carlos Eduardo Amaral Gonçalves, Priscila Oliveira Silva, Mauricio Santos Soares, Priscila Santos Bunn, Carla Martins Araujo Lima & Agnaldo José Lopes. (2019) Muscle dysfunction is associated with poorer health-related quality of life in adults with sickle cell anaemia. Journal of Back and Musculoskeletal Rehabilitation 32:1, pages 43-53.
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Ana A. Baumann, Steven H. Belle, Aimee James & Allison A. King. (2018) Specifying sickle cell disease interventions: a study protocol of the Sickle Cell Disease Implementation Consortium (SCDIC). BMC Health Services Research 18:1.
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Lisa D. DiMartino, Ana A. Baumann, Lewis L. Hsu, Julie Kanter, Victor R. Gordeuk, Jeffrey Glassberg, Marsha J. Treadwell, Cathy L. Melvin, Joseph Telfair, Lisa M. Klesges, Allison King, Ted Wun, Nirmish Shah, Robert W. Gibson & Jane S. Hankins. (2018) The sickle cell disease implementation consortium: Translating evidence-based guidelines into practice for sickle cell disease. American Journal of Hematology 93:12, pages E391-E395.
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Donna K. McClish, Wally R. Smith, James L. Levenson, Imoigele P. Aisiku, John D. Roberts, Susan D. Roseff & Viktor E. Bovbjerg. (2017) Comorbidity, Pain, Utilization, and Psychosocial Outcomes in Older versus Younger Sickle Cell Adults: The PiSCES Project. BioMed Research International 2017, pages 1-10.
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