{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T20:07:50Z","timestamp":1785528470782,"version":"3.56.0"},"reference-count":58,"publisher":"American Society of Hematology","issue":"1","content-domain":{"domain":["ashpublications.org"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2019,12,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>In countries with access to organized health care, survival of children with sickle cell disease (SCD) has greatly improved, resulting in a growing population of adults with SCD. Transition from pediatric to adult care presents many challenges for the patient, who now faces the reality of emerging complications in many organs that are cumulative, adding to other age-related nonsickle conditions that interact and add to the disease morbidity. We recommend regular comprehensive annual assessments, monitoring for early signs of organ damage and joint clinics with relevant specialists, if applicable. While maintaining a low threshold for intervention with disease-modifying therapies, we should always keep in mind that there is no single complication that is pathognomonic of SCD, and nonsickle comorbidities should always be excluded and treated if present. We need to reevaluate our approach to managing adults with SCD by putting a greater emphasis on multidisciplinary care while proactively considering curative options (hematopoietic stem cell transplant and gene therapy) and experimental pharmacological agents for adults with SCD of all ages before complications render the patients ineligible for these treatments.<\/jats:p>","DOI":"10.1182\/hematology.2019000055","type":"journal-article","created":{"date-parts":[[2019,12,6]],"date-time":"2019-12-06T15:15:12Z","timestamp":1575645312000},"page":"505-512","update-policy":"https:\/\/doi.org\/10.1182\/blood.2019cm0000","source":"Crossref","is-referenced-by-count":11,"title":["Optimal disease management and health monitoring in adults with sickle cell disease"],"prefix":"10.1182","volume":"2019","author":[{"given":"Jo","family":"Howard","sequence":"first","affiliation":[{"name":"Department of Haematology, Guy\u2019s and St Thomas\u2019 Hospitals NHS Foundation Trust, London, United Kingdom; and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Swee Lay","family":"Thein","sequence":"additional","affiliation":[{"name":"Sickle Cell Branch, National Heart, Lung, and Blood Institute\/National Institutes of Health, Bethesda, MD"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"234","reference":[{"issue":"2","key":"2019120610110478300_B1","doi-asserted-by":"crossref","first-page":"182","DOI":"10.1002\/pbc.20180","article-title":"Variation in hospitalizations and hospital length of stay in children with vaso-occlusive crises in sickle cell disease","volume":"44","author":"Panepinto","year":"2005","journal-title":"Pediatr Blood Cancer"},{"issue":"1","key":"2019120610110478300_B2","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1002\/ajh.20336","article-title":"Hospital readmission for adult acute sickle cell painful episodes: frequency, etiology, and prognostic significance","volume":"79","author":"Ballas","year":"2005","journal-title":"Am J Hematol"},{"issue":"2","key":"2019120610110478300_B3","doi-asserted-by":"crossref","first-page":"94","DOI":"10.7326\/0003-4819-148-2-200801150-00004","article-title":"Daily assessment of pain in adults with sickle cell disease","volume":"148","author":"Smith","year":"2008","journal-title":"Ann Intern Med"},{"issue":"6","key":"2019120610110478300_B4","doi-asserted-by":"crossref","first-page":"461","DOI":"10.1054\/jpai.2002.128064","article-title":"Characteristics of pain managed at home in children and adolescents with sickle cell disease by using diary self-reports","volume":"3","author":"Dampier","year":"2002","journal-title":"J Pain"},{"issue":"5","key":"2019120610110478300_B5","doi-asserted-by":"crossref","first-page":"376","DOI":"10.1002\/ajh.23961","article-title":"Impact of a dedicated infusion clinic for acute management of adults with sickle cell pain crisis","volume":"90","author":"Lanzkron","year":"2015","journal-title":"Am J Hematol"},{"issue":"4","key":"2019120610110478300_B6","doi-asserted-by":"crossref","first-page":"690","DOI":"10.1111\/bjh.15169","article-title":"Pain and opioid use after reversal of sickle cell disease following HLA-matched sibling haematopoietic stem cell transplant","volume":"184","author":"Darbari","year":"2019","journal-title":"Br J Haematol"},{"issue":"2","key":"2019120610110478300_B7","doi-asserted-by":"crossref","first-page":"149","DOI":"10.1016\/j.ejpain.2004.05.011","article-title":"Opioids and central sensitisation: II. 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