{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,6]],"date-time":"2026-07-06T18:19:59Z","timestamp":1783361999727,"version":"3.54.6"},"reference-count":98,"publisher":"Public Library of Science (PLoS)","issue":"7","license":[{"start":{"date-parts":[[2026,7,6]],"date-time":"2026-07-06T00:00:00Z","timestamp":1783296000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS One"],"abstract":"<jats:sec id=\"sec001\">\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Sickle cell disease (SCD) stands as one of the most prevalent genetic disorders in the United States (U.S.) that causes severe consequences such as organ damage and excruciating pain. Alarmingly, recent literature indicates a decline in the number of people living with SCD (PLWSCD) seeking professional care \u2013 hinting at an avoidance of the healthcare system. Therefore, this scoping review synthesizes the evidence regarding barriers and facilitators influencing healthcare utilization among PLWSCD within the U.S.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec002\">\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>To map the current literature on SCD management and provide a comprehensive overview of the current knowledge gaps regarding healthcare utilization for PLWSCD, a scoping review was conducted. A systematic search of articles reporting on the utilization of healthcare among PLWSCD in the U.S using seven data sources was conducted on March 24, 2023, without any restrictions on publication date and language. To capture any additional articles, the search was updated on March 4, 2024. Two reviewers independently assessed studies for inclusion, data extraction, and risk of bias (RoB).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec003\">\n                    <jats:title>Main results<\/jats:title>\n                    <jats:p>\n                      A total of 708 articles were screened; 70 met the study criteria. Results indicated that the four most common barriers were social (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200925) interpersonal (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200923), economic (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200915), and institutional level factors (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200911). The top four most common facilitators were technology (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20099), education (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20097), autonomy (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20096), and a positive patient-provider relationship (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20096). The most common forms of healthcare utilization were inpatient or hospital admissions (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200919) and emergency department (ED) visits (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200918). Evidence-based interventions (EBI) found to decrease healthcare avoidance included individualized pain plans (IPPs) (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20094) and quality improvement (QI) strategies (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20093).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec004\">\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This scoping review identified complex multilevel barriers that impede healthcare utilization, and facilitators likely to promote healthcare utilization among PLWSCD in the U.S. Future research should prioritize developing and evaluating comprehensive, multi-level interventions that address identified barriers while leveraging facilitators to improve healthcare engagement and outcomes for this vulnerable population. Healthcare systems and health policies must urgently adopt and integrate evidence-based strategies to rebuild trust and ensure equitable, accessible care for PLWSCD.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1371\/journal.pone.0349441","type":"journal-article","created":{"date-parts":[[2026,7,6]],"date-time":"2026-07-06T17:56:04Z","timestamp":1783360564000},"page":"e0349441","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":0,"title":["Barriers and facilitators to healthcare utilization amongst people living with sickle cell disease in the United States: A scoping review"],"prefix":"10.1371","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6583-6448","authenticated-orcid":true,"given":"Christina","family":"Ruan","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joyce","family":"Gyamfi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nana","family":"Osei-Tutu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9632-2415","authenticated-orcid":true,"given":"Shreya","family":"Meda","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-2214-6213","authenticated-orcid":true,"given":"Lydia","family":"Samuels","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nousheen","family":"Inayat","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sukruthi","family":"Thunga","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0958-2601","authenticated-orcid":true,"given":"Elizabeth","family":"Noble","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dorice L.","family":"Viera","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Deborah","family":"Adenikinju","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charmaine","family":"Royal","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela","family":"Odoms-Young","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7701-2585","authenticated-orcid":true,"given":"Prince Michael","family":"Amegbor","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emmanuel","family":"Peprah","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2026,7,6]]},"reference":[{"issue":"5","key":"pone.0349441.ref001","doi-asserted-by":"crossref","first-page":"519","DOI":"10.3390\/mi12050519","article-title":"Techniques for the detection of sickle cell disease: a review","volume":"12","author":"WA Arishi","year":"2021","journal-title":"Micromachines (Basel)"},{"issue":"1","key":"pone.0349441.ref002","doi-asserted-by":"crossref","first-page":"57","DOI":"10.1001\/jama.2022.10233","article-title":"Sickle cell disease: a review","volume":"328","author":"PL Kavanagh","year":"2022","journal-title":"JAMA"},{"issue":"9","key":"pone.0349441.ref003","doi-asserted-by":"crossref","first-page":"643","DOI":"10.1080\/17474086.2024.2385482","article-title":"The medication usage pattern and prevalence of polypharmacy among patients with sickle cell disease: a population-based study in southern Iran","volume":"17","author":"A Amini","year":"2024","journal-title":"Expert Rev Hematol"},{"key":"pone.0349441.ref004","author":"C Alexander","year":"2024"},{"issue":"8","key":"pone.0349441.ref005","doi-asserted-by":"crossref","first-page":"571","DOI":"10.1097\/MPH.0b013e3181acd889","article-title":"Perceived barriers to clinic appointments for adolescents with sickle cell disease","volume":"31","author":"LE Crosby","year":"2009","journal-title":"J Pediatr Hematol Oncol"},{"key":"pone.0349441.ref006","unstructured":"U.S. Centers for Disease Control. Data and statistics on sickle cell disease. 2024. https:\/\/www.cdc.gov\/sickle-cell\/data\/index.html"},{"key":"pone.0349441.ref007","volume-title":"National Academies of Sciences E, and Medicine; Health and Medicine Division; Board on Health Care Services; Committee on Health Care Utilization and Adults with Disabilities. Health-Care Utilization as a Proxy in Disability Determination","year":"2018"},{"issue":"2","key":"pone.0349441.ref008","doi-asserted-by":"crossref","first-page":"438","DOI":"10.1002\/jha2.84","article-title":"Patterns of healthcare utilization among patients with sickle cell disease hospitalized with pain crises","volume":"1","author":"AM Rodday","year":"2020","journal-title":"EJHaem"},{"key":"pone.0349441.ref009","author":"US Centers for Disease Control","year":"2022"},{"key":"pone.0349441.ref010","unstructured":"Sickle cell anemia - symptoms and causes. Mayo Clinic. 2023. https:\/\/www.mayoclinic.org\/diseases-conditions\/sickle-cell-anemia\/symptoms-causes\/syc-20347473"},{"issue":"7","key":"pone.0349441.ref011","doi-asserted-by":"crossref","first-page":"467","DOI":"10.7326\/M18-0850","article-title":"PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation","volume":"169","author":"AC Tricco","year":"2018","journal-title":"Ann Intern Med"},{"issue":"1","key":"pone.0349441.ref012","doi-asserted-by":"crossref","first-page":"19","DOI":"10.1080\/1364557032000119616","article-title":"Scoping studies: towards a methodological framework","volume":"8","author":"H Arksey","year":"2005","journal-title":"Int J Soc Res Methodol"},{"key":"pone.0349441.ref013","article-title":"Assessing risk of bias in a randomized trial","author":"PT Julian","year":"2023","journal-title":"Cochrane"},{"key":"pone.0349441.ref014","article-title":"Systematic reviews of effectiveness","author":"CMZ Tufanaru","year":"2017","journal-title":"The Joanna Briggs Institute"},{"key":"pone.0349441.ref015","volume-title":"Newcastle-Ottawa Scale (NOS) for assessing the quality of nonrandomised studies in meta-analyses","author":"GA Wells","year":"2024"},{"key":"pone.0349441.ref016","article-title":"Systematic reviews of etiology and risk","author":"S Moola","year":"2017","journal-title":"Joanna Briggs Institute"},{"key":"pone.0349441.ref017","unstructured":"Case control study checklist - CASP 2018. https:\/\/casp-uk.net\/casp-tools-checklists\/case-control-study-checklist\/"},{"key":"pone.0349441.ref018","unstructured":"Qualitative studies checklist - CASP 2018. https:\/\/casp-uk.net\/casp-tools-checklists\/qualitative-studies-checklist\/"},{"key":"pone.0349441.ref019","author":"QNPP Hong","year":"2018"},{"issue":"5","key":"pone.0349441.ref020","doi-asserted-by":"crossref","DOI":"10.2196\/14884","article-title":"Development of the InCharge health mobile app to improve adherence to hydroxyurea in patients with sickle cell disease: user-centered design approach","volume":"8","author":"NM Alberts","year":"2020","journal-title":"JMIR Mhealth Uhealth"},{"issue":"1","key":"pone.0349441.ref021","doi-asserted-by":"crossref","first-page":"70","DOI":"10.1080\/08880018.2022.2071511","article-title":"Emergency department visits and hospitalizations among patients with sickle cell disease in Illinois, 2016-2020","volume":"40","author":"CM Barriteau","year":"2023","journal-title":"Pediatr Hematol Oncol"},{"issue":"2","key":"pone.0349441.ref022","doi-asserted-by":"crossref","first-page":"155","DOI":"10.7326\/M23-1520","article-title":"Gene therapy versus common care for eligible individuals with sickle cell disease in the United States\u00a0: a cost-effectiveness analysis","volume":"177","author":"A Basu","year":"2024","journal-title":"Ann Intern Med"},{"issue":"1","key":"pone.0349441.ref023","doi-asserted-by":"crossref","first-page":"1245","DOI":"10.1186\/s12913-023-10255-7","article-title":"\u201cThe project did not come to us with a solution\u201d: 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","volume":"23","author":"AA Baumann","year":"2023","journal-title":"BMC Health Serv Res"},{"issue":"2","key":"pone.0349441.ref024","doi-asserted-by":"crossref","first-page":"120","DOI":"10.1007\/s10865-010-9290-8","article-title":"Religious coping and hospital admissions among adults with sickle cell disease","volume":"34","author":"SM Bediako","year":"2011","journal-title":"J Behav Med"},{"issue":"5","key":"pone.0349441.ref025","doi-asserted-by":"crossref","first-page":"808","DOI":"10.1177\/1359105314539530","article-title":"The measure of sickle cell stigma: initial findings from the improving patient outcomes through respect and trust study","volume":"21","author":"SM Bediako","year":"2016","journal-title":"J Health Psychol"},{"issue":"4","key":"pone.0349441.ref026","doi-asserted-by":"crossref","first-page":"1130","DOI":"10.1182\/blood.V95.4.1130.003k03a_1130_1136","article-title":"Sickle cell anemia day hospital: an approach for the management of uncomplicated painful crises","volume":"95","author":"LJ Benjamin","year":"2000","journal-title":"Blood"},{"issue":"4","key":"pone.0349441.ref027","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1080\/15265161.2013.767954","article-title":"Sickle cell disease and the \u201cdifficult patient\u201d conundrum","volume":"13","author":"EJ Bergman","year":"2013","journal-title":"Am J Bioeth"},{"issue":"6","key":"pone.0349441.ref028","doi-asserted-by":"crossref","first-page":"3095","DOI":"10.1007\/s40615-022-01483-4","article-title":"Effects of experienced discrimination in pediatric sickle cell disease: caregiver and provider perspectives","volume":"10","author":"AO Blakey","year":"2023","journal-title":"J Racial Ethn Health Disparities"},{"key":"pone.0349441.ref029","doi-asserted-by":"crossref","DOI":"10.1016\/j.amepre.2010.01.003","article-title":"Health status and healthcare use in a national sample of children with sickle cell disease","volume":"38","author":"SL Boulet","year":"2010","journal-title":"Am J Prev Med"},{"issue":"6","key":"pone.0349441.ref030","doi-asserted-by":"crossref","first-page":"765","DOI":"10.1111\/phn.12643","article-title":"The influence of health literacy on emergency department utilization and hospitalizations in adolescents with sickle cell disease","volume":"36","author":"EP Caldwell","year":"2019","journal-title":"Public Health Nurs"},{"issue":"5","key":"pone.0349441.ref031","doi-asserted-by":"crossref","DOI":"10.1097\/MPH.0000000000002322","article-title":"Transition for adolescents and young adults with sickle cell disease in a US Midwest Urban center: a multilevel perspective on barriers, facilitators, and future directions","volume":"44","author":"C Calhoun","year":"2022","journal-title":"J Pediatr Hematol Oncol"},{"issue":"10","key":"pone.0349441.ref032","doi-asserted-by":"crossref","first-page":"666","DOI":"10.1002\/ajh.21515","article-title":"The course and correlates of high hospital utilization in sickle cell disease: evidence from a large, urban Medicaid managed care organization","volume":"84","author":"CP Carroll","year":"2009","journal-title":"Am J Hematol"},{"key":"pone.0349441.ref033","doi-asserted-by":"crossref","first-page":"215","DOI":"10.1300\/J045v05n03_13","article-title":"Perceptions of ethnic and cultural factors in the delivery of services in the treatment of sickle cell disease","volume":"5","author":"DE Chestnut","year":"1994","journal-title":"J Health Soc Policy"},{"issue":"1","key":"pone.0349441.ref034","doi-asserted-by":"crossref","first-page":"91","DOI":"10.3122\/jabfm.2020.01.190143","article-title":"Sickle-cell disease co-management, health care utilization, and hydroxyurea use","volume":"33","author":"N Crego","year":"2020","journal-title":"J Am Board Fam Med"},{"issue":"2","key":"pone.0349441.ref035","doi-asserted-by":"crossref","first-page":"160","DOI":"10.1097\/CNQ.0000000000000350","article-title":"Patient perspectives of sickle cell management in the emergency department","volume":"44","author":"N Crego","year":"2021","journal-title":"Crit Care Nurs Q"},{"issue":"11","key":"pone.0349441.ref036","doi-asserted-by":"crossref","first-page":"2497","DOI":"10.1007\/s00277-020-04233-w","article-title":"Clinical outcomes and healthcare utilization in patients with sickle cell disease: a nationwide cohort study of Medicaid beneficiaries","volume":"99","author":"RJ Desai","year":"2020","journal-title":"Ann Hematol"},{"issue":"5","key":"pone.0349441.ref037","doi-asserted-by":"crossref","first-page":"850","DOI":"10.1097\/00006842-200109000-00020","article-title":"Self-efficacy as a predictor of adult adjustment to sickle cell disease: one-year outcomes","volume":"63","author":"R Edwards","year":"2001","journal-title":"Psychosom Med"},{"issue":"4","key":"pone.0349441.ref038","doi-asserted-by":"crossref","first-page":"335","DOI":"10.1097\/TME.0000000000000036","article-title":"Attitudes toward patients with sickle cell disease in a multicenter sample of emergency department providers","volume":"36","author":"CE Freiermuth","year":"2014","journal-title":"Adv Emerg Nurs J"},{"issue":"6","key":"pone.0349441.ref039","doi-asserted-by":"crossref","first-page":"779","DOI":"10.7326\/M22-3272","article-title":"Distributional cost-effectiveness of equity-enhancing gene therapy in sickle cell disease in the United States","volume":"176","author":"G Goshua","year":"2023","journal-title":"Ann Intern Med"},{"issue":"6","key":"pone.0349441.ref040","doi-asserted-by":"crossref","DOI":"10.1016\/j.pedhc.2012.06.004","article-title":"A transition pilot program for adolescents with sickle cell disease","volume":"26","author":"JS Hankins","year":"2012","journal-title":"J Pediatr Health Care"},{"issue":"1","key":"pone.0349441.ref041","doi-asserted-by":"crossref","first-page":"43","DOI":"10.1111\/j.1748-0361.2000.tb00435.x","article-title":"Socioeconomic distress and health status: the urban-rural dichotomy of services utilization for people with sickle cell disorder in North Carolina","volume":"16","author":"A Haque","year":"2000","journal-title":"J Rural Health"},{"issue":"6","key":"pone.0349441.ref042","doi-asserted-by":"crossref","DOI":"10.1002\/pbc.30346","article-title":"Neurocognitive and emotional factors predict pain-related healthcare utilization in children with sickle cell disease","volume":"70","author":"SJ Hardy","year":"2023","journal-title":"Pediatr Blood Cancer"},{"issue":"1","key":"pone.0349441.ref043","doi-asserted-by":"crossref","first-page":"85","DOI":"10.1002\/ajh.21883","article-title":"Examining the characteristics and beliefs of hydroxyurea users and nonusers among adults with sickle cell disease","volume":"86","author":"C Haywood","year":"2011","journal-title":"Am J Hematol"},{"issue":"12","key":"pone.0349441.ref044","doi-asserted-by":"crossref","first-page":"1657","DOI":"10.1007\/s11606-014-2986-7","article-title":"Perceived discrimination, patient trust, and adherence to medical recommendations among persons with sickle cell disease","volume":"29","author":"C Haywood","year":"2014","journal-title":"J Gen Intern Med"},{"issue":"8","key":"pone.0349441.ref045","doi-asserted-by":"crossref","first-page":"1095","DOI":"10.1016\/j.jval.2021.02.014","article-title":"Indirect economic burden of sickle cell disease","volume":"24","author":"D Holdford","year":"2021","journal-title":"Value Health"},{"issue":"1","key":"pone.0349441.ref046","doi-asserted-by":"crossref","first-page":"500","DOI":"10.1186\/s12913-023-09383-x","article-title":"Understanding caregiver burden with accessing sickle cell care in the Midwest and their perspective on telemedicine","volume":"23","author":"SA Jacob","year":"2023","journal-title":"BMC Health Serv Res"},{"issue":"3","key":"pone.0349441.ref047","doi-asserted-by":"crossref","first-page":"300","DOI":"10.1007\/s12529-016-9538-y","article-title":"The association between educational attainment and patterns of emergency department utilization among adults with sickle cell disease","volume":"23","author":"CR Jonassaint","year":"2016","journal-title":"Int J Behav Med"},{"issue":"3","key":"pone.0349441.ref048","first-page":"131","article-title":"Parental perception of quality of hospital care for children with sickle cell disease","volume":"107","author":"J Kam","year":"2008","journal-title":"WMJ"},{"issue":"5","key":"pone.0349441.ref049","doi-asserted-by":"crossref","DOI":"10.1001\/jamanetworkopen.2020.6016","article-title":"Perceptions of US adolescents and adults with sickle cell disease on their quality of care","volume":"3","author":"J Kanter","year":"2020","journal-title":"JAMA Netw Open"},{"issue":"2","key":"pone.0349441.ref050","doi-asserted-by":"crossref","first-page":"382","DOI":"10.1353\/hpu.2007.0036","article-title":"Hurricane Katrina\u2019s impact on pediatric and adult patients with sickle cell disease","volume":"18","author":"NA Karras","year":"2007","journal-title":"J Health Care Poor Underserved"},{"issue":"11","key":"pone.0349441.ref051","doi-asserted-by":"crossref","first-page":"814","DOI":"10.1016\/j.ijmedinf.2014.08.003","article-title":"Does e-pain plan improve management of sickle cell disease associated vaso-occlusive pain crisis? a mixed methods evaluation","volume":"83","author":"Y-C Kato-Lin","year":"2014","journal-title":"Int J Med Inform"},{"key":"pone.0349441.ref052","article-title":"Utilization of the emergency department during COVID19 pandemic in pediatric sickle cell center","volume":"68","author":"A Kirsch","year":"2021","journal-title":"Pediatric Blood Cancer"},{"issue":"8","key":"pone.0349441.ref053","first-page":"968","article-title":"Provider barriers to hydroxyurea use in adults with sickle cell disease: a survey of the sickle cell disease adult provider network","volume":"100","author":"S Lanzkron","year":"2008","journal-title":"J Natl Med Assoc"},{"issue":"4","key":"pone.0349441.ref054","doi-asserted-by":"crossref","first-page":"1114","DOI":"10.1353\/hpu.2010.0940","article-title":"Problematic hospital experiences among adult patients with sickle cell disease","volume":"21","author":"L Lattimer","year":"2010","journal-title":"J Health Care Poor Underserved"},{"key":"pone.0349441.ref055","doi-asserted-by":"crossref","DOI":"10.1016\/j.annemergmed.2020.08.013","article-title":"A survey-based needs assessment of barriers to optimal sickle cell disease care in the emergency department","volume":"76","author":"EA Linton","year":"2020","journal-title":"Ann Emerg Med"},{"issue":"1","key":"pone.0349441.ref056","doi-asserted-by":"crossref","first-page":"55","DOI":"10.1186\/s12913-020-06055-y","article-title":"Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives","volume":"21","author":"S Loo","year":"2021","journal-title":"BMC Health Serv Res"},{"key":"pone.0349441.ref057","doi-asserted-by":"crossref","first-page":"853835","DOI":"10.1155\/2015\/853835","article-title":"Attitudes toward management of sickle cell disease and its complications: a national survey of academic family physicians","volume":"2015","author":"AG Mainous","year":"2015","journal-title":"Anemia"},{"issue":"5","key":"pone.0349441.ref058","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0216414","article-title":"Barriers and facilitators to care for individuals with sickle cell disease in central North Carolina: the emergency department providers\u2019 perspective","volume":"14","author":"RV Masese","year":"2019","journal-title":"PLoS One"},{"issue":"1","key":"pone.0349441.ref059","doi-asserted-by":"crossref","first-page":"353","DOI":"10.1353\/hpu.2020.0027","article-title":"Engaging individuals with sickle cell disease in patient-centered outcomes research: a community health ambassador training model","volume":"31","author":"TL Mayo-Gamble","year":"2020","journal-title":"J Health Care Poor Underserved"},{"issue":"1","key":"pone.0349441.ref060","doi-asserted-by":"crossref","first-page":"88","DOI":"10.1016\/j.ajem.2017.07.037","article-title":"Opioid doses and acute care utilization outcomes for adults with sickle cell disease: ED versus acute care unit","volume":"36","author":"RE Molokie","year":"2018","journal-title":"Am J Emerg Med"},{"issue":"8","key":"pone.0349441.ref061","doi-asserted-by":"crossref","first-page":"858","DOI":"10.1093\/jpepsy\/jsaa035","article-title":"Racism and health-related quality of life in pediatric sickle cell disease: roles of depression and support","volume":"45","author":"I Mougianis","year":"2020","journal-title":"J Pediatr Psychol"},{"issue":"4","key":"pone.0349441.ref062","doi-asserted-by":"crossref","first-page":"345","DOI":"10.1016\/j.jtct.2021.01.022","article-title":"A qualitative analysis of state medicaid coverage benefits for allogeneic hematopoietic cell transplantation (alloHCT) for patients with sickle cell disease (SCD)","volume":"27","author":"TG Mupfudze","year":"2021","journal-title":"Transplant Cell Ther"},{"issue":"8","key":"pone.0349441.ref063","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2021-057361","article-title":"Inpatient palliative care use by patients with sickle cell disease: a retrospective cross-sectional study","volume":"12","author":"E Nwogu-Onyemkpa","year":"2022","journal-title":"BMJ Open"},{"issue":"4","key":"pone.0349441.ref064","doi-asserted-by":"crossref","first-page":"685","DOI":"10.1002\/pbc.24028","article-title":"Concentration of hospital care for acute sickle cell disease-related visits","volume":"59","author":"JA Panepinto","year":"2012","journal-title":"Pediatr Blood Cancer"},{"issue":"10","key":"pone.0349441.ref065","doi-asserted-by":"crossref","first-page":"1820","DOI":"10.1111\/j.1537-2995.2007.01398.x","article-title":"Clinical and economic burden of infused iron chelation therapy in the United States","volume":"47","author":"KA Payne","year":"2007","journal-title":"Transfusion"},{"issue":"6","key":"pone.0349441.ref066","doi-asserted-by":"crossref","first-page":"3249","DOI":"10.1007\/s40615-023-01780-6","article-title":"\u201cThe patient should have a choice\u201d: adults with sickle cell disease advise integration of telemedicine into the comprehensive sickle cell disease care model","volume":"11","author":"LH Pecker","year":"2024","journal-title":"J Racial Ethn Health Disparities"},{"issue":"4","key":"pone.0349441.ref067","doi-asserted-by":"crossref","DOI":"10.1111\/jspn.12353","article-title":"The health literacy disparity in adolescents with sickle cell disease","volume":"26","author":"E Perry Caldwell","year":"2021","journal-title":"J Spec Pediatr Nurs"},{"issue":"11","key":"pone.0349441.ref068","doi-asserted-by":"crossref","first-page":"1701","DOI":"10.1007\/s00431-020-03656-x","article-title":"Acute care utilization in pediatric sickle cell disease and sickle cell trait in the USA: prevalence, temporal trends, and cost","volume":"179","author":"EE Peterson","year":"2020","journal-title":"Eur J Pediatr"},{"issue":"3","key":"pone.0349441.ref069","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0265342","article-title":"Perspectives of individuals with sickle cell disease on barriers to care","volume":"17","author":"S Phillips","year":"2022","journal-title":"PLoS One"},{"issue":"1","key":"pone.0349441.ref070","doi-asserted-by":"crossref","DOI":"10.1002\/pbc.28006","article-title":"Universal screening for social determinants of health in pediatric sickle cell disease: a quality-improvement initiative","volume":"67","author":"A Power-Hays","year":"2020","journal-title":"Pediatr Blood Cancer"},{"issue":"2","key":"pone.0349441.ref071","first-page":"157","article-title":"Association of care in a medical home and health care utilization among children with sickle cell disease","volume":"105","author":"JL Raphael","year":"2013","journal-title":"J Natl Med Assoc"},{"issue":"2","key":"pone.0349441.ref072","doi-asserted-by":"crossref","first-page":"272","DOI":"10.1016\/j.pec.2009.01.007","article-title":"Health care provider attitudes toward patients with acute vaso-occlusive crisis due to sickle cell disease: development of a scale","volume":"76","author":"N Ratanawongsa","year":"2009","journal-title":"Patient Educ Couns"},{"issue":"4","key":"pone.0349441.ref073","first-page":"209","article-title":"Barriers and facilitators to chronic red cell transfusion therapy in pediatric sickle cell anemia","volume":"39","author":"AM Schlenz","year":"2022","journal-title":"J Pediatr Hematol Oncol Nurs"},{"issue":"1","key":"pone.0349441.ref074","doi-asserted-by":"crossref","first-page":"155","DOI":"10.1186\/s12955-019-1225-7","article-title":"Treatment patterns and economic burden of sickle-cell disease patients prescribed hydroxyurea: a retrospective claims-based study","volume":"17","author":"N Shah","year":"2019","journal-title":"Health Qual Life Outcomes"},{"issue":"1","key":"pone.0349441.ref075","doi-asserted-by":"crossref","first-page":"66","DOI":"10.1002\/pbc.21066","article-title":"Impact of proximity to comprehensive sickle cell center on utilization of healthcare services among children with sickle cell disease","volume":"50","author":"SM Shankar","year":"2008","journal-title":"Pediatr Blood Cancer"},{"key":"pone.0349441.ref076","doi-asserted-by":"crossref","first-page":"243","DOI":"10.1300\/J045v05n03_14","article-title":"Sickle cell mutual assistance groups and the health services delivery system","volume":"5","author":"B Shelley","year":"1994","journal-title":"J Health Soc Policy"},{"issue":"3","key":"pone.0349441.ref077","doi-asserted-by":"crossref","first-page":"261","DOI":"10.1016\/j.pmn.2018.10.002","article-title":"Acceptability and feasibility of a mindfulness-based intervention for pain catastrophizing among persons with sickle cell disease","volume":"20","author":"LA Simmons","year":"2019","journal-title":"Pain Manag Nurs"},{"issue":"3","key":"pone.0349441.ref078","doi-asserted-by":"crossref","first-page":"335","DOI":"10.5811\/westjem.2016.11.32273","article-title":"A patient-centered emergency department management strategy for sickle-cell disease super-utilizers","volume":"18","author":"GG Simpson","year":"2017","journal-title":"West J Emerg Med"},{"issue":"11","key":"pone.0349441.ref079","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2021-050880","article-title":"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","volume":"11","author":"MP Smeltzer","year":"2021","journal-title":"BMJ Open"},{"issue":"5","key":"pone.0349441.ref080","doi-asserted-by":"crossref","first-page":"419","DOI":"10.1111\/j.1553-2712.2007.tb01801.x","article-title":"Emergency department management of acute pain episodes in sickle cell disease","volume":"14","author":"P Tanabe","year":"2007","journal-title":"Acad Emerg Med"},{"key":"pone.0349441.ref081","doi-asserted-by":"crossref","first-page":"101766","DOI":"10.1016\/j.ejon.2020.101766","article-title":"\u201cDifficult patients\u201d in the advanced stages of cancer as experienced by nursing staff: a descriptive qualitative study","volume":"46","author":"R Dobrina","year":"2020","journal-title":"Eur J Oncol Nurs"},{"issue":"8","key":"pone.0349441.ref082","doi-asserted-by":"crossref","first-page":"3543","DOI":"10.1007\/s12325-023-02545-7","article-title":"Economic and clinical burden of managing sickle cell disease with recurrent vaso-occlusive crises in the United States","volume":"40","author":"C Udeze","year":"2023","journal-title":"Adv Ther"},{"issue":"8","key":"pone.0349441.ref083","doi-asserted-by":"crossref","first-page":"976","DOI":"10.1093\/jamia\/ocy036","article-title":"Technology use and preferences to support clinical practice guideline awareness and adherence in individuals with sickle cell disease","volume":"25","author":"A Utrankar","year":"2018","journal-title":"J Am Med Inform Assoc"},{"issue":"7","key":"pone.0349441.ref084","doi-asserted-by":"crossref","first-page":"779","DOI":"10.1093\/jpepsy\/jsy015","article-title":"Describing perceived racial bias among youth with sickle cell disease","volume":"43","author":"EO Wakefield","year":"2018","journal-title":"J Pediatr Psychol"},{"issue":"1","key":"pone.0349441.ref085","doi-asserted-by":"crossref","first-page":"55","DOI":"10.1016\/j.pedn.2015.09.011","article-title":"Caregiver perspectives of stigma associated with sickle cell disease in adolescents","volume":"31","author":"KM Wesley","year":"2016","journal-title":"J Pediatr Nurs"},{"issue":"1","key":"pone.0349441.ref086","first-page":"18","article-title":"Patient-reported outcomes: descriptors of nociceptive and neuropathic pain and barriers to effective pain management in adult outpatients with sickle cell disease","volume":"102","author":"DJ Wilkie","year":"2010","journal-title":"J Natl Med Assoc"},{"issue":"1","key":"pone.0349441.ref087","doi-asserted-by":"crossref","first-page":"88","DOI":"10.1080\/19371918.2014.938396","article-title":"Challenges and resilience in the lives of adults with sickle cell disease","volume":"30","author":"B Williams-Gray","year":"2015","journal-title":"Soc Work Public Health"},{"issue":"3","key":"pone.0349441.ref088","doi-asserted-by":"crossref","first-page":"274","DOI":"10.1001\/jama.2021.10161","article-title":"Prescription drug monitoring program mandates and opioids dispensed following emergency department encounters for patients with sickle cell disease or cancer with bone metastasis","volume":"326","author":"H Zhang","year":"2021","journal-title":"Jama"},{"issue":"1","key":"pone.0349441.ref089","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1016\/S0033-3549(04)50214-5","article-title":"Rural\/urban differences in access to and utilization of services among people in Alabama with sickle cell disease","volume":"118","author":"J Telfair","year":"2003","journal-title":"Public Health Rep"},{"key":"pone.0349441.ref090","unstructured":"Health LDo. Barriers to health fact sheet. https:\/\/ldh.la.gov\/assets\/cphe\/Barriers_Health.pdf"},{"key":"pone.0349441.ref091","author":"WW LaMorte","year":"2022"},{"issue":"1","key":"pone.0349441.ref092","doi-asserted-by":"crossref","first-page":"1964","DOI":"10.1186\/s12889-022-14385-1","article-title":"Barriers and facilitators of domain-specific physical activity: a systematic review of reviews","volume":"22","author":"L Garcia","year":"2022","journal-title":"BMC Public Health"},{"issue":"1","key":"pone.0349441.ref093","doi-asserted-by":"crossref","first-page":"65","DOI":"10.17269\/s41997-019-00268-3","article-title":"Making sense of what exactly public health does: a typology of public health interventions","volume":"111","author":"E Litvak","year":"2020","journal-title":"Can J Public Health"},{"issue":"3","key":"pone.0349441.ref094","doi-asserted-by":"crossref","first-page":"215","DOI":"10.1111\/ejh.13789","article-title":"Development and validation of the sickle cell stress scale-adult","volume":"109","author":"WR Smith","year":"2022","journal-title":"Eur J Haematol"},{"key":"pone.0349441.ref095","first-page":"909","article-title":"Health Care Utilization.","volume-title":"Gellman MD, Turner JR, editors. Encyclopedia of behavioral medicine","author":"O Carrasquillo","year":"2013"},{"key":"pone.0349441.ref096","author":"WW LaMorte","year":"2022"},{"issue":"3","key":"pone.0349441.ref097","doi-asserted-by":"crossref","first-page":"277","DOI":"10.1177\/0095798499025003002","article-title":"The social and cultural context of coping with sickle cell disease: i. a review of biomedical and psychosocial issues","volume":"25","author":"OA Barbarin","year":"1999","journal-title":"J Black Psychol"},{"issue":"1","key":"pone.0349441.ref098","doi-asserted-by":"crossref","first-page":"967","DOI":"10.1186\/s12889-018-5877-8","article-title":"Tailoring lifestyle interventions to low socio-economic populations: a qualitative study","volume":"18","author":"N Coupe","year":"2018","journal-title":"BMC Public Health"}],"container-title":["PLOS One"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0349441","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,6]],"date-time":"2026-07-06T17:56:28Z","timestamp":1783360588000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0349441"}},"subtitle":[],"editor":[{"given":"James","family":"Mockridge","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2026,7,6]]},"references-count":98,"journal-issue":{"issue":"7","published-online":{"date-parts":[[2026,7,6]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0349441","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7,6]]}}}