{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,6]],"date-time":"2026-04-06T10:49:20Z","timestamp":1775472560553,"version":"3.50.1"},"reference-count":23,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2021,12,7]],"date-time":"2021-12-07T00:00:00Z","timestamp":1638835200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Respir Care"],"published-print":{"date-parts":[[2022,3]]},"abstract":"<jats:sec>\n                    <jats:title>BACKGROUND:<\/jats:title>\n                    <jats:p>Duchenne muscular dystrophy (DMD) is a devastating, progressive neuromuscular disease that results in cardiopulmonary failure and death. In 2018, the DMD Care Considerations guidelines were updated to improve the multidisciplinary approach to care and promote early respiratory management. We sought to evaluate the impact of a multidisciplinary clinic on access to pulmonary care and adherence to respiratory care guidelines.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>METHODS:<\/jats:title>\n                    <jats:p>Utilizing retrospective data, we assessed for pulmonary care between 2016\u20132019 and congruence with guidelines from March 2018\u2013February 2019. Using a standardized visit protocol, subjects were monitored for adherence to pulmonary function testing (PFT) and polysomnography (PSG) recommendations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>RESULTS:<\/jats:title>\n                    <jats:p>\n                      Of the 84 subjects with DMD, only 51.2% had prior pulmonary involvement, and approximately one-third were seen in the year prior to clinic onset. Only 23% of subjects with a pulmonary referral completed this visit. After clinic initiation, the average age of a subject\u2019s first pulmonary contact decreased from 11.8 y to 7.9 y (\n                      <jats:italic toggle=\"yes\">P<\/jats:italic>\n                      &lt; .001), and 45% of the 77 unique clinic subjects had no previous pulmonary encounter. Adherence to PFT guidelines increased in both ambulatory (8.7% to 86.1%) and non-ambulatory subjects (25.9% to 90.1%). Approximately 79% of subjects seen in clinic either completed or had an order for PSG in the last 12 months.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>CONCLUSIONS:<\/jats:title>\n                    <jats:p>Development of a multispecialty clinic expanded access to pulmonary care and evaluation in subjects with DMD. Continued care in this clinic will allow a better understanding of barriers to access and the opportunity to monitor long-term pulmonary health.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.4187\/respcare.09502","type":"journal-article","created":{"date-parts":[[2021,12,7]],"date-time":"2021-12-07T15:05:35Z","timestamp":1638889535000},"page":"347-352","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":4,"title":["Improving Access and Guideline Adherence in Pulmonary Care in Patients With Duchenne Muscular Dystrophy"],"prefix":"10.1177","volume":"67","author":[{"given":"Jacob A","family":"Kaslow","sequence":"first","affiliation":[{"name":"Department of Pediatrics, Division of Pediatric Pulmonary, Vanderbilt University Medical Center, Nashville, Tennessee."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jonathan H","family":"Soslow","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Pediatric Cardiology, Vanderbilt University Medical Center, Nashville, Tennessee."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"William B","family":"Burnette","sequence":"additional","affiliation":[{"name":"Division of Pediatric Neurology, Vanderbilt University Medical Center, Nashville, Tennessee."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Frank J","family":"Raucci","sequence":"additional","affiliation":[{"name":"Division of Pediatric Cardiology, Department of Pediatrics, Children's Hospital of Richmond at Virginia Commonwealth University, Richmond, Virginia."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tracy J","family":"Hills","sequence":"additional","affiliation":[{"name":"Division of Pediatric Hospital Medicine, Section of Hospice and Palliative Medicine, Vanderbilt University Medical Center, Nashville, Tennessee."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michaela G","family":"Ibach","sequence":"additional","affiliation":[{"name":"Division of Pediatric Hospital Medicine, Section of Hospice and Palliative Medicine, Vanderbilt University Medical Center, Nashville, Tennessee."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rita C","family":"Hebblethwaite","sequence":"additional","affiliation":[{"name":"Nutrition Clinic, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, Tennessee."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kara M","family":"Arps","sequence":"additional","affiliation":[{"name":"Department of Pediatric Rehabilitation Services, Vanderbilt University Medical Center, Nashville, Tennessee."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andrew G","family":"Sokolow","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Pediatric Pulmonary, Vanderbilt University Medical Center, Nashville, Tennessee."}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2021,12,7]]},"reference":[{"key":"e_1_3_2_2_2","doi-asserted-by":"publisher","DOI":"10.1016\/0960-8966(91)90039-U"},{"issue":"3","key":"e_1_3_2_3_2","first-page":"14","article-title":"E. Dystrophin and the two related genetic diseases, Duchenne and Becker muscular dystrophies","volume":"15","author":"Rumeur L","year":"2015","unstructured":"Rumeur L. E. Dystrophin and the two related genetic diseases, Duchenne and Becker muscular dystrophies. Bosn J Basic Med Sci, 2015; 15(3):14-20.","journal-title":"Bosn J Basic Med Sci"},{"key":"e_1_3_2_4_2","doi-asserted-by":"publisher","DOI":"10.1097\/00002060-199509001-00003"},{"issue":"2","key":"e_1_3_2_5_2","first-page":"121","article-title":"Improvement of survival in Duchenne muscular dystrophy: retrospective analysis of 835 patients","volume":"31","author":"Passamano L","year":"2012","unstructured":"Passamano L, , Taglia A, , Palladino A, , Viggiano E, , D'Ambrosio P, , Scutifero M, et al. Improvement of survival in Duchenne muscular dystrophy: retrospective analysis of 835 patients. Acta Myol, 2012; 31(2):121-125.","journal-title":"Acta Myol"},{"key":"e_1_3_2_6_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ccm.2018.01.011"},{"key":"e_1_3_2_7_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2018.07.004"},{"key":"e_1_3_2_8_2","doi-asserted-by":"publisher","DOI":"10.1097\/PHM.0000000000000074"},{"key":"e_1_3_2_9_2","doi-asserted-by":"publisher","DOI":"10.1378\/chest.118.5.1390"},{"key":"e_1_3_2_10_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2010.09.006"},{"key":"e_1_3_2_11_2","doi-asserted-by":"publisher","DOI":"10.1164\/rccm.200307-885ST"},{"key":"e_1_3_2_12_2","doi-asserted-by":"publisher","DOI":"10.1007\/s00408-005-2584-x"},{"key":"e_1_3_2_13_2","doi-asserted-by":"publisher","DOI":"10.1183\/09031936.03.00029803"},{"key":"e_1_3_2_14_2","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000251299.54608.13"},{"key":"e_1_3_2_15_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(18)30024-3"},{"key":"e_1_3_2_16_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejpn.2011.07.001"},{"key":"e_1_3_2_17_2","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.22548"},{"key":"e_1_3_2_18_2","doi-asserted-by":"publisher","DOI":"10.4187\/respcare.04676"},{"key":"e_1_3_2_19_2","doi-asserted-by":"publisher","DOI":"10.1164\/rccm.166.4.518"},{"key":"e_1_3_2_20_2","first-page":"1475","article-title":"Assessment and management of respiratory function in patients with Duchenne muscular dystrophy: current and emerging options","volume":"11","author":"LoMauro A","year":"2015","unstructured":"LoMauro A, , D'Angelo MG, , Aliverti A. Assessment and management of respiratory function in patients with Duchenne muscular dystrophy: current and emerging options. Ther Clin Risk Manag, 2015; 11:1475-1488.","journal-title":"Ther Clin Risk Manag"},{"key":"e_1_3_2_21_2","doi-asserted-by":"publisher","DOI":"10.5664\/jcsm.5898"},{"key":"e_1_3_2_22_2","first-page":"2","article-title":"Sleep-disordered breathing in Duchenne muscular dystrophy","volume":"30","author":"Sawnani H","year":"2019","unstructured":"Sawnani H. Sleep-disordered breathing in Duchenne muscular dystrophy. Paediatr Respir Rev, 2019; 30:2-8.","journal-title":"Paediatr Respir Rev"},{"key":"e_1_3_2_23_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1440-1754.2005.00691.x"},{"key":"e_1_3_2_24_2","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6947-8-38"}],"container-title":["Respiratory Care"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.4187\/respcare.09502","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.4187\/respcare.09502","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.4187\/respcare.09502","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,6]],"date-time":"2026-04-06T09:38:53Z","timestamp":1775468333000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.4187\/respcare.09502"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,12,7]]},"references-count":23,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2022,3]]}},"alternative-id":["10.4187\/respcare.09502"],"URL":"https:\/\/doi.org\/10.4187\/respcare.09502","relation":{},"ISSN":["0020-1324"],"issn-type":[{"value":"0020-1324","type":"print"}],"subject":[],"published":{"date-parts":[[2021,12,7]]}}}