{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T01:10:14Z","timestamp":1777857014254,"version":"3.51.4"},"reference-count":25,"publisher":"SAGE Publications","issue":"6","license":[{"start":{"date-parts":[[2021,6,10]],"date-time":"2021-06-10T00:00:00Z","timestamp":1623283200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2021,6,10]],"date-time":"2021-06-10T00:00:00Z","timestamp":1623283200000},"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":["Journal of Neuromuscular Diseases"],"published-print":{"date-parts":[[2021,6,10]]},"abstract":"<jats:sec specific-use=\"heading-level-1\">\n                    <jats:title>Background and objective:<\/jats:title>\n                    <jats:p>To optimize care for patients with DMD, it is essential to know to what extent current care complies with the recommended monitoring frequencies suggested by the DMD care considerations. The objective of this study was to investigate the current care for patients with DMD in the Netherlands and to what extent the care complies with the international care considerations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec specific-use=\"heading-level-1\">\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>A cross-sectional questionnaire was carried out among the Dutch DMD patients and caregivers about the patients\u2019 functional and health status, visits to healthcare professionals, clinical tests and assessments, therapy, medication use and access to medical aids and devices. Compliance to guidelines was defined by comparing the frequency of visits to health care providers and clinical tests with the recommended frequencies derived from the care considerations of 2010.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec specific-use=\"heading-level-1\">\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Eighty-four participants completed the questionnaire. The majority of participants met the recommended visit frequencies to a neuromuscular specialist and cardiologist. Compliance was suboptimal for respiratory assessments in the non-ambulatory phase, monitoring of side effects of corticosteroid use and neuromuscular assessments. Disease specific information supply was perceived as sufficient and participants were satisfied with the received care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec specific-use=\"heading-level-1\">\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>This study identifies areas in which compliance is lacking. Countries, such as the Netherlands, working according to a shared care system require easy and low-threshold communication between health care centers and a clear division of roles and responsibilities to reach optimal compliance. In the Netherlands the Duchenne Center Netherlands has the coordinating role.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3233\/jnd-210670","type":"journal-article","created":{"date-parts":[[2021,6,11]],"date-time":"2021-06-11T10:43:47Z","timestamp":1623408227000},"page":"927-938","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":5,"title":["Compliance to DMD Care Considerations in the Netherlands"],"prefix":"10.1177","volume":"8","author":[{"given":"Lotte","family":"Heutinck","sequence":"first","affiliation":[{"name":"Radboud University Nijmegen Medical Center","place":["The Netherlands"]},{"name":"Leiden University Medical Center","place":["The Netherlands"]},{"name":"Kempenhaeghe Center for Neurological Learning Disabilities","place":["The Netherlands"]},{"name":"Radboud University Medical Center","place":["The Netherlands"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Saskia L.S.","family":"Houwen-van Opstal","sequence":"additional","affiliation":[{"name":"Radboud University Nijmegen Medical Center","place":["The Netherlands"]},{"name":"Leiden University Medical Center","place":["The Netherlands"]},{"name":"Kempenhaeghe Center for Neurological Learning Disabilities","place":["The Netherlands"]},{"name":"Radboud University Medical Center","place":["The Netherlands"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Yvonne D.","family":"Krom","sequence":"additional","affiliation":[{"name":"Leiden University Medical Center","place":["The Netherlands"]},{"name":"Leiden University Medical Center","place":["The Netherlands"]},{"name":"Kempenhaeghe Center for Neurological Learning Disabilities","place":["The Netherlands"]},{"name":"Radboud University Medical Center","place":["The Netherlands"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Erik H.","family":"Niks","sequence":"additional","affiliation":[{"name":"Leiden University 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Clinical management of Duchenne muscular dystrophy in the Netherlands: Barriers to and proposals for the implementation of the international clinical practice guidelines. J Neuromuscul Dis. 2021; doi: 10.3233\/JND-200586. Online ahead of print. 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