{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,20]],"date-time":"2026-08-20T16:40:52Z","timestamp":1787244052835,"version":"build-2736575974"},"reference-count":55,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2017,8,11]],"date-time":"2017-08-11T00:00:00Z","timestamp":1502409600000},"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":[[2017,8,29]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>There is no cure for Duchenne Muscular Dystrophy (DMD); treatment is symptomatic and corticosteroids slow the progression. Side effects of corticosteroids \u2013 especially the physical effects \u2013 have been described, however patients\u2019 and caregivers perception on chronic corticosteroid treatment and their side effects is less well known, in particular with regards to cognition, behaviour, and emotional functioning.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>The primary aim of this pilot study was to (i) construct a self-report questionnaire to assess the perceived benefits and side effects of corticosteroids for patients with DMD and their parents. Furthermore we aimed to (ii) investigate the psychometric qualities of this questionnaire, (iii) whether there was a difference between parents\u2019 and patient\u2019s perceptions, and finally (iv) to what extent reported side effects may alter over time.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>A 23-item questionnaire (SIDECORT: side effect of corticosteroids) was constructed to assess the perception of these benefits and side effects in a systematic manner.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>In total, 86 patients (aged 5 \u2013 28 years) and 125 of their parents completed the questionnaire. Internal consistency was good. Using factor analyses on the side effect items as reported by parents, two underlying factors were found, with the first factor describing cognitive, behavioural and emotional functioning, and the second factor describing physical functioning. The potential benefits of corticosteroids were highly rated among both parents and patients, although parents rated the importance of the benefits higher than their sons ( p\u200a=\u200a0.002). Similarly, parents rated the severity of the side effects generally higher than their sons ( p\u200a=\u200a0.011), especially with regards to the physical side effects ( p\u200a=\u200a0.014). Based on the parent\u2019s perception, the neurodevelopmental side effects generally appeared to decline the longer corticosteroids were used.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>To our knowledge, this is the first explicit study on perceived cognitive-, behavioural-, and emotional side effects and the allocation of benefits to corticosteroids in DMD. On the basis of our research we suggest a short form questionnaire, which proves to be reliable and valid for research- and clinical practice. This questionnaire could provide useful insights for the care of boys and men with DMD.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3233\/jnd-170223","type":"journal-article","created":{"date-parts":[[2017,8,11]],"date-time":"2017-08-11T11:31:27Z","timestamp":1502451087000},"page":"217-236","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":14,"title":["Development of a New Self-Reporting Instrument Measuring Benefits and Side Effects of Corticosteroids in Duchenne Muscular Dystrophy: Report from a Pilot Study"],"prefix":"10.1177","volume":"4","author":[{"given":"Ruben G.F.","family":"Hendriksen","sequence":"first","affiliation":[{"name":"Department of Neurology, Maastricht University Medical Center, Maastricht, The Netherlands"},{"name":"School for Mental Health & Neuroscience, Maastricht University, Maastricht, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judith M.","family":"Lionarons","sequence":"additional","affiliation":[{"name":"Department of Neurology, Maastricht University Medical Center, Maastricht, The Netherlands"},{"name":"School for Mental Health & Neuroscience, Maastricht University, Maastricht, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jos G.M.","family":"Hendriksen","sequence":"additional","affiliation":[{"name":"Department of Neurology, Maastricht University Medical Center, Maastricht, The Netherlands"},{"name":"Center for Neurological Learning Disabilities, Kempenhaeghe, Heeze, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johan S.H.","family":"Vles","sequence":"additional","affiliation":[{"name":"Department of Neurology, Maastricht University Medical Center, Maastricht, The Netherlands"},{"name":"School for Mental Health & Neuroscience, Maastricht University, Maastricht, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura C.","family":"McAdam","sequence":"additional","affiliation":[{"name":"Holland Bloorview Kids Rehabilitation Hospital, Bloorview Research Institute, Toronto, Canada"},{"name":"Department of Pediatrics, University of Toronto, Toronto, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"W. Douglas","family":"Biggar","sequence":"additional","affiliation":[{"name":"Holland Bloorview Kids Rehabilitation Hospital, Bloorview Research Institute, Toronto, Canada"},{"name":"Department of Pediatrics, University of Toronto, Toronto, Canada"},{"name":"Hospital for Sick Children, Toronto, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2017,8,11]]},"reference":[{"key":"ref001","doi-asserted-by":"publisher","DOI":"10.1093\/brain\/awf012"},{"key":"ref002","doi-asserted-by":"publisher","DOI":"10.1093\/med\/9780199681488.001.0001"},{"key":"ref003","doi-asserted-by":"publisher","DOI":"10.1002\/ana.23528"},{"key":"ref004","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(02)07815-7"},{"key":"ref005","doi-asserted-by":"publisher","DOI":"10.1152\/physrev.00028.2001"},{"key":"ref006","doi-asserted-by":"publisher","DOI":"10.1016\/0960-8966(96)00357-4"},{"key":"ref007","doi-asserted-by":"crossref","unstructured":"HoudeS, FiliatraultM, FournierA, DubeJ, D\u2019ArcyS, BerubeD, et al. 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