{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,21]],"date-time":"2026-07-21T22:30:12Z","timestamp":1784673012360,"version":"3.55.0"},"reference-count":39,"publisher":"Cambridge University Press (CUP)","issue":"5","license":[{"start":{"date-parts":[[2016,9,27]],"date-time":"2016-09-27T00:00:00Z","timestamp":1474934400000},"content-version":"unspecified","delay-in-days":26,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Can. J. Neurol. Sci."],"published-print":{"date-parts":[[2016,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p><jats:bold><jats:italic>Background:<\/jats:italic><\/jats:bold> Patient-centered care for individuals with myotonic dystrophy (DM1) and Huntington\u2019s disease (HD)\u2014chronic, progressive, and life-limiting neurological conditions\u2014may be challenged by patients\u2019 cognitive and behavioral impairments. However, no research has explored health care providers\u2019 (HCPs\u2019) perspectives about patient-centered care provision for these patients along their disease trajectory. <jats:bold><jats:italic>Methods:<\/jats:italic><\/jats:bold> Constructivist grounded theory informed the iterative data collection and analysis process. Eleven DM1 or HD HCPs participated in semistructured interviews, and three stages of coding were used to analyze their interview transcripts. Codes were collapsed into themes and categories.<jats:bold><jats:italic>Results:<\/jats:italic><\/jats:bold> Three categories including <jats:italic>an evolving care approach, fluid roles<\/jats:italic>, and <jats:italic>making a difference<\/jats:italic> were identified. Participants described that their clinical care approach evolved depending on the patient\u2019s disease stage and caregivers\u2019 degree of involvement. HCPs described that their main goal was to provide hope to patients and caregivers through medical management, crisis prevention, support, and advocacy. Despite the lack of curative treatments, HCPs perceived that patients benefited from ongoing clinical care provided by proactive clinicians. <jats:bold><jats:italic>Conclusions:<\/jats:italic><\/jats:bold> Providing care for individuals with DM1 and HD is a balancing act. HCPs must strike a balance between (1) the frustrations and rewards of patient-centered care provision, (2) addressing symptoms and preventing and managing crises while focusing on patients\u2019 and caregivers\u2019 quality of life concerns, and (3) advocating for patients while addressing caregivers\u2019 needs. This raises important questions: Is patient-centered care possible for patients with cognitive decline? Does chronic neurological care need to evolve to better address patients\u2019 and caregivers\u2019 complex needs?<\/jats:p>","DOI":"10.1017\/cjn.2016.257","type":"journal-article","created":{"date-parts":[[2016,9,27]],"date-time":"2016-09-27T08:40:55Z","timestamp":1474965655000},"page":"678-686","source":"Crossref","is-referenced-by-count":5,"title":["Myotonic Dystrophy and Huntington\u2019s Disease Care: \u201cWe Like to Think We\u2019re Making a Difference\u201d"],"prefix":"10.1017","volume":"43","author":[{"given":"Kori A.","family":"LaDonna","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher J.","family":"Watling","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan L.","family":"Ray","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine","family":"Piechowicz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shannon L.","family":"Venance","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"56","published-online":{"date-parts":[[2016,9,27]]},"reference":[{"key":"S0317167116002572_ref12","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2004.12.003"},{"key":"S0317167116002572_ref5","doi-asserted-by":"publisher","DOI":"10.1017\/S1478951511000393"},{"key":"S0317167116002572_ref9","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2008.158261"},{"key":"S0317167116002572_ref31","unstructured":"America HsDSo. 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