Myotonic Dystrophy and Huntington's Disease Care: "We Like to Think We're Making a Difference".
BACKGROUND
Patient-centered care for individuals with myotonic dystrophy (DM1) and Huntington's disease (HD)-chronic, progressive, and life-limiting neurological conditions-may be challenged by patients' cognitive and behavioral impairments. However, no research has explored health care providers' (HCPs') perspectives about patient-centered care provision for these patients along their disease trajectory.


METHODS
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.


RESULTS
Three categories including an evolving care approach, fluid roles, and making a difference were identified. Participants described that their clinical care approach evolved depending on the patient's disease stage and caregivers' 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.


CONCLUSIONS
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' and caregivers' quality of life concerns, and (3) advocating for patients while addressing caregivers' 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' and caregivers' complex needs?
1Centre for Education Research & Innovation,Schulich School of Medicine & Dentistry,Western University,London,Ontario,Canada.
Kori A
KA
LaDonna
1Centre for Education Research & Innovation,Schulich School of Medicine & Dentistry,Western University,London,Ontario,Canada.
Christopher J
CJ
Watling
2Faculty of Health Sciences,Western University,Arthur Labatt Family School of Nursing,London,Ontario,Canada.
Susan L
SL
Ray
3Clinical Neurological Sciences,London Health Sciences Centre-University Hospital,London,Ontario,Canada.
Christine
C
Piechowicz
4Clinical Neurological Sciences,Schulich School of Medicine & Dentistry,Western University and London Health Sciences Centre-University Hospital,London,Ontario,Canada.
Shannon L
SL
Venance
D017028:Caregivers / Q000523:psychology*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D006816:Huntington Disease / Q000451:nursing* / Q000523:psychology*; D007407:Interviews as Topic; D008297:Male; D009223:Myotonic Dystrophy / Q000451:nursing* / Q000523:psychology*; D018802:Patient-Centered Care; D012944:Social Support
Huntington’s disease; myotonic dystrophy; neurological practice; neurology - clinical; neurology - education