Assessing the state of care for Huntington disease in the United States: Results from a survey of practices treating Huntington disease patients.
Care
Huntington disease
Practice survey
Journal
Clinical parkinsonism & related disorders
ISSN: 2590-1125
Titre abrégé: Clin Park Relat Disord
Pays: England
ID NLM: 101761473
Informations de publication
Date de publication:
2022
2022
Historique:
received:
21
02
2022
revised:
05
08
2022
accepted:
31
08
2022
entrez:
20
10
2022
pubmed:
21
10
2022
medline:
21
10
2022
Statut:
epublish
Résumé
No study to date has thoroughly examined US Huntington disease (HD) care delivery in a variety of clinic settings by HD specialists and non-specialists. To obtain a clearer understanding of current care structure and delivery of care through a survey of representative US physicians treating HD patients. We designed and fielded a survey of 40 closed-ended evaluative items and one open-ended item to a sample of 339 US practices. Unique to this survey was the inclusion of non-specialists. Responses were received from 156 practices (overall response rate 46.02 %), with 52.6 % from academic sites, 35.3 % from private practices, and 12.2 % from the VA. More than half (63.5 %) of the practice leads were movement disorder trained or Directors of HDSA Centers of Excellence and 58.3 % had an HD or multidisciplinary care clinic. However, 48.7 % of the practices saw 1-25 HD patients, 28.2 % saw 26-100 HD patients, and 23.1 % served over 100 HD patients annually. Most practices (>69 %) reported having difficulty providing social work, genetic counseling, care coordination and psychologists/psychiatrists. Increased HD practice size was associated with higher rates of pre-visit screenings, care navigator/care coordinators, routine monitoring of weight, and provision of genetic counseling by genetic counselors. Not surprisingly, we found that HD care was inconsistently applied across the US. Practices led by neurologists trained in movement disorders, and higher HD volume practices, tended to be better equipped to provide multi-disciplinary staffing and procedures as compared to those with fewer numbers of HD patients.
Sections du résumé
Background
UNASSIGNED
No study to date has thoroughly examined US Huntington disease (HD) care delivery in a variety of clinic settings by HD specialists and non-specialists.
Objective
UNASSIGNED
To obtain a clearer understanding of current care structure and delivery of care through a survey of representative US physicians treating HD patients.
Methods
UNASSIGNED
We designed and fielded a survey of 40 closed-ended evaluative items and one open-ended item to a sample of 339 US practices. Unique to this survey was the inclusion of non-specialists.
Results
UNASSIGNED
Responses were received from 156 practices (overall response rate 46.02 %), with 52.6 % from academic sites, 35.3 % from private practices, and 12.2 % from the VA. More than half (63.5 %) of the practice leads were movement disorder trained or Directors of HDSA Centers of Excellence and 58.3 % had an HD or multidisciplinary care clinic. However, 48.7 % of the practices saw 1-25 HD patients, 28.2 % saw 26-100 HD patients, and 23.1 % served over 100 HD patients annually. Most practices (>69 %) reported having difficulty providing social work, genetic counseling, care coordination and psychologists/psychiatrists. Increased HD practice size was associated with higher rates of pre-visit screenings, care navigator/care coordinators, routine monitoring of weight, and provision of genetic counseling by genetic counselors.
Conclusions
UNASSIGNED
Not surprisingly, we found that HD care was inconsistently applied across the US. Practices led by neurologists trained in movement disorders, and higher HD volume practices, tended to be better equipped to provide multi-disciplinary staffing and procedures as compared to those with fewer numbers of HD patients.
Identifiants
pubmed: 36262527
doi: 10.1016/j.prdoa.2022.100165
pii: S2590-1125(22)00036-6
pmc: PMC9574766
doi:
Types de publication
Journal Article
Langues
eng
Pagination
100165Informations de copyright
© 2022 The Authors.
Déclaration de conflit d'intérêts
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
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