Objective: The HD-Net research survey aimed to assess care patterns among practice types in the U.S., to identify gaps in the provision of HD care.

Background: No study to date has thoroughly examined current care delivery in a variety of HD clinic settings.

Method: US clinical practices that billed for at least 10 HD pts/yr during 2018-19 were identified and stratified by type of practice. The fielded survey of 339 practices resulted in 156 responses.

Results: A principal components analysis revealed six factors among the responding practices.  Further multivariate analyses revealed statistically notable associations among four of these factors:
1) Sufficient HD specialized staffing, with a moderate positive association with practices seeing >100 HD patients/yr (Effect Size [ES] = 0.64; 95% CI=0.15, 1.13), and a moderate negative association with non-academic practices (ES = -0.47; 95% CI=-0.84, -0.09) and practices without a movement disorder trained lead physician (ES = -0.45; 95% CI=-0.85, -0.04).

2) Provision of routine HD Care, with a moderate positive trend toward higher ratings and practices seeing 26-100 HD patients/yr (ES = 0.40; 95% CI=-0.06, 0.86) and practices seeing >100 HD patients/yr (ES = 0.51; 95% CI=-0.03, 1.06). There was also a moderate negative trend toward lower ratings for practices without a movement disorder trained lead physician (ES = -0.45; 95% CI=-0.90, 0).

3) Provision of pre-visit screening and social work staff, with a moderate positive association with practices seeing >100 HD patients/yr (ES = 0.59; 95% CI=0.05, 1.13) and a negative association with practices without an HD or multidisciplinary clinic (ES = -0.45; 95% CI=-0.89, -0.01).

4) Access to more novel therapeutic interventions, with a small negative trend toward practices without an HD or multidisciplinary clinic (ES = -0.37; 95% CI = -0.83, 0.10).

The remaining two factors, routinely monitoring cognitive function and provision of patient-centered care, saw no significant associations/trends.

Conclusion: Practices with the highest HD patient volumes were more likely to provide specialized staffing and pre-visit screening of needs. Practices without a movement disorder lead were least likely to provide routine HD care.  Practices without a multidisciplinary clinic were less likely to have access to future novel therapies and least likely to provide pre-visit screening/social work staff.  These patterns may provide useful insights in addressing gaps in HD care.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/characterizing-us-healthcare-delivery-in-huntingtons-disease-hd/