DOI: 10.6084/m9.figshare.27179970.v2
title: The impact of diagnosing provider type on longitudinal care for patients with newly diagnosed Huntington’s disease

description: This study evaluated the association between provider types for patients with newly diagnosed Huntington’s disease (HD) and healthcare resource utilization (HCRU), costs, and treatment patterns. This retrospective analysis used MarketScan databases (1 January 2017–31 December 2021) to identify provider types who diagnosed and managed US adult patients with HD. Patients with continuous enrollment 6 months pre- and 12 months post-diagnosis were included. Outcomes evaluated over 12 months post-diagnosis included hospitalizations, outpatient visits, antipsychotic or vesicular monoamine transporter 2 (VMAT2) inhibitor use, and total healthcare costs. Three hundred and forty eligible patients had a mean age at diagnosis of 49 years. 56.5% were female; 71.5% had a Charlson Comorbidity Index of 0. Patients were diagnosed by neurologists (48.5%), primary care providers (PCPs) (35.6%), psychiatrists (3.5%), or other providers (12.4%). Patients diagnosed by PCPs or neurologists received significantly more follow-ups by the same diagnosing provider type (<i>p</i> &lt; 0.05). All-cause and HD-related outpatient visits at 12-month follow-up had more patients diagnosed by PCPs (23.9, 5.1) than neurologists (18.0, 2.4), psychiatrists (16.7, 1.67), or others (15.3, 2.4). HD-related mean costs totaled $2,489 ($1,179 inpatient and $1,310 outpatient). Patients diagnosed by neurologists had significantly lower HD-related total non-medication costs <i>vs.</i> those diagnosed by PCPs (−$2,256; <i>p</i> &lt; 0.05). Among patients diagnosed by neurologists <i>vs.</i> PCPs, similar proportions received antipsychotics within the first year (55 <i>vs.</i> 52%, respectively); more patients managed by neurologists received VMAT2 inhibitors (12 <i>vs.</i> 7%, respectively). Our study includes limitations inherent to retrospective claims studies. Patients with HD are most often diagnosed by neurologists or PCPs; the same diagnosing provider type typically manages follow-up. Patients diagnosed by neurologists had significantly fewer HD-related outpatient visits, lower HD-related non-drug costs, and more frequently received VMAT2 inhibitors <i>vs.</i> those diagnosed by PCPs. Our findings show an integrated care team may provide evidence-based, personalized care for patients with HD. Huntington’s disease is a rare disease that is caused by changes in genes. Symptoms of Huntington’s disease are irritability, depression, loss of memory, and issues with movement. The symptoms are different for each person and can happen at different times during the disease. A team of doctors that can help with all the symptoms is important for treating Huntington’s disease. In our study we looked at which type of doctor was diagnosing Huntington’s disease and if the patient continued to see the same type of doctor. We also looked at whether the costs of the disease were related to the type of doctor that diagnosed the disease. We found that most patients were diagnosed by a primary care doctor or a neurologist (brain doctor), and they continued to see the same doctor. Patients who saw a neurologist had less doctor visits for their HD and also less costs for their HD. These results show having a team of doctors that can help with all symptoms of HD may make it easier for patients to receive the best care for their symptoms.