Virtual house calls for Parkinson disease (Connect.Parkinson): study protocol for a randomized, controlled trial

Abstract

Background: Interest in improving care for the growing number of individuals with chronic conditions is rising. However, access to care is limited by distance, disability, and distribution of doctors. Small-scale studies in Parkinson disease, a prototypical chronic condition, have suggested that delivering care using video house calls is feasible, offers similar clinical outcomes to in-person care, and reduces travel burden.

Methods/design: We are conducting a randomized comparative effectiveness study (Connect.Parkinson) comparing usual care in the community to usual care augmented by virtual house calls with a Parkinson disease specialist. Recruitment is completed centrally using online advertisements and emails and by contacting physicians, support groups, and allied health professionals. Efforts target areas with a high proportion of individuals not receiving care from neurologists. Approximately 200 individuals with Parkinson disease and their care partners will be enrolled at 20 centers throughout the United States and followed for one year. Participants receive educational materials, then are randomized in a 1:1 ratio to continue their usual care (control arm) or usual care and specialty care delivered virtually (intervention arm). Care partners are surveyed about their time and travel burden and their perceived caregiver burden. Participants are evaluated via electronic survey forms and videoconferencing with a blinded independent rater at baseline and at 12 months. All study activities are completed remotely.The primary outcomes are: (1) feasibility, as measured by the proportion of visits completed, and (2) quality of life, as measured by the 39-item Parkinson's Disease Questionnaire. Secondary outcomes include measures of clinical benefit, quality of care, time and travel burden, and caregiver burden.

Discussion: Connect.Parkinson will evaluate the feasibility and effectiveness of using technology to deliver care into the homes of individuals with Parkinson disease. The trial may serve as a model for increasing access and delivering patient-centered care at home for individuals with chronic conditions.

Trial registration: This trial was registered on clinicaltrials.gov on January 8, 2014 [NCT02038959].

Figure 1

Number of typical full-time neurologist practices that would need to open to reduce the current disparity in Parkinson disease care by 50%. Estimates assume that a typical neurologist has 10% of office visits for Parkinson disease patients; that in one year, that neurologist sees patients every six months; and that each neurologist works full-time, five days per week, minus federal holidays and standard vacation.

Figure 2

Individuals from all over the world have accessed the Connect.Parkinson study website at . http://connect.parkinson.org

Figure 3

Potential Connect.Parkinson participants in underserved zip codes. Distribution of interested individuals by the proportion of underserved patients with Parkinson disease in their zip code. Data current as of May 20, 2014.