“In recent years, we have gained a much better understanding of the breadth and severity of both motor and non-motor symptoms of Parkinson’s disease (PD),” says Jori E. Fleisher, MD, MSCE. “Studies demonstrate gaps in access to care, however, with many individuals with PD never seeing a neurologist, let alone a movement disorders specialist. Yet, the literature is sparse about individuals with PD who have access to specialty care but who are lost to follow-up due to disease progression.”

Recognizing Late-Stage PD as an Entity

For a study published in Neurology: Clinical Practice, Dr. Fleisher and colleagues aimed to determine whether facilitating expert in-home care could improve the understanding of disease progression, treatment options, and unmet needs in this vulnerable population, as well as whether such a model could mitigate decline in QOL.

“Prior studies of advanced PD have focused on individuals still able to attend clinic appointments, which can exclude those who are homebound,” Dr. Fleisher explains. “Our home visit program was created to lay the groundwork for subsequent research in this population by first illuminating the existence of these patients and care partners, mapping their disease trajectory, and beginning to discuss their needs. Creating a novel model of care—in the form of interdisciplinary home visits—is the first step.”

In this study, patients with PD meeting Medicare homebound criteria were eligible for quarterly interdisciplinary home visits for 12 months. Each visit included an evaluation by a movement disorders neurologist, social worker, and nurse who addressed patient history, examination, medication reconciliation, psychosocial evaluation, pharmacologic and nonpharmacologic management, and service referrals. Disease severity, as measured by UPDRS, and QOL, using the Neuro-QoL, were recorded at visits 1 and 4. Of 27 enrolled patients, 23 completed four visits, with high retention and high patient- and caregiver-reported satisfaction. After 1 year of home visits, total UPDRS worsened by a mean of 11.8 points without a change in any of eight QOL domains (Table).

QOL Does Not Parallel PD Severity

“Among participants, 41% lived alone, despite high severity of disease and the majority requiring an assistive device to ambulate or being wheelchair-dependent or bed-bound,” she says. “Despite assumptions on the part of some healthcare providers that either symptoms cannot get much worse in advanced disease, or that QOL will necessarily follow the downward trajectory, we found that PD severity worsened at a greater rate than in other study populations. However, QOL did not significantly parallel that decline.”

Dr. Fleisher stresses that neurologists have the power to keep this patient population in the “loop of care” with some additional effort. “Our patients with PD don’t stop progressing just because we no longer see them in regular outpatient appointments,” she says. “And, while we all wish we had better treatments to slow or stop the progression, we have countless pharmacologic and non-pharmacologic options to mitigate symptoms and local or online supportive resources.”

Neurologists, she adds, can establish relationships with colleagues in nursing, social work, allied health fields, and the community who can support these patients and their families in critical and complementary ways. “In this way—as we saw in our pilot—we may prevent institutionalization of these high-risk patients. But we must broaden our reach to understand the disease trajectory, symptoms, unmet patient and care partner needs, and critical inflection points for access to, and continuity of, expert care in late-stage PD,” she says. “We can then adapt existing models of care and build new interventions to reach and serve these individuals. Care partners are doing the unseen work of struggling to keep their loved one at home rather than in a hospital or nursing facility. We need to understand and address their unique stressors and strains.”