Disease severity and quality of life in homebound people with advanced Parkinson disease: A pilot study

As Parkinson disease (PD) progresses, symptoms increase, quality of life (QoL) declines, and individuals may become homebound, often losing access to neurologic care. We aimed to determine whether facilitating expert in-home care could improve our understanding of disease progression, treatment options, and unmet needs in this vulnerable population, and whether such a model could mitigate decline in QoL.

Patients with PD meeting Medicare homebound criteria were eligible for quarterly interdisciplinary home visits over 12 months. Each visit entailed an evaluation by a movement disorders neurologist, social worker, and nurse, including history, examination, medication reconciliation, psychosocial evaluation, pharmacologic and nonpharmacologic management, and service referrals. Disease severity, as measured by the Unified Parkinson's Disease Rating Scale (UPDRS), and QoL using the Neuro-QoL were measured at visits 1 and 4.

Of 27 enrolled patients, 23 completed 4 visits, with high retention and high patient- and caregiver-reported satisfaction. The mean age at baseline was 80.9 years (SD 7.8) with a mean total UPDRS of 65.0 (SD 20.0). After one year of home visits, total UPDRS worsened by a mean of 11.8 points (p < 0.01) without a change in any of 8 QoL domains (p = 0.19-0.95).

Homebound individuals with advanced PD receiving interdisciplinary home visits experienced no significant decline in QoL over 1 year, despite disease progression. Our findings highlight the disease severity and impaired QoL of the advanced, homebound PD population, and the potential for novel approaches to foster continuity of care.