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

BACKGROUND: 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. METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.

Interdisciplinary Home Visits for Individuals with Advanced Parkinson's Disease and Related Disorders.

Parkinson's disease (PD) is a complex, multisymptom, neurodegenerative disease affecting primarily older adults. With progression, many individuals become homebound and removed from coordinated, expert care, resulting in excess morbidity, mortality, and healthcare expenditures in acute care settings and institutions. Home visit care models have achieved the triple aim of improving individual and population health while reducing costs in many frail, community-dwelling geriatric cohorts. This study details a novel, interdisciplinary home visit program specifically designed for individuals with PD and related disorders and their family caregivers built upon best practice principles in the care of multimorbid older adults. At each quarterly home visit, a movement disorders-trained neurologist, social worker, and nurse work in parallel with the individual and caregiver to complete a history, physical, detailed medication reconciliation, psychosocial needs assessment, and home safety assessment. A comprehensive, person-centered plan is agreed upon, referrals to community resources are made, standardized documentation is shared, and follow-up communication is instituted. In the first 2 years, 272 visits were conducted with 85 individuals who represent one of the oldest, most disabled PD populations reported. Satisfaction with and retention in the program were high. This study represents the first translation of the success of interdisciplinary and home-based geriatric care models to a population with a specific neurological disease. Preliminary evidence supports the need for such programs in vulnerable populations. Future studies will prospectively assess person-centered outcomes, the effect of using telemedicine on sustainability, and cost effectiveness.

"In sickness and in health"? Disclosures of genetic risks in dating.

Individuals who have, or are at risk for, various genetic disorders face many challenges concerning disclosures of genetic information in dating situations. We conducted a qualitative interview study of 64 individuals confronting Huntington's disease, breast cancer, or Alpha-1 antitrypsin deficiency, examining what issues these individuals encountered, and how they viewed and addressed these--including issues of understandings, privacy, and disclosures of genetic information to various groups (e.g., family members). Incidental to the primary research questions addressed, participants also often described a series of dilemmas in dating situations that they and/or family members, friends, and fellow patients faced of whether to date, and if so, whether, what, how, why, and when to disclose their genetic risk or illness. At times, these individuals feared and experienced rejection, and hence delayed, avoided, or opposed disclosure, or disclosed indirectly or inadvertently. These data are reported in this paper and highlight the importance of patients, their loved ones, genetic counselors, and other health care providers being aware of these issues, and appreciating the complex factors involved, which can affect patients' coping and social support. This paper, the first to explore several key aspects of disclosures of genetic information in dating, thus suggests needs for public and professional education, and future research in this area.