In-Home Care for Patients With Parkinson's Disease
In-Home Care for Patients With Parkinson's Disease
Advanced Parkinson's Disease is a debilitating, costly, and understudied condition. Improving
 access to comprehensive, specialized, in-home patient care and caregiver support offers the
 potential to minimize the downward spiral of morbidity and preventable healthcare
 utilization. The aim of this study is to test whether and to what degree an interdisciplinary
 home visit program, with and without peer mentoring for caregivers, will improve patient- and
 caregiver-reported outcomes and reduce healthcare costs when compared with usual care in
 advanced Parkinson's Disease.
This interdisciplinary home visit program consists of 4 visits to patients' homes over the
 course of one year from a team of a movement disorders doctor, a nurse, a research
 coordinator, and a social worker. The team will come to a patient's home and assess the needs
 of both the patient and caregiver, and connect the patient with any needed services. These
 visits can replace or be in addition to seeing another movement disorders doctor.

 As part of this study, not only would the patient receive home visits, but his/her caregiver
 would be paired with another caregiver from the community with lots of experience caring for
 someone with PD whose loved one may have passed away, but who volunteers to serve as a
 mentor. Current caregivers who enroll in the study will be asked to speak to their mentor
 once a week over a course of 4 months. These meetings can take place in person, by phone, or
 through video chat on an iPad that will be provided by our study team.

 The information collected from the study participants will be compared to data available in
 the National Parkinson's Foundation's Parkinson's Outcome Project. The data will be matched
 according to age, gender, and disease severity.
Inclusion Criteria:

 HVP Patient-Subject

 -  Each subject must be 40 years of age or older. A subject may be of either gender, any
 race, and any ethnicity.

 -  Subjects must have a diagnosis of idiopathic Parkinson's Disease (inclusive of
 Parkinson's Disease Dementia) by a neurologist.

 -  Subjects will have been seen at least once in the past two years in the outpatient
 movement disorders clinic at Rush University Medical Center

 -  Subjects must be rated as HY stage 3-5 at the time of screening via chart review of
 the most recent clinical visit.

 -  Subjects must reside within a 60-minute public transit or driving distance of Rush
 University.

 -  Subjects must live at home (as defined by an independent dwelling such as an
 apartment, condominium, or house owned or rented by, or provided to/shared with the
 subject).

 -  Subjects must be home-bound according to the Medicare definition: "Leaving your home
 isn't recommended because of your condition; your condition keeps you from leaving
 home without help (such as using a wheelchair or walker, needing special
 transportation, or getting help from another person); leaving home takes a
 considerable and taxing effort." (http://www.medicare.gov/pubs/pdf/10969.pdf)

 -  Subjects have one or more of the following criteria, as determined by the referring
 neurologist: motor or cognitive fluctuations, multi-morbidity, medication
 mismanagement, cognitive impairment, symptoms of depression and/or anxiety, high risk
 for hospitalization or hospital readmission, high risk for nursing facility admission,
 suspected elder abuse, recent history of increased falls in home, caregiver burnout
 suspected, >2 cancelled or no-show appointments with the movement disorders providers
 in the preceding 12 months

 -  Subjects must have a caregiver willing to participate in the study, as defined by an
 unpaid individual cohabiting with or spending an average of >20 hours weekly engaged
 in care-related tasks related to the subject

 -  Subjects must either: 1) demonstrate capacity to consent, or 2) pending caregiver
 capacity assessment and caregiver consent, give assent or not dissent. Excluding
 individuals with cognitive impairment, dementia, depression, or psychosis would limit
 the generalizability of this study given the prevalence of each in advanced PD.

 HVP Caregiver-Subject

 -  Each subject must be 30 years of age or older. A subject may be of either gender, any
 race, and any ethnicity.

 -  Each subject must be an unpaid individual cohabiting with or spending an average of
 >20 hours weekly engaged in care-related tasks related to the patient-subject. The
 caregiver-subject does not need to be the patient-subject's health care proxy or
 guardian.

 -  Each subject must demonstrate capacity to consent.

 -  Each subject must agree to participation in the nested trial of caregiver peer
 mentoring as a caregiver mentee

 -  Each subject must have a working telephone number at which he or she can be reached
 for check-in calls by the study team throughout the study.

 Caregiver Peer Mentor

 -  Each subject must be 30 years of age or older. A subject may be of either gender, any
 race, and any ethnicity.

 -  Each subject must have >2 years of informal caregiving experience for an individual
 with PD or a related disorder.

 -  Each subject must have previously participated in a caregiver support group for PD,
 participated in a PD educational or outreach event, or given permission to be
 contacted for research.

 -  Each subject must be primarily English-speaking.

 -  Each subject must be willing and able to attend a one-time, five-hour mentor training
 session at Rush University

 -  Each subject must commit to two, 16-week blocks of peer mentoring either in person, by
 telephone, or by video conference on a study-provided iPad, for a minimum of 30
 minutes weekly.

 -  Each subject must have a working telephone number at which he or she can be reached
 for check-in calls by the study team throughout the study.

 -  Each subject must be willing and able to attend a monthly, 45-minute supervision group
 during the two 16-week blocks of peer mentoring, held at Rush University.

 De-identified Control Subjects

 -  Each subject must be 40 years of age or older. A subject may be of either gender, any
 race, and any ethnicity.

 -  Each subject must be a community-dwelling individual with idiopathic PD as diagnosed
 by a neurologist

 -  Each subject must be enrolled in the NPF POP at a US site.

 -  Each subject must have >2 consecutive, annual visits documented within the POP at
 which the subject is staged as HY 3-5.

 -  Each subject must have a caregiver participating in the POP at the above visits, as
 defined by completion of the MCSI.

 Exclusion Criteria:

 -  Subjects exhibiting symptoms of a severe psychiatric disorder interfering with their
 ability to participate in the study, as determined by the referring neurologist, study
 team member, or PI.

 -  Subjects who are primarily non-English-speaking.

 Exclusion Criteria for Subjects, by type:

 HVP Patient-Subject

 -  Subjects with diagnoses of atypical parkinsonism or possible/probable PSP, MSA, CBS,or
 DLB will be excluded.

 -  Subjects without an informal caregiver will be excluded.

 HVP Caregiver-Subject

 -  Active psychosis or other severe psychiatric disease

 -  Terminal illness (life expectancy <12 months)

 Caregiver Peer Mentor

 -  Active psychosis or other severe psychiatric disease

 -  Terminal illness (life expectancy <12 months)