Share the Care: Study Design, Implementation, and Baseline Participant Characteristics of a Peer Mentoring Program to Improve Outcomes for Informal Caregivers of Homebound Individuals with Advanced Parkinson’s Disease (Preprint)

BACKGROUND Homebound individuals with advanced Parkinson’s Disease (PD) require intensive caregiving, the majority of which is provided by informal, family caregivers. PD caregiver strain is an independent risk factor for institutionalization. There are currently no effective interventions to support advanced PD caregivers. Studies in other neurologic disorders, however, have demonstrated the potential for peer mentoring interventions to improve caregiver outcomes. In the context of an ongoing trial of interdisciplinary home visits, we designed and piloted a nested trial of caregiver peer mentoring for informal caregivers of individuals with advanced PD. OBJECTIVE To test the feasibility of peer mentoring for caregivers of homebound individuals with advanced PD and to evaluate its effects on anxiety, depression, and caregiver strain. METHODS Single-center pilot study of 16 weeks of caregiver peer mentoring nested within a yearlong controlled trial of interdisciplinary home visits. We recruited 34 experienced former or current family caregivers who completed structured mentor training. Caregivers enrolled in the larger interdisciplinary home visit trial consented to receive 16 weeks of weekly, one-to-one peer mentoring calls with a trained peer mentor. Weekly calls were guided by a curriculum on advanced PD management and caregiver support. Fidelity to and satisfaction with the intervention were gathered via biweekly study diaries. Anxiety, depression, and caregiver strain were measured pre- and post-mentoring intervention at Home Visits 2 and 3. RESULTS Enrollment and peer mentor training began in 2018, and 65 caregivers enrolled in the overarching trial. The majority of mentors and mentees were white, female spouses or partners of individuals with PD, and mentors had a mean of 8.7 years of caregiving experience (SD 6.4). Thirty-three mentors were matched with at least one mentee. Mentoring concluded in late 2020, with data analysis underway. CONCLUSIONS This is the first study of caregiver peer mentoring in PD and may establish an adaptable and sustainable model for disease-specific caregiver interventions in PD and other neurodegenerative diseases. CLINICALTRIAL ClinicalTrials.gov NCT03189459; http://clinicaltrials.gov/ct2/show/ NCT03189459.

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Longitudinal, Interdisciplinary Home Visits vs. Usual Care for Homebound People with Advanced Parkinson’s Disease (IN-HOME-PD): Study protocol for a controlled trial (Preprint)

10.2196/preprints.31690 ◽

2021 ◽

Author(s):

Jori Fleisher ◽

Serena Hess ◽

Brianna Sennott ◽

Erica Myrick ◽

Ellen Klostermann Wallace ◽

...

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Controlled Trial ◽

Home Visits ◽

Caregiver Strain ◽

Yahr Stage ◽

Advanced Parkinson’S Disease ◽

One Year

BACKGROUND Current understanding of advanced Parkinson’s disease (PD) and its treatment is largely based on data from outpatient visits. The most advanced and disabled individuals become disconnected from both care and research. A previous pilot study among older, multimorbid patients with advanced PD demonstrated the feasibility of interdisciplinary home visits to reach the target population, improve care quality, and potentially avoid institutionalization. OBJECTIVE The following protocol tests whether interdisciplinary home visits can 1) prevent decline in quality of life and 2) prevent worsening caregiver strain. Finally, the protocol explores whether program costs are offset by savings in healthcare use and institutionalization when compared with usual care. METHODS In this single-center, controlled trial, 65 patient-caregiver dyads affected by advanced PD (Hoehn & Yahr stages 3-5 and homebound) are recruited to receive quarterly interdisciplinary home visits over one year. The one-year intervention is delivered by a nurse and research coordinator who travel to the home supported by a movement disorders specialist and social worker (both present by video). Each dyad is compared with age-, sex-, and Hoehn and Yahr stage-matched control dyads drawn from US participants in the longitudinal Parkinson’s Outcome Project registry. The primary outcome measure is change in patient quality of life between baseline and one year. Secondary outcome measures include change in Hoehn & Yahr stage, caregiver strain, self-reported fall frequency, emergency room visits, hospital admissions, and time-to-institutionalization and/or death. Intervention costs and changes in healthcare utilization will be analyzed in a budget impact analysis exploring the potential for model adaptation and dissemination. RESULTS The protocol was funded in September 2017 and approved by the Rush Institutional Review Board in October 2017. Recruitment began in May 2018 and closed in November 2019 with 65 patient-caregiver dyads enrolled. All study visits have been completed and analysis is underway. CONCLUSIONS To our knowledge, this is the first controlled trial to investigate the effects of interdisciplinary home visits among homebound individuals with advanced Parkinson’s disease and their caregivers. This study also establishes a unique cohort of patients from whom we can study the natural course of advanced PD, its treatments, and unmet needs. CLINICALTRIAL Clinicaltrials.gov, NCT03189459.

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Longitudinal, Interdisciplinary Home Visits vs. Usual Care for Homebound People with Advanced Parkinson’s Disease (IN-HOME-PD): Study protocol for a controlled trial (Preprint)

JMIR Research Protocols ◽

10.2196/31690 ◽

2021 ◽

Author(s):

Jori Fleisher ◽

Serena Hess ◽

Brianna Sennott ◽

Erica Myrick ◽

Ellen Klostermann Wallace ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Usual Care ◽

Study Protocol ◽

Controlled Trial ◽

Home Visits ◽

Advanced Parkinson’S Disease

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Patient and caregiver outcomes with levodopa-carbidopa intestinal gel in advanced Parkinson’s disease

npj Parkinson s Disease ◽

10.1038/s41531-021-00246-y ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Francesc Valldeoriola ◽

María José Catalán ◽

Francisco Escamilla-Sevilla ◽

Eric Freire ◽

Jesús Olivares ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Treatment Satisfaction ◽

Well Being ◽

Patient Treatment ◽

Motor Symptoms ◽

Serious Adverse Events ◽

Advanced Parkinson’S Disease ◽

Anxiety Depression ◽

The Impact

AbstractLevodopa-carbidopa intestinal gel (LCIG) has shown to be efficacious in motor and non-motor symptoms (NMS). Nevertheless, studies with patient Quality of Life (QoL) as a primary endpoint are scarce. To assess the effect of LCIG on Advanced Parkinson’s Disease (APD) patients QoL. Secondarily, the impact on motor symptoms and NMS, emotional well-being, treatment satisfaction, and caregiver QoL, stress, disease burden, anxiety, depression, and work impairment were also investigated. In this prospective, 6-month multicenter postmarketing observational study, LCIG was administered to 59 patients with APD. Endpoints were assessed using validated scales and questionnaires. LCIG significantly improved patient QoL (PDQ-39 mean change ± standard deviation from baseline, −12.8 ± 14.6; P < 0.0001), motor symptoms (UPDRS-III in “On,” −6.5 ± 11.8; P = 0.0002), NMS (NMSS, −35.7 ± 31.1; P < 0.0001), mood (Norris/Bond-Lader VAS, −6.6 ± 21.1; P = 0.0297), fatigue (PFS-16, −0.6 ± 1.0; P = 0.0003), depression (BDI-II, −5.1 ± 9.4; P = 0.0002), anxiety (BAI, −6.2 ± 9.6; P < 0.0001), and patient treatment satisfaction (SATMED-Q, 16.1 ± 16.8; P < 0.0001). There were significant correlations between the change from baseline to 6 months between PDQ-39 and UPDRS-IV, NMSS, BAI, BDI-II, AS, and PFS-16 scores, and Norris/Bond-Lader alertness/sedation factor. Caregiver anxiety also improved (Goldberg anxiety scale, −1.1 ± 1.0; P = 0.0234), but the clinical relevance of this finding is questionable. The serious adverse events reported were similar to those previously described for LCIG. In patients with APD, LCIG improves QoL, motor symptoms and NMS, emotional well-being, and satisfaction with the treatment. Improvement in patient QoL is associated with improvements in motor complications, NMS, anxiety, depression, apathy and fatigue. Improvements in patients’ QoL does not correspond with improvements in caregivers’ QoL or burden.

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Beyond Motor Symptoms – Impact of Continuous Dopaminergic Stimulation on Non-motor and Social Aspects of Advanced Parkinson’s Disease

European Neurological Review ◽

10.17925/enr.2012.07.s1.17 ◽

2012 ◽

Vol 7 ((Suppl.1)) ◽

pp. 17

Author(s):

Barbara Pickut ◽

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Infusion Therapy ◽

Motor Symptoms ◽

Advanced Parkinson’S Disease ◽

Continuous Dopaminergic Stimulation ◽

Anxiety Depression ◽

Non Motor Symptoms ◽

Dopaminergic Stimulation

Two patient cases are presented here that illustrate the benefits of continuous dopaminergic stimulation on the non-motor symptoms of Parkinson’s disease. In both cases, levodopa/carbidopa intestinal gel infusion therapy led to improvements in anxiety, depression, concentration, urge incontinence, sexual function, sleep, vivid dreams and rapid eye movement sleep behaviour disorder, pain, sweating and feelings of self-assuredness. Such improvements have an impact on patients’ quality of life and can help their social functioning.

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Establishing Predictive Criterion Validity of the Parkinson's Disease Caregiver Strain Risk Screen-10

Journal of Nursing Measurement ◽

10.1891/1061-3749.27.3.e170 ◽

2019 ◽

Vol 27 (3) ◽

pp. E170-E182

Author(s):

Maryann Abendroth

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Physical Health ◽

Informal Caregiver ◽

Informal Caregivers ◽

Criterion Validity ◽

Caregiver Strain ◽

Hierarchical Regression ◽

Health Symptoms ◽

Negative Impacts

Background and PurposeStudies reveal that caring for persons with Parkinson's disease affects informal caregivers psychologically and physically, yielding negative impacts on caregiving abilities. The purpose was to establish predictive criterion validity of the Caregiver Strain Risk Screen-10 (CSRS-10), a tool designed to monitor risk for strain in informal caregivers of persons with Parkinson's disease.MethodsCaregivers (N = 137) of persons with Parkinson's disease completed surveys that included CSRS-10 and Pennebaker Inventory of Limbic Languidness, to measure strain risk and frequency of physical health symptoms, respectively.ResultsHierarchical regression indicated that higher CSRS-10 scores were predictive of greater frequency of physical health symptoms in caregivers.ConclusionsThe study established predictive criterion validity of CSRS-10, further demonstrating it as an effective evidence-based tool for assessing risk for strain in this informal caregiver population.

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