Challenges and Perspectives in the Management of Late-Stage Parkinson’s Disease

Fabbri, Margherita; Kauppila, Linda Azevedo; Ferreira, Joaquim J.; Rascol, Olivier

doi:10.3233/jpd-202096

Cited by 22 publications

(13 citation statements)

References 46 publications

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“…Included patients suffered from late-stage PD with a high dependence on external help. Additionally, depressive symptoms were reported, which are commonly associated with late-stage PD [ 18 ]. Severe falls, which are one major complications of advanced PD [ 19 ], occurred frequently.…”

Section: Discussionmentioning

confidence: 99%

Analysis of Transition of Patients with Parkinson’s Disease into Institutional Care: A Retrospective Pilot Study

et al. 2021

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Parkinson’s disease (PD) is a neurodegenerative disease which gives a person a high risk of becoming care-dependent. During disease progression, the amount of care concerning activities of daily living can increase, possibly resulting in transition of the people with Parkinson’s disease (PwP) to a care facility. However, there is a lack of knowledge concerning the factors leading to institutionalization of PwP and the consequences for them and their informal caregivers. The aim of this cross-sectional retrospective study was to investigate reasons leading to the transition into an institutional care facility, the process of decision-making and its effects on PwP symptoms and caregiver burden. Participating PwP had to be institutionalized for at most one year after transition at study inclusion. Participants completed a range of semiquantitative questionnaires as well as the caregiving tasks questionnaire. Fourteen patient–caregiver pairs were included. PwP suffered from late-stage PD symptoms with high dependence on help, experiencing several hospitalizations before transition. Analyses revealed a significant decrease in caregiver burden and depressive symptoms of the caregivers after PwP institutionalization. Factors influencing the transition were, e.g., fear of PwP health issues and concerns about caregivers’ health. This study presents new insights into the process of institutionalization and its influence on caregiver burden, including aspects for discussions of physicians with PwP and their caregivers for counselling the decision to move to institutional care.

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Section: Discussionmentioning

confidence: 99%

Analysis of Transition of Patients with Parkinson’s Disease into Institutional Care: A Retrospective Pilot Study

et al. 2021

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“…Recruitment is an additional and anticipated challenge inherent to a population that has eluded care and clinical research until recently [ 14 , 78 - 80 ]. Identifying potentially eligible patients through the EMR offers certain advantages; however, documentation may not reflect the correct diagnosis, stage, or presence of a caregiver.…”

Section: Discussionmentioning

confidence: 99%

Longitudinal, Interdisciplinary Home Visits Versus Usual Care for Homebound People With Advanced Parkinson Disease: Protocol for a Controlled Trial

Fleisher¹,

Hess²,

Sennott³

et al. 2021

JMIR Res Protoc

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Background The current understanding of advanced Parkinson disease (PD) and its treatment is largely based on data from outpatient visits. The most advanced and disabled individuals with PD are 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 aim of this study protocol is to investigate whether interdisciplinary home visits can prevent a decline in quality of life of patients with PD and prevent worsening of caregiver strain. The protocol also explores whether program costs are offset by savings in health care utilization and institutionalization compared with usual care. Methods In this single-center, controlled trial, 65 patient-caregiver dyads affected by advanced PD (Hoehn and Yahr stages 3-5 and homebound) are recruited to receive quarterly interdisciplinary home visits over 1 year. The 1-year intervention is delivered by a nurse and a research coordinator, who travel to the home, and it is supported by a movement disorder 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 the change in patient quality of life between baseline and 1 year. Secondary outcome measures include changes in Hoehn and Yahr stage, caregiver strain, self-reported fall frequency, emergency room visits, hospital admissions, and time to institutionalization or death. Intervention costs and changes in health care utilization will be analyzed in a budget impact analysis to explore 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 PD 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. Trial Registration ClinicalTrials.gov NCT03189459; http://clinicaltrials.gov/ct2/show/NCT03189459. International Registered Report Identifier (IRRID) PRR1-10.2196/31690

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“…Regarding symptomatic treatment, a good practice point consists in using L-dopa, preferentially as monotherapy and at the lowest dose possible. Indeed, other (add-on) dopaminergic therapies, including dopamine-agonists, catechol-O-methyl transferase inhibitors, and monoamine oxidase-B inhibitors, are more likely to induce hallucinations, confusion, or OH among elderly and frail PD patients and, consequently, should be cautiously used in this disease stage [ 9 ]. L-dopa has been shown to be effective on rigidity and tremor, especially among non-demented, tremor-dominant patients or those with dyskinesia in LSPD [ 10 , 11 , 12 ].…”

Section: Therapeutic Challenges: Oral and Non-pharmacological Approachesmentioning

confidence: 99%

“…The management of NMS is based on the application of the clinical evidence available for earlier PD stages [ 13 ] and herein summarized in Figure 1 (right panel) [ 9 , 14 ] (see also BOX, Case S1 ). Nevertheless, the dose therapeutic response, tolerance, and AEs profile may be distinct in LSPD, limiting its applicability.…”

Section: Therapeutic Challenges: Oral and Non-pharmacological Approachesmentioning

confidence: 99%

Personalized Care in Late-Stage Parkinson’s Disease: Challenges and Opportunities

Fabbri

Coelho²,

Garon

et al. 2022

JPM

Self Cite

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Late-stage Parkinson’s disease (LSPD) patients are highly dependent on activities of daily living and require significant medical needs. In LSPD, there is a significant caregiver burden and greater health economic impact compared to earlier PD stages. The clinical presentation in LSPD is dominated by motor and non-motor symptoms (NMS) that most of the time have a sub-optimal to no response to dopaminergic treatment, especially when dementia is present. Non-pharmacological interventions, including physiotherapy, cognitive stimulation, speech, occupational therapy, and a specialized PD nurse, assume a key role in LSPD to mitigate the impact of disease milestones or prevent acute clinical worsening and optimize the management of troublesome NMS. However, the feasibility of these approaches is limited by patients’ cognitive impairment and the difficulty in delivering care at home. The present care challenge for LSPD is the ability to offer a person-centered, home-delivered palliative care model based on Advanced Care Planning. An ongoing European multicentric project, PD_Pal, aims to address this challenge.

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Challenges and Perspectives in the Management of Late-Stage Parkinson’s Disease

Cited by 22 publications

References 46 publications

Analysis of Transition of Patients with Parkinson’s Disease into Institutional Care: A Retrospective Pilot Study

Analysis of Transition of Patients with Parkinson’s Disease into Institutional Care: A Retrospective Pilot Study

Longitudinal, Interdisciplinary Home Visits Versus Usual Care for Homebound People With Advanced Parkinson Disease: Protocol for a Controlled Trial

Personalized Care in Late-Stage Parkinson’s Disease: Challenges and Opportunities

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