The Architecture of Contemporary Care Networks for Rare Movement Disorders: Leveraging the ParkinsonNet Experience

Warrenburg, Bart P. van de; Tiemessen, Mark; Munneke, Marten; Bloem, Bastiaan R.

doi:10.3389/fneur.2021.638853

Cited by 6 publications

(6 citation statements)

References 23 publications

(23 reference statements)

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“…The multidisciplinary team in each facility consist of experienced professionals, including nursing staff and paramedics (a physio therapist, occupational therapist, speech therapist, dietitian and psychologist), acting under the medical supervision of an attending physician. All professionals are members of and trained by ParkinsonNet [ 8 ]. Each year, in each facility, approximately 15–20 patients are admitted for GR-P after acute functional decline related to progression of PD itself or an intercurrent disease or trauma.…”

Section: Methodsmentioning

confidence: 99%

Parkinson rehabilitation in nursing homes: a qualitative exploration of the experiences of patients and caregivers

Fidder

Jaski

Elbertse³

et al. 2022

Eur Geriatr Med

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Purpose Worldwide, an increasing number of people are diagnosed with atypical Parkinsonism or idiopathic Parkinson’s disease (PD). Periods of acute functional decline, triggered by acute disease, are common. Rehabilitation is often necessary to restore functioning. Skilled nursing facilities (SNFs) in the Netherlands have developed evidence-based geriatric rehabilitation for Parkinson (GR-P) programs. However, data on the experiences and needs of patients and their caregivers are lacking. This study aims to address these, in order to propose recommendations for improvement. Methods We performed a qualitative study, using semi-structured interviews in two Dutch SNFs offering GR-P. Nine patients with PD and six informal caregivers were included. We subjected verbatim transcripts of 15 interviews to qualitative analysis. Results Data saturation was reached after 15 interviews. Three overarching themes emerged: (1) autonomy, (2) sharing information and (3) contact with others. Loss of autonomy was linked to the underlying disease and the rehabilitation environment itself. Patients and caregivers felt overwhelmed by events before and during rehabilitation, expressing a need to receive information and discuss prior experiences. They considered communication between hospitals and SNFs to be poor. Patients did not always appreciate contact with peers. Both patients and caregivers appreciated empathic healthcare personnel with a firm knowledge on PD. Conclusions Autonomy, sharing information and contact with others are central themes for patients and caregivers during GR-P in SNFs. We recommend actively exploring these three central themes with every patient and caregiver entering a GR-P program and offering staff continuing education on PD, in order to improve care.

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Section: Methodsmentioning

confidence: 99%

Parkinson rehabilitation in nursing homes: a qualitative exploration of the experiences of patients and caregivers

Fidder

Jaski

Elbertse³

et al. 2022

Eur Geriatr Med

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“…All have a network approach. CHAPS was administered in one of 6 regional Veterans Affairs Centers of Excellence for Parkinson’s disease, called PADRECCs, in the United States with building blocks for networked care [ 46 ]. The PADRECCs expanded care of Parkinson’s through a national Veterans Affairs consortium of providers with movement disorder expertise.…”

Section: Discussionmentioning

confidence: 99%

Implementation fidelity of a nurse-led RCT-tested complex intervention, care coordination for health promotion and activities in Parkinson’s disease (CHAPS) in meeting challenges in care management

et al. 2022

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Background Parkinson’s disease (PD) complexity poses challenges for individuals with Parkinson’s, providers, and researchers. A recent multisite randomized trial of a proactive, telephone-based, nurse-led care management intervention - Care Coordination for Health Promotion and Activities in Parkinson’s Disease (CHAPS) - demonstrated improved PD care quality. Implementation details and supportive stakeholder feedback were subsequently published. To inform decisions on dissemination, CHAPS Model components require evaluations of their fidelity to the Chronic Care Model and to their implementation. Additionally, assessment is needed on whether CHAPS addresses care challenges cited in recent literature. Methods These analyses are based on data from a subset of 140 intervention arm participants and other CHAPS data. To examine CHAPS Model fidelity, we identified CHAPS components corresponding to the Chronic Care Model’s six essential elements. To assess implementation fidelity of these components, we examined data corresponding to Hasson’s modified implementation fidelity framework. Finally, we identified challenges cited in current Parkinson’s care management literature, grouped these into themes using open card sorting techniques, and examined CHAPS data for evidence that CHAPS met these challenges. Results All Chronic Care Model essential elements were addressed by 17 CHAPS components, thus achieving CHAPS Model fidelity. CHAPS implementation fidelity was demonstrated by adherence to content, frequency, and duration with partial fidelity to telephone encounter frequency. We identified potential fidelity moderators for all six of Hasson’s moderator types. Through card sorting, four Parkinson’s care management challenge themes emerged: unmet needs and suggestions for providers (by patient and/or care partner), patient characteristics needing consideration, and standardizing models for Parkinson’s care management. CHAPS activities and stakeholder perceptions addressed all these themes. Conclusions CHAPS, a supportive nurse-led proactive Parkinson’s care management program, improved care quality and is designed to be reproducible and supportive to clinicians. Findings indicated CHAPS Model fidelity occurred to the Chronic Care Model and fidelity to implementation of the CHAPS components was demonstrated. Current Parkinson’s care management challenges were met through CHAPS activities. Thus, dissemination of CHAPS merits consideration by those responsible for implementing changes in clinical practice and reaching people in need. Trial registration ClinicalTrials.gov as NCT01532986, registered on January 13, 2012.

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“…Their individualized treatment plan, was initiated by the allied health professionals of PfP in phase I, focusing on the presented signs and specific symptoms of each patient. These treatments were provided, according to the national guidelines on allied therapies, and handed over to allied health professionals, trained by the Dutch ParkinsonNet ( 17 , 18 ), in their own environment during the rest of the follow-up period during phase II ( 17 ). The medication adjustments in the intervention group strictly followed the Dutch multidisciplinary guideline on PD, focusing on optimal dosing of motor symptoms, the implementation of advanced therapies if necessary, and adequate treatment of non-motor symptoms ( 19 , 20 ).…”

Section: Methodsmentioning

confidence: 99%

Combined multidisciplinary in/outpatient rehabilitation delays definite nursing home admission in advanced Parkinson’s disease patients

et al. 2023

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IntroductionAdvanced Parkinson’s disease (aPD) patients have a high risk on definite nursing home admission. We analyzed the effectiveness of an in-and outpatient multidisciplinary rehabilitation, focusing on activities of daily living (ADL) and delaying definite nursing home admission.MethodsThis study included 24 aPD patients, who received a 6-week inpatient multidisciplinary rehabilitation program, including optimization of pharmacotherapy, which was followed by an individualized outpatient support program during 2 years (intervention group). A non-randomized matched control group (n = 19), received care as usual. Primary endpoints consisted of the Amsterdam Linear Disability Scale (ALDS) and percentage of patients being able to live independently at home after 2 years. Secondary endpoints included changes in medication (LEDD), motor performance (SCOPA-SPES), cognition (SCOPA-COG), hallucinations (NPI) and depression (BDI).ResultsOverall, 83% of patients were able to return home after the 6-week inpatient intervention, and 65% still lived at home at 2 years follow-up. Median ALDS scores after 2 years in the intervention group were significantly better, compared to the control group (p = 0.002). All secondary endpoints had improved significantly vs. baseline directly after the 6-week inpatient rehabilitation, which had disappeared at 2 years follow-up, with the exception of the daily dose of medication, which was significantly higher in the intervention group.ConclusionThis 2-year follow-up study showed that a combined multidisciplinary in/outpatient rehabilitation program for aPD patients, was able to stabilize ADL functions, and finally delayed definite nursing home admissions in 65% of treated patients.Trial registrationfilenumber M10.091051; ABR code NL32699.042.10.

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The Architecture of Contemporary Care Networks for Rare Movement Disorders: Leveraging the ParkinsonNet Experience

Cited by 6 publications

References 23 publications

Parkinson rehabilitation in nursing homes: a qualitative exploration of the experiences of patients and caregivers

Parkinson rehabilitation in nursing homes: a qualitative exploration of the experiences of patients and caregivers

Implementation fidelity of a nurse-led RCT-tested complex intervention, care coordination for health promotion and activities in Parkinson’s disease (CHAPS) in meeting challenges in care management

Combined multidisciplinary in/outpatient rehabilitation delays definite nursing home admission in advanced Parkinson’s disease patients

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