Palliative care for patients with Parkinson&amp;rsquo;s disease: an interdisciplinary review and next step model

Su, Kimmy; Carter, Julie H; Tuck, Keiran K.; Borcich, Tony; Bryans, Linda; Mann, Lisa; Wilhelm, Jennifer; Fromme, Erik K.

doi:10.2147/jprls.s106184

Cited by 4 publications

(5 citation statements)

References 85 publications

(90 reference statements)

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“…In the outpatient setting, this model may be realized through a multidisciplinary clinic where neurologists, palliative or neuropalliative care specialists, and an interdisciplinary team cohabitate a clinic space. 26,27 In the inpatient setting, palliative or neuropalliative care specialists would join discussions on rounds and family meetings are held with both neurology and palliative care teams together. C. A primary neuropalliative care model involving palliative care education and training for neurologists to provide neuropalliative care themselves.…”

Section: Develop and Implement Effective Models Of Integrating Palliamentioning

confidence: 99%

Neuropalliative care

et al. 2018

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Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and international experts in the field to develop a clinical, educational, and research agenda to move the field forward. Clinical priorities included the need to develop and implement effective models to integrate palliative care into neurology and to develop and implement informative quality measures to evaluate and compare palliative approaches. Educational priorities included the need to improve the messaging of palliative care and to create standards for palliative care education for neurologists and neurology education for palliative specialists. Research priorities included the need to improve the evidence base across the entire research spectrum from early-stage interventional research to implementation science. Highest priority areas include focusing on outcomes important to patients and families, developing serious conversation triggers, and developing novel approaches to patient and family engagement, including improvements to decision quality. As we continue to make remarkable advances in the prevention, diagnosis, and treatment of neurologic illness, neurologists will face an increasing need to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body. This article outlines opportunities to improve the quality of care for all patients with neurologic illness and their families through a broad range of clinical, educational, and investigative efforts that include complex symptom management, communication skills, and models of care.

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Section: Develop and Implement Effective Models Of Integrating Palliamentioning

confidence: 99%

Neuropalliative care

et al. 2018

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“…PN additionally ensured that all care providers were aware of the patients' needs [34,[37][38][39][40][42][43][44][45][46][47][48].…”

Section: U N C O R R E C T E D a U T H O R P R O O Fmentioning

confidence: 99%

Section: U N C O R R E C T E D a U T H O R P R O O Fmentioning

confidence: 99%

“…Moreover PN, facilitated advanced care planning [42] or organized referrals to specific care services [14,31,32,39,42,47,48]. In terms of monitoring the care process, PN performed home visits [29-32, [36][37][38], oversaw and scheduled appointments with specialists for patients [31,32,39,40], documented the care process [38-40, 47, 48] and coordinated these processed within clinical evaluations [31,32,36,40,44,45,47,48,50,53]. However, PN also performed proactive monitoring actions by routinely performing clinical assessments [14, 28-34, 37-39, 44, 46-49], monitoring patients home safety and care needs [39,40,42,43,46,49], evaluation the demand for home palliative care or admissions to hospice care [42,43] and by discussing (side-)effects of medication with patients [31,32,37,38,40,46].…”

Section: U N C O R R E C T E D a U T H O R P R O O Fmentioning

confidence: 99%

“…Five studies reported that PN were responsible for suggesting community resources to patients and for collaborating with community healthcare providers [14,35,36,47,49]. Finally, six themes were identified across the studies which did not fit into one of the proposed dimensions of personalized care but also facilitate the personalization of care processes.…”

Section: U N C O R R E C T E D a U T H O R P R O O Fmentioning

confidence: 99%

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The Role of Parkinson Nurses for Personalizing Care in Parkinson’s Disease: A Systematic Review and Meta-Analysis

Munster

Stümpel

Thieken

et al. 2022

JPD

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Background: Quality of life (QoL) of persons with Parkinson’s disease (PD) is diminished by (non-)motor symptoms, that require personalized care. Parkinson Nurses (PN) may be pivotal promoting tailored care offerings. This systematic review and meta-analysis investigates PD care models and aims at furnishing current concepts of PN to offer personalized care. Objective: The purpose of this study is to identify the various roles and functions that PN may hold for personalized PD care. Methods: We performed a systematic literature review, utilizing: PubMed, Web of Science, The Cochrane Library, and PsycINFO. The review qualitatively evaluated articles, which described personalized care models involving PNs and was guided by the personalized care management model. A meta-analysis compared patient-reported QoL (quantified using the 39-item Parkinson’s Disease Questionnaire) between personalized care interventions involving PN versus standard care with. Results: Twenty-seven publications were identified, including six randomized, controlled trials ascertaining with health related QoL (n = 1830 PwPs). The qualitative evaluation revealed that PN contribute to all aspects of personalized care. The meta-analysis showed no improved QoL in personalized care models compared to standard care, thought a great heterogeneity among study design and interventions was outlined (Standardized Mean Difference = –0.8935; 95% Confidence Interval, –2.1177 to 0.3307; z = –1.43, p = 0.1526). Conclusion: PN fulfil important functions in personalized PD care. For the future, a clear role definition will be necessary to adjust training for PN across healthcare systems and care settings but especially to realize their full potential for PD care.

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