Palliative care to support the needs of adults with neurological disease

Kluger, Benzi M.; Hudson, Peter; Hanson, Laura C.; Bužgová, Radka; Creutzfeldt, Claire J.; Gursahani, Roop; Sumrall, Malenna; White, C Michael; Oliver, David; Pantilat, Steven Z.

doi:10.1016/s1474-4422(23)00129-1

Cited by 23 publications

(12 citation statements)

References 96 publications

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“…Based on experiences in this trial and other literature, it seems that both time restrictions and skillset expertise may support the use of primary PC for select issues (eg, basic symptom management, screening of psychosocial needs) and to lower the threshold to triage patients and families for specialist PC 48 or other services (eg, mental health counseling, social work) when available. 47 Regarding the current study, there are several potential reasons why this community-based intervention failed to achieve the largely positive results of our prior academicbased intervention, 10 including differences in patient selection, inadequate ongoing reinforcement of clinical skills for community clinicians, modest gains in PC knowledge, and suboptimal involvement of an academic PC team. Notably, in the prior academic PC study, PC team visits were scheduled every 3 months, whereas in the current study, visits with trained community neurologists were slightly less frequent and meetings with other members of the study team were even less frequent and requested in only two-thirds of patients.…”

Section: Discussionmentioning

confidence: 82%

“…On a general level, there is a clear need to improve training in primary PC for non-PC specialists, including neurologists. 13,16,47 There is also a need to clarify what are reasonable expectations for non-PC specialists and what situations require specialist vs primary PC approaches. Based on experiences in this trial and other literature, it seems that both time restrictions and skillset expertise may support the use of primary PC for select issues (eg, basic symptom management, screening of psychosocial needs) and to lower the threshold to triage patients and families for specialist PC 48 or other services (eg, mental health counseling, social work) when available.…”

Section: Discussionmentioning

confidence: 99%

“…Variations in intervention methodology, attenuation of the focus and interdisciplinary approach of specialist PC, and competing clinical demands for non–PC specialists may all contribute to limited clinical benefits. On a general level, there is a clear need to improve training in primary PC for non–PC specialists, including neurologists . There is also a need to clarify what are reasonable expectations for non–PC specialists and what situations require specialist vs primary PC approaches.…”

Section: Discussionmentioning

confidence: 99%

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Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease

Kluger,

Katz,

Galifianakis

et al. 2024

JAMA Neurol

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ImportanceParkinson disease and related disorders (PDRD) are the fastest growing neurodegenerative illness in terms of prevalence and mortality. As evidence builds to support palliative care (PC) for PDRD, studies are needed to guide implementation.ObjectiveTo determine whether PC training for neurologists and remote access to a PC team improves outcomes in patients with PDRD in community settings.Design, Setting, and ParticipantsThis pragmatic, stepped-wedge comparative effectiveness trial enrolled and observed participants from 19 community neurology practices supported by PC teams at 2 academic centers from March 8, 2017, to December 31, 2020. Participants were eligible if they had PDRD and moderate to high PC needs. A total of 612 persons with PDRD were referred; 253 were excluded. Patients were excluded if they had another diagnosis meriting PC, were receiving PC, or were unable or unwilling to follow study procedures. Patients received usual care or the intervention based on when their community neurologist was randomized to start the intervention. Data were analyzed from January 2021 to September 2023.InterventionThe intervention included (1) PC education for community neurologists and (2) team-based PC support via telehealth.Main Outcomes and MeasuresThe primary outcomes were differences at 6 months in patient quality of life (QOL; measured by the Quality of Life in Alzheimer Disease Scale [QOL-AD]) and caregiver burden (Zarit Burden Interview) between the intervention and usual care.ResultsA total of 359 patients with PDRD (233 men [64.9%]; mean [SD] age, 74.0 [8.8] years) and 300 caregivers were enrolled. At 6 months, compared with usual care, participants receiving the intervention had better QOL (QOL-AD score, 0.09 [95% CI, −0.63 to 0.82] vs −0.88 [95% CI, −1.62 to −0.13]; treatment effect estimate, 0.97; 95% CI, 0.07-1.86; P = .03). No significant difference was observed in caregiver burden (Zarit Burden Interview score, 1.19 [95% CI, 0.16 to 2.23] vs 0.55 [95%, −0.44 to 1.54]; treatment effect estimate, 0.64; 95% CI, −0.62 to 1.90; P = .32). Advance directive completion was higher under the intervention (19 of 38 [50%] vs 6 of 31 [19%] among those without directives at the beginning of the study; P = .008). There were no differences in other outcomes.Conclusions and RelevancePC education for community neurologists and provision of team-based PC via telehealth is feasible and may improve QOL and advance care planning. Overall treatment effects were small and suggest opportunities to improve both the intervention and implementation.Trial RegistrationClinicalTrials.gov Identifier: NCT03076671

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Section: Discussionmentioning

confidence: 82%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease

Kluger,

Katz,

Galifianakis

et al. 2024

JAMA Neurol

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“…3 Despite the presence of a growing body of literature supporting the adoption and efficacy of this approach to neurological illnesses, for example Parkinson’s Disease, it remains mostly not accessible. 4 In this context, neuropalliative care represents a growing medical sub-specialty dedicated to advancing educational, research, clinical and advocacy initiatives with the goal of enhancing palliative care for individuals with neurological conditions. 4 Neuropalliative care is focussed on identifying and exploring the opportunities to improve the quality of care, offering clear and sensitive communication, complex symptom management, spiritual and psychological care for patients and caregivers, advance care planning and care at the end of life.…”

Section: Introductionmentioning

confidence: 99%

A systematic practice review: Providing palliative care for people with Parkinson’s disease and their caregivers

Garon,

Weck,

Rosqvist

et al. 2023

Palliat Med

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Background: People with Parkinson’s disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care. Despite the benefits that palliative care could offer, there is no consensus on how it should be delivered. Aim: The aim of this study is to provide a pragmatic overview of the evidence to make clinical recommendations to improve palliative care for people with Parkinson’s disease and their caregivers. Design: A systematic review method was adopted to determine the strength of evidence, supported by feedback from an expert panel, to generate the ‘do’, ‘do not do’ and ‘do not know’ recommendations for palliative care. Data sources: Searches were conducted via OVID to access CINAHL, MEDLINE, EMBASE and the Cochrane Library from 01/01/2006 to 31/05/2021. An additional search was conducted in December 2022. The search was limited to articles that included empirical studies of approaches to enabling palliative care. Results: A total of 62 studies met inclusion criteria. There is evidence that education about palliative care and movement disorders is essential. palliative care should be multi-disciplinary, individualised and coordinated. Proactive involvement and support of caregivers throughout the illness is recommended. Limited data provide referral indicators for palliative care integration. Discussions about advance care planning should be held early. Conclusions: Consideration of palliative care integration based on symptom burden and personal preferences, coordination and continuity of care are needed to maintain the quality of life of people with Parkinson’s disease and their caregivers.

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“…4 Many of the unique features that differentiate NDs from other life-limiting illnesses (eg, cancer) are addressed through psychosocial components of care, including grief (eg, loss of personhood for patients, ambiguous loss for caregivers), uncertainty, shared decision-making, and psychiatric and behavioral disturbances. 5 Although physical and neurocognitive symptomology varies across NDs, psychosocial challenges and intervention approaches are often transdiagnostic. 6,7 In other words, evidence-based psychosocial intervention approaches can be applied across NDs to complement other components of multidisciplinary NPC.…”

mentioning

confidence: 99%

Advancing Methodological Rigor for Psychosocial Aspects of Neuropalliative Care Interventions

Plys,

Grunberg,

Vranceanu

2024

J Palliat Care

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Background: Neurological disorders (NDs) have unique biopsychosocial-spiritual features that impact patients and their families. As a result, the subspeciality of neuropalliative care (NPC) emerged within the past decade and has grown exponentially in research and practice. Given the cognitive, emotional, and behavioral changes associated with NDs, psychosocial components (eg, coping skills) of NPC interventions are essential for improving the quality of life for patients and families. However, psychosocial components of NPC interventions warrant more rigorous testing to improve their evidence base and their likelihood of implementation and dissemination. Aim: In this commentary, we provide methodological recommendations with the goal of improving scientific knowledge and rigor for psychosocial components of multicomponent NPC interventions in clinical trials. Results: We emphasize the need for transparent reporting of psychosocial intervention components; using established models of intervention development to guide the development and testing of multicomponent NPC interventions; identifying mechanisms of action for psychosocial outcomes; and choosing psychometrically sound measures for mechanisms and outcomes. Conclusions: Given the importance of psychosocial care to the holistic NPC model, rigorous testing of psychosocial components of NPC interventions is a high priority for clinical investigators to advance the evidence base and practice of NPC.

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Palliative care to support the needs of adults with neurological disease

Cited by 23 publications

References 96 publications

Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease

Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease

A systematic practice review: Providing palliative care for people with Parkinson’s disease and their caregivers

Advancing Methodological Rigor for Psychosocial Aspects of Neuropalliative Care Interventions

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