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  • 1
    Online Resource
    Online Resource
    Does a novel community-based outpatient palliative care intervention for Parkinson’s disease and related disorders improve care? Qualitative results from patients and care partners
    SAGE Publications ; 2024
    In:  Palliative Medicine Vol. 38, No. 2 ( 2024-02), p. 240-250
    Details
    In: Palliative Medicine, SAGE Publications, Vol. 38, No. 2 ( 2024-02), p. 240-250
    Abstract: Palliative care has the potential to address significant unmet needs in people with Parkinson’s disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability. Aim: To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson’s disease. Design: Qualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care). Transcripts were coded and thematically analyzed through a combination of team-based inductive and deductive coding. Setting/Participants: Twenty-eight patients and 33 care partners purposively sampled from participants in a randomized clinical trial of a palliative care intervention for Parkinson’s disease and related disorders conducted at nine sites. Results: Benefits of the intervention included management of a wider range of non-motor symptoms, facilitation of conversations about the future, greater engagement with the health care team, and increased referrals to resources. Participants identified areas of improvement, including uptake of palliative care training by community neurologists, additional prognostic counseling, and clarity and timeliness of communication with the multidisciplinary team. Conclusions: Clinicians caring for people with Parkinson’s disease and related disorders should screen for non-motor symptoms, provide regular prognostic counseling, and refer to specialty palliative care services earlier in the course of illness. Future interventions should be designed to promote uptake of palliative care training by community neurologists and further optimize referral to and coordination with in-person or remote specialty palliative teams.
    Type of Medium: Online Resource
    ISSN: 0269-2163 , 1477-030X
    URL: Article
    DOI: 10.1177/02692163231219923
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2024
    detail.hit.zdb_id: 2027566-3
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  • 2
    Online Resource
    Online Resource
    Lessons from the COVID-19 pandemic for improving outpatient neuropalliative care: A qualitative study of patient and caregiver perspectives
    SAGE Publications ; 2021
    In:  Palliative Medicine Vol. 35, No. 7 ( 2021-07), p. 1258-1266
    Details
    In: Palliative Medicine, SAGE Publications, Vol. 35, No. 7 ( 2021-07), p. 1258-1266
    Abstract: COVID-19 has impacted persons with serious illness, including those with chronic, neurodegenerative conditions. While there are several reports on COVID-19’s impact on inpatient palliative care, literature is limited about the impact on outpatient care which may be more relevant for these patients. Aim: To generate a person-centered description of the impact of COVID-19 from the perspectives of patients living with neurodegenerative disease and caregivers to improve outpatient palliative care delivery. Design: This qualitative study used rapid analysis via matrix design to identify emergent themes related to participant perspectives on the challenges of COVID-19. Data sources included semi-structured interviews, open-ended survey responses, medical record documentation and participant-researcher communications. Setting/Participants: Data was collected from 108 patients with Parkinson’s disease, Alzheimer’s disease or related disorders and 90 caregivers enrolled in a multicenter, clinical trial of community-based, outpatient palliative care between March 20, 2020 and August 8, 2020 (NCT03076671). Results: Four main themes emerged: (1) disruptions to delivery of healthcare and other supportive services; (2) increased symptomatic and psychosocial needs; (3) increased caregiver burden; (4) limitations of telecommunications when compared to in-person contact. We observed that these themes interacted and intersected. Conclusions: Patients and caregivers have unmet care needs because of the pandemic, exacerbated by social isolation. While telemedicine has helped improve access to healthcare, patients and caregivers perceive clear limitations compared to in-person services. Changes in society and healthcare delivery in response to COVID-19 highlight ongoing and novel gaps that must be addressed to optimize future outpatient palliative care for neurologic illness.
    Type of Medium: Online Resource
    ISSN: 0269-2163 , 1477-030X
    URL: Article
    DOI: 10.1177/02692163211017383
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2021
    detail.hit.zdb_id: 2027566-3
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  • 3
    Online Resource
    Online Resource
    Delirium Following Anticholinergic Use in Hospitalized Patients With Dementia
    SAGE Publications ; 2023
    In:  The Neurohospitalist Vol. 13, No. 2 ( 2023-04), p. 153-155
    Details
    In: The Neurohospitalist, SAGE Publications, Vol. 13, No. 2 ( 2023-04), p. 153-155
    Abstract: We sought to explore rates of delirium amongst hospitalized patients with dementia following orders for anticholinergic medications. We hypothesized that patients receiving anticholinergic medications would have higher rates of delirium than similar, unexposed patients. We performed a retrospective chart review of 23 031 hospitalized individuals with Alzheimer’s disease, vascular dementia, or unspecified dementia from 2011-2018. Rates of delirium diagnosis and haloperidol orders following anticholinergic administration were compared to patients with dementia without anticholinergic orders. Significant differences in rates of delirium and orders for haloperidol were observed between exposed and unexposed groups, with delirium having a relative risk of 2.3 and orders for haloperidol having a relative risk of 10.4. The number needed to harm for anticholinergic exposure was 5.45 for delirium and 7.09 for haloperidol. The identified difference suggests that inpatient use of anticholinergic medications may increase the risk of delirium in hospitalized patients with dementia. Despite this risk, our review suggests that anticholinergic administration is common during hospital stays among patients with dementia. Anticholinergic use may be a modifiable risk factor for delirium prevention, which could improve inpatient management of patients with dementia.
    Type of Medium: Online Resource
    ISSN: 1941-8744 , 1941-8752
    URL: Article
    DOI: 10.1177/19418744221135914
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2023
    detail.hit.zdb_id: 2629083-2
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  • 4
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    Palliative Care in Movement Disorders: an Evolving Field
    Springer Science and Business Media LLC ; 2021
    In:  Current Neurology and Neuroscience Reports Vol. 21, No. 3 ( 2021-03)
    Details
    In: Current Neurology and Neuroscience Reports, Springer Science and Business Media LLC, Vol. 21, No. 3 ( 2021-03)
    Type of Medium: Online Resource
    ISSN: 1528-4042 , 1534-6293
    URL: Article
    DOI: 10.1007/s11910-021-01091-5
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2094171-7
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  • 5
    Online Resource
    Online Resource
    Prognosis in substance abuse-related acute toxic leukoencephalopathy: A scoping review
    Elsevier BV ; 2022
    In:  Journal of the Neurological Sciences Vol. 442 ( 2022-11), p. 120420-
    Details
    In: Journal of the Neurological Sciences, Elsevier BV, Vol. 442 ( 2022-11), p. 120420-
    Type of Medium: Online Resource
    ISSN: 0022-510X
    URL: Article
    DOI: 10.1016/j.jns.2022.120420
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2022
    detail.hit.zdb_id: 1500645-1
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  • 6
    Online Resource
    Online Resource
    What's in the Sauce? The Specific Benefits of Palliative Care for Parkinson's Disease
    Elsevier BV ; 2022
    In:  Journal of Pain and Symptom Management Vol. 63, No. 6 ( 2022-06), p. 1031-1040
    Details
    In: Journal of Pain and Symptom Management, Elsevier BV, Vol. 63, No. 6 ( 2022-06), p. 1031-1040
    Type of Medium: Online Resource
    ISSN: 0885-3924
    URL: Article
    DOI: 10.1016/j.jpainsymman.2022.01.017
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2022
    detail.hit.zdb_id: 1500639-6
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  • 7
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    Online Resource
    Experience of Community Neurologists Providing Care for Patients With Neurodegenerative Illness During the COVID-19 Pandemic
    Ovid Technologies (Wolters Kluwer Health) ; 2021
    In:  Neurology Vol. 97, No. 10 ( 2021-09-7), p. e988-e995
    Details
    In: Neurology, Ovid Technologies (Wolters Kluwer Health), Vol. 97, No. 10 ( 2021-09-7), p. e988-e995
    Abstract: Health care delivery systems transformed rapidly at the beginning of the coronavirus disease 2019 (COVID-19) pandemic to slow the spread of the virus while identifying novel methods for providing care. In many ways, the pandemic affected both persons with neurologic illness and neurologists. This study describes the perspectives and experiences of community neurologists providing care for patients with neurodegenerative illnesses during the COVID-19 pandemic. Methods We conducted a qualitative study with 20 community neurologists from a multisite comparative-effectiveness trial of outpatient palliative care from July 23, 2020, to November 11, 2020. Participants were interviewed individually about the impact of the coronavirus disease 2019 (COVID-19) pandemic on their professional and personal lives. Interviews were analyzed with matrix analysis to identify key themes. Results Four main themes illustrated the impact of the pandemic on community neurologists: (1) challenges of the current political climate, (2) lack of support for new models of care, (3) being on the frontline of suffering, and (4) clinician self-care. Taken together, the themes capture the unusual environment in which community neurologists practice, the lack of clinician trust among some patients, patient and professional isolation, and opportunities to support quality care delivery. Conclusions The COVID-19 pandemic and pandemic politics created an environment that made care provision challenging for community neurologists. Efforts to improve care delivery should proactively work to reduce clinician burnout while incorporating support for new models of care adopted due to the pandemic. Trial Registration Information ClinicalTrials.gov identifier: NCT03076671.
    Type of Medium: Online Resource
    ISSN: 0028-3878 , 1526-632X
    URL: Article
    DOI: 10.1212/WNL.0000000000012363
    RVK:
    XA 10000
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2021
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  • 8
    Online Resource
    Online Resource
    The “Surprise Question” for Prognostication in People With Parkinson's Disease and Related Disorders
    Elsevier BV ; 2023
    In:  Journal of Pain and Symptom Management ( 2023-10)
    Details
    In: Journal of Pain and Symptom Management, Elsevier BV, ( 2023-10)
    Type of Medium: Online Resource
    ISSN: 0885-3924
    URL: Article
    DOI: 10.1016/j.jpainsymman.2023.10.004
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2023
    detail.hit.zdb_id: 1500639-6
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  • 9
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    Online Resource
    Prevalence and Cumulative Incidence of Caregiver-Reported Aggression in Advanced Parkinson Disease and Related Disorders
    Ovid Technologies (Wolters Kluwer Health) ; 2021
    In:  Neurology: Clinical Practice
    Details
    In: Neurology: Clinical Practice, Ovid Technologies (Wolters Kluwer Health)
    Abstract: To estimate the point prevalence and cumulative incidence of caregiver-reported aggressive behaviors amongst people living with advanced Parkinson’s disease and related disorders (PDRD) and secondarily examine variables associated with aggression. Methods: Caregivers from a clinical trial of outpatient palliative care for PDRD were surveyed about patient aggression at baseline and every three months over 12 months. Baseline responses were used for point prevalence. Cumulative incidence was calculated using responses from caregivers with no reported baseline aggression and available data at all other timepoints. Measures of disease severity, quality of life, mood and caregiver burden were included in correlation and relative risk models, adjusting for age, sex, and diagnosis. Results: Of 170 caregivers, 31 (18.2%) reported physical aggression and 18 (10.6%) reported sexual aggression. 12-month cumulative incidence for physical and sexual aggression were 21.1% (23/109) and 16.0% (19/119) respectively. Physical aggression cumulative incidence was associated with patient depression (r=0.37), patient-perceived quality of life (r= -0.26), caregiver burden (r=0.26), caregiver-perceived patient quality of life (r= -0.26), and caregiver anxiety (r=0.20). Age, sex, cognitive impairment and dementia were not associated with aggression. No variables were associated with cumulative sexual aggression. Conclusion: There was a high prevalence and incidence of aggression in our PDRD cohort. This is an understudied issue in PDRD and our findings highlight the need for increased awareness among neurologists. Providers should consider assessing for aggression when discussing neuropsychiatric symptoms or screening for caregiver burden. Future research should examine the relationship between aggression and patient and caregiver health outcomes.
    Type of Medium: Online Resource
    ISSN: 2163-0402 , 2163-0933
    URL: Article
    DOI: 10.1212/CPJ.0000000000001110
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2021
    detail.hit.zdb_id: 2645818-4
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  • 10
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    Online Resource
    Psychiatric Comorbidities in Functional Movement Disorders: A Retrospective Cohort Study
    Wiley ; 2021
    In:  Movement Disorders Clinical Practice Vol. 8, No. 5 ( 2021-07), p. 725-732
    Details
    In: Movement Disorders Clinical Practice, Wiley, Vol. 8, No. 5 ( 2021-07), p. 725-732
    Abstract: Functional movement disorders (FMD) are characterized by abnormal movements and motor symptoms incongruent with a known structural neurologic cause. While psychological stressors have long been considered an important risk factor for developing FMD, little is known about the impact of psychiatric comorbidities on disease manifestations or complexity. Objectives To compare characteristics of FMD patients with co‐occurring mood and trauma‐related psychiatric conditions to FMD patients without psychiatric conditions. Methods We performed a retrospective cohort study of patients seen in the University of Colorado Health system between January 1, 2015 and December 31, 2019. Patients were included if they had a diagnosis of FMD, determined by ICD‐10 coding and ≥1 phenomenology‐related diagnostic code (tremor, gait disturbances, ataxia, spasms, and weakness), and at least one encounter with a neurology specialist. Fisher's exact and unpaired t‐tests were used to compare demographics, healthcare utilization, and phenomenologies of patients with psychiatric conditions to those with none. Results Our review identified 551 patients with a diagnosis of FMD who met inclusion criteria. Patients with psychiatric conditions (N = 417, 75.7%) had increased five‐year healthcare utilization (mean emergency room encounters 9.9 vs. 3.5, P  = 0.0001) and more prevalent non‐epileptic seizures (18.2% vs. 7.5%, P  = 0.001). Suicidal ideation (8.4%) and self‐harm (4.1%) were only observed amongst patients with comorbid psychiatric conditions. Conclusions Patients with FMD and comorbid psychiatric conditions require more healthcare resources and have greater disease complexity than patients without psychiatric illness. This may have implications for treatment of patients without comorbid psychiatric conditions who may benefit from targeted physiotherapy alone.
    Type of Medium: Online Resource
    ISSN: 2330-1619 , 2330-1619
    URL: Issue
    URL: Article
    DOI: 10.1002/mdc3.v8.5
    DOI: 10.1002/mdc3.13226
    Language: English
    Publisher: Wiley
    Publication Date: 2021
    detail.hit.zdb_id: 2772809-2
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