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.
Background: 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, c...
| Publicado en: | Palliative Medicine Vol. 38; no. 2; pp. 240 - 251 |
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| Autores principales: | , , , , , , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Sage Publications Inc.
Feb2024
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=175442749&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 175442749 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 02692163 31I jtl: Palliative Medicine issn: 02692163 maglogo: Y pubinfo: dt: Feb2024 vid: 38 iid: 2 pid: 344 pub: Sage Publications Inc. place: Thousand Oaks, California artinfo: ui: 175442749 174988740 175442749 175442749 10.1177/02692163231219923 175442749 ppf: 240 ppct: 11 formats: tig: atl: 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. aug: au: Bock, Meredith A Macchi, Zachary A Harrison, Krista L Katz, Maya Dini, Megan Jones, Jacqueline Ayele, Roman Kutner, Jean S Pantilat, Steven Z Martin, Christine Sillau, Stefan Kluger, Benzi affil: Department of Neurology at University of California, San Francisco, CA, USA sug: subj: Caregivers Psychosocial Factors Caregiver Attitudes Patient Attitudes Attitude to Medical Treatment Community Health Services Outpatient Service Palliative Care Parkinson Disease Therapy Quality Improvement Quality of Health Care Human Qualitative Studies Outpatients Neurologists Health Services Needs and Demand Thematic Analysis Coding Purposive Sample Health Services Accessibility Patient Compliance Referral and Consultation Counseling Communication Multidisciplinary Care Team Telemedicine Implementation Science Funding Source ab: Background: 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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