Meredith A Bock, Zachary A Macchi, Krista L Harrison, Maya Katz, Megan Dini, Jacqueline Jones, Roman Ayele, Jean S Kutner, Steven Z Pantilat, Christine Martin, Stefan Sillau, Benzi Kluger
{"title":"针对帕金森病及相关疾病的新型社区门诊姑息关怀干预措施能否改善护理？来自患者和护理伙伴的定性结果。","authors":"Meredith A Bock, Zachary A Macchi, Krista L Harrison, Maya Katz, Megan Dini, Jacqueline Jones, Roman Ayele, Jean S Kutner, Steven Z Pantilat, Christine Martin, Stefan Sillau, Benzi Kluger","doi":"10.1177/02692163231219923","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Aim: </strong>To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson's disease.</p><p><strong>Design: </strong>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.</p><p><strong>Setting/participants: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":null,"pages":null},"PeriodicalIF":3.6000,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10865748/pdf/","citationCount":"0","resultStr":"{\"title\":\"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.\",\"authors\":\"Meredith A Bock, Zachary A Macchi, Krista L Harrison, Maya Katz, Megan Dini, Jacqueline Jones, Roman Ayele, Jean S Kutner, Steven Z Pantilat, Christine Martin, Stefan Sillau, Benzi Kluger\",\"doi\":\"10.1177/02692163231219923\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>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.</p><p><strong>Aim: </strong>To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson's disease.</p><p><strong>Design: </strong>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.</p><p><strong>Setting/participants: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>\",\"PeriodicalId\":19849,\"journal\":{\"name\":\"Palliative Medicine\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":3.6000,\"publicationDate\":\"2024-02-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10865748/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Palliative Medicine\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1177/02692163231219923\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/1/24 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q1\",\"JCRName\":\"HEALTH CARE SCIENCES & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Palliative Medicine","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/02692163231219923","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/1/24 0:00:00","PubModel":"Epub","JCR":"Q1","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
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, 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.
期刊介绍：
Palliative Medicine is a highly ranked, peer reviewed scholarly journal dedicated to improving knowledge and clinical practice in the palliative care of patients with far advanced disease. This outstanding journal features editorials, original papers, review articles, case reports, correspondence and book reviews. Essential reading for all members of the palliative care team. This journal is a member of the Committee on Publication Ethics (COPE).
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