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Finding the Ethical Path Forward: A Bioethical and Stakeholder-driven Investigation on the Sharing of Palliative-related Survey Results with Patients, Caregivers and Community Clinicians

Finding the Ethical Path Forward: A Bioethical and Stakeholder-driven Investigation on the Sharing of Palliative-related Survey Results with Patients, Caregivers and Community Clinicians
寻找前进的道德道路:关于与患者、护理人员和社区临床医生共享姑息治疗相关调查结果的生物伦理和利益相关者驱动的调查
批准号:
10790789
负责人:
BENZI M KLUGER
金额:
$30.77万
依托单位:
依托单位国家:
美国
项目类别:
财政年份:
2016
资助国家:
美国
项目状态:
未结题
起止时间:
2016-09-15 至 2026-06-30

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中文摘要
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项目总结/文摘
英文摘要
PROJECT SUMMARY/ABSTRACT Despite growing advocacy to make health data available to patients a standard in clinical care, clinical research data are often not shared with participants despite the potential for this data to improve care and real- world outcomes. The literature shows that most participants want to receive research results. However, there is no clear guidance or consensus on how to ethically and effectively return individual non-genetic research results (IRR). Notably, efforts for increasing transparency in clinical research have been largely limited to genomics with few studies looking at the much more common, and potentially actionable, patient reported outcomes (PRO) collected in the course of clinical research. In this supplement, we focus on return of these patient-reported outcomes to patients, family carepartners, and community clinicians from the perspectives of these key stakeholders, as well as researchers and bioethics. The proposed project is a one-year Bioethics Supplement that leverages an ongoing R01-funded pragmatic trial of community-based palliative care for people living with Parkinson's disease (PD) and Lewy Body Dementia (an NIH-designated Alzheimer Disease Related Disorder; ADRD). Stakeholder participants for this supplement will include our community clinician partners, as well as patients and family carepartners who have completed their final data collection for the parent trial. By making available PROs, it is possible that researchers may increase engagement of participants, convey respect for participants' autonomy, and empower participants' personal decision-making processes. There are also risks, such as increasing anxiety or distress, providing information that is not actionable, interfering in the patient's relationship with their community provider, and contaminating research results if this information leads to changes in health behaviors. There are also privacy concerns regarding what information is shared between patients and family carepartners and between the clinician and the carepartner. It is thus critical to understand what, when, and how to share IRRs. The Specific Aims of this supplement are to: 1) Elicit input from key stakeholders (patients, caregivers, community clinicians, and investigators) to understand views, concerns, and preferences on returning patient- and caregiver-reported outcomes using mixed methods; and, 2) Engage an interdisciplinary committee of bioethicists, palliative care researchers, community clinicians, carepartners, and individuals with PD in a review of the key findings to develop preliminary recommendations about the return of PROs. Lessons learned through this research will inform our future work in PD and palliative care research, including building capacity to incorporate returning patient reported outcome (PRO) results to participants in an ethically sound manner. We anticipate this work will have implications for clinical research outside of palliative care and neurology and may set a foundation for future studies looking to ethically integrate return of PROs and other non-genomic IRRs into trial design.
期刊论文(1)
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会议论文
The "Surprise Question" for Prognostication in People With Parkinson's Disease and Related Disorders.
帕金森病及相关疾病患者的预测“令人惊讶的问题”。
DOI: 10.1016/j.jpainsymman.2023.10.004
发表时间: 2024
期刊: Journal of pain and symptom management
影响因子: 4.7
作者: [Mahes,Ananth, Macchi,ZacharyA, Martin,ChristineS, Katz,Maya, Galifianakis,NicholasB, Pantilat,StevenZ, Kutner,JeanS, Sillau,Stefan, Kluger,BenziM]
通讯作者: Kluger,BenziM
Developing a Prediction Model to Improve End‐of‐Life Prognostication and Hospice Referral in Parkinson's Disease
  • 批准号:
    10524354
  • 项目类别:
  • 资助金额:
    $23.1万
  • 财政年份:
    2022
  • 负责人:
    BENZI M KLUGER
  • 依托单位:
Advancing Palliative Care for Older Adults Affected by Neurodegenerative Disease: Parkinsons disease, Alzheimers disease and Related Dementias
  • 批准号:
    10468798
  • 项目类别:
  • 资助金额:
    $14.22万
  • 财政年份:
    2020
  • 负责人:
    BENZI M KLUGER
  • 依托单位:
Advancing Palliative Care for Older Adults Affected by Neurodegenerative Disease: Parkinsons disease, Alzheimers disease and Related Dementias
  • 批准号:
    10055394
  • 项目类别:
  • 资助金额:
    $14.22万
  • 财政年份:
    2020
  • 负责人:
    BENZI M KLUGER
  • 依托单位:
Advancing Palliative Care for Older Adults Affected by Neurodegenerative Disease: Parkinsons disease, Alzheimers disease and Related Dementias
  • 批准号:
    10264138
  • 项目类别:
  • 资助金额:
    $14.22万
  • 财政年份:
    2020
  • 负责人:
    BENZI M KLUGER
  • 依托单位:
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