Communicating the Gist of Prognosis: An intervention to improve prognostic understanding in advanced lymphoma
Communicating the Gist of Prognosis: An intervention to improve prognostic understanding in advanced lymphoma
批准号:
10526566
负责人:
Kelly McConnell
金额:
$27.44万
依托单位国家:
美国
项目类别:
财政年份:
2022
资助国家:
美国
项目状态:
已结题
起止时间:
2022-09-25 至 2024-06-30
关键词:
AddressAdvance Care PlanningAdvance DirectivesAdvanced Malignant NeoplasmAgreementBlack raceCancer CenterCancer PatientCaringCessation of lifeClinical ResearchCommunicationDecision MakingDevelopmentDiagnosisDiseaseDisease ProgressionDo Not Resuscitate OrderEnrollmentFocus GroupsFoundationsGoalsHealth PersonnelHealthcareHearingHematologic NeoplasmsHematologistHematologyHospice CareIntensive CareInterventionLearningLiquid substanceLymphomaMalignant NeoplasmsMedicalNational Institute on Minority Health and Health DisparitiesOncologistOutcomePalliative CareParticipantPatientsPre-Post TestsPrognosisPublic HealthQuality of lifeRaceRandomized Controlled TrialsRefractory DiseaseRelapseResearchRiskSolidSolid NeoplasmSurgeonSurvival RateTechniquesTestingTrainingTreatment EfficacyUnited States Centers for Medicare and Medicaid ServicesUnited States National Institutes of Healthacceptability and feasibilitybaseblack patientblack/white disparitycare preferenceclinical carecollegeend of lifeend of life carehealth goalshealth literacyhospice environmenthospital admission rateimprovedinformation processinginnovationintervention effectnovel strategiespatient engagementpilot testpost interventionpreferenceprimary outcomeprognosticracial disparityracial health disparitysatisfactionsecondary outcomestandard caretheoriestherapy designtumor
中文摘要
项目总结
对预后的了解对于晚期癌症患者接受临终关怀的能力至关重要
与他们的喜好一致。对预后有准确认识的晚期癌症患者
更有可能参与提前护理计划(ACP;例如,不复苏命令),更喜欢舒适护理
超过重症监护,接受与他们的偏好一致的护理,并在他们喜欢的死亡地点死亡。
对预后认识的研究主要集中在患有晚期实体瘤的白人患者。这
GAP是值得注意的,因为晚期淋巴瘤的独特疾病轨迹。虽然最初的治疗目标是
随着疾病的进展,大多数患者的治愈和预后突然急剧恶化
濒临死亡。不到一半的恶性血液病患者对
他们的预后或从事ACP和血液系统恶性肿瘤的患者更有可能接受强化治疗
临终关怀优于实体瘤患者。此外,黑人患者对预后的了解较差的比率更高。
和繁重的EOL重症护理,与白人患者相比,他们不太可能参与ACP。低利率
恶性血液病患者,特别是黑人患者的ACP和高比率的EOL护理,
指出有必要进行干预,以提高对预后的理解,减少非加太患者的种族差异。这个
该项目的目的是改进和试行通信干预,以提高黑白效果
晚期淋巴瘤患者对ACP预后的了解和参与。这项研究的目标是:
(1)发展与文化相适应的沟通干预,以提高血液学家明确
与黑人和白人患者就预后进行沟通;(2)评估
对血液科医生和黑白晚期淋巴瘤患者的干预;以及(3)检测治疗前
干预对黑人和白人患者预后理解(主要结果)、参与度的影响
在ACP中,完成高级指令、生活质量、患者与血液学家沟通的满意度、
以及患者-血液学家对患者的医疗保健价值(次要结果)的一致意见。为了满足这些要求
目标:我们将与血液学家(n=16)和黑白相间的晚期淋巴瘤进行焦点小组讨论。
患者(n=32)改进干预措施。接下来,我们将对n=8名血液学家和
N=40名患者,并在基线、干预后和三个月后评估结果,以检查
干预的可行性、可接受性和事前效果。这些结果将通知NIH R01应用程序
进行干预效果的大规模随机对照试验。植根于既定的模糊
痕迹理论,本研究采用了一种新的方法--定向信息加工策略
在决策过程中。这个项目将为研究这个简短的可伸缩的
具有改善预后理解、ACP和价值观一致性EOL护理的强大潜力的干预。
英文摘要
PROJECT SUMMARY
Prognostic understanding is vital to advanced cancer patients’ ability to receive end-of-life (EOL) care
consistent with their preferences. Advanced cancer patients who have an accurate prognostic understanding
are more likely to engage in advance care planning (ACP; e.g. do-not-resuscitate order), prefer comfort care
over intensive care, receive care consistent with their preferences, and die in their preferred place of death.
Research on prognostic understanding has largely focused on white patients with advanced solid tumors. This
gap is notable due to the unique disease trajectory of advanced lymphoma. While the initial treatment goal is
cure, prognosis suddenly and dramatically worsens following disease progression with the majority of patients
nearing death. Less than half of patients with a hematologic malignancy have an accurate understanding of
their prognosis or engage in ACP and hematologic malignancy patients are more likely to receive intensive
EOL care than solid tumor patients. Further, black patients have higher rates of poor prognostic understanding
and burdensome intensive EOL care and are less likely to engage in ACP than white patients. The low rates of
ACP and high rates of intensive EOL care in patients with hematologic malignancies, especially black patients,
point to a need for interventions to improve prognostic understanding and reduce racial disparities in ACP. The
purpose of this project is to refine and pilot test a communication intervention to improve black and white
advanced lymphoma patient prognostic understanding and engagement in ACP. The goals of this study are to:
(1) develop a culturally appropriate communication intervention to improve hematologists’ ability to clearly
communicate to black and white patients about prognosis; (2) evaluate the feasibility and acceptability of the
intervention among hematologists and black and white advanced lymphoma patients; and (3) test the pre-post
effect of the intervention on black and white patient prognostic understanding (primary outcome), engagement
in ACP, completion of advance directives, quality of life, patient and hematologist communication satisfaction,
and patient-hematologist agreement on the patient’s healthcare values (secondary outcomes). To meet these
goals, we will conduct focus groups with hematologists (n=16) and black and white advanced lymphoma
patients (n=32) to improve the intervention. Next, we will pilot test the intervention with n=8 hematologists and
n=40 patients and assess outcomes at baseline, post-intervention, and three months later to examine the
feasibility, acceptability, and pre-post effect of the intervention. These results will inform a NIH R01 application
to conduct a large-scale randomized controlled trial of intervention efficacy. Grounded in the established Fuzzy
Trace Theory, the present study takes the novel approach of targeting information processing strategies used
during decision making. This project will form a strong foundation for research on this brief scalable
intervention with strong potential to improve prognostic understanding, ACP, and values-concordant EOL care.
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