Symptom Distress Among Diverse Patients Referred for Community-Based Palliative Care: Sociodemographic and Medical Correlates

Dhingra, Lara; Barrett, Malcolm; Knotková, Helena; Chen, Jack; Riggs, Alexa; Lee, Bernard T.; Hiney, Barbara; McCarthy, Maureen A.; Portenoy, Russell K.

doi:10.1016/j.jpainsymman.2017.08.015

Cited by 17 publications

(7 citation statements)

References 26 publications

(24 reference statements)

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“…The palliative care trajectory can be accompanied by a period of considerable distress for patients. 1 Distress can be physical, psychological, and existential in nature, comprising of fatigue, pain, sadness and worry. 1 Between 30% and 40% of patients in palliative care experience acute levels of psychological morbidity.…”

Section: Introductionmentioning

confidence: 99%

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Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis

et al. 2021

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Background: Patients in palliative care are usually conceptualised as recipients of support from family caregivers. Family caregivers in palliative care are typically defined as providers of support to patients. Little is known about reciprocal dimensions of support provision between patients and family caregivers in palliative care. Aim: To identify processes of mutual support between patients and family caregivers in palliative care and factors that contribute to or obstruct mutual support between patients and family caregivers in palliative care. Design: Systematic review and narrative synthesis of original peer-reviewed research published between January 2000 and March 2020. Data sources: Medline, CINAHL, Embase, AMED, PsycINFO and PsycARTICLES. Results: After full-text screening, 10 studies were included. We identified that patients and family caregivers in palliative care can support one another by mutually acknowledging the challenges they face, by remaining positive for one another and by jointly adapting to their changing roles. However, patients and family caregivers may not routinely communicate their distress to each other or reciprocate in distress disclosure. A lack of mutual disclosure pertaining to distress can result in conflict between patients and family caregivers. Conclusions: Few studies have focused in whole or in part, on reciprocal dimensions of support provision between patients with advancing non-curable conditions, and their family caregivers in palliative care. Further research is required to identify key domains of mutual support between patients and family caregivers in palliative care.

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Section: Introductionmentioning

confidence: 99%

“… 1 Distress can be physical, psychological, and existential in nature, comprising of fatigue, pain, sadness and worry. 1 Between 30% and 40% of patients in palliative care experience acute levels of psychological morbidity. 2 Patients in palliative care rely heavily on assistance from informal sources of support such as family.…”

Section: Introductionmentioning

confidence: 99%

Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis

et al. 2021

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“…The path to end-of-life can accompany a period of substantial distress for patients and their family caregivers (Dhingra et al, 2018). A family caregiver can be a family member, friend, or another person who has an emotional and social connection with a patient and carries out nonprofessional or unpaid care for patients (Payne, 2010).…”

Section: Introductionmentioning

confidence: 99%

Needs and expectations of family caregivers of cancer patients in palliative care: A study protocol

Fernandes

Domingos²,

Castro³

et al. 2023

Front. Psychol.

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Cancer has an associated burden that continues to grow, affecting patients, family caregivers, and the individual’s community. The family caregivers’ unmet needs may harmfully jeopardize their well-being and the patient’s health outcomes. Therefore, it is essential to understand the needs and expectations of family caregivers of cancer patients to develop and improve care practices. The present study aims to explore the needs and expectations of family caregivers of cancer patients in palliative care. This qualitative, descriptive exploratory study will use purposive sampling to recruit family caregivers and healthcare professionals from the palliative care units of two hospital centers in Lisbon and Tagus Valley. First, the Focus group will be performed until data saturation occurs. Then, a conventional thematic analysis will be applied to analyze data with the help of the coding software QDA Miner Lite database. This study’s findings will help identify gaps in care and provide data that can support healthcare professionals in providing evidence-based centered care to family caregivers. It can also generate knowledge that may help stakeholders to develop a comprehensive support system for cancer survivors in palliative care and their family caregivers.

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“…Over half of Americans are currently living with a chronic illness such as cancer or chronic kidney disease [1,2], and supporting their symptom and care management needs is an urgent priority. Most patients living with a chronic illness experience distressing symptoms and side effects, most commonly fatigue, pain, and emotional distress such as fear or sadness [3][4][5]. Furthermore, these symptoms often go unrecognized by clinicians during regular visits [6,7], leading patients to experience chronically unmanaged symptoms that can escalate and increase the risk of potentially avoidable health care use [8,9].…”

Section: Introductionmentioning

confidence: 99%

Patient-Reported Outcome Dashboards Within the Electronic Health Record to Support Shared Decision-making: Protocol for Co-design and Clinical Evaluation With Patients With Advanced Cancer and Chronic Kidney Disease

Perry¹,

Morken²,

Peipert³

et al. 2022

JMIR Res Protoc

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Background Patient-reported outcomes—symptoms, treatment side effects, and health-related quality of life—are important to consider in chronic illness care. The increasing availability of health IT to collect patient-reported outcomes and integrate results within the electronic health record provides an unprecedented opportunity to support patients’ symptom monitoring, shared decision-making, and effective use of the health care system. Objective The objectives of this study are to co-design a dashboard that displays patient-reported outcomes along with other clinical data (eg, laboratory tests, medications, and appointments) within an electronic health record and conduct a longitudinal demonstration trial to evaluate whether the dashboard is associated with improved shared decision-making and disease management outcomes. Methods Co-design teams comprising study investigators, patients with advanced cancer or chronic kidney disease, their care partners, and their clinicians will collaborate to develop the dashboard. Investigators will work with clinic staff to implement the co-designed dashboard for clinical testing during a demonstration trial. The primary outcome of the demonstration trial is whether the quality of shared decision-making increases from baseline to the 3-month follow-up. Secondary outcomes include longitudinal changes in satisfaction with care, self-efficacy in managing treatments and symptoms, health-related quality of life, and use of costly and potentially avoidable health care services. Implementation outcomes (ie, fidelity, appropriateness, acceptability, feasibility, reach, adoption, and sustainability) during the co-design process and demonstration trial will also be collected and summarized. Results The dashboard co-design process was completed in May 2020, and data collection for the demonstration trial is anticipated to be completed by the end of July 2022. The results will be disseminated in at least one manuscript per study objective. Conclusions This protocol combines stakeholder engagement, health care coproduction frameworks, and health IT to develop a clinically feasible model of person-centered care delivery. The results will inform our current understanding of how best to integrate patient-reported outcome measures into clinical workflows to improve outcomes and reduce the burden of chronic disease on patients and health care systems. International Registered Report Identifier (IRRID) DERR1-10.2196/38461

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Symptom Distress Among Diverse Patients Referred for Community-Based Palliative Care: Sociodemographic and Medical Correlates

Abstract: In a diverse urban population receiving community-based palliative care, symptoms were highly prevalent and distressing, and both sociodemographic and medical factors predicted severe distress. Program planning should consider the needs of subpopulations at risk for high symptom burden.

Cited by 17 publications

References 26 publications

Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis

Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis

Needs and expectations of family caregivers of cancer patients in palliative care: A study protocol

Patient-Reported Outcome Dashboards Within the Electronic Health Record to Support Shared Decision-making: Protocol for Co-design and Clinical Evaluation With Patients With Advanced Cancer and Chronic Kidney Disease

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