November 242, 2023
- October 19, 2023 - Notice of Special Interest (NOSI): Palliative Care in the Care Continuum among Persons with Serious Heart, Lung, Blood and Sleep (HLBS) Diseases and their Caregivers. See Notice NOT-HL-23-117.
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
The purpose of this Notice is to withdraw the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) from participation in NOT-HL-23-117, "Notice of Special Interest (NOSI): Palliative Care in the Care Continuum among Persons with Serious Heart, Lung, Blood and Sleep (HLBS) Diseases and their Caregivers."
Effective immediately, the text of NOT-HL-23-117 is modified as indicated below:
Currently Reads:
Issued by
National Heart, Lung, and Blood Institute (NHLBI)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
National Institute on Minority Health and Health Disparities (NIMHD)
Modified to Read:
Issued by
National Heart, Lung, and Blood Institute (NHLBI)
National Institute on Minority Health and Health Disparities (NIMHD)
Current Language:
Scope
The goal of this NOSI is to support research focused on palliative care for patients with serious HLBS diseases, and specifically encourage integrating palliative care early in the continuum of care; research on strategies to educate physicians on the role of palliative care; addressing care transitions to/from palliative care settings and coordination of care; research on symptom management; and addressing palliative care needs of populations experiencing health disparities.
National Heart, Lung, and Blood Institute (NHLBI)
Questions that could be addressed in response to this NOSI could include, but are not limited to, the following:
- How can palliative care be integrated early in the course of the disease for patients with serious HLBS illnesses?
- How could palliative care be delivered more effectively for populations that experience health disparities, including racial and ethnic minority groups, rural populations, and those with low socioeconomic status?
- What approaches can promote equitable access to quality palliative care and end-of-life care tailored to meet patients' unique needs, especially among hard-to-reach, indigenous, and other marginalized groups?
- How can palliative care be optimized to meet the unique needs of neonatal and pediatric populations and their families?
- How can interventions among seriously ill patients with HLBS diseases be optimized using novel study designs to evaluate, develop, and test implementation outcomes such as acceptability, adoption, penetration, and sustainability?
- What innovative strategies can be developed for delivering palliative care in the community and other non-hospital settings to patients with serious HLBS illnesses?
- What strategies can be used to re-frame the notion of palliative care to overcome the misconception regarding perceived synonymity with end-of-life?
- How can the type, level, dose, and timing of palliative care be optimized to match the needs of the patient, caregiver, and family network?
- What triggers, thresholds, and tools (including machine learning) can be used to determine appropriate timing for initiating primary and secondary palliative care, and how can we assure that palliative care initiation needs rather than prognosis-based needs of HLBS diseases and their caregivers are addressed?
- How can common burdensome symptoms in adults and children with cardiorespiratory diseases, such as cough, clearing of airway secretion, and shortness of breath, be better addressed?
- How can sleep disturbances during treatment or at the end of life be improved?
- How can advance care planning be integrated as a longitudinal process of communication that begins soon after the diagnosis of HLBS illness?
- How can shared decision-making be used to facilitate early conversations about palliative care?
- What care models of ICU-based palliative care are most effective for acute respiratory failure and acute decompensated heart failure patients and their families, and how is this influenced by the ICU structure and/or culture?
- How can high-quality palliative care be delivered by multidisciplinary team approaches which integrate general cardiologists, heart failure specialists, pulmonologists, hematologists, primary care physicians, nurses, social workers, pharmacists, psychologists, and other clinicians?
- What strategies can be used to implement a collaborative primary palliative care model in serious illnesses with non-PC-trained clinicians to bridge the PC gap and achieve early integration of PC principles in the trajectory of a serious illness?
- What innovative, multidisciplinary strategies can address health disparities in the management of symptoms and facilitate sustained delivery of evidence-based palliative care in historically marginalized populations with HLBS diseases?
- Can palliative care delivery in chronic HLBS diseases be improved by increasing patient/caregiver-physician communication using mobile apps and other new technologies?
- How can we effectively engage patients and their caregivers in palliative care research? What outcomes are most valid and responsive in determining the effectiveness of PC interventions, and what is the impact of PC interventions on these outcomes?
Applicants are encouraged to contact the Scientific/Research contact listed in this NOSI to ensure that the proposed aims are consistent with the mission of NHLBI.
National Institute on Minority Health and Health Disparities (NIMHD)
Populations experiencing health disparities may have unique preferences, decision-making, self-care strategies, access, and use of informal or complementary therapies, care-giving, and family and social networks that affect their choice and use of palliative and/or end-of-life care. There also remains an overall distrust of the health care system and institutions, as well as underutilization of current palliative care services. Racial and ethnic minorities are also more likely to have multiple chronic conditions, which impact their health-related quality of life in an exponentially larger manner and make their medical care more complex. People with disabilities may also have higher levels of distrust in both individual clinicians and the medical system. Moreover, clinicians may assume that those with disabilities have poorer quality of life prior to serious illness. In addition, populations that experience health disparities are more likely to experience racially and culturally discordant care. Less is known about palliative and/or end-of-life care consultation, utilization, care transition, and care coordination among the interdisciplinary care team, patient, and caregiver/family. NIMHD is interested in supporting research that focuses on understanding the mechanisms and pathways that contribute to disparities in palliative and/or end-of-life care consultation, utilization and care transition by examining the interplay of factors from multiple levels of influence (e.g., individual, family, community, clinician, and health systems) in one or more populations that experience health disparities (e.g., African Americans/Blacks, Hispanics/Latinos, American Indians/Alaska Natives, Asian Americans, Native Hawaiians and Other Pacific Islanders, underserved rural populations, people with lower socioeconomic status, sexual and gender minority populations, and people with disabilities), and set the foundation for tailored and effective interventions to reduce those disparities. Of specific interest is the focus on racial and ethnic minority populations and/or low socioeconomic status (SES) persons. The intersectionality of race and ethnicity and/or low SES with rural populations or sexual and gender minority (SGM) groups, and people with disabilities is also a priority. Research may propose using available secondary data, health system data, and/or collection of primary data.
Research topics of interest include, but are not limited to, the following:
- Identifying values, beliefs, preferences, and goals for racial and ethnic minorities or other health disparity populations' patients, families, and caregivers and how these affect palliative and/or end-of-life care decisions and outcomes. For example, understanding the role and use of self-management practices such as cultural, traditional, and spiritual approaches.
- Understanding the role of individual, family, culture, clinician, health system, and social factors that impede or strengthen palliative and/or end-of-life care.
- Exploring how health literacy and advanced care planning can be improved to address barriers, attitudes, values, and goals for patients from populations that experience health disparities, as well as clinicians, and health care systems.
- Understanding the context of care settings (e.g., safety net and rural facilities, community practices, hospitals, long-term care, and home-based settings), how these affect health outcomes, and what influences the patterns of choice, utilization, and quality of the settings.
- Understanding characteristics of settings or health professionals that facilitate or limit the delivery of palliative care to patients with serious health conditions from populations that experience health disparities.
- Developing, testing and/or evaluating intervention strategies that promote palliative and/or end-of-life care among populations that experience health disparities who also experience medical mistrust.
- Developing, testing and/or evaluating care coordination challenges or breakdowns in the diagnostic or care pathways from one care setting or level to another; multiple care transitions to and from the home, care facilities, and palliative care settings; and coordinating with other agencies and interdisciplinary care teams to meet the whole person needs of populations that experience health disparities. These may include addressing care team functioning (e.g., communication) and care setting infrastructures (e.g., coordination tools) to optimize care delivery both within and across care teams (including the patient and caregiver/family), care settings, and other agencies involved in meeting their needs.
- Understanding the pathways that macro-level factors (i.e., structural racism, institutionalized discrimination) impede access to palliative and/or end-of-life care for populations that experience disparities.
- Studies that effectively address health determinants from environmental, cultural, social, and health care system levels within patient-centered interventions.
- Studies that improve and explore new and existing palliative and/or end-of-life care assessments (e.g., symptom burden, quality of life, values and treatment preferences, subjective mental and physical well-being, social support, financial status, sociocultural factors, and other biological or psychosocial variables) to distinguish the quality, values, preferences, and goals that are tailored to populations that experience health disparities.
- Studies that rigorously examine what components of effective evidence-based interventions can be adapted to address the palliative care needs of populations experiencing health disparities. and to understand the mechanisms/pathways through which intervention effects occur.
- Studies that focus on promoting resiliency/protective factors that can strengthen palliative/end-of-life care among populations experiencing health disparities.
National Institute of Child Health and Human Development (NICHD)
NICHD supports biomedical, behavioral, and interventional research aimed at improving the health and well-being of children, families, and communities with serious HLBS diseases and their caregivers throughout the world. The NICHD is interested in studies that focus on addressing the palliative care needs of children and pregnant or lactating people.
Research topics of particular interest include, but are not limited to, the following:
- Palliative care in the critically ill infant or child
- Communication and decision-making in the pediatric or maternal patient and their families
- Symptom management of children and pregnant and lactating people with serious HLBS disease
- Education of pediatric palliative care clinicians
Modified Language:
Scope
The goal of this NOSI is to support research focused on palliative care for patients with serious HLBS diseases, and specifically encourage integrating palliative care early in the continuum of care; research on strategies to educate physicians on the role of palliative care; addressing care transitions to/from palliative care settings and coordination of care; research on symptom management; and addressing palliative care needs of populations experiencing health disparities.
National Heart, Lung, and Blood Institute (NHLBI)
Questions that could be addressed in response to this NOSI could include, but are not limited to, the following:
- How can palliative care be integrated early in the course of the disease for patients with serious HLBS illnesses?
- How could palliative care be delivered more effectively for populations that experience health disparities, including racial and ethnic minority groups, rural populations, and those with low socioeconomic status?
- What approaches can promote equitable access to quality palliative care and end-of-life care tailored to meet patients' unique needs, especially among hard-to-reach, indigenous, and other marginalized groups?
- How can palliative care be optimized to meet the unique needs of neonatal and pediatric populations and their families?
- How can interventions among seriously ill patients with HLBS diseases be optimized using novel study designs to evaluate, develop, and test implementation outcomes such as acceptability, adoption, penetration, and sustainability?
- What innovative strategies can be developed for delivering palliative care in the community and other non-hospital settings to patients with serious HLBS illnesses?
- What strategies can be used to re-frame the notion of palliative care to overcome the misconception regarding perceived synonymity with end-of-life?
- How can the type, level, dose, and timing of palliative care be optimized to match the needs of the patient, caregiver, and family network?
- What triggers, thresholds and tools (including machine learning) can be used to determine appropriate timing for initiating primary and secondary palliative care, and how can we assure that palliative care initiation needs rather than prognosis-based needs of HLBS diseases and their caregivers are addressed?
- How can common burdensome symptoms in adults and children with cardiorespiratory diseases, such as cough, clearing of airway secretion, and shortness of breath, be better addressed?
- How can sleep disturbances during treatment or at the end of life be improved?
- How can advanced care planning be integrated as a longitudinal process of communication that begins soon after the diagnosis of HLBS illness?
- How can shared decision-making be used to facilitate early conversations about palliative care?
- What care models of ICU-based palliative care are most effective for acute respiratory failure and acute decompensated heart failure patients and their families, and how is this influenced by the ICU structure and/or culture?
- How can high-quality palliative care be delivered by multidisciplinary team approaches which integrate general cardiologists, heart failure specialists, pulmonologists, hematologists, primary care physicians, nurses, social workers, pharmacists, psychologists, and other clinicians?
- What strategies can be used to implement a collaborative primary palliative care model in serious illnesses with non-PC-trained clinicians to bridge the PC gap and achieve early integration of PC principles in the trajectory of a serious illness?
- What innovative, multidisciplinary strategies can address health disparities in management of symptoms and facilitate sustained delivery of evidence-based palliative care in historically marginalized populations with HLBS diseases?
- Can palliative care delivery in chronic HLBS diseases be improved by increasing patient/caregiver-physician communication using mobile apps and other new technologies?
- How can we effectively engage patients and their caregivers in palliative care research? What outcomes are most valid and responsive in determining the effectiveness of PC interventions, and what is the impact of PC interventions on these outcomes?
Applicants are encouraged to contact the Scientific/Research contact listed in this NOSI to ensure that the proposed aims are consistent with the mission of NHLBI.
National Institute on Minority Health and Health Disparities (NIMHD)
Populations experiencing health disparities may have unique preferences, decision-making, self-care strategies, access, and use of informal or complementary therapies, care-giving, and family and social networks that affect their choice and use of palliative and/or end-of-life care. There also remains an overall distrust of the health care system and institutions, as well as underutilization of current palliative care services. Racial and ethnic minorities are also more likely to have multiple chronic conditions, which impact their health-related quality of life in an exponentially larger manner and make their medical care more complex. People with disabilities may also have higher levels of distrust in both individual clinicians and the medical system. Moreover, clinicians may assume that those with disabilities have poorer quality of life prior to serious illness. In addition, populations that experience health disparities are more likely to experience racially and culturally discordant care. Less is known about palliative and/or end-of-life care consultation, utilization, care transition, and care coordination among the interdisciplinary care team, patient, and caregiver/family. NIMHD is interested in supporting research that focuses on understanding the mechanisms and pathways that contribute to disparities in palliative and/or end-of-life care consultation, utilization, and care transition by examining the interplay of factors from multiple levels of influence (e.g., individual, family, community, clinician, and health systems) in one or more populations that experience health disparities (e.g., African Americans/Blacks, Hispanics/Latinos, American Indians/Alaska Natives, Asian Americans, Native Hawaiians, and Other Pacific Islanders, underserved rural populations, people with lower socioeconomic status, sexual and gender minority populations, and people with disabilities), and set the foundation for tailored and effective interventions to reduce those disparities. Of specific interest is the focus on racial and ethnic minority populations and/or low socioeconomic status (SES) persons. The intersectionality of race and ethnicity and/or low SES with rural populations or sexual and gender minority (SGM) groups, and people with disabilities is also a priority. Research may propose using available secondary data, health system data, and/or collection of primary data.
Research topics of interest include, but are not limited to, the following:
- Identifying values, beliefs, preferences, and goals for racial and ethnic minorities or other health disparity populations' patients, families, and caregivers and how these affect palliative and/or end-of-life care decisions and outcomes. For example, understanding the role and use of self-management practices such as cultural, traditional, and spiritual approaches.
- Understanding the role of individual, family, culture, clinician, health system, and social factors that impede or strengthen palliative and/or end-of-life care.
- Exploring how health literacy and advanced care planning can be improved to address barriers, attitudes, values, and goals for patients from populations that experience health disparities, as well as clinicians, and health care systems.
- Understanding the context of care settings (e.g., safety net and rural facilities, community practices, hospitals, long-term care, and home-based settings), how these affect health outcomes, and what influences the patterns of choice, utilization, and quality of the settings.
- Understanding characteristics of settings or health professionals that facilitate or limit the delivery of palliative care to patients with serious health conditions from populations that experience health disparities.
- Developing, testing, and/or evaluating intervention strategies that promote palliative and/or end-of-life care among populations that experience health disparities who also experience medical mistrust.
- Developing, testing, and/or evaluating care coordination challenges or breakdowns in the diagnostic or care pathways from one care setting or level to another; multiple care transitions to and from the home, care facilities, and palliative care settings; and coordinating with other agencies and interdisciplinary care teams to meet the whole person needs of populations that experience health disparities. These may include addressing care team functioning (e.g., communication) and care setting infrastructures (e.g., coordination tools) to optimize care delivery both within and across care teams (including the patient and caregiver/family), care settings, and other agencies involved in meeting their needs.
- Understanding the pathways that macro-level factors (i.e., structural racism, institutionalized discrimination) impede access to palliative and/or end-of-life care for populations that experience disparities.
- Studies that effectively address health determinants from environmental, cultural, social, and health care system levels within patient-centered interventions.
- Studies that improve and explore new and existing palliative and/or end-of-life care assessments (e.g., symptom burden, quality of life, values and treatment preferences, subjective mental and physical well-being, social support, financial status, sociocultural factors, and other biological or psychosocial variables) to distinguish the quality, values, preferences, and goals that are tailored to populations that experience health disparities.
- Studies that rigorously examine what components of effective evidence-based interventions can be adapted to address the palliative care needs of populations experiencing health disparities. and to understand the mechanisms/pathways through which intervention effects occur.
- Studies that focus on promoting resiliency/protective factors that can strengthen palliative/end-of-life care among populations experiencing health disparities.
Currently Reads:
Inquiries
Scientific/Research Contact(s)
Mihaela’s Stefan, MD, PhD
National Heart, Lung, and Blood Institute (NHLBI)
Division of Lung Diseases (DLD)
Telephone: 301-435-4782
Email: [email protected]
Lynne’s Padgett, PhD
National Institute on Minority Health and Health Disparities (NIMHD)
Telephone: 301-827-5511
Email: [email protected]
Tessie October, MD, MPH
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Telephone: 301-827-6757
Email: [email protected]
Peer Review Contact(s)
Examine your eRA Commons account for review assignment and contact information (information appears two weeks after the submission due date).
Financial/Grants Management Contact(s)
Anthony Agresti
National Heart, Lung, and Blood Institute (NHLBI)
Telephone: 301-435-0186
Email: [email protected]
Priscilla Grant, JD
National Institute on Minority Health and Health Disparities (NIMHD)
Telephone: 301-594-8412
Email: [email protected]
Margaret Young
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Telephone: 301-642-4552
Email: [email protected]
Modified to Read:
Scientific/Research Contact(s)
Mihaela’s Stefan, MD, PhD
National Heart, Lung, and Blood Institute (NHLBI)
Division of Lung Diseases (DLD)
Telephone: 301-435-4782
Email: [email protected]
Lynne’s Padgett, PhD
National Institute on Minority Health and Health Disparities (NIMHD)
Telephone: 301-827-5511
Email: [email protected]
Peer Review Contact(s)
Examine your eRA Commons account for review assignment and contact information (information appears two weeks after the submission due date).
Financial/Grants Management Contact(s)
Anthony Agresti
National Heart, Lung, and Blood Institute (NHLBI)
Telephone: 301-435-0186
Email: [email protected]
Priscilla Grant, JD
National Institute on Minority Health and Health Disparities (NIMHD)
Telephone: 301-594-8412
Email: [email protected]
All other aspects of NOT-HL-23-117 remain the same.
Scientific/Research Contact(s)
Mihaela’s Stefan, MD, PhD
National Heart, Lung, and Blood Institute (NHLBI)
Division of Lung Diseases (DLD)
Telephone: 301-435-4782
Email: [email protected]
Lynne’s Padgett, PhD
National Institute on Minority Health and Health Disparities (NIMHD)
Telephone: 301-827-5511
Email: [email protected]
Peer Review Contact(s)
Examine your eRA Commons account for review assignment and contact information (information appears two weeks after the submission due date).
Financial/Grants Management Contact(s)
Anthony Agresti
National Heart, Lung, and Blood Institute (NHLBI)
Telephone: 301-435-0186
Email: [email protected]
Priscilla Grant, JD
National Institute on Minority Health and Health Disparities (NIMHD)
Telephone: 301-594-8412
Email: [email protected]
and Human Services (HHS)
