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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 25 of 58 Research Studies DisplayedCzosek RJ, Anderson JB, Baskar S
Predictors and outcomes of heart block during surgical stage I palliation of patients with a single ventricle: a report from the NPC-QIC.
This study investigated patient and surgical risks of heart block and its effect on 12-month transplant-free survival in children with a single ventricle. In total, 1423 patients were identified from the National Pediatric Cardiology Improvement Collaborative with and without heart block. One-year outcomes were analyzed. A very small percentage (2%) developed heart block during their surgical admission. Associated risk factors for block included heterotaxy syndrome and atrial flutter/fibrillation. Patients with complete heart block had lower 12-month survival, which wasn’t true for patients with second degree block. At 12 months of age, 43% of patients with heart block died and were more likely to experience mortality than patients without heart block.
AHRQ-funded; HS021114.
Citation: Czosek RJ, Anderson JB, Baskar S .
Predictors and outcomes of heart block during surgical stage I palliation of patients with a single ventricle: a report from the NPC-QIC.
Heart Rhythm 2021 Nov;18(11):1876-83. doi: 10.1016/j.hrthm.2021.05.019..
Keywords: Children/Adolescents, Heart Disease and Health, Cardiovascular Conditions, Surgery, Palliative Care, Risk, Outcomes
Kaufmann TL, Getz KD, Hsu JY
Identification of patient-reported outcome phenotypes among oncology patients with palliative care needs.
This retrospective study used patient-reported outcome (PRO) data to characterize oncology patients with palliative care needs. The objective was to determine if PRO data can identify latent phenotypes that characterize indications for specialty palliative care referral. Self-reported symptoms were collected on the Edmonton Symptom Assessment Symptom from solid tumor oncology patients (n = 745) referred to outpatient palliative care at eight community and academic sites from October 2012 to October 2018. The authors identified four PRO phenotypes: low symptoms (39.6%); moderate pain/fatigue + mood (24.2%); moderate pain/fatigue + appetite + dypsnea (27%); and high symptoms (9.3%). A secondary analysis of 421 patients found that two brief items assessing social and existential needs aligned with higher severity symptoms and psychological distress phenotypes.
AHRQ-funded; HS023681.
Citation: Kaufmann TL, Getz KD, Hsu JY .
Identification of patient-reported outcome phenotypes among oncology patients with palliative care needs.
JCO Oncol Pract 2021 Oct;17(10):e1473-e88. doi: 10.1200/op.20.00849..
Keywords: Cancer, Palliative Care, Patient-Centered Outcomes Research, Outcomes
Enzinger AC, Ghosh K, Keating NL
US trends in opioid access among patients with poor prognosis cancer near the end-of-life.
This study looked at trends in opioid prescriptions for cancer patients near the end-of-life (EOL) defined as the 30 days before death or hospice enrollment. The authors looked at Medicare part D data from 2007 to 2017 for 270,632 Medicare fee-for-service decedents with poor prognosis cancers. During that time, the proportion of decedents with poor prognosis cancers receiving 1 or greater opioid prescriptions near EOL declined 15.5% and the proportion receiving 1 or greater long-acting opioid prescriptions declined 36.5% to 18.1%. The mean daily dose fell from 24.5%, from 85.6 morphine milligram equivalents per day (MMED) to 64.6. The total amount of opioids prescribed fell from 1,075 morphine milligram equivalents per decedent to 666 morphine milligram equivalents per decedents. At the same time, the proportion of patients with pain-related ED visits increase 50.8% from 13.2% to 19.9%.
AHRQ-funded; HS024072.
Citation: Enzinger AC, Ghosh K, Keating NL .
US trends in opioid access among patients with poor prognosis cancer near the end-of-life.
J Clin Oncol 2021 Sep 10;39(26):2948-58. doi: 10.1200/jco.21.00476..
Keywords: Cancer, Opioids, Palliative Care, Pain, Access to Care, Medication, Practice Patterns
Wells R, Dionne-Odom JN, Azuero A
Examining adherence and dose effect of an early palliative care intervention for advanced heart failure patients.
The objective of this study was to examine the "dose" effect of PC intervention completion vs. noncompletion on quality of life (QoL) and healthcare use in patients with advanced heart failure (HF) over 32 weeks. The investigators concluded that higher intervention completion rates of an early PC intervention was associated with QoL improvements in patients with advanced HF.
AHRQ-funded; HS013852.
Citation: Wells R, Dionne-Odom JN, Azuero A .
Examining adherence and dose effect of an early palliative care intervention for advanced heart failure patients.
J Pain Symptom Manage 2021 Sep;62(3):471-81. doi: 10.1016/j.jpainsymman.2021.01.136..
Keywords: Palliative Care, Heart Disease and Health, Cardiovascular Conditions, Quality of Life, Telehealth, Health Information Technology (HIT)
Wells RD, Guastaferro K, Azuero A
Applying the multiphase optimization strategy for the development of optimized interventions in palliative care.
This article provides a brief overview and application of Multiphase Optimization Strategy, a framework informed by engineering principles, that uses a systematic process to empirically identify an intervention comprised of components that positively contribute to desired outcomes under real-life constraints. The paper includes the authors’ insights from conducting a pilot factorial trial of an early palliative care intervention to enhance the decision support skills of advanced cancer family caregivers (Project CASCADE).
AHRQ-funded; HS013852.
Citation: Wells RD, Guastaferro K, Azuero A .
Applying the multiphase optimization strategy for the development of optimized interventions in palliative care.
J Pain Symptom Manage 2021 Jul;62(1):174-82. doi: 10.1016/j.jpainsymman.2020.11.017..
Keywords: Palliative Care, Research Methodologies
Bogetz JF, Revette A, DeCourcey DD
Clinical care strategies that support parents of children with complex chronic conditions.
This paper examines the best clinical care strategies that support parents of children with complex chronic conditions facing inpatient and end-of-life care in the ICU. Qualitative analysis of 21 open-response items from the cross-sectional “Survey of Caring for Children with Complex Chronic Conditions” was done. Open-ended responses from 110 of 114 survey respondents who were parents of children who received care at a large academic institution and died between 2006 and 2015 were analyzed. Most of the children had congenital/chromosomal complex chronic conditions and had died an average of 3.9 years prior to their parents’ study participation. The respondents emphasized the relational aspects of clinical care including inclusivity of their expertise on their child’s needs, recognition of their unique experiences as parents, and maintenance of connection with clinicians through bereavement.
AHRQ-funded; HS022986.
Citation: Bogetz JF, Revette A, DeCourcey DD .
Clinical care strategies that support parents of children with complex chronic conditions.
Pediatr Crit Care Med 2021 Jul;22(7):595-602. doi: 10.1097/pcc.0000000000002726..
Keywords: Children/Adolescents, Chronic Conditions, Palliative Care, Inpatient Care
Lee K, Gani F, Canner JK
Racial disparities in utilization of palliative care among patients admitted with advanced solid organ malignancies.
The primary objective of this study was to describe racial differences in the use of inpatient palliative care consultations (IPCC) for patients with advanced cancer who are admitted to a hospital in the United States. Hospital admissions of patients with advanced cancers were identified through the National Inpatient Dataset. Findings showed that death during hospitalization was a significant modifier of the relationship between race and receipt of palliative care consultation. There were significant racial disparities in the utilization of IPCC for patients with advanced cancer.
AHRQ-funded; HS024736.
Citation: Lee K, Gani F, Canner JK .
Racial disparities in utilization of palliative care among patients admitted with advanced solid organ malignancies.
Am J Hosp Palliat Care 2021 Jun;38(6):539-46. doi: 10.1177/1049909120922779..
Keywords: Healthcare Cost and Utilization Project (HCUP), Palliative Care, Cancer, Disparities, Racial and Ethnic Minorities, Healthcare Utilization, Inpatient Care, Chronic Conditions
Sedhom R, Nudotor R, Freund KM
Can community health workers increase palliative care use for African American patients? A pilot study.
African American patients with cancer underutilize advance care planning (ACP) and palliative care (PC). This feasibility study investigated whether community health workers (CHWs) could improve ACP and PC utilization for African American patients with advanced cancer. The investigators concluded that utilization of CHWs to address PC domains and social determinants of health was feasible. Although study enrollment was identified as a potential barrier, most recruited patients were retained on study.
AHRQ-funded; HS024736.
Citation: Sedhom R, Nudotor R, Freund KM .
Can community health workers increase palliative care use for African American patients? A pilot study.
JCO Oncol Pract 2021 Feb;17(2):e158-e67. doi: 10.1200/op.20.00574..
Keywords: Palliative Care, Community-Based Practice, Racial and Ethnic Minorities
Orth J, Li Y, Simning A
End-of-life care among nursing home residents with dementia varies by nursing home and market characteristics.
This study’s objectives were to examine variations in end-of-life (EOL) care/outcomes among decedents with Alzheimer's disease/related dementias (ADRD) and to identify associations with nursing home (NH)/market characteristics. Findings showed that decedents with ADRD in NHs that were nonprofit, had Alzheimer's units, higher licensed nurse staffing, and in more competitive markets, had better EOL care/outcomes. Recommendations included modifications to state Medicaid NH payments to promote better EOL care/outcomes and future research to understand NH care practices associated with presence of Alzheimer's units in order to identify mechanisms possibly promoting higher-quality EOL care.
AHRQ-funded; HS024923.
Citation: Orth J, Li Y, Simning A .
End-of-life care among nursing home residents with dementia varies by nursing home and market characteristics.
J Am Med Dir Assoc 2021 Feb;22(2):320-28.e4. doi: 10.1016/j.jamda.2020.06.021..
Keywords: Elderly, Palliative Care, Dementia, Nursing Homes, Long-Term Care
Kamal AH, Check DK, Bull J
Associations of patient characteristics and care setting with complexity of specialty palliative care visits.
Information routinely collected during a palliative care consultation request may help predict the level of complexity of that patient encounter. In this retrospective cohort analysis, the investigators examined whether patient and consultation characteristics, as captured in consultation requests, were associated with the number of unmet palliative care needs that emerge during consultation, as an indicator of complexity.
AHRQ-funded; HS023681.
Citation: Kamal AH, Check DK, Bull J .
Associations of patient characteristics and care setting with complexity of specialty palliative care visits.
J Palliat Med 2021 Jan;24(1):83-90. doi: 10.1089/jpm.2020.0149..
Keywords: Palliative Care
Quigley DD, McCleskey SG
Improving care experiences for patients and caregivers at end of life: a systematic review.
End-of-life care is increasing as the US population ages. Approaches to providing high-quality end-of-life care vary across setting, diseases, and populations. Several data collection tools measure patient and/or caregiver care experiences at end of life and can be used for quality improvement. Previous reviews examined palliative care improvements or available measures but none explicitly on improving care experiences. In this study, the researchers reviewed literature on improving patient and/or caregiver end-of-life care experiences.
AHRQ-funded; HS025920.
Citation: Quigley DD, McCleskey SG .
Improving care experiences for patients and caregivers at end of life: a systematic review.
Am J Hosp Palliat Care 2021 Jan;38(1):84-93. doi: 10.1177/1049909120931468..
Keywords: Palliative Care, Caregiving, Patient Experience, Quality Improvement, Quality of Care
Li Z, Frost HR, Tosteson TD
A semiparametric joint model for terminal trend of quality of life and survival in palliative care research.
A unique feature of palliative care clinical trials is that patients will experience decreasing quality of life (QOL) during the trial despite potentially beneficial treatment. Often longitudinal QOL and survival data are highly correlated which, in the face of censoring, makes it challenging to properly analyze and interpret terminal QOL trend. To address these issues, the authors of this study proposed a novel semiparametric statistical approach to jointly model the terminal trend of QOL and survival data.
AHRQ-funded; HS020263.
Citation: Li Z, Frost HR, Tosteson TD .
A semiparametric joint model for terminal trend of quality of life and survival in palliative care research.
Stat Med 2017 Dec 20;36(29):4692-704. doi: 10.1002/sim.7445..
Keywords: Palliative Care, Quality of Life
Khandelwal N, Curtis JR, Freedman VA
How often is end-of-life care in the United States inconsistent with patients' goals of care?
The purpose of this study was to document the proportion of bereaved respondents who reported care inconsistent with patients' wishes and characterize the predictors of end-of-life care associated with inconsistent care. The study found that one in eight respondents stated care in the last months of life was inconsistent with patients' wishes; such care was associated with worse ratings of care, pain management, and communication with clinicians.
AHRQ-funded; HS022982.
Citation: Khandelwal N, Curtis JR, Freedman VA .
How often is end-of-life care in the United States inconsistent with patients' goals of care?
J Palliat Med 2017 Dec;20(12):1400-04. doi: 10.1089/jpm.2017.0065..
Keywords: Care Management, Healthcare Delivery, Elderly, Palliative Care, Patient-Centered Healthcare, Quality of Care
Aslakson R, Dy SM, Wilson RF
Patient and caregiver-reported assessment tools for palliative care: summary of the 2017 AHRQ Technical Brief.
This paper summarizes palliative care assessment tools completed by or with patients or caregivers, and identifies needs for future tool development and evaluation. It concluded that few to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end of life care. While some data exists on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated.
AHRQ-funded; 290201500006I.
Citation: Aslakson R, Dy SM, Wilson RF .
Patient and caregiver-reported assessment tools for palliative care: summary of the 2017 AHRQ Technical Brief.
J Pain Symptom Manage 2017 Dec;54(6):961-72.e16. doi: 10.1016/j.jpainsymman.2017.04.022.
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Keywords: Caregiving, Evidence-Based Practice, Palliative Care, Patient Experience, Patient-Centered Outcomes Research
Kruser JM, Rakhra SS, Sacotte RM
Intensive care unit outcomes among patients with cancer after palliative radiation therapy.
To inform goals of care discussions at the time of palliative radiation therapy (RT) consultation, researchers sought to characterize intensive care unit (ICU) outcomes for patients treated with palliative RT compared to all other patients with metastatic cancer admitted to the ICU. They found that prior treatment with palliative RT is associated with increased in-hospital mortality after ICU admission.
AHRQ-funded; HS000078.
Citation: Kruser JM, Rakhra SS, Sacotte RM .
Intensive care unit outcomes among patients with cancer after palliative radiation therapy.
Int J Radiat Oncol Biol Phys 2017 Nov 15;99(4):854-58. doi: 10.1016/j.ijrobp.2017.06.2463.
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Keywords: Cancer, Intensive Care Unit (ICU), Palliative Care, Patient-Centered Outcomes Research
Kamal AH, Nicolla JM, Power S
Quality improvement pearls for the palliative care and hospice professional.
In this article, the authors provide a prioritized list of 10 tips specifically aimed to palliative care and hospice professionals, using their experience in both failures and successes in performing quality improvement. They aim to demystify quality improvement, highlight areas where rigor and a systematic approach are needed for success, and offer their own lessons learned and mistakes made to promote success for others.
AHRQ-funded; HS023681.
Citation: Kamal AH, Nicolla JM, Power S .
Quality improvement pearls for the palliative care and hospice professional.
J Pain Symptom Manage 2017 Nov;54(5):758-65. doi: 10.1016/j.jpainsymman.2017.07.040..
Keywords: Palliative Care, Quality of Care, Quality Improvement
Bull J, Kamal AH, Harker M
Standardization and scaling of a community-based palliative care model.
In 2014, Four Seasons Compassion for Life was awarded a Centers for Medicare and Medicaid Services Health Care Innovation (CMMI) Award to expand upon their existing model to implement, evaluate, and demonstrate Community-Based Palliative Care (CBPC) in the United States. The objective of this article is to describe the processes and challenges of scaling and standardizing the CBPC model.
AHRQ-funded; HS023681.
Citation: Bull J, Kamal AH, Harker M .
Standardization and scaling of a community-based palliative care model.
J Palliat Med 2017 Nov;20(11):1237-43. doi: 10.1089/jpm.2017.0027..
Keywords: Community-Based Practice, Palliative Care, Elderly
Bull J, Kamal AH, Harker M
Tracking patients in community-based palliative care through the centers for Medicare & Medicaid Services Healthcare Innovation Project.
In 2014, Four Seasons Compassion for Life was awarded a Centers for Medicare & Medicaid Services Healthcare Innovation Award to expand an existing Community-Based Palliative Care (CBPC) model into additional counties and to propose a new payment approach. The goal of this article is to evaluate the tracking of point of entry into palliative care and patient transition outcomes in the model.
AHRQ-funded; HS023681.
Citation: Bull J, Kamal AH, Harker M .
Tracking patients in community-based palliative care through the centers for Medicare & Medicaid Services Healthcare Innovation Project.
J Palliat Med 2017 Nov;20(11):1231-36. doi: 10.1089/jpm.2017.0080..
Keywords: Palliative Care, Community-Based Practice, Elderly, Transitions of Care
Kamal AH, Taylor DH, Neely B
One size does not fit all: disease profiles of serious illness patients receiving specialty palliative care.
This study was one of the first to describe symptom burden and functional scores by diagnostic categories and care settings across a community-based interdisciplinary specialty palliative care program. Results demonstrated statistically significant and clinically relevant differences among settings of care, functional status, and symptom profiles between patients with various serious illnesses.
AHRQ-funded; HS023681.
Citation: Kamal AH, Taylor DH, Neely B .
One size does not fit all: disease profiles of serious illness patients receiving specialty palliative care.
J Pain Symptom Manage 2017 Oct;54(4):476-83. doi: 10.1016/j.jpainsymman.2017.07.035..
Keywords: Quality of Care, Palliative Care, Quality Improvement
Wang SY, Dang W, Aldridge MD
Associations of hospice disenrollment and hospitalization with continuous home care provision.
The researchers examined rates of hospice disenrollment and posthospice hospitalization among patients who are enrolled in hospices that provide continuous home care (CHC) (CHC hospices) compared with patients who are enrolled in hospices that do not offer CHC (non-CHC hospices). They concluded that CHC hospices had significantly lower rates of hospice disenrollment and posthospice hospitalization, suggesting CHC service available may enable higher quality of end-of-life care.
AHRQ-funded; HS023900.
Citation: Wang SY, Dang W, Aldridge MD .
Associations of hospice disenrollment and hospitalization with continuous home care provision.
Med Care 2017 Sep;55(9):848-55. doi: 10.1097/mlr.0000000000000776.
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Keywords: Elderly, Home Healthcare, Hospitalization, Palliative Care
Jorgensen SM, Carnahan RM, Weckmann MT
Validity of the delirium observation screening scale in identifying delirium in home hospice patients.
The Delirium Observation Screening Scale (DOS) was developed to improve delirium recognition but has yet to be validated in the home hospice setting. This pilot study aimed to explore the accuracy of the DOS for identifying delirium in home hospice patients. It concluded that the DOS appears to be an accurate way to screen for delirium in home hospice patients.
AHRQ-funded; HS022666.
Citation: Jorgensen SM, Carnahan RM, Weckmann MT .
Validity of the delirium observation screening scale in identifying delirium in home hospice patients.
Am J Hosp Palliat Care 2017 Sep;34(8):744-47. doi: 10.1177/1049909116658468.
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Keywords: Diagnostic Safety and Quality, Elderly, Home Healthcare, Neurological Disorders, Palliative Care
Wang SY, Aldridge MD, Gross CP
End-of-life care transition patterns of Medicare beneficiaries.
The researchers characterized the patterns of transitions in care and factors associated with multiple transitions in the last 6 months of life of U.S. decedents (N = 660,132). They found that 218,731 had four or more transitions within the last 6 months of life. Women, blacks, individuals younger than 85, and individuals without dementia were more likely to have four or more transitions.
AHRQ-funded; HS023900.
Citation: Wang SY, Aldridge MD, Gross CP .
End-of-life care transition patterns of Medicare beneficiaries.
J Am Geriatr Soc 2017 Jul;65(7):1406-13. doi: 10.1111/jgs.14891.
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Keywords: Elderly, Medicare, Palliative Care, Transitions of Care
Moss DK
AHRQ Author: Moss DK
Getting it right at the end of life.
With the help of a palliative care team, the author's terminally ill mother dies on her own terms.
AHRQ-authored.
Citation: Moss DK .
Getting it right at the end of life.
Health Aff 2017 Jul;36(7):1336-39. doi: 10.1377/hlthaff.2016.1279.
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Keywords: Caregiving, Palliative Care
Schuler MS, Joyce NR, Huskamp HA
Medicare beneficiaries with advanced lung cancer experience diverse patterns of care from diagnosis to death.
Using Medicare claims data for patients diagnosed with extensive-stage small-cell lung cancer, the authors used latent class analysis to identify classes of people with different care patterns. The findings showed substantial heterogeneity in patterns of care for patients with advanced cancer, which should be accounted for in efforts to improve end-of-life care.
AHRQ-funded; HS022998.
Citation: Schuler MS, Joyce NR, Huskamp HA .
Medicare beneficiaries with advanced lung cancer experience diverse patterns of care from diagnosis to death.
Health Aff 2017 Jul;36(7):1193-200. doi: 10.1377/hlthaff.2017.0448..
Keywords: Cancer, Cancer: Lung Cancer, Care Management, Elderly, Medicare, Palliative Care
Harrison KL, Dzeng E, Ritchie CS
Addressing palliative care clinician burnout in organizations: a workforce necessity, an ethical imperative.
Clinician burnout reduces the capacity for providers and health systems to deliver timely, high quality, patient-centered care and increases the risk that clinicians will leave practice. Efforts to mitigate and prevent burnout currently focus on individual clinicians. However, analysis of the problem of burnout should be expanded to include both individual- and systems-level factors as well as solutions; comprehensive interventions must address both.
AHRQ-funded; HS023681.
Citation: Harrison KL, Dzeng E, Ritchie CS .
Addressing palliative care clinician burnout in organizations: a workforce necessity, an ethical imperative.
J Pain Symptom Manage 2017 Jun;53(6):1091-96. doi: 10.1016/j.jpainsymman.2017.01.007.
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Keywords: Burnout, Palliative Care, Patient-Centered Healthcare, Provider: Clinician, Provider: Physician, Provider