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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 39 Research Studies DisplayedRhodes RL, Ukoha NCE, Williams KA
Understanding underuse of advance care planning among a cohort of African American patients with advanced cancer: formative research that examines gaps in intent to discuss options for care.
Advance care planning (ACP), palliative care (PC), and hospice are often underutilized by African Americans. This study assessed the impact of stage of intent to discuss ACP options as key potential barriers. The investigators concluded that despite being hospitalized with advanced cancer and having poor prognosis, intent to discuss ACP options, PC, and hospice in this population was variable, and completion of these activities was low.
AHRQ-funded; HS022418.
Citation: Rhodes RL, Ukoha NCE, Williams KA .
Understanding underuse of advance care planning among a cohort of African American patients with advanced cancer: formative research that examines gaps in intent to discuss options for care.
Am J Hosp Palliat Care 2019 Dec;36(12):1057-62. doi: 10.1177/1049909119843276..
Keywords: Cancer, Palliative Care, Patient-Centered Healthcare, Racial and Ethnic Minorities
Makam AN, Tran T, Miller ME
The clinical course after long-term acute care hospital admission among older Medicare beneficiaries.
Investigators sought to examine the clinical course after long-term acute care (LTAC) admission. They found that hospitalized older adults transferred to LTAC hospitals had poor survival, spent most of their remaining life as an inpatient, and frequently underwent life-prolonging procedures. This prognostic understanding is essential to inform goals of care discussions and to prioritize healthcare needs for these adults. Given the exceedingly low rates of palliative care consultations, they recommend future research to examine unmet palliative care needs in this population.
AHRQ-funded; HS022418.
Citation: Makam AN, Tran T, Miller ME .
The clinical course after long-term acute care hospital admission among older Medicare beneficiaries.
J Am Geriatr Soc 2019 Nov;67(11):2282-88. doi: 10.1111/jgs.16106..
Keywords: Elderly, Medicare, Palliative Care, Patient-Centered Outcomes Research, Outcomes, Care Management, Healthcare Delivery
Kukulka K, Washington KT, Govindarajan R
Stakeholder perspectives on the biopsychosocial and spiritual realities of living with ALS: implications for palliative care teams.
The purpose of this study was to generate a rich description of the realities of living with amyotrophic lateral sclerosis (ALS), equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Study findings illustrated the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The investigators concluded that the complex biopsychosocial needs experienced by patients and family caregivers suggested numerous opportunities for meaningful palliative care involvement.
AHRQ-funded; HS022140.
Citation: Kukulka K, Washington KT, Govindarajan R .
Stakeholder perspectives on the biopsychosocial and spiritual realities of living with ALS: implications for palliative care teams.
Am J Hosp Palliat Care 2019 Oct;36(10):851-57. doi: 10.1177/1049909119834493..
Keywords: Palliative Care, Patient-Centered Outcomes Research, Neurological Disorders, Patient-Centered Healthcare, Patient and Family Engagement, Caregiving
Iyer AS, Dionne-Odom JN, Ford SM
A formative evaluation of patient and family caregiver perspectives on early palliative care in chronic obstructive pulmonary disease across disease severity.
Investigators sought to identify patient and family caregiver early palliative care needs across stages of chronic obstructive pulmonary disease (COPD) severity. They conducted their study as part of the Medical Research Council Framework developmental phase for intervention development. Their results showed that patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.
AHRQ-funded; HS023009.
Citation: Iyer AS, Dionne-Odom JN, Ford SM .
A formative evaluation of patient and family caregiver perspectives on early palliative care in chronic obstructive pulmonary disease across disease severity.
Ann Am Thorac Soc 2019 Aug;16(8):1024-33. doi: 10.1513/AnnalsATS.201902-112OC..
Keywords: Caregiving, Palliative Care, Respiratory Conditions
Kamal AH, Wolf SP, Troy J
Policy changes key to promoting sustainability and growth of the specialty palliative care workforce.
The authors used 2018 clinician survey data to model risk factors associated with palliative care clinicians leaving the field early. Their modeling revealed an impending "workforce valley." They recommended policies that support high-value, team-based palliative care through expansion in all segments of the specialty palliative care workforce, combined with payment reform to encourage the deployment of sustainable teams.
AHRQ-funded; HS023681.
Citation: Kamal AH, Wolf SP, Troy J .
Policy changes key to promoting sustainability and growth of the specialty palliative care workforce.
Health Aff 2019 Jun;38(6):910-18. doi: 10.1377/hlthaff.2019.00018..
Keywords: Palliative Care, Policy, Provider, Teams, Workforce
Armstrong MJ, Alliance S, Taylor A
End-of-life experiences in dementia with Lewy bodies: qualitative interviews with former caregivers.
This study examined the knowledge of former caregivers of patients with dementia with Lewy bodies (DLB) and the patients’ end of life (EOL) experiences. Telephone interviews were conducted with a total of 30 caregivers and family members of individuals who died with DLB in the last 5 years. The interviews revealed a lack of knowledge regarding what to expect, EOL time course, advance care planning, medications at the end of life, approaching end of life, and the death experience itself.
AHRQ-funded; HS024159.
Citation: Armstrong MJ, Alliance S, Taylor A .
End-of-life experiences in dementia with Lewy bodies: qualitative interviews with former caregivers.
PLoS One 2019 May 30;14(5):e0217039. doi: 10.1371/journal.pone.0217039..
Keywords: Palliative Care, Dementia, Neurological Disorders, Caregiving
Hadler RA, Goldstein NE, Bekelman DB
"Why would i choose death?": a qualitative study of patient understanding of the role and limitations of cardiac devices.
The aim of this study was to assess perceptions of cardiac devices in patients with heart failure and how these perceptions impacted advance care planning and future expectations. The investigators found that patients, in their sample, with cardiac devices overestimated the impact of their devices on preventing disease progression and death and deprioritized advance care planning as a result.
AHRQ-funded; HS022989.
Citation: Hadler RA, Goldstein NE, Bekelman DB .
"Why would i choose death?": a qualitative study of patient understanding of the role and limitations of cardiac devices.
J Cardiovasc Nurs 2019 May/Jun;34(3):275-82. doi: 10.1097/jcn.0000000000000565..
Keywords: Cardiovascular Conditions, Heart Disease and Health, Mortality, Palliative Care
Kamal AH, Bowman B, Ritchie CS
Identifying palliative care champions to promote high-quality care to those with serious illness.
This article discusses the shortage of palliative care specialists in the United States now and in the future. In 2010, the shortage quantified as anywhere from 6000 to 18,000 palliative care physicians. Projections to 2030 do not show that the workforce will increase by that time. The authors suggest the use of “Palliative Care Champions” who are physicians with basic palliative care training.
AHRQ-funded; HS023681.
Citation: Kamal AH, Bowman B, Ritchie CS .
Identifying palliative care champions to promote high-quality care to those with serious illness.
J Am Geriatr Soc 2019 May;67(S2):S461-s67. doi: 10.1111/jgs.15799..
Keywords: Palliative Care, Quality of Care, Provider: Clinician, Provider: Physician
Ray EM, Riedel RF, LeBlanc TW
Assessing the impact of a novel integrated palliative care and medical oncology inpatient service on health care utilization before hospice enrollment.
The goal of this retrospective cohort study was to assess the impact of integrating specialist palliative care (PC) on health care utilization among hospitalized cancer patients before hospice enrollment. Patients in the solid tumor inpatient unit who were discharged to hospice pre- and post-integration were compared on the following outcomes: intensive care unit days, invasive procedures, subspecialty consultations, radiographic studies, hospital length of stay, and use of chemotherapy or radiation. Health care utilization was relatively low in both groups, and researchers found no significant differences in utilization between the two groups. They conclude that PC integration may not impact health care utilization during the final hospitalization before discharge to hospice, which may reflect the greater benefits of integrating PC farther ‘upstream’ from the final hospitalization.
AHRQ-funded; HS000032.
Citation: Ray EM, Riedel RF, LeBlanc TW .
Assessing the impact of a novel integrated palliative care and medical oncology inpatient service on health care utilization before hospice enrollment.
J Palliat Med 2019 Apr;22(4):420-23. doi: 10.1089/jpm.2018.0235..
Keywords: Cancer, Healthcare Utilization, Inpatient Care, Palliative Care
Johnston FM, Neiman JH, Parmley LE
Stakeholder perspectives on the use of community health workers to improve palliative care use by African Americans with cancer.
This study focused on the issue of lack of palliative care for African-Americans with cancer. Stakeholder interviews and focus groups were conducted with cancer patients, caregivers, health care administrators, oncologists, and community health workers (CHWs). Participants felt that CHWs could play a central role in bridging patients with their providers, information and resources. They also felt that CHWs should either come from the community, or be familiar with the history, culture, and norms of the communities from which they operate.
AHRQ-funded; HS024736.
Citation: Johnston FM, Neiman JH, Parmley LE .
Stakeholder perspectives on the use of community health workers to improve palliative care use by African Americans with cancer.
J Palliat Med 2019 Mar;22(3):302-06. doi: 10.1089/jpm.2018.0366..
Keywords: Access to Care, Cancer, Healthcare Delivery, Healthcare Utilization, Cultural Competence, Disparities, Palliative Care, Racial and Ethnic Minorities
Armstrong MJ, Alliance S, Corsentino P
Cause of death and end-of-life experiences in individuals with dementia with Lewy bodies.
Researchers investigate the natural history, cause of death, and end-of-life experiences of individuals diagnosed with dementia with Lewy bodies (DLB). In the 20-question survey, respondents indicated that physicians rarely discussed what to expect at the end of life and that the caregiver usually initiated such conversations. Failure to thrive was the most common cause of death, followed by pneumonia and swallowing difficulties, other medical conditions, and complications from falling. The researchers conclude that the study results highlight a critical need for better prognostic counseling and education for persons and families living with DLB, and they recommended further study.
AHRQ-funded; HS024159.
Citation: Armstrong MJ, Alliance S, Corsentino P .
Cause of death and end-of-life experiences in individuals with dementia with Lewy bodies.
J Am Geriatr Soc 2019 Jan;67(1):67-73. doi: 10.1111/jgs.15608..
Keywords: Dementia, Neurological Disorders, Patient Experience, Palliative Care, Mortality, Elderly
Deutsch GB, Deneve JL, Al-Kasspooles MF
Intellectual equipoise and challenges: accruing patients with advanced cancer to a trial randomizing to surgical or nonsurgical management (SWOG S1316).
Prospective, randomized trials are needed to determine optimal treatment approaches for palliative care problems such as malignant bowel obstruction (MBO). In this paper, the authors report their experience accruing randomized patients to the Prospective Comparative Effectiveness Trial for Malignant Bowel Obstruction (SWOG S1316) study, comparing surgical and nonsurgical management of MBO. Accrual is ongoing. Experience gained from the S1316 study can aid future palliative care trials. They note that it is possible to randomize patients to palliative studies by giving clinicians clear recommendations utilizing an algorithm of conversation, allotment of necessary time to discuss the trial, and encouragement to overcome internal bias.
AHRQ-funded; HS021491.
Citation: Deutsch GB, Deneve JL, Al-Kasspooles MF .
Intellectual equipoise and challenges: accruing patients with advanced cancer to a trial randomizing to surgical or nonsurgical management (SWOG S1316).
Am J Hosp Palliat Care 2020 Jan;37(1):12-18. doi: 10.1177/1049909119851471..
Keywords: Cancer, Surgery, Comparative Effectiveness, Palliative Care
Knox-Rice T, Xuan L, Wadsworth H
Knox-Rice T, Xuan L, Wadsworth H, Halm EA, Rhodes RL. Examining the association between healthcare utilization and clinical characteristics among cancer patients in a safety net health system.
The goal of this study was to examine the association between available patient and clinical characteristics and healthcare utilization in a cohort of breast, lung, and colorectal cancer patients within a safety-net hospital system. The investigators found that some patient and clinical characteristics associated with increased ER visits and hospitalizations in this cohort included race/ethnicity, palliative care referral, markers of advanced disease, and number opioids prescribed.
AHRQ-funded; R24 HS022418.
Citation: Knox-Rice T, Xuan L, Wadsworth H .
Knox-Rice T, Xuan L, Wadsworth H, Halm EA, Rhodes RL. Examining the association between healthcare utilization and clinical characteristics among cancer patients in a safety net health system.
J Palliat Med 2019 Jan;22(1):80-83. doi: 10.1089/jpm.2018.0202..
Keywords: Cancer, Healthcare Utilization, Palliative Care, Hospitals
Wang D, Ing C, Blinderman CD
Latent class analysis of specialized palliative care needs in adult intensive care units from a single academic medical center.
The purpose of this study was to use latent class analysis to separate ICU patients into different classes of palliative care needs, and to determine if these classes differ in their resource requirements. Using information from ICU patients who received specialized palliative care, researchers extracted reason(s) for consultation from the initial note and entered it into a latent class analysis model to generate mutually exclusive patient classes. Four classes were identified: Pain and Symptom Management, Goals of Care and Advance Directives (GCAD), All Needsand Supportive Care. GCAD patients were least likely to be high utilizers.
AHRQ-funded; HS022941.
Citation: Wang D, Ing C, Blinderman CD .
Latent class analysis of specialized palliative care needs in adult intensive care units from a single academic medical center.
J Pain Symptom Manage 2019 Jan;57(1):73-78. doi: 10.1016/j.jpainsymman.2018.10.270..
Keywords: Care Management, Inpatient Care, Intensive Care Unit (ICU), Palliative Care
Anderson JB, Brown DW, Lihn S
Power of a learning network in congenital heart disease.
This paper discusses the efforts of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC). The collaborative formed to improve outcomes in infants with hypoplastic left heart syndrome. It sought to (1) decrease mortality, (2) reduce growth failure, and (3) reduce hospital readmissions due to major medical problems during the interstage period between discharge following stage 1 palliation (S1P) and admission for stage 2 palliation (S2P).
AHRQ-funded; HS016957.
Citation: Anderson JB, Brown DW, Lihn S .
Power of a learning network in congenital heart disease.
World J Pediatr Congenit Heart Surg 2019 Jan;10(1):66-71. doi: 10.1177/2150135118815023..
Keywords: Cardiovascular Conditions, Children/Adolescents, Education: Continuing Medical Education, Palliative Care, Quality Improvement, Registries
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