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Research Studies is a monthly compilation of research articles funded by AHRQ or authored by AHRQ researchers and recently published in journals or newsletters.
Results1 to 16 of 16 Research Studies Displayed
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.
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.
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 / Ethnic Minorities
Gray NA, Kamal AH, Hanson LC
Clinician perspectives guiding approach to comprehensiveness of palliative care assessment.
This paper discusses the results of a two-part web-based survey of palliative care clinicians from five academic groups in the United States. The objective was to describe clinicians’ assessment practices and factors influencing their approach to quality palliative care in contrast to the National Consensus Project guidelines for palliative care. Nineteen out of 25 invited clinicians completed the survey, including physicians, nurse practitioners, and physician assistants. The majority (62%) reported that their usual practice was to tailor the focus of the consultation, mainly due to time limitations and workload, followed by beliefs that comprehensive assessment was unnecessary, and absence of the full interdisciplinary team. Most participants cited reason for consult as factors influencing a tailored approach. Physical symptoms were the most commonly assessed factor (81%), with spiritual and cultural factors least commonly (24% and 19%, respectively) listed. Although most clinicians reported usually tailoring their consultations, mean importance scores for almost all assessment elements were high (mean of 7.1 on a 0-9 importance scale).
Citation: Gray NA, Kamal AH, Hanson LC . Clinician perspectives guiding approach to comprehensiveness of palliative care assessment. J Palliat Med 2022 Feb;25(2):307-11. doi: 10.1089/jpm.2021.0391..
Keywords: Palliative Care, Provider: Nurse
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 / 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.
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.
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, Safety Net, 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.
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).
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