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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 15 of 15 Research Studies DisplayedKaufman BG, Holland DE, Vanderboom CE
Implementation costs of technology-enhanced transitional palliative care for rural caregivers.
Rural FCG experience higher levels of burden accessing coordinated care for their loved ones during and after hospitalization than urban family caregivers (FCG). The role of technology-enhanced transitional palliative care (TPC) on caregiver outcomes is currently being assessed in a randomized control trial. The purpose of this study was to assess resource use and health system costs of this FCG-focused TPC intervention and potential Medicare reimbursement mechanisms. The researchers randomized rural caregivers of hospitalized patients into an 8-week intervention which included video visits conducted by a registered nurse certified in palliative care, and supplemented with phone calls and texts (n = 215), or attentional control. The researchers estimated labor costs for a registered nurse and compared to scenario analyses utilizing a nurse practitioner or social worker wages. Medicare reimbursement scenarios included Transitional Care Management (TCM) and Chronic Care Management (CCM) CPT codes. The researchers found the base case, TPC cost was $395 per FCG conducted by a registered nurse, compared to $337 and $585 if conducted by a social worker or nurse practitioner, respectively. Reimbursement in the CCM-only scenario was $348 and $274 for complex and non-complex patients, respectively. Average Medicare reimbursement in the TCM-only scenario was $322 and $260 for high or moderate complexity patients, respectively. Reimbursement in the TCM+CCM scenario was $496 and $397, for high/complex and moderate/non-complex patients, respectively.
AHRQ-funded; HS026379.
Citation: Kaufman BG, Holland DE, Vanderboom CE .
Implementation costs of technology-enhanced transitional palliative care for rural caregivers.
Am J Hosp Palliat Care 2024 Jan; 41(1):38-44. doi: 10.1177/10499091231156145..
Keywords: Rural Health, Caregiving, Palliative Care, Health Information Technology (HIT)
Dionne-Odom JN, Wells RD, Guastaferro K
An early palliative care telehealth coaching intervention to enhance advanced cancer family caregivers' decision support skills: the CASCADE pilot factorial trial.
The purpose of this study was to evaluate the feasibility, acceptability, and efficacy of the modules of a telehealth palliative care decision support training program (CASCADE training- CAre Supporters Coached to be Adept DEcision Partners) for caregivers of cancer patients. The researchers conducted a pilot trial between October 2019 and October 2020 in which 46 dyads of newly diagnosed cancer patients and their caregivers were randomized and assigned to one of eight experimental conditions. Each experimental condition included a combination of one of three CASCADE modules. Measures of decision support and caregiver and patient distress, training feasibility, and training acceptability were collected. The study found that the individual CASCADE modules were reported to have a possible benefit for decision support and caregiver distress, and that the average caregiver rating for recommending the program was 9.9 on a scale of 1(Not at all likely) to 10 (Extremely likely). The study concluded that the pilot trial was a success and justify and warrant a full-scale trial.
AHRQ-funded; HS013852.
Citation: Dionne-Odom JN, Wells RD, Guastaferro K .
An early palliative care telehealth coaching intervention to enhance advanced cancer family caregivers' decision support skills: the CASCADE pilot factorial trial.
J Pain Symptom Manage 2022 Jan;63(1):11-22. doi: 10.1016/j.jpainsymman.2021.07.023..
Keywords: Palliative Care, Cancer, Telehealth, Health Information Technology (HIT), Caregiving
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
Bogetz JF, Revette A, Rosenberg AR
"I could never prepare for something like the death of my own child": parental perspectives on preparedness at end of life for children with complex chronic conditions.
This study’s goal was to elucidate aspects important to preparedness at end of life (EOL) among bereaved parents of children with complex chronic conditions (CCCs). Participants answered 21 open-response queries on communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Findings showed that most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond "readiness." Recommendations included more research to identify supportive elements among parents facing their child's EOL.
AHRQ-funded; HS022986.
Citation: Bogetz JF, Revette A, Rosenberg AR .
"I could never prepare for something like the death of my own child": parental perspectives on preparedness at end of life for children with complex chronic conditions.
J Pain Symptom Manage 2020 Dec;60(6):1154-62.e1. doi: 10.1016/j.jpainsymman.2020.06.035..
Keywords: Children/Adolescents, Caregiving, Mortality, Chronic Conditions, Palliative Care
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
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
Kim K, Heinze K, Xu J
Theories of health care decision making at the end of life: a meta-ethnography.
The aim of this meta-ethnography was to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decisionmaking among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS), and their caregivers or providers. A conceptual framework was developed using themes including context of decision making, communication and negotiation of decisionmaking, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes.
AHRQ-funded; HS022140.
Citation: Kim K, Heinze K, Xu J .
Theories of health care decision making at the end of life: a meta-ethnography.
West J Nurs Res 2018 Dec;40(12):1861-84. doi: 10.1177/0193945917723010..
Keywords: Caregiving, Communication, Decision Making, Palliative 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
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
Kavalieratos D, Corbelli J, Zhang D
Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis.
This review sought to determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers. It concluded that the association between palliative care and QOL was attenuated but remained statistically significant whereas the association with symptom burden was not statistically significant . There was no association between palliative care and survival.
AHRQ-funded; HS022989.
Citation: Kavalieratos D, Corbelli J, Zhang D .
Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis.
JAMA 2016 Nov 22;316(20):2104-14. doi: 10.1001/jama.2016.16840.
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Keywords: Caregiving, Palliative Care, Quality of Life, Patient-Centered Outcomes Research
Kamal AH, Dionne-Odom JN
A Blue Ocean strategy for palliative care: focus on family caregivers.
The authors argue that there is an undeniable societal need (or high consumer value) for some entity to ensure that family caregivers stay healthy not only so they can provide the best care possible to patients, but also for their own sake. They believe palliative care should rise to meet this societal need and take on family caregivers as a new focus of its specialized care.
AHRQ-funded; HS023681.
Citation: Kamal AH, Dionne-Odom JN .
A Blue Ocean strategy for palliative care: focus on family caregivers.
J Pain Symptom Manage 2016 Mar;51(3):e1-3. doi: 10.1016/j.jpainsymman.2015.12.305.
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Keywords: Palliative Care, Caregiving, Quality of Life, Healthcare Delivery
Smith B, McDuff J, Naierman N
What consumers want to know about quality when choosing a hospice provider.
This study drew on focus group and survey data collected in 5 metropolitan areas to learn more about hospice quality data. The researchers found that participants placed top priority on measures related to pain and symptom management. The National Quality Forum-approved measures resonate well with consumers, who also appear to be ready for access to data on the quality of hospice providers.
AHRQ-funded; HS021870.
Citation: Smith B, McDuff J, Naierman N .
What consumers want to know about quality when choosing a hospice provider.
Am J Hosp Palliat Care 2015 Jun;32(4):393-400. doi: 10.1177/1049909114524475.
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Keywords: Caregiving, Education: Patient and Caregiver, Decision Making, Palliative Care, Provider Performance, Public Reporting, Quality of Care, Quality Indicators (QIs)
Cagle JG, Zimmerman S, Cohen LW
EMPOWER: an intervention to address barriers to pain management in hospice.
The researchers tested the preliminary efficacy of the Effective Management of Pain: Overcoming Worries to Enable Relief (EMPOWER) intervention. At two weeks, caregivers in the intervention group reported better knowledge about pain management, fewer concerns about pain and pain medications, lower patient pain over the past week, and trended toward improvement in most other areas under study. EMPOWER had a greater effect for black subjects vs. whites on reducing concern about stigma. At three months, the intervention group trended better on most study outcomes. The researchers concluded that EMPOWER is a promising model to reduce barriers to pain management in hospice.
AHRQ-funded; HS019068.
Citation: Cagle JG, Zimmerman S, Cohen LW .
EMPOWER: an intervention to address barriers to pain management in hospice.
J Pain Symptom Manage 2015 Jan;49(1):1-12. doi: 10.1016/j.jpainsymman.2014.05.007.
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Keywords: Care Management, Caregiving, Comparative Effectiveness, Education: Patient and Caregiver, Medication, Pain, Palliative Care
Rocke DJ, Beumer HW, Taylor DH, Jr.
Physician and patient and caregiver health attitudes and their effect on Medicare resource allocation for patients with advanced cancer.
The investigators sought to determine how baseline attitudes toward quality vs quantity of life affect end-of-life resource allocation. They found that, compared with patients and caregivers, otolaryngology-head and neck surgery (OHNS) physician allocations differed significantly in all 15 benefit categories except home care. They concluded that understanding the effect of baseline attitudes is important for effective end-of-life discussions.
AHRQ-funded; HS018360.
Citation: Rocke DJ, Beumer HW, Taylor DH, Jr. .
Physician and patient and caregiver health attitudes and their effect on Medicare resource allocation for patients with advanced cancer.
JAMA Otolaryngol Head Neck Surg 2014 Jun;140(6):497-503. doi: 10.1001/jamaoto.2014.494.
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Keywords: Cancer, Caregiving, Medicare, Palliative Care, Provider: Physician, Quality of Life