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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 3 of 3 Research Studies DisplayedKukulka 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
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
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