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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 2 of 2 Research Studies Displayed
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
Kamal AH, Kirkland KB, Meier DE
A person-centered, registry-based learning health system for palliative care: a path to coproducing better outcomes, experience, value, and science.
In this paper, the authors discuss measurement of the impact of palliative care, which is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness. The authors described an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research.
Citation: Kamal AH, Kirkland KB, Meier DE . A person-centered, registry-based learning health system for palliative care: a path to coproducing better outcomes, experience, value, and science. J Palliat Med 2018 Mar;21(S2):S61-s67. doi: 10.1089/jpm.2017.0354..
Keywords: Palliative Care, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Outcomes, Learning Health Systems, Registries, Patient and Family Engagement