Articles: palliative-care.
-
Randomized Controlled Trial
Performance of Patient-Reported Outcome Measures in a Large Pragmatic Trial of Home-Based Palliative Care (HomePal): Methodological and Practical Considerations for Embedded Patient-Centered Design.
Background: The research enterprise has embraced patient centeredness in embedded efficient pragmatic trials, but limited data exist on using patient-reported outcomes (PROs) collected as part of usual clinical care for research. Objectives: We sought to assess the performance of different assessment methods for obtaining PROs in a pragmatic cluster randomized trial (HomePal study) designed to compare two models of home-based palliative care (HBPC). Design: Descriptive analytics, comparative trends, and psychometric performance of PROs collected in the HomePal study; measures included Edmonton Symptom Assessment System (ESAS), PROMIS-10, and others administered at baseline, 1, and 6 months. ⋯ These differences persisted with follow-up ESAS measures. Conclusions: We identified significant variability in PRO responses between different surveyors and whether proxy interaction was needed suggesting complex issues around PRO measure performance for pragmatic embedded trials. ClinicalTrials.gov Identifier: NCT03694431.
-
Palliative medicine · Apr 2022
Civic engagement in serious illness, death, and loss: A systematic mixed-methods review.
New public health approaches to palliative care such as compassionate communities aim to increase capacity in serious illness, death, and loss by involving civic society. Civic engagement has been described in many domains of health; a description of the characteristics, processes, and impact of the initiatives in palliative care is lacking. ⋯ This is the first review to systematically describe and compare reported civic engagement initiatives in the domain of palliative care. Future studies would benefit from improved evaluation of impact and sustainability.
-
Palliative medicine · Apr 2022
"I think that she would have wanted. . .": Qualitative interviews with bereaved caregivers reveal complexity in measuring goal-concordant care at the end of life.
Experts consider goal-concordant care an important healthcare outcome for individuals with serious illness. Despite their relationship to the patient and knowledge about the patient's wishes and values, little is known about bereaved family caregivers' perceptions of how end-of-life care aligns with patient goals and preferences. ⋯ Bereaved caregivers commonly rated care as goal-concordant while also identifying areas of disappointing and low-quality care. Communication, relationships and humanistic care, and care transitions are modifiable quality improvement targets for patients with advanced cancer.
-
J Pain Symptom Manage · Apr 2022
Identification of Uncontrolled Symptoms in Cancer Patients Using Natural Language Processing.
For patients with cancer, uncontrolled pain and other symptoms are the leading cause of unplanned hospitalizations. Early access to specialty palliative care (PC) is effective to reduce symptom burden, but more efficient approaches are needed for rapid identification and referral. Information on symptom burden largely exists in free-text notes, limiting its utility as a trigger for best practice alerts or automated referrals. ⋯ This study demonstrated initial feasibility of using NLP to identify hospitalized cancer patients with uncontrolled symptoms. Further model development is needed before these algorithms could be implemented to trigger early access to PC.