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Integrating Patient and Expert Perspectives to Conceptualize High-Quality Palliative Cancer Care for Symptoms in the US Veterans Health Administration: A Qualitative Study

Quality measurement is typically the domain of clinical experts and health system leaders; patient/caregiver perspectives are rarely solicited. We aimed to describe and integrate clinician and patient/caregiver conceptualizations of high-quality palliative symptom care for patients receiving care fo...

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Detalles Bibliográficos
Autores principales: O’Hanlon, Claire E., Giannitrapani, Karleen F., Gamboa, Raziel C., Walling, Anne M., Lindvall, Charlotta, Garrido, Melissa, Asch, Steven M., Lorenz, Karl A.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9998402/
https://www.ncbi.nlm.nih.gov/pubmed/36891952
http://dx.doi.org/10.1177/00469580231160374
Descripción
Sumario:Quality measurement is typically the domain of clinical experts and health system leaders; patient/caregiver perspectives are rarely solicited. We aimed to describe and integrate clinician and patient/caregiver conceptualizations of high-quality palliative symptom care for patients receiving care for advanced cancer within the US Veterans Health Administration in the context of existing quality measures. We conducted a secondary qualitative analysis of transcripts from prioritization discussions of process quality measures relevant to cancer palliative care. These discussions occurred during 2 modified RAND-UCLA appropriateness panels: a panel of 10 palliative care clinical expert stakeholders (7 physicians, 2 nurses, 1 social worker) and a panel of 9 patients/caregivers with cancer experience. Discussions were recorded, transcribed, and independently double-coded using an a priori logical framework. Content analysis was used to identify subthemes within codes and axial coding was used to identify crosscutting themes. Patients/caregivers and clinical experts contributed important perspectives to 3 crosscutting themes. First, proactive elicitation of symptoms is critical. Patients/caregivers especially emphasized importance of comprehensive and proactive screening and assessment, especially for pain and mental health. Second, screening and assessment alone is not enough; information elicited from patients must inform care. Measuring screening/assessment and management care processes separately has important limitations. Lastly, high-quality symptom management can be broadly defined if it is patient-centered; high-quality care takes an individualized approach and might include non-medical or non-pharmacological symptom management. Integrating the perspectives of clinical experts and patients/caregivers is critical for health systems to consider as they design and implement quality measures for palliative cancer care.