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

• Published in: Inquiry (Chicago) 2023-01, Vol.60, p.469580231160374-469580231160374
• Main Authors: O’Hanlon, Claire E., Giannitrapani, Karleen F., Gamboa, Raziel C., Walling, Anne M., Lindvall, Charlotta, Garrido, Melissa, Asch, Steven M., Lorenz, Karl A.
• Format: Article
• Language: English
• Subjects: Cancer; Caregivers; Caregivers - psychology; Content analysis; Evaluation; Experts; Health care access; Health services; Humans; Management; Measures; Medical screening; Mental health; Mental health services; Neoplasms - therapy; Nominations; Nurses; Oncology; Original Research; Pain; Palliative Care; Patients; Qualitative Research; Quality improvement; Quality of care; Quality of Health Care; Ratings & rankings; Social workers; Stakeholders; Symptom management; Tests; Verbal communication; Veterans; Veterans Health
• ISSN: 0046-9580; 1945-7243
• DOI: 10.1177/00469580231160374

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.