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. 2023 Jan-Dec:60:469580231160374.
doi: 10.1177/00469580231160374.

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

Claire E O'Hanlon  1   2 , Karleen F Giannitrapani  3   4 , Raziel C Gamboa  3   4 , Anne M Walling  2   5 , Charlotta Lindvall  6   7 , Melissa Garrido  8   9 , Steven M Asch  3   4 , Karl A Lorenz  3   4
Affiliations

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

Claire E O'Hanlon et al. Inquiry. 2023 Jan-Dec.

Abstract

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.

Keywords: advanced cancer; cancer; palliative care; qualitative research; quality improvement; quality measurement.

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Conflict of interest statement

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Logical process of the symptom care trajectory.
See this image and copyright information in PMC

References

    1. VA Office of Patient Centered Care and Cultural Transformation. Veteran Advisors and Advisory Councils.
    1. Carman KL, Dardess P, Maurer M, et al.. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff. 2013;32(2):223-231. - PubMed
    1. Ponte PR, Conlin G, Conway JB, et al.. Making patient-centered care come alive: achieving full integration of the patient’s perspective. J Nurs Admin. 2003;33(2):82-90. - PubMed
    1. Groene O, Sunol R, Klazinga NS, et al.. Involvement of patients or their representatives in quality management functions in EU hospitals: implementation and impact on patient-centred care strategies. Int J Qual Health Care. 2014;26 Suppl 1(Suppl 1):81-91. - PMC - PubMed
    1. Boivin A, Lehoux P, Lacombe R, Burgers J, Grol R. Involving patients in setting priorities for healthcare improvement: a cluster randomized trial. Implement Sci. 2014;9(1):24. - PMC - PubMed

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