Stakeholder Perceptions of Key Aspects of High-Quality Cancer Care to Assess with Patient Reported Outcome Measures: A Systematic Review

SIMPLE SUMMARY: We conducted a review to identify important symptoms reported by patients on questionnaires (e.g., pain) that can be used to compare cancer centers on how well they provide care. For example, cancer centers could be compared on the percentage of patients with controlled pain after adjusting for demographic and clinical characteristics. Standard review methods were used to identify studies through August 2020. Searches generated 1813 articles and 1779 were coded as not relevant. The remaining 34 studies showed that patients, caregivers, clinicians, and healthcare administrators identify psychosocial care (e.g., distress) and symptom management as critical parts of high-quality care. Patients and caregivers also perceive that maintaining physical function and daily activities are important. Clinicians and healthcare administrators perceive control of specific symptoms to be important (e.g., pain, poor sleep, diarrhea). Results were used to inform testing of symptom questionnaires to compare the quality of care provided by six cancer centers. ABSTRACT: Performance measurement is the process of collecting, analyzing, and reporting standardized measures of clinical performance that can be compared across practices to evaluate how well care was provided. We conducted a systematic review to identify stakeholder perceptions of key symptoms and health domains to test as patient-reported performance measures in oncology. Stakeholders included cancer patients, caregivers, clinicians, and healthcare administrators. Standard review methodology was used, consistent with PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses). MEDLINE/PubMed, EMBASE, and the Cochrane Library were searched to identify relevant studies through August 2020. Four coders independently reviewed entries and conflicts were resolved by a fifth coder. Efficacy and effectiveness studies, and studies focused exclusively on patient experiences of care (e.g., communication skills of providers) were excluded. Searches generated 1813 articles and 1779 were coded as not relevant, leaving 34 international articles for extraction. Patients, caregivers, clinicians, and healthcare administrators prioritize psychosocial care (e.g., distress) and symptom management for patient-reported performance measures. Patients and caregivers also perceive that maintaining physical function and daily activities are critical. Clinicians and administrators perceive control of specific symptoms to be critical (gastrointestinal symptoms, pain, poor sleep). Results were used to inform testing at six US cancer centers.