Lessons learned: Linking patient-reported outcomes data with administrative databases

Introduction Since 2007, Cancer Care Ontario (CCO) has systematically collected patient-reported outcomes (PROs) in the form of symptom data, for cancer outpatients visiting regional cancer centres or affiliate institutions. Data are used in real-time to facilitate conversation between clinicians and patients and have recently been combined with provincial administrative databases. Objectives and Approach CCO collects PROs using the Edmonton Symptom Assessment System (ESAS), which scores 9 symptoms on a scale of 0 (no symptoms) to 10 (worst symptom severity). Data were imported from CCO in 2015 and linked to a cancer cohort at ICES. We investigated differences between patients who completed $\geq$1 ESAS record and patients who did not, as well as the number of records, timing of data collection and missingness. We describe our experience linking and using the PRO data to administrative data, including presenting trajectories of symptoms over time and combining scores into composite indices. Results 120,745 cancer patients had 729,861 symptom records between 2007 and 2014. Not all patients with a cancer diagnosis had $\geq$1 ESAS record and this varied by patient, disease and system level factors. Because implementation occurred from a clinical perspective, data collection was irregular within and across patients and depended on treatment and other factors; the number of records per patient varied, as well the number of contributing patients in each time period following diagnosis. Attempts were made to create meaningful composite indices by combining all symptom scores as well as combining multiple high scores for each individual symptom. As a result, selecting the best statistical analysis to use these PRO data as an exposure or outcome is still uncertain. Conclusion/Implications PRO data linked to provincial, administrative data holdings represent a new frontier for population-based cancer research, both in their challenging structure as well as their implications for clinical practice and health system. These lessons learned will hopefully support other researchers rigorous use of these data in the future

Assessing research methodologies used to evaluate inequalities in end-of-life cancer care research: a scoping review protocol

Introduction To provide equitable cancer care at the end of life, it is essential to first understand the evidence underpinning the existence of unequal cancer outcomes. Study design, measurement and analytical decisions made by researchers are a function of their social systems, academic training, values and biases, which influence both the findings and interpretation of whether inequalities or inequities exist. Methodological choices can lead to results with different implications for research and policy priorities, including where supplementary programmes and services are offered and for whom. The objective of this scoping review is to provide an overview of the methods, including study design, measures and statistical approaches, used in quantitative and qualitative observational studies of health equity in end-of-life cancer care, and to consider how these methods align with recommended approaches for studying health equity questions.Methods and analysis This scoping review follows Arksey and O’Malley’s expanded framework for scoping reviews. We will systematically search Medline, Embase, CINAHL and PsycINFO electronic databases for quantitative and qualitative studies that examined equity stratifiers in relation to end-of-life cancer care and/or outcomes published in English or French between 2010 and 2021. Two authors will independently review all titles, abstracts and full texts to determine which studies meet the inclusion criteria. Data from included full-text articles will be extracted into a data form that will be developed and piloted by the research team. Extracted information will be summarised quantitatively and qualitatively.Ethics and dissemination No ethics approval is required for this scoping review. Results will be disseminated to researchers examining questions of health equity in cancer care through scientific publication and presentation at relevant conferences

State-level social vulnerability index and healthcare access: The behavioral risk factor surveillance system survey

Introduction: Access to health care is affected by social determinants of health. The social vulnerability index encompasses multiple social determinants of health simultaneously and may therefore be associated with healthcare access.Methods: Cross-sectional data were used from the 2016‒2019 Behavioral Risk Factor Surveillance System, a nationally representative U.S. telephone-based survey of adults aged ≥18 years. State-level social vulnerability index was derived using county-level social vulnerability index estimates from the Centers for Disease Control and Prevention Agency for Toxic Substances and Disease Registry. Analyses were performed in October 2021. Social vulnerability index was ranked according to percentiles, which were divided into tertiles: Tertile 1 (0.10-0.32), Tertile 2 (0.33-0.53), and Tertile 3 (0.54-0.90).Results: In multivariable-adjusted models comparing U.S. states in Tertile 3 with those in Tertile 1 of social vulnerability index, there was a higher prevalence of absence of healthcare coverage (OR=1.39 [95% CI=1.22, 1.58]), absence of primary care provider (OR=1.34 [95% CI=1.22, 1.48]), \u3e1-year duration since last routine checkup (OR=1.18 [95% CI=1.10, 1.27]), inability to see a doctor because of cost (OR=1.38 [95% CI=1.23, 1.54]), and the composite variable of any difficulty in accessing healthcare (OR=1.15 [95% CI=1.08, 1.22]).Conclusions: State-level social vulnerability is associated with several measures related to healthcare access. These results can help to identify targeted interventions to improve access to health care in U.S. states with high social vulnerability index burden