Identification of Major Cognitive Disorders in Self-Reported versus Administrative Health Data: A Cohort Study in Quebec

Article type: Research Article

Authors: Dufour, Isabelle^{a; *} | Vedel, Isabelle^b | Quesnel-Vallée, Amélie^{a; c} | on behalf of the TORSADE Cohort Working Group¹

Affiliations: [a] Department of Epidemiology, Biostatistics, and Occupational Health, Faculty of Medicine, McGill University, Montreal, Canada | [b] Department of Family Medicine, Faculty of Medicine and Health Sciences, Faculty of Medicine, McGill University, Montréal, Canada | [c] Department of Sociology, Faculty of Arts, McGill University, Montreal, Canada

Correspondence: [*] Correspondence to: Isabelle Dufour, RN, PhD, Department of Epidemiology, Biostatistics, and Occupational Health, Faculty of Medicine, McGill University, 1020 Pine Ave, Montreal, Quebec H3A 1A2, Canada. Tel.: +1 418 815 4595; E-mail: [email protected].

Note: [1] Past and current members of the TORSADE Cohort Working Group are as follows: Alain Vanasse (outgoing director), Alexandre Lebel, Amélie Quesnel-Vallée, Anaïs Lacasse (incoming director), André Néron, Anne-Marie Cloutier, Annie Giguère, Benoit Lamarche, Bilkis Vissandjee, Catherine Hudon, Danielle St-Laurent, David Buckeridge, Denis Roy, Geneviève Landry, Gillian Bartlett, Guillaume Blanchet, Hermine Lore Nguena Nguefack, Isabelle Leroux, Jaime Borja, Jean-François Ethier, Josiane Courteau, Lucie Blais, Manon Choinière, Marc Dorais, Marc-André Blanchette, Marc-Antoine Côté-Marcil, Marie-Josée Fleury, Marie-Pascale Pomey, Mike Benigeri, Mireille Courteau, Nadia Sourial, Pasquale Roberge, Pier Tremblay, Pierre Cambon, Roxanne Dault, Sonia Jean, Sonia Quirion, Stéphanie Plante, Thomas Poder, Valérie Émond.

Abstract: Background:The first imperative in producing the relevant and needed knowledge about major neurocognitive disorder (MNCD) is to identify people presenting with the condition adequately. To document potential disparities between administrative health databases and population-based surveys could help identify specific challenges in this population and methodological shortfalls. Objective:To describe and compare the characteristics of community-dwelling older adults according to four groups: 1) No MNCD; 2) Self-reported MNCD only; 3) MNCD in administrative health data only; 4) MNCD in both self-reported and administrative health data. Methods:This retrospective cohort study used the Care Trajectories-Enriched Data (TorSaDE) cohort, a linkage between five waves of the Canadian Community Health Survey (CCHS) and health administrative health data. We included older adults living in the community who participated in at least one cycle of the CCHS. We reported on positive and negative MNCD in self-reported versus administrative health data. We then compared groups’ characteristics using chi-square tests and ANOVA. Results:The study cohort was composed of 25,125 older adults, of which 784 (3.1%) had MNCD. About 70% of people with an MNCD identified in administrative health data did not report it in the CCHS. The four groups present specific challenges related to the importance of perception, timely diagnosis, and the caregivers’ roles in reporting health information. Conclusion:To a certain degree, both data sources fail to consider subgroups experiencing issues related to MNCD; studies like ours provide insight to understand their characteristics and needs better.

Keywords: Alzheimer’s disease, cross-sectional surveys, data accuracy, dementia, linked data, self-reported data

DOI: 10.3233/JAD-220327

Journal: Journal of Alzheimer's Disease, vol. 89, no. 3, pp. 1091-1101, 2022