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Filling the gaps in SARDs research: collection and linkage of administrative health data and self-reported survey data for a general population-based cohort of individuals with and without diagnoses of systemic autoimmune rheumatic disease (SARDs) from British Columbia, Canada
  1. Natalie McCormick1,2,
  2. Kathryn Reimer2,3,
  3. Ali Famouri2,
  4. Carlo A Marra1,2,4,
  5. J. Antonio Aviña-Zubieta2,5
  1. 1 Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, Canada
  2. 2 Arthritis Research Canada, Richmond, Canada
  3. 3 Department of Occupational Science & Occupational Therapy, Faculty of Medicine, The University of British Columbia, Vancouver, Canada
  4. 4 School of Pharmacy, University of Otago, Dunedin, New Zealand
  5. 5 Division of Rheumatology, Department of Medicine, The University of British Columbia, Vancouver, Canada
  1. Correspondence to J. Antonio Aviña-Zubieta; azubieta{at}arthritisresearch.ca

Abstract

Purpose Systemic autoimmune rheumatic diseases (SARDs) are a group of debilitating autoimmune diseases, including systemic lupus erythematosus and related disorders. Assessing the healthcare and economic burden of SARDs has been challenging: while administrative databases can be used to determine healthcare utilisation and costs with minimal selection and recall bias, other health, sociodemographic and economic data have typically been sourced from highly selected, clinic-based cohorts. To address these gaps, we are collecting self-reported survey data from a general population-based cohort of individuals with and without SARDs and linking it to their longitudinal administrative health data.

Participants Using administrative data from the province of British Columbia (BC), Canada, we established a population-based cohort of all BC adults receiving care for SARDs during 1996–2010 (n=20 729) and non-SARD individuals randomly selected from the general population. BC Ministry of Health granted us contact information for 12 000 SARD and non-SARD individuals, who were recruited to complete the surveys by mail or online.

Findings to date Four hundred individuals were initially invited to participate, with 135 (34%) consenting and 127 (94%) submitting the first survey (72% completed online). Sixty-three (49.6%) reported ≥1 SARD diagnosis. The non-SARDs group (n=64) was 92% female with mean age 57.0±11.6 years. The SARDs group (n=63) was 94% female with mean age 56.5±13.1 years. Forty-eight per cent of those with SARDs were current-or-former smokers (mean 10.6±16.2 pack-years), and 33% were overweight or obese (mean body mass index of 24.4±5.3).

Future plans Health and productivity data collected from the surveys will be linked to participants’ administrative health data from the years 1990–2013, allowing us to determine the healthcare and lost productivity costs of SARDs, and assess the impact of patient-reported variables on utilisation, costs, disability and clinical outcomes. Findings will be disseminated through scientific conferences and peer-reviewed journals.

  • administrative data
  • data linkage
  • health economics
  • statistics and research methods
  • rheumatic diseases
  • survey

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors Conception and design of the study: CAM and JAA-Z. Acquisition of the data: JAA-Z. Analysis and interpretation of the data: NM, KR, AF, CAM and JAA-Z. Drafting of the manuscript: NM and KR. Critical revision of the manuscript for important intellectual content: AF, CAM and JAA-Z. All authors gave final approval of the submitted manuscript.

  • Funding This work was supported by the Canadian Arthritis Network (grant # 10-SRP-IJD-01) and the Canadian Institutes of Health Research (grant # THC-135235). NM is supported by a Doctoral Research Award from the Canadian Institutes of Health Research. JAA-Z is currently the British Columbia Lupus Society Scholar and holds a Scholar Award from the Michael Smith Foundation for Health Research. The funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript.

  • Competing interests None declared.

  • Patient consent This submission does not contain personal medical information about an identifiable individual, living or dead.

  • Ethics approval Behavioural Research Ethics Board, University of British Columbia.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.

  • Correction notice This paper has been amended since it was published Online First. Owing to a scripting error, some of the publisher names in the references were replaced with 'BMJ Publishing Group'. This only affected the full text version, not the PDF. We have since corrected these errors and the correct publishers have been inserted into the references.

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