The Validity and Reliability of Online Obituaries As a Source of Mortality Data

Medha Soowamber¹, John T. Granton², Fatemeh Bavaghar-Zaeimi³ and Sindhu R. Johnson^4,5, ¹Rheumatology, University of Toronto/ Toronto Western Hospital, Toronto, ON, Canada, ²Medicine, Univeristiy Health Network Pulmonary Hypertension Programme, Toronto General Hospital and University of Toronto, Toronto, ON, Canada, ³Rheumatology, Toronto Scleroderma Program, Toronto Western Hospital and Mount Sinai Hospital, Toronto, ON, Canada, ⁴Toronto Scleroderma Program, Division of Rheumatology, Toronto Western Hospital, Mount Sinai Hospital, Institue of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada, ⁵Institute of Health Policy, Management and Evaluation,, University of Toronto, Toronto, ON, Canada

Meeting: 2015 ACR/ARHP Annual Meeting

Date of first publication: September 29, 2015

Keywords: Arthritis, fibrosis, Rheumatic disease, scleroderma and systemic sclerosis

Session Information

Date: Sunday, November 8, 2015

Title: Systemic Sclerosis, Fibrosing Syndromes and Raynaud's - Clinical Aspects and Therapeutics Poster I

Session Type: ACR Poster Session A

Session Time: 9:00AM-11:00AM

Background/Purpose: Loss to follow-up is a major threat to the conduct of chronic disease cohort research. Tracking the survival status of patients who are lost to follow-up is limited by restricted access to death certificate data and patients moving. One strategy to gather mortality data is to use online obituaries. Although commonly used clinically, it is uncertain if this is appropriate for research. The primary objective of this study was to evaluate the reliability and validity of online obituaries as a source of mortality data in 2 chronic diseases, systemic sclerosis (SSc) and idiopathic pulmonary arterial hypertension (IPAH).

Methods: Patients whose survival status was known were randomly selected from the Toronto Scleroderma Program and the University Health Network Pulmonary Hypertension Program. Five commonly used online obituaries were evaluated. Two investigators, blinded to survival status, independently entered the first and last name of each patient in each website. If the patient was identified as deceased, other matching variables (date of birth, postal code, disease) were used to verify the patient. Pearson’s correlation coefficient (r) was used to evaluate the correlation between the website finding and actual survival status. Intra-rater and inter-rater reliability was evaluated using the intra-class correlation coefficient (ICC).

Results: We studied 365 patients (273 females, 92 males) including 219 SSc (171 females, 48 males) and 146 IPAH (102 females, 44 males) patients. There was a significant positive correlation between website 1 and the actual survival status (r = 0.36 (95%CI 0.27, 0.45, p<0.001)) and was similar across diseases, SSc (r=0.34 (95%CI 0.21, 0.45, p<0.001) and IPAH (r=0.41 (95% CI 0.26, 0.53, p<0.001). The ICC for the intra-rater reliability of websites 1 and 3 were 0.95 (95%CI 0.93, 0.96) and 0.96 (95%CI 0.95, 0.97) respectively, which were higher compared website 2, 4, 5 (0.77 (95%CI 0.72, 0.80), 0.75 (95%CI 0.71, 0.80) and 0.21 (95%CI 0.11, 0.31) respectively). The ICC for inter-rater reliability was strong (0.82 (95%CI 0.78, 0.85).

Conclusion: Use of selected online obituaries is a valid and reliable method to gather mortality data. They could be used in clinical research to track patients who are lost to follow up.

Disclosure: M. Soowamber, None; J. T. Granton, Actelion, Bayer and GSK, 5,Bayer, Actelion, Pfizer, 9,Actelion and Bayer, 9,Actelion, 9,IKARIA, 9; F. Bavaghar-Zaeimi, None; S. R. Johnson, None.

To cite this abstract in AMA style:

Soowamber M, Granton JT, Bavaghar-Zaeimi F, Johnson SR. The Validity and Reliability of Online Obituaries As a Source of Mortality Data [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10). https://acrabstracts.org/abstract/the-validity-and-reliability-of-online-obituaries-as-a-source-of-mortality-data/. Accessed .

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