Date: Sunday, November 8, 2015
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.
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 February 18, 2020.
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