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Online obituaries are a reliable and valid source of mortality data

2016; Elsevier BV; Volume: 79; Linguagem: Inglês

10.1016/j.jclinepi.2016.05.012

1878-5921

Medha Soowamber, John Granton, Fatemeh Bavaghar-Zaeimi, Sindhu R. Johnson,

Pneumocystis jirovecii pneumonia detection and treatment

Loss-to-follow-up may result in loss of statistical power by reduction of effective sample size; may introduce bias which compromises the study's validity [[1]Kristman V. Manno M. Cote P. Loss to follow-up in cohort studies: how much is too much?.Eur J Epidemiol. 2004; 19: 751-760Crossref PubMed Scopus (473) Google Scholar]; result in different patient distribution between study arms [[2]Butler C.W. Snyder M. Wood D.E. Curtis J.R. Albert R.K. Benditt J.O. Underestimation of mortality following lung volume reduction surgery resulting from incomplete follow-up.Chest. 2001; 119: 1056-1060Abstract Full Text Full Text PDF PubMed Scopus (21) Google Scholar]; and underestimate mortality data [[3]Akl E.A. Briel M. You J.J. Sun X. Johnston B.C. Busse J.W. et al.Potential impact on estimated treatment effects of information lost to follow-up in randomised controlled trials (LOST-IT): systematic review.BMJ. 2012; 344: e2809Crossref PubMed Scopus (215) Google Scholar]. Reasons for loss-to-follow-up include deterioration in the medical condition, socioeconomic factors, and mortality [4Geng E.H. Bangsberg D.R. Musinguzi N. Emenyonu N. Bwana M.B. Yiannoutsos C.T. et al.Understanding reasons for and outcomes of patients lost to follow-up in antiretroviral therapy programs in Africa through a sampling-based approach.J Acquir Immune Defic Syndr. 2010; 53: 405-411Crossref PubMed Scopus (214) Google Scholar, 5Egger M. Spycher B.D. Sidle J. Weigel R. Geng E.H. Fox M.P. et al.Correcting mortality for loss to follow-up: a nomogram applied to antiretroviral treatment programmes in sub-Saharan Africa.PLoS Med. 2011; 8: e1000390Crossref PubMed Scopus (122) Google Scholar]. 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 obtain mortality data is to use online obituaries. Chronic disease clinics and studies have used online obituaries to track patients lost-to-follow-up [6Carlson M.D. Morrison R.S. Study design, precision, and validity in observational studies.J Palliat Med. 2009; 12: 77-82Crossref PubMed Scopus (271) Google Scholar, 7Hussein H. Lee P. Chau C. Johnson S.R. The effect of male sex on survival in systemic sclerosis.J Rheumatol. 2014; 41: 2193-2200Crossref PubMed Scopus (41) Google Scholar, 8Johnson S.R. Granton J.T. Tomlinson G.A. Grosbein H.A. Le T. Lee P. et al.Warfarin in systemic sclerosis-associated and idiopathic pulmonary arterial hypertension. A Bayesian approach to evaluating treatment for uncommon disease.J Rheumatol. 2012; 39: 276-285Crossref PubMed Scopus (56) Google Scholar, 9Sadeghi S. Granton J.T. Akhavan P. Pasarikovski C.R. Roos A.M. Thenganatt J. et al.Survival in rheumatoid arthritis-associated pulmonary arterial hypertension compared with idiopathic pulmonary arterial hypertension.Respirology. 2015; 20: 481-487Crossref PubMed Scopus (13) Google Scholar, 10Pasarikovski C.R. Granton J.T. Roos A.M. Sadeghi S. Kron A.T. Thenganatt J. et al.Sex disparities in systemic sclerosis-associated pulmonary arterial hypertension: a cohort study.Arthritis Res Ther. 2016; 18: 30Crossref PubMed Scopus (21) Google Scholar]. It is uncertain if this is appropriate for research. Our objectives were to evaluate the reliability and validity of online obituaries as a source of mortality data in two chronic diseases: systemic sclerosis (SSc) and idiopathic pulmonary arterial hypertension (IPAH). Subjects whose survival status was known were randomly selected from the Toronto Scleroderma Program and the University Health Network Pulmonary Hypertension Program. Five online obituary web sites were evaluated [11Legacy.com. 2014. Available at: http://www.legacy.com/ns/. Accessed May 12, 2014.Google Scholar, 12In Memorium. 2014. Death notices and obituaries in Canada. Available at: http://www.inmemoriam.ca/search/. Accessed May 14, 2014.Google Scholar, 13Your Life Moments. 2014. Available at: http://www.yourlifemoments.ca/sitepages/static/obits/cityResults_44_1.asp. Accessed May 14, 2014.Google Scholar, 14Life News. 2014. Available at: http://www.lifenews.ca/about. Accessed May 14, 2014.Google Scholar, 15Le Necrologue. 2014. Available at: http://www.lenecrologue.com/obituary/area/all/. Accessed May 16, 2014.Google Scholar]. Two investigators, blinded to survival status, independently entered the first and last name of each subject in each web site. If the subject was identified as deceased, other matching variables (date of birth, location, diagnosis) were used to verify the patient. Intrarater and interrater reliability was evaluated using the intraclass correlation coefficient (ICC). Pearson's correlation coefficient (r) was used to evaluate the correlation between the web site and actual survival status. We studied 365 (219 SSc, 146 IPAH) subjects (Table 1). The ICC for the intrarater reliability was Legacy.com 0.95 (95% CI 0.93–0.96); Yourlifemoments.ca 0.96 (95% CI 0.95–0.97); Inmemoriam.ca 0.77 (95% CI 0.72–0.80), Lifenews.ca 0.75 (95% CI 0.71–0.80), and Lenecrologue.com 0.21 (95% CI 0.11–0.31). The ICC for interrater reliability using Legacy.com was 0.82 (95% CI 0.78–0.85). Because the intrarater reliability was lower for the other web sites, the ICC for interrater reliability for these web sites was not evaluated.Table 1Patient characteristicsCharacteristicsCohort, N = 365SSc, N = 219IPAH, N = 146Female sex273 (74.7%)171 (78.0%)102 (69.8%)Deceased206 (56.4%)112 (51.1%)94 (64.3%)Abbreviations: SSc, systemic sclerosis; IPAH, idiopathic pulmonary arterial hypertension. Open table in a new tab Abbreviations: SSc, systemic sclerosis; IPAH, idiopathic pulmonary arterial hypertension. Legacy.com correctly identified the most deceased subjects (r = 0.36 [95% CI 0.27–0.45]). This positive correlation was similar across diseases (SSc r = 0.34 [95% CI 0.21–0.45]), IPAH (r = 0.41 [95% CI 0.26–0.53]) (Table 2).Table 2Correlation of web site findings and known survival statusWeb siteCorrelation coefficient, r (95% CI)Legacy.com Total cohort0.36 (0.27, 0.45)SSc0.34 (0.21, 0.45)IPAH0.41 (0.26, 0.53)Inmemoriam.ca Total cohort0.06 (−0.04, 0.16)SSc0.08 (−0.05, 0.21)IPAH0.01 (−0.15, 0.18)Yourlifemoments.ca Total cohort0.09 (−0.01, 0.19)SSc0.07 (−0.05, 0.21)IPAH0.11 (−0.05, 0.27)Lifenews.ca Total cohort0.08 (−0.02, 0.18)SSc0.02 (−0.11, 0.15)IPAH0.16 (−0.01, 0.32)Lenecrologue.com Total cohort0.12 (−0.02, 0.18)SSc0.09 (−0.04, 0.22)IPAH0.19 (0.03, 0.34)Abbreviations: CI, confidence interval; SSc, systemic sclerosis; IPAH, idiopathic pulmonary arterial hypertension. Open table in a new tab Abbreviations: CI, confidence interval; SSc, systemic sclerosis; IPAH, idiopathic pulmonary arterial hypertension. We found that selected obituary web sites were reliable and valid sources of survival data. Traditional sources of survival data include clinic charts, hospital medical records, or death certificates. However, these sources have critical limitations [[16]Maudsley G. Williams E.M. "Inaccuracy" in death certification–where are we now?.J Public Health Med. 1996; 18: 59-66Crossref PubMed Scopus (155) Google Scholar]. Outpatient charts are dependent on notification that the patient is deceased or has moved. Hospital records are only useful if the terminal event occurred as an inpatient. Most investigators do not have access to death certificates. Furthermore, death certificates have been shown to be an inaccurate source of cause of death data as individuals unaware of the full medical details, or insufficiently trained in accurately indicating the required information, frequently complete them [16Maudsley G. Williams E.M. "Inaccuracy" in death certification–where are we now?.J Public Health Med. 1996; 18: 59-66Crossref PubMed Scopus (155) Google Scholar, 17Maclaughlan J. Wells C. Death certification reform: a case study on the potential impact on mortality statistics England and Wales. Statistical Bulletin. Experimental Statistics. Office for National Statistics, UK2012: 1-17Google Scholar]. The inaccuracy of death certificates is particularly true in older patients that have a greater number of comorbidities [[18]Molina E. del Rincon I. Restrepo J.F. Battafarano D.F. Escalante A. Mortality in Rheumatoid Arthritis (RA): factors associated with recording RA on death certificates.BMC Musculoskelet Disord. 2015; 16: 277Crossref PubMed Scopus (8) Google Scholar]. In summary, use of selected online obituaries is a reliable and valid method to collect mortality data. This approach may be used to track the vital status of some patients who are lost-to-follow-up.