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Tracing studies and analysis of the effect of loss to follow‐up on mortality estimation from patient registry data

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  • Vernon T. Farewell
  • Jerald F. Lawless
  • Dafna D. Gladman
  • Murray B. Urowitz

Abstract

Summary. Before patient registries are used for studies of the long‐term mortality that is associated with chronic medical conditions, the potential bias resulting from patients who become lost to follow‐up must be investigated. A study design, used for a systemic lupus erythematosus patient registry, is described. The design involves tracing patients who are defined as ‘lost to follow‐up’ according to specific criteria. This provides supplementary information on the mortality experience of patients who are lost to (regular) follow‐up. Some methods of analysis are described, based on comparing the mortality experience of patients when under regular follow‐up with the experience of patients after they are deemed to be lost to follow‐up. The effect of loss to follow‐up, death reporting and visits to the clinic on estimation procedures is illustrated and recommendations are made for patient registries which are to be used in mortality studies.

Suggested Citation

  • Vernon T. Farewell & Jerald F. Lawless & Dafna D. Gladman & Murray B. Urowitz, 2003. "Tracing studies and analysis of the effect of loss to follow‐up on mortality estimation from patient registry data," Journal of the Royal Statistical Society Series C, Royal Statistical Society, vol. 52(4), pages 445-456, October.
    • Handle: RePEc:bla:jorssc:v:52:y:2003:i:4:p:445-456
    DOI: 10.1111/1467-9876.00416
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    References listed on IDEAS

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    1. Constantine E. Frangakis & Donald B. Rubin, 2001. "Addressing an Idiosyncrasy in Estimating Survival Curves Using Double Sampling in the Presence of Self-Selected Right Censoring," Biometrics, The International Biometric Society, vol. 57(2), pages 333-342, June.
    2. Constantine E. Frangakis & Donald B. Rubin, 2001. "Rejoinder to Discussions on Addressing an Idiosyncrasy in Estimating Survival Curves Using Double Sampling in the Presence of Self-Selected Right Censoring," Biometrics, The International Biometric Society, vol. 57(2), pages 351-353, June.
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    Cited by:

    1. Richard J. Cook & Jerald F. Lawless, 2020. "Failure time studies with intermittent observation and losses to follow‐up," Scandinavian Journal of Statistics, Danish Society for Theoretical Statistics;Finnish Statistical Society;Norwegian Statistical Association;Swedish Statistical Association, vol. 47(4), pages 1035-1063, December.

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