Self-administered questionnaires are commonly used to measure exposures and
outcomes in epidemiological research and thus need good validity. With inc
reasing numbers of cancer survivors, there is interest in the ongoing asses
sment of therapy-related complications, A medical record validation of pati
ent-reported complications following bone marrow transplantation (BMT) was
performed using a self-administered questionnaire. The study population con
sisted of 100 patients who had undergone BMT at the City of Hope. The follo
wing self-reported complications were validated using medical records: ocul
ar, endocrine, cardiovascular, musculoskeletal, pulmonary, gastrointestinal
, neurological, graft-versus-host disease, and subsequent cancers. Using in
formation from medical records as the standard, sensitivities ranged from 5
2.9% for subsequent cancers to 100% for avascular necrosis and hypothyroidi
sm, Specificities ranged from 75.4% for ocular complications to 100% for av
ascular necrosis, There was intermediate to excellent agreement (kappa = 0.
4-1.0) for all complications evaluated. Thus, the agreement between self-re
porting and medical records was good for complications with clear diagnosti
c criteria that are easily communicated to the patient, but was diminished
for complications with non-established diagnostic criteria (xerophthalmia)
or a fluctuating course (peripheral neuropathies and hypertension), Overall
these results suggest that cancer survivors can self-report serious compli
cations with an acceptable level of accuracy in epidemiological research.