Can electronic routine data act as a surrogate for patient-assessed outcome measures?

Objectives: There has been a rapid growth in the use of patient-assessed outcomes (PAOs) that are measured in the assessment of health technologies. The process of collection of such measures can be costly, and there may be problems associated with the ability of the patient to complete them. The use of electronically stored routine data may reduce costs and overcome the problems associated with patient completion. The feasibility of using routine data surrogates for the UK Inflammatory Bowel Disease Questionnaire (UKIBDQ) and the Short Form 36 (SF-36) was examined.

Methods: Clinical terms and codes for the UKIBDQ and SF-36 questions were identified, and data from electronic routine sources were sought on patients participating in a randomized controlled trial. The presence or absence of relevant symptoms was used to generate surrogate scores, which were compared with the original scores.

Results: Most questions in the UKIBDQ and SF-36 were codable but only one third of the terms were recorded routinely in electronic form. The surrogate total IBDQ score had reasonable reliability (Kuder–Richardson coefficient = 0.51), but this reliability could not be determined for the SF-36. Intraclass correlations between routine and designed data were poor to weak.

Conclusions: Although electronic routine data sources had the capacity to develop surrogate measures for patient assessed outcomes, there was evidence of wide underutilization of coding systems leading to an underreporting of symptoms. This finding is consistent with previous literature where only poor correlations were illustrated between patient assessed outcomes and surrogate scoring of symptoms.