The accuracy of patient-reported measures for GI symptoms

A comparison of real time and retrospective reports

J. M. Lackner, J. Jaccard, L. Keefer, R. Firth, A. M. Carosella, M. Sitrin, D. Brenner, Jason Bratton, Gregory Gudleski, Leonard Katz, Susan Krasner, Chang Xing Ma, Sarah Quinton, Christopher Radziwon, Representing The Ibsos Research Group

Research output: Contribution to journalArticle

Abstract

Background: Obtaining accurate information about gastrointestinal (GI) symptoms is critical to achieving the goals of clinical research and practice. The accuracy of patient data is especially important for functional GI disorders (e.g., IBS) whose symptoms lack a biomarker and index illness severity and treatment response. Retrospective patient-reported data are vulnerable to forgetting and various cognitive biases whose impact has not been systematically studied in patients with GI disorders. The aim of this study was to document the accuracy of patient-reported GI symptoms over a reporting period (1 week) most representative of the time frame used in research and clinical care. Methods: Subjects were 273 Rome III-diagnosed IBS patients (mean age = 39 years, 89% F) who completed end of day GI symptom ratings for 7 days using an electronic diary. On Day 8, Subjects recalled the frequency and/or intensity of IBS symptoms over the past 7 days. Reports were then compared against a validation criterion based on aggregated end of day ratings. Key Results: At the group level, subjects recalled most accurately abdominal pain and urgency intensity at their worst, urgency days, and stool frequency. When data were analyzed at the individual level, a subgroup of subjects had difficulty recalling accurately symptoms that showed convergence between recall and real time reports at the group level. Conclusions & Inferences: Although many patients' recollection for specific GI symptoms (e.g., worst pain, stool frequency) is reasonably accurate, a non-trivial number of other symptoms (e.g., typical pain) are vulnerable to distortion from recall biases that can reduce sensitivity of detecting treatment effects in clinical and research settings. While clinicians and researchers rely on retrospective recall of GI symptoms to determine the severity of functional GI disorders, its accuracy has not been well validated. As a group, patients tend to recall accurately certain (but not all) GI symptoms when retrospective recall of symptoms at the week's end is compared to multiple end of day ratings captured electronically for 1 week. We found good agreement between multiple end of day and end of week reports for stool frequency, worst intensity of pain and urgency, and urgency days. When data were analyzed at an individual-level representative of clinical practice, a subgroup of subjects had difficulty recalling accurately symptoms (e.g., stool frequency) that showed convergence between recall and real time reports at the group level.

Original languageEnglish (US)
Pages (from-to)1802-1811
Number of pages10
JournalNeurogastroenterology and Motility
Volume26
Issue number12
DOIs
StatePublished - Dec 1 2014

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Gastrointestinal Diseases
Pain
Severity of Illness Index
Research
Abdominal Pain
Biomarkers
Research Personnel
Therapeutics
Data Accuracy

Keywords

  • Daily diary
  • Irritable bowel syndrome
  • Pain
  • Pain measurement
  • Randomized trial
  • Recall
  • Symptom severity

ASJC Scopus subject areas

  • Physiology
  • Endocrine and Autonomic Systems
  • Gastroenterology

Cite this

Lackner, J. M., Jaccard, J., Keefer, L., Firth, R., Carosella, A. M., Sitrin, M., ... Representing The Ibsos Research Group (2014). The accuracy of patient-reported measures for GI symptoms: A comparison of real time and retrospective reports. Neurogastroenterology and Motility, 26(12), 1802-1811. https://doi.org/10.1111/nmo.12466

The accuracy of patient-reported measures for GI symptoms : A comparison of real time and retrospective reports. / Lackner, J. M.; Jaccard, J.; Keefer, L.; Firth, R.; Carosella, A. M.; Sitrin, M.; Brenner, D.; Bratton, Jason; Gudleski, Gregory; Katz, Leonard; Krasner, Susan; Ma, Chang Xing; Quinton, Sarah; Radziwon, Christopher; Representing The Ibsos Research Group.

In: Neurogastroenterology and Motility, Vol. 26, No. 12, 01.12.2014, p. 1802-1811.

Research output: Contribution to journalArticle

Lackner, JM, Jaccard, J, Keefer, L, Firth, R, Carosella, AM, Sitrin, M, Brenner, D, Bratton, J, Gudleski, G, Katz, L, Krasner, S, Ma, CX, Quinton, S, Radziwon, C & Representing The Ibsos Research Group 2014, 'The accuracy of patient-reported measures for GI symptoms: A comparison of real time and retrospective reports', Neurogastroenterology and Motility, vol. 26, no. 12, pp. 1802-1811. https://doi.org/10.1111/nmo.12466
Lackner, J. M. ; Jaccard, J. ; Keefer, L. ; Firth, R. ; Carosella, A. M. ; Sitrin, M. ; Brenner, D. ; Bratton, Jason ; Gudleski, Gregory ; Katz, Leonard ; Krasner, Susan ; Ma, Chang Xing ; Quinton, Sarah ; Radziwon, Christopher ; Representing The Ibsos Research Group. / The accuracy of patient-reported measures for GI symptoms : A comparison of real time and retrospective reports. In: Neurogastroenterology and Motility. 2014 ; Vol. 26, No. 12. pp. 1802-1811.
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