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Am J Gastroenterol. 2014 Feb;109(2):234-48. doi: 10.1038/ajg.2013.401. Epub 2013 Dec 17.

Development of an online library of patient-reported outcome measures in gastroenterology: the GI-PRO database.

Author information

1
Division of Rheumatology, University of Michigan, Ann Arbor, Michigan, USA.
2
1] Department of Gastroenterology, VA Greater Los Angeles Healthcare System, Los Angeles, California, USA [2] Department of Gastroenterology, Cedars-Sinai Medical Center, Los Angeles, California, USA.
3
Division of General Internal Medicine and Health Services Research, David Geffen School of Medicine at UCLA, and Department of Health Services, UCLA School of Public Health, Los Angeles, California, USA.
4
1] Division of Digestive Diseases, David Geffen School of Medicine at UCLA, Los Angeles, California, USA [2] Center for Neurobiology of Stress, David Geffen School of Medicine at UCLA, Los Angeles, California, USA.
5
1] Division of Digestive Diseases, David Geffen School of Medicine at UCLA, Los Angeles, California, USA [2] UCLA/VA Center for Outcomes Research and Education, Los Angeles, California, USA.
6
Department of Gastroenterology, Cedars-Sinai Medical Center, Los Angeles, California, USA.
7
UCLA/VA Center for Outcomes Research and Education, Los Angeles, California, USA.
8
Biomedical Library of the Health Sciences, University of California at Los Angeles, California, USA.
9
1] Department of Gastroenterology, VA Greater Los Angeles Healthcare System, Los Angeles, California, USA [2] Division of General Internal Medicine and Health Services Research, David Geffen School of Medicine at UCLA, and Department of Health Services, UCLA School of Public Health, Los Angeles, California, USA [3] Division of Digestive Diseases, David Geffen School of Medicine at UCLA, Los Angeles, California, USA [4] UCLA/VA Center for Outcomes Research and Education, Los Angeles, California, USA.

Abstract

OBJECTIVES:

Because gastrointestinal (GI) illnesses can cause physical, emotional, and social distress, patient-reported outcomes (PROs) are used to guide clinical decision making, conduct research, and seek drug approval. It is important to develop a mechanism for identifying, categorizing, and evaluating the over 100 GI PROs that exist. Here we describe a new, National Institutes of Health (NIH)-supported, online PRO clearinghouse-the GI-PRO database.

METHODS:

Using a protocol developed by the NIH Patient-Reported Outcome Measurement Information System (PROMIS(®)), we performed a systematic review to identify English-language GI PROs. We abstracted PRO items and developed an online searchable item database. We categorized symptoms into content "bins" to evaluate a framework for GI symptom reporting. Finally, we assigned a score for the methodological quality of each PRO represented in the published literature (0-20 range; higher indicates better).

RESULTS:

We reviewed 15,697 titles (κ>0.6 for title and abstract selection), from which we identified 126 PROs. Review of the PROs revealed eight GI symptom "bins": (i) abdominal pain, (ii) bloat/gas, (iii) diarrhea, (iv) constipation, (v) bowel incontinence/soilage, (vi) heartburn/reflux, (vii) swallowing, and (viii) nausea/vomiting. In addition to these symptoms, the PROs covered four psychosocial domains: (i) behaviors, (ii) cognitions, (iii) emotions, and (iv) psychosocial impact. The quality scores were generally low (mean 8.88 ± 4.19; 0 (min)-20 (max). In addition, 51% did not include patient input in developing the PRO, and 41% provided no information on score interpretation.

CONCLUSIONS:

GI PROs cover a wide range of biopsychosocial symptoms. Although plentiful, GI PROs are limited by low methodological quality. Our online PRO library (www.researchcore.org/gipro/) can help in selecting PROs for clinical and research purposes.

PMID:
24343547
PMCID:
PMC4275098
DOI:
10.1038/ajg.2013.401
[Indexed for MEDLINE]
Free PMC Article

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