Open Access Capture of Patients With Gastroesophageal Reflux Disease Using an Online Patient-Reported Outcomes Instrument

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Abstract

Background

Persons with gastroesophageal reflux disease (GERD) frequently search online for information about causes and treatment options. The GerdQ self-assessment questionnaire can be used for diagnosis of GERD and follow-up of symptoms.

Objectives

To assess whether it is feasible (1) to study the prevalence and impact of GERD in persons visiting a GERD information website, and (2) to identify partial responsiveness to proton pump inhibitor (PPI) therapy using the GerdQ.

Methods

All visitors (aged 18–79 years) to a GERD information website between November 2008 and May 2011 were invited to complete the GerdQ online. The GerdQ questionnaire consists of 6 questions (score per question: 0–3). In respondents who did not use PPIs, we used the questionnaire to identify those with GERD (total score ≥8) and assess the influence of these symptoms on their daily life, divided into low (total score <3 on impact questions) and high impact (total score ≥3 on impact questions). In PPI users, we used the GerdQ to quantify partial responsiveness by any report of heartburn, regurgitation, sleep disturbance, or over-the-counter medication use for more than 1 day in the preceding week. We subsequently asked GerdQ respondents scoring ≥8 to complete the disease-specific Quality of Life in Reflux and Dyspepsia (QOLRAD) questionnaire.

Results

A total of 131,286 visitors completed the GerdQ, of whom 80.23% (n = 105,329) did not use a PPI. Of these, we identified 67,379 respondents (63.97%) to have GERD (n = 32,935; 48.88% high impact). We invited 14,028 non-PPI users to complete the QOLRAD questionnaire, of whom 1231 (8.78%) completed the questionnaire. Mean total QOLRAD scores were 5.14 (SEM 0.04) for those with high-impact GERD and 5.77 (SEM 0.04) for those with low-impact GERD ( P < .001). In PPI users, 22,826 of 25,957 respondents (87.94%) reported partial responsiveness. We invited 6238 PPI users to complete the QOLRAD questionnaire, of whom 599 (9.60%) completed the disease-specific quality-of-life questionnaire. Mean total QOLRAD scores were 4.62 (SEM 0.05) for partial responders and 5.88 (SEM 0.14) for adequate responders ( P < .001).

Conclusions

The GerdQ identified GERD in many website respondents and measured partial responsiveness in the majority of PPI users. Both non-PPI users with GERD and PPI users with partial responsiveness were associated with a decreased health-related quality of life. We have shown the feasibility of GERD patient identification online.

Related collections

Most cited references 31

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Epidemiology of gastro-oesophageal reflux disease: a systematic review.

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A systematic review of the epidemiology of gastro-oesophageal reflux disease (GORD) has been performed, applying strict criteria for quality of studies and the disease definition used. The prevalence and incidence of GORD was estimated from 15 studies which defined GORD as at least weekly heartburn and/or acid regurgitation and met criteria concerning sample size, response rate, and recall period. Data on factors associated with GORD were also evaluated. An approximate prevalence of 10-20% was identified for GORD, defined by at least weekly heartburn and/or acid regurgitation in the Western world while in Asia this was lower, at less than 5%. The incidence in the Western world was approximately 5 per 1000 person years. A number of potential risk factors (for example, an immediate family history and obesity) and comorbidities (for example, respiratory diseases and chest pain) associated with GORD were identified. Data reported in this systematic review can be interpreted with confidence as reflecting the epidemiology of "true" GORD. The disease is more common in the Western world than in Asia, and the low rate of incidence relative to prevalence reflects its chronicity. The small number of studies eligible for inclusion in this review highlights the need for global consensus on a symptom based definition of GORD.

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Using the Internet for Surveys and Health Research

Gunther Eysenbach, Jeremy L. Wyatt (2002)

This paper concerns the use of the Internet in the research process, from identifying research issues through qualitative research, through using the Web for surveys and clinical trials, to pre-publishing and publishing research results. Material published on the Internet may be a valuable resource for researchers desiring to understand people and the social and cultural contexts within which they live outside of experimental settings, with due emphasis on the interpretations, experiences, and views of `real world' people. Reviews of information posted by consumers on the Internet may help to identify health beliefs, common topics, motives, information, and emotional needs of patients, and point to areas where research is needed. The Internet can further be used for survey research. Internet-based surveys may be conducted by means of interactive interviews or by questionnaires designed for self-completion. Electronic one-to-one interviews can be conducted via e-mail or using chat rooms. Questionnaires can be administered by e-mail (e.g. using mailing lists), by posting to newsgroups, and on the Web using fill-in forms. In "open" web-based surveys, selection bias occurs due to the non-representative nature of the Internet population, and (more importantly) through self-selection of participants, i.e. the non-representative nature of respondents, also called the `volunteer effect'. A synopsis of important techniques and tips for implementing Web-based surveys is given. Ethical issues involved in any type of online research are discussed. Internet addresses for finding methods and protocols are provided. The Web is also being used to assist in the identification and conduction of clinical trials. For example, the web can be used by researchers doing a systematic review who are looking for unpublished trials. Finally, the web is used for two distinct types of electronic publication. Type 1 publication is unrefereed publication of protocols or work in progress (a `post-publication' peer review process may take place), whereas Type 2 publication is peer-reviewed and will ordinarily take place in online journals.

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The prevalence of lower urinary tract symptoms (LUTS) in the USA, the UK and Sweden: results from the Epidemiology of LUTS (EpiLUTS) study.

Karin S Coyne, Chris C Sexton, Christine L Thompson … (2009)

To estimate and compare the prevalence and associated bother of lower urinary tract symptoms (LUTS) in the general populations of the USA, UK and Sweden using current International Continence Society (ICS) definitions, as no previous population-based studies evaluating the prevalence of LUTS in the USA, using the 2002 ICS definitions, have been conducted. This cross-sectional, population-representative survey was conducted via the Internet in the USA, the UK and Sweden. Members of Internet-based panels were randomly selected to receive an e-mailed invitation to participate. If interested, respondents selected a link to an informed consent page, followed by the survey. Participants were asked to rate how often they experienced individual LUTS during the previous 4 weeks, on a five-point Likert scale, and, if experienced, how much the symptom bothered them. Descriptive statistics were used to summarize and present the data. Responses rates for the USA, the UK and Sweden were 59.6%, 60.6% and 52.3%, respectively, with a final sample of 30,000 (USA 20,000; UK 7500; Sweden 2500). The mean age (range) of the participants was 56.6 (40-99) years; the mean percentages for race were 82.9% white, 6.7% black, 6.0% Hispanic and 4.4% Asian/other. The prevalence of LUTS was defined by two symptom frequency thresholds, i.e. at least 'sometimes' and at least 'often' for all LUTS except incontinence, where frequency thresholds were at least 'a few times per month' and at least 'a few times per week'. The prevalence of at least one LUTS at least 'sometimes' was 72.3% for men and 76.3% for women, and 47.9% and 52.5% for at least 'often' for men and women, respectively. For most LUTS, at least half of the participants were bothered 'somewhat' or more using a frequency threshold of at least 'sometimes'. For a threshold of at least 'often', 'somewhat' or more bother was reported by > or =70% of participants except for terminal dribble in men and split stream in women. In this large population study of three countries, LUTS are highly prevalent among men and women aged >40 years. In general, LUTS experienced 'often' or more are bothersome to most people.

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Author and article information

Contributors

Merel M Tielemans:

Department of Gastroenterology and HepatologyRadboud University Medical CenterPO Box 9101Internal code 455Nijmegen, 6500 HBNetherlands31 24 361699931 24 3540103M.Tielemans@MDL.umcn.nl

Journal

Journal ID (nlm-ta): Interact J Med Res

Journal ID (iso-abbrev): Interact J Med Res

Journal ID (publisher-id): IJMR

Title: Interactive Journal of Medical Research

Publisher: JMIR Publications Inc. (Toronto, Canada )

ISSN (Electronic): 1929-073X

Publication date Collection: Jul-Dec 2012

Publication date (Electronic): 26 September 2012

Volume: 1

Issue: 2

Electronic Location Identifier: e7

Affiliations

[1 ]Department of Gastroenterology and Hepatology Radboud University Medical Center NijmegenNetherlands

[2 ]Department of Gastroenterology and Hepatology University Medical Center Utrecht UtrechtNetherlands

[3 ]Department of Gastroenterology and Hepatology Elkerliek Hospital HelmondNetherlands

[4 ]David Geffen School of Medicine Division of Digestive Diseases UCLA Los Angeles, CAUnited States

[5 ]UCLA/VA Center for Outcomes Research and Education (CORE) Los Angeles, CAUnited States

Author notes

Corresponding Author: Merel M Tielemans M.Tielemans@ 123456MDL.umcn.nl

Article

Publisher ID: v1i2e7

DOI: 10.2196/ijmr.2101

PMC ID: 3626138

PubMed ID: 23611985

SO-VID: e58388ac-c5f3-4d28-8036-ba6efdd57169

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Interactive Journal of Medical Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.i-jmr.org/, as well as this copyright and license information must be included.

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