Accuracy and comprehensiveness of publicly-available online data about bedwetting: An actionable opportunity to improve parent and caregiver self-education

Abstract

Introduction: Monosymptomatic nocturnal enuresis (MNE) is one of the most common reasons for referral to pediatric urologists. Prior to subspecialist visits, many parents seek electronically available information online to gather information about this condition and potential treatment options. Previous publications suggest that electronically available information on medical conditions do not always align with evidence-based or expert recommendations. We wondered if the same was true for MNE.

Objective: To describe the content and accessibility of electronically available information on MNE, and its alignment with recommendations from the International Children's Continence Society (ICCS-MNE).

Study design: We simulated a layperson's electronic search using 10 pertinent search terms associated with bedwetting. We evaluated the first five pages (50 results) for each search. We evaluated all publicly-available (non-paywalled) sites for concordance with ICCS-MNE in eight domains (increasing fluid intake, limiting bladder irritants, optimizing bowel habits, utilizing timed voiding, pelvic floor relaxation, endorsing alarm use, avoiding medications as standard first-line therapies, and pediatrician referral), as well as statements discouraging blaming or punishing the child. Sites were classified as layperson-derived (blogs, communities/forums) or commercially-derived (medical institutions, commercial medical sites, corporations, government). Reading level was assessed by readable.io (compound scoring algorithms).

Results: Of 500 pages, 410 (82%) met inclusion criteria. Of these, 49.3% were layperson-derived and 47.8% were commercially-derived. Publication year ranged from 1999 to 2017. A median three (range 0-8) therapeutic domains were mentioned per site. Only one site discussed all eight therapeutic domains. Commercial sites discussed more ICCS-MNE domains than blogs and communities/forums (median 4.1 vs. 2.4, p < 0.0001; Figure). Blogs and forums were less likely to recommend subspecialist evaluation (53.0% vs. 81.1%, p < 0.0001), but more likely to recommend alternative medicine therapies (57.9% vs. 28.6%, p < 0.0001). The overall median readability grade level was lower for blogs/communities than for commercial sites (7.9 vs. 8.6, p < 0.0001).

Discussion: Our findings show that the vast majority of electronically available information on MNE is not congruent with or does not include all ICCS-MNE recommendations. About half of websites are blogs and forums; these not only are more likely to recommend alternative medicine therapies and less likely to recommend subspecialist evaluation, but have lower reading levels and thus may be accessible to more laypersons.

Conclusion: Neither commercially-derived nor layperson-derived websites are comprehensive with regard to ICCS-MNE recommendations. Our findings underscore the need to ensure that electronically published data are accurate, and to understand what data patients may have acquired before visiting with clinicians.

Keywords: Bedwetting; Education; Enuresis; Internet; Literacy.