BMJ 1999;319:29-32 ( 3 July )

Information in practice

Health information and interaction on the internet: a survey of female urinary incontinence

Hogne Sandvik, general practitioner. 

Department of Public Health and Primary Health Care, University of Bergen, Ulriksdal 8c, N-5009 Bergen, Norway

hogne.sandvik{at}isf.uib.no

    Abstract
Top
Abstract
Introduction
Methods
Results
Discussion
References

Objective: To evaluate the internet as a source of information about urinary incontinence and to explore interactive facilities.
Design: Limited survey of internet resources.
Subjects: 75 websites providing information about incontinence and an opportunity for interactivity, 25 web doctors, and two news groups.
Main outcome measures: Quality scores according to predefined general and specific criteria. Internet popularity indexes according to number of links to websites. Correlation between quality scores and popularity indexes.
Results: Few sites provided comprehensive information, but the information actually provided was mostly correct. Internet popularity indexes did not correlate with quality scores. The most informative site was easily found with general internet search engines but was not found in any of the medical index sites investigated. Sixty six per cent of sites responded to an email request for advice from a fictitious incontinent woman, half of them within 24 hours. Twelve responders provided vital information that the woman might suffer from drug induced incontinence.
Conclusions: Excellent information about urinary incontinence was found on the internet, but the number of links to a site did not reflect quality of content. Patients may get valuable advice and comfort from using interactive services.


Key messages

  • The internet has become a major source for health information, but its usefulness is largely unknown

  • In this study a fictitious story of an incontinent woman was used to evaluate the internet as a source of information about urinary incontinence and to explore interactive facilities

  • Excellent information could be found on the web

  • The number of links to a site was not an indication of the quality of its contents, and medical index sites had no record of the best quality site that was found by general search engines

  • Useful medical advice was rapidly obtained through interactive services (email, news)



    Introduction
Top
Abstract
Introduction
Methods
Results
Discussion
References

Most women with urinary incontinence can be treated by simple interventions.1 Nevertheless, many incontinent women suffer in silence. Usual reasons for not seeking help are embarrassment, believing that incontinence is a normal part of ageing and that nothing can be done, and fear of surgery. 2 3 There is an obvious need for educating the public about incontinence, 4 5 and I conducted this study to evaluate the benefit of the internet as a source of information.

    Methods
Top
Abstract
Introduction
Methods
Results
Discussion
References

I conducted this study in early spring 1998, using the case of a fictitious woman, Molly Jones, who had symptoms of stress incontinence, some typical fears and attitudes, and was taking an antihypertensive that could have caused or aggravated her incontinence problem.6 In addition to seeking information on the web, I investigated interactive opportunities, using the following story.

"I am 63 years old and have been troubled by incontinence for several years. I am very reluctant to the idea of any surgical operation. Therefore, I have not dared to tell my family doctor about it. Are there other options? My eldest daughter, who works as an assistant in a nursing home, says that surgery for incontinence often fails. I have never had any operations, and I only take one Cardura doxazosin 4 because of my blood pressure. This bladder problem is getting worse and worse, and I am desperate. If I laugh, it happens; I can even clear my throat, and it happens. I am afraid that other people will notice the smell. Please, can you advise me what to do? Is surgery the only cure for this problem?"

I searched the internet for websites providing information about incontinence and an opportunity for interactivity until I had 25 in each of three categories: universities, hospitals, and clinics (labelled "professionals"); societies, foundations, and journals ("organisations"); and "commercial" sites. In addition to these 75 sites, I also investigated 25 web doctors (sites providing free general medical advice). Finally, I posted Molly Jones's story on two news groups (sci.med and alt.support.menopause).

Scoring system
I scored the 75 incontinence sites for general and specific quality.

General quality criteria were partly based on those suggested by Silberg et al7 and partly on the HONcode principles.8 I checked the following elements and scored them on a scale of 0 to 2.

  • Ownership (2=name and type of provider clearly stated, 1=all other indications of ownership, 0=no indication of ownership)
  • Authorship (2=author's name and qualification clearly stated, 1=all other indications of authorship, 0=no indication of authorship)
  • Source (2=references given to scientific literature, 1=all other indications of source, 0=no indication of source)
  • Currency (2=date of publication or update clearly stated on all pages, 1=all other indications of currency, 0=no indication of currency)
  • Interactivity (2=clear invitation to comment or ask questions by an email address or link to a form, 1=any other email address on the site, 0=no possibility for interactivity)
  • Navigability (2=information easily found by following links from home page, 1=information found only with difficulty by following links, search engine provided if information widely scattered on site, 0=information scattered around, no search engine)
  • Balance (2=balanced information, 1=biased in favour of own products or services, 0=only promoting own products or services).

Specific quality criteria were information about epidemiology of incontinence, different types of incontinence, drugs that may cause incontinence, what investigations to expect in a doctor's surgery, pelvic floor exercises and biofeedback, alpha  adrenergic agonists, oestrogen, electrostimulation, vaginal cones, vaginal pessaries and bladder neck support, urethral plugs and shields, collagen and other bulking agents, surgery, and pads. I scored each of these 14 elements on a four point scale: 3=comprehensively explained, 2=briefly explained, 1=mentioned, 0=not mentioned.

I calculated the total score (0-56) for each website to determine which site could be considered the most informative.

Search facilities
I performed a specific search for "urinary incontinence" on the internet in order to determine if an average net surfer could be expected to find the most informative site that I had identified. I used the following internet resources.

  • General search facilities: Alta Vista, Hotbot, Northern Light, Infoseek, Excite, Galaxy, and Yahoo
  • Medical search facilities: Achoo, Cliniweb, Health AtoZ, Healthfinder, Karolinska Institute, Medical Matrix, Medical World Search, Medsite, and OMNI.

Some search engines provide an opportunity for locating web pages that have linked to a given page or website. Two different approaches were used to determine the popularity of the websites as judged by the internet society itself (internet popularity indexes):

  • Using Hotbot, I measured the number of links to the main incontinence page of each website
  • Using Alta Vista, I measured the number of links to all pages of each website and divided this by the number of pages of the site (also according to Alta Vista).


                              
View this table:
[in this window]
[in a new window]
 

Table 1. General quality scores (2 is best score) for incontinence information on 75 websites. Values are numbers of sites in each category

Statistics
Results are presented as means and differences between means with their 95% confidence intervals. Pearson's correlation coefficients were calculated for quality scores and internet popularity indexes. Significance was accepted at the 5% level (P<0.05).

    Results
Top
Abstract
Introduction
Methods
Results
Discussion
References

Web information
The figure shows the distribution of total quality scores among the 75 websites. The mean total quality score for "professional" sites was 21.6 (95% confidence interval 19.0 to 24.2) and was 24.2 (20.1 to 28.3) for "organisations" and 17.1 (13.8 to 20.3) for commercial sites. The difference between organisations and commercial sites was significant (7.1, 95% confidence interval 2.0 to 12.2), as it was between professionals and commercial sites (4.5, 0.5 to 8.6).



View larger version (13K):
[in this window]
[in a new window]
  		Distribution of total quality scores among the 75 websites providing information about incontinence

The internet popularity indexes (as measured by Alta Vista) were 0.3 (0.1 to 0.6) for professionals, 4.8 (1.2 to 8.5) for organisations, and 1.6 (0.5 to 2.6) for commercial sites. The difference was significant between organisations and professionals (4.5, 1.1 to 7.9) and between commercial sites and professionals (1.2, 0.2 to 2.2). There were no significant differences in popularity indexes as measured by Hotbot. The two internet popularity indexes correlated significantly with each other (Pearson's correlation coefficient R=0.40), but neither correlated significantly with the total quality scores.

The general quality criteria most often missing on the websites were information about authorship, source, and currency (table 1). Commercial sites accounted for 14 of the 15 sites lacking balance. The specific elements that were most often described on the sites were different types of incontinence, epidemiology, pelvic floor exercises, surgery, and what investigations to be expected in a doctor's surgery (table 2).


                              
View this table:
[in this window]
[in a new window]
 

Table 2. Specific quality scores (3 is best, 0 is worst) for incontinence information on 75 websites. Values are mean scores (95% confidence interval)

The most informative site, scoring 50 out of 56 points, was Access to Continence Care & Treatment (ACCT) by Diane K Newman.9 In my subsequent search for "urinary incontinence" this site was easily found with the general search engines (ranked 10-49 among 2573-6577 hits). However, none of the other service providers had included ACCT in their indexes.

Interactive information
Molly Jones received 66 email messages, 32 within 24 hours. In addition, I got 21 responses to posting Molly Jones's story on the news groups. All were polite and serious, but few of them provided comprehensive explanations about specific treatments. Most important, however, was that 12 of the responders warned Molly that her antihypertensive medication could contribute to her incontinence problem.

The most common advice given (33/66) was that Molly should consult her physician. Almost as many (30) provided general information about incontinence in a comforting and encouraging manner. Twenty three directed her to websites with more information, 16 offered to send printed matter, and 15 offered to arrange treatment.

The responses from the news groups came from lay people, some of whom provided personal experiences with different types of treatment. Taken together, these postings provided comprehensive information about pelvic floor exercises, surgery, collagen injections, oestrogen, pads, and urethral plugs.

    Discussion
Top
Abstract
Introduction
Methods
Results
Discussion
References

In this study I found that there was much useful information about incontinence on the internet, but, unless one makes use of the general search engines, this information may be hard to find. The number of links to a site did not seem to reflect quality. Patients may get valuable additional advice and comfort by using interactive services such as email and news.

Limitations of study
The internet is dynamic; websites change, move, and disappear. Therefore, the quality ranking I found in this study may not be replicated in a similar study next year. However, some of the findings may be generalisable.

It is not possible to identify all websites of a specific kind, nor is it possible to identify a representative sample. Therefore, the present sample may be biased. Molly's story was brief, but she presented symptoms typical of stress incontinence, and all respondents who suggested a diagnosis thought it likely that she suffered from this condition. Molly achieved a better response rate and more useful information than a similar fictitious patient describing a dermatological problem.10 This may also indicate that the respondents judged the information to be reliable.

Responses to similar case histories have been validated against physicians' performance with real patients,11 but, since there is no unambiguous standard as to what is "correct" management of incontinence, the present evaluation was based on my judgment.12 A stronger design would be to include judgments from several experts in order to allow assessment of judges' reliability.

Finding good quality information
One would expect that the number of links to a site would reflect its quality,13 but this did not seem to be the case. Probably, many links are created on the basis of "If you link to my site, I will link to your site." In addition, well known organisations will probably receive many links regardless of their site's quality, and new sites will have had less time to attract links than those that have been on the web for a long time.

Several medical index sites catalogue providers of high quality medical information on the internet. However, none had included the most informative incontinence site that I found. Some of these index sites may function as simple depositories, just recording links that are fed to them. Others probably lack the competency to judge the real quality of a site's content and rely more on design and a well known name.

Quality of information available
In a similar survey of health information on the web, Impicciatore et al found that only a few websites provided complete and accurate advice on managing fever in children.14 To a certain extent, I also found this---only a few sites provided comprehensive information. However, the information actually provided was mostly correct.

The possibility of interactivity provides a unique opportunity for establishing direct contact with experts. Earlier reports indicate that the public can choose accurately whom to ask for medical advice, even when it comes to subspecialties.15 Many women find it embarrassing to talk about incontinence to their family doctor, and some may prefer to discuss it on the net. 2 16 The possibility of meeting fellow sufferers on the net is also useful, and Molly's experience indicates that a suitable news group is a good place to start.

    Acknowledgments

I greatly appreciate the thoughtful comments of Professor Michael Kidd (University of Sydney) and Professor Steinar Hunskaar (University of Bergen) who reviewed the manuscript.

    Footnotes

Funding: None

Competing interests: None declared.

    References
Top
Abstract
Introduction
Methods
Results
Discussion
References

1. Seim A, Sivertsen B, Eriksen BC, Hunskaar S. Treatment of urinary incontinence in women in general practice: observational study. BMJ 1996; 312: 1459-1462[Abstract/Free Full Text].
2. Norton PA, MacDonald LD, Sedgwick PM, Stanton SL. Distress and delay associated with urinary incontinence, frequency, and urgency in women. BMJ 1988; 297: 1187-1189.
3. Goldstein M, Hawthorne ME, Engeberg S, McDowell BJ, Burgio KL. Urinary incontinence. Why people do not seek help. J Gerontol Nurs 1992; 18: 15-20[Medline].
4. Fonda D. Promoting continence as a health issue. Eur Urol 1997; 32: 28-32.
5. Lim PHC, Fonda D. The ContiNet of the International Continence Society. Neurol Urodynamics 1997; 16: 609-616.
6. Marshall HJ, Beevers DG. Alpha-adrenoceptor blocking drugs and female urinary incontinence: prevalence and reversibility. Br J Clin Pharmacol 1996; 42: 507-509[Medline].
7. Silberg WM, Lundberg GD, Musacchio RA. Assessing, controlling, and assuring the quality of medical information on the internet. JAMA 1997; 277: 1244-1245[Abstract/Free Full Text].
8. Health on the net foundation code of conduct for medical and health web sites. www.hon.ch/HONcode/Conduct.html (accessed 20 March 1999).
9. Newman DK. ACCT access to continence care & treatment. www.wellweb.com/INCONT/acct/contents.htm (accessed 20 March 1999).
10. Eysenbach G, Diepgen TL. Responses to unsolicited patient e-mail requests for medical advice on the world wide web. JAMA 1998; 280: 1333-1335[Abstract/Free Full Text].
11. Sandvik H. Criterion validity of responses to patient vignettes: an analysis based on management of female urinary incontinence. Fam Med 1995; 27: 388-392[Medline].
12. Sandvik H. Female urinary incontinence. In: Studies of epidemiology and management in general practice [thesis]. Bergen: University of Bergen , 1995www.uib.no/isf/people/synop.htm (accessed 20 March 1999).
13. Eysenbach G, Diepgen TL. Towards quality management of medical information on the internet: evaluation, labelling, and filtering of information. BMJ 1998; 317: 1496-1500[Free Full Text].
14. Impicciatore P, Pandolfini C, Casella N, Bonati M. Reliability of health information for the public on the world wide web: systematic survey of advice on managing fever in children at home. BMJ 1997; 314: 1875-1881[Abstract/Free Full Text].
15. Widman LE, Tong DA. Requests for medical advice from patients and families to health care providers who publish on the world wide web. Arch Intern Med 1997; 157: 209-212[Abstract/Free Full Text].
16. Borowitz SM, Wyatt JC. The origin, content, and workload of e-mail consultations. JAMA 1998; 280: 1321-1324[Abstract/Free Full Text].

(Accepted 26 March 1999)

© BMJ 1999
Add to CiteULike CiteULike   Add to Complore Complore   Add to Connotea Connotea   Add to Del.icio.us Del.icio.us   Add to Digg Digg   Add to Reddit Reddit   Add to StumbleUpon StumbleUpon   Add to Technorati Technorati    What's this?

Relevant Articles

Getting things wrong
BMJ 1999 319: 0. [Full Text] [PDF]

Getting things wrong
BMJ 1999 319: 0. [Full Text] [PDF]

This article has been cited by other articles:

  • Martins, E N, Morse, L S (2005). Evaluation of internet websites about retinopathy of prematurity patient education. Br J Ophthalmol 89: 565-568 [Abstract] [Full text]  
  • Anselmo, M. A., Lash, K. M., Stieb, E. S., Haver, K. E. (2004). Cystic Fibrosis on the Internet: A Survey of Site Adherence to AMA Guidelines. Pediatrics 114: 100-103 [Abstract] [Full text]  
  • Schmidt, K., Ernst, E. (2004). Assessing websites on complementary and alternative medicine for cancer. Ann Oncol 15: 733-742 [Abstract] [Full text]  
  • Benigeri, M., Pluye, P. (2003). Shortcomings of health information on the Internet. HEALTH PROMOT INT 18: 381-386 [Abstract] [Full text]  
  • Solomons, R. E. B. (2003). Assisted Internet Access for Patients in a General Practitioner Surgery: Helping the Information Poor. Health Informatics Journal 9: 199-206 [Abstract]  
  • Bath, P. A., Bouchier, H. (2003). Development and Application of a Tool Designed to Evaluate Web Sites Providing Information on Alzheimer's Disease. Journal of Information Science 29: 279-297 [Abstract]  
  • Fallis, D., Fricke, M. (2002). In reply:--. J. Am. Med. Inform. Assoc. 9: 403-404 [Full text]  
  • Eysenbach, G., Powell, J., Kuss, O., Sa, E.-R. (2002). Empirical Studies Assessing the Quality of Health Information for Consumers on the World Wide Web: A Systematic Review. JAMA 287: 2691-2700 [Abstract] [Full text]  
  • Meric, F., Bernstam, E. V, Mirza, N. Q, Hunt, K. K, Ames, F. C, Ross, M. I, Kuerer, H. M, Pollock, R. E, Musen, M. A, Singletary, S E. (2002). Breast cancer on the world wide web: cross sectional survey of quality of information and popularity of websites. BMJ 324: 577-581 [Abstract] [Full text]  
  • Rigby, M., Forsstrom, J., Roberts, R., Wyatt, J. (2001). Verifying quality and safety in health informatics services. BMJ 323: 552-556 [Full text]  
  • Griffiths, K. M, Christensen, H. (2000). Quality of web based information on treatment of depression: cross sectional survey. BMJ 321: 1511-1515 [Abstract] [Full text]  
  • Pandolfini, C., Impicciatore, P., Bonati, M. (2000). Parents on the Web: Risks for Quality Management of Cough in Children. Pediatrics 105: e1-e1 [Abstract] [Full text]  
  • Gray, J A M., de Lusignan, S. (1999). National electronic Library for Health (NeLH). BMJ 319: 1476-1479 [Full text]  

Rapid Responses:

Read all Rapid Responses

Quality of health information on the internet
J C O'Mahony, et al.
bmj.com, 26 Jul 1999 [Full text]
Internet health queries
Mike Clarke
bmj.com, 8 Aug 1999 [Full text]
Earlier study to evaluate an interactive venue was not cited
Gunther Eysenbach
bmj.com, 9 Aug 1999 [Full text]
Re: Internet health queries
Hogne Sandvik
bmj.com, 10 Aug 1999 [Full text]
Re: Earlier study to evaluate an interactive venue was not cited
Hogne Sandvik
bmj.com, 10 Aug 1999 [Full text]
Access jobs at BMJ Careers
Whats new online at Student BMJ