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Originally published in: Huang MP, Rajarethinam RP, Abelson JL, Alessi NE. Case Studies of the Internet: Experiences at an Anxiety Disorders Program. (July/August 1998) MD Computing. 15 (4): 238-241. © Springer-Verlag New York, Inc.

Case Studies of the Internet:
Experiences at an Anxiety Disorders Program

Milton P. Huang, M.D., Rajaprabhakaran P. Rajarethinam, M.D., James L. Abelson, M.D., Ph.D, Norman E. Alessi, M.D.

The Internet is now rapidly becoming a part of our daily lives, influencing not only our method of communication, but also the form, content, and types of feeling we attempt to communicate. It is affecting the substance of our relationships, and in this regard, it will play an important mediating role in changing the doctor-patient relationship as it is reshaped by the forces of managed care and the new paradigm of patients as health product consumers. It is critical for us to better understand how the Internet affects our practice as health care providers. Although models for such an understanding have been proposed [1], ongoing discussion among clinicians and subsequent research will provide the best guidelines to direct our response as individuals and as a profession as a whole.

This paper describes a short series of cases from the Anxiety Disorders Program at the University of Michigan where the Internet influenced the delivery of healthcare. This influence ranged from obtaining instruction on particular therapies or medical treatments to obtaining information leading to changes in health care providers. We hope that by providing these clinical examples, we can help launch an ongoing discussion among the readers of this journal and the medical community to more precisely and thoughtfully define the issues that the Internet raises in delivering health care.

Cases

Case 1

The first patient was a 19 year old college student who had his first panic attack in October 1996. An urgent visit to the emergency room ruled out cardiac illness, but his illness progressed to the point of having daily attacks by the next month. He became hopeless and afraid to leave home, troubled by a nervous anticipation of further attacks. In response to this situation, he used the Internet to study panic attacks and anxiety.

He learned basic information on panic disorder and its treatment, including the principles of cognitive behavioral therapy (CBT) and exposure therapy. Using email and electronic bulletin boards, he came in contact with an electronic community of others suffering from panic disorder. One of these people instructed him on breathing techniques and deep muscle relaxation through email. These techniques helped him to reduce anxiety and the frequency of attacks. He sought further help from his family physician who prescribed paroxetine. Although this eliminated his panic attacks, he continued to suffer from agoraphobia prompting a referral to our clinic.

We started individual behavior therapy and continued the paroxetine, resulting in the relief from symptoms after a few months. The patient commented that he had already learned the principles of the exposure therapy that we used to treat his agoraphobia, but that he could not carry it out on his own as he could not find a well structured program on the Internet.

Case 2

The second patient was a 37 year old associate professor who had a single panic attack in December 1996 and developed severe agoraphobia. His primary care physician appropriately recommended a selective serotonin reuptake inhibitor (SSRI), but he declined to take the antidepressant as he had no depression. He came to us for a second opinion. We started him on behavior therapy and also recommended an SSRI, explaining how they work for panic disorder. Not fully convinced, the patient used the Internet to find out further information.

In newsgroups, he read about other patients, who provided 92 personal accounts of their experiences with different medications. He also visited several websites including the Smith-Klein Beecham website (Table 1).

He returned to us convinced that medication would be helpful and that Paxil in particular would be the best medication for him. He was started on paroxetine and continued on behavior therapy, with improvement.

Case 3

The third patient was a 22 year old student with obsessive compulsive disorder (OCD) who was diagnosed in college and started on clomipramine by a community psychiatrist. Though improved, he continued to have occasional rituals which distressed him. Using web pages and newsgroups, he learned about newer medications (SSRIs) and the use of cognitive behavioral therapy. This information prompted him to discuss other treatment options with his psychiatrist. Because this psychiatrist did not offer cognitive behavioral therapy, the patient returned to the Internet for further information.

He read a personal account of someone in a newsgroup who had successfully used CBT for OCD. When he contacted this person by email, she vividly described her gains with cognitive behavioral therapy, and recommended our program where she had received her treatment. This patient continued on clomipramine and improved with cognitive behavioral therapy.

Case 4

The fourth patient is a 24 year old psychology student who suffered from OCD symptoms for a year before seeking treatment. He used web pages, newsgroups, email, and chat groups extensively before diagnosing himself with OCD.

In seeking information about treatment, this patient commented that he found strongly biased opinions regarding medication vs. therapy from some newsgroups users. At one end were complaints about medication side effects (particularly the sexual side effects of SSRIs), or even tirades from patients who denounced medications altogether because of their personal history of non-response. At the other end were messages from unsatisfied therapy clients, praising medications and complaining about their therapists, as well as the time and cost of regular sessions.

Despite exposure to such viewpoints, our patient decided to seek comprehensive treatment including both medication and cognitive behavioral therapy. He posted a question in the electronic OCD newsgroup, asking for a good place for such treatment in his area, and was subsequently referred to our program where he was started on medications and therapy with improvement.

Discussion

In examining these different cases, several themes and questions emerge. One such theme is that of the patient taking a more active role as a consumer of health care service. In all of the examples given above, patients used the Internet to obtain information about their illness and potential treatments. In some cases, they sought this information before seeking professional care, and in all cases they discovered information that influenced their preferences for the types of treatment they would accept. Our third patient decided he wanted cognitive behavioral and switched care providers because his original physician did not provide this type of treatment. The fourth patient decided on the type of treatment he wanted and then used the Internet to find a provider. The Internet is now delivering an increased access to information that makes patients aware of other treatment options and encourages them to move into a consumer role, comparing their impressions of the cost and desirability of different treatments and different treatment providers [2, 3].

The National Library of Medicine's Medline database is freely available to anyone with Internet access, and receives a million visits a day [4]. As access to suchresources becomes easier, we clinicians will face situations in which patients have more information on a particular topic than we do. We will face more patients with predefined notions of what we should be delivering, and we will need to adjust our practice to accommodate their heightened information and opinions, so that we can continue to provide careful and appropriate care.

Our case studies not only demonstrate the increasing the sophistication of patients' information access, but also raise the question of patients' sophistication in judging the quality of information they receive. Even when patient have more information, they may not be able to judge it without clinical experience [5]. The Internet is providing a flood of medical information, some from the traditional medical establishment, others from providers of alternative treatments, drug manufacturers, and even outright frauds [6, 7]. There is little effective filtering of information on the Internet [2], and our fourth patient described the varying opinions he had to asses before deciding on the treatments to consider. Less discriminating patients may uncritically accept what they read.

Certainly, our first three cases all illustrate the power of others' personal experiences on the medical decisions that patients make. All clinicians have seen how strongly patients are influenced by the medical experiences of friends and relatives. Our second patient did not accept recommendation (for medication) of his primary care physician or our specialty clinic, but changed his mind after hearing about the experiences of others through the Internet. The Internet has created multiple communities of patients from all over the world with both good and bad medical experiences. Electronic discussion groups and patient support groups range in topic from cancer to chronic fatigue syndrome. The patients in these groups are easily accessible and have a powerful influence, both positive and negative, on each other.

For clinicians, it will become more important for us to not only to describe our treatments, but to also explain the rationale for using them. We must do this in ways that help our patients make informed decisions about treatment and filter out inappropriate information when they are faced with it.

In addition to these questions around treatment information provided on the Internet, there is the question of treatment itself being provided through the Internet. Such treatment falls into two categories: self-treatment and treatment by others. The first is exemplified in our first case where the patient learned several techniques and improved before seeking professional help. The self-help movement is developing in tandem with consumerism in health care delivery, and increased Internet information will accelerate this trend. This will especially be true in cases where people may have had limited access to information before. Our patient, who was homebound, illustrates how the Internet can be even more helpful for those who can not easily leave home for physical or psychological reasons. Email, "Internet phones," and Internet-based video telemedicine have all been used in different settings to provide different types of medical and psychiatric care to homebound patients [8].

All of our patients were familiar with the availability of "cybertherapists," although none elected to use their services. Demands for cost-effective, private, or convenient care will likely continue to drive the development and expansion of such services, and as professionals we need to be aware of these trends so that we can continue to insure that legitimate, quality care is provided.

Like all case series, should be interpreted with caution. All four patients were young, well-educated, male, and of high social economic status - characteristics of Internet users in general. This selection bias limits how far we can generalize our conclusions. The patterns of behaviors that we observed (seeking more information, consumerism, and trusting peers) may differ for women, in less educated patients, or in older patients. More people in these other groups will begin to be influenced by the Internet as its use becomes easier and more broad-based. A further bias comes from the fact that all of these cases are were seen at a tertiary referral center. These patient may be atypical in that the complexity of their clinical course or their emotional needs led them to specialized treatment. As all of these cases were patients suffering from anxiety disorders, it is likely that anxiety played a role in the different ways these patients sought help. It is even possible that such patients could be predisposed to using computers to obtain information or to feel that they have access to enough resources to understand their options.

Conclusion

The limitations of this case series call for further study. We need to improve our understanding of different populations and how each will use the new phenomenon of the Internet in how they approach the changing doctor-patient relationship. We need to explore more of the patterns that can develop in different medical, surgical, and mental health settings. The epidemiology of the Internet's impact on health care is under study [5], and this case series suggests that we must learn more about how patients themselves evaluate the information they use to make medical decisions.

The Internet will become a part of daily life, changing in basic ways how people will seek, face, and manage information [9]. As clinicians, we must be aware of the medical information that our patients come across. In this new information age, a part of our role will need to expand beyond the provision of health care to the provision of health care information. As individuals, we will need to help our patients manage health information. We will need to develop our own skills, and push for the incorporation of such training in our clinical training programs. Training programs need to move beyond the simple teaching of technology and computer use, instead emphasizing the issues we must be clinically aware of as technology changes our practice [10].

We also need to push our professional organizations to support us in these efforts. We need to support organizations that encourage the study of medical informatics and the instruction of healthcare providers. There is little effective filtering of information on the Internet [11], and professional organizations need to support the provision of high quality information on the Internet. Such efforts may also extend to helping rate the quality of information or even recommending appropriate methods for legal regulation as society struggles to better manage the implications of these new levels of information exchange [12]. We physicians must continue to explore, discuss and develop ideas as we make our own adjustment to the changing landscape the Internet brings to medical care.


Table 1

Websites pertaining to Anxiety disorders

I. General sites on Anxiety disorders
  1. Sites organized by non-profit or government organizations
    National Institutes of Mental Health - http://www.nimh.nih.gov/publicat/anxiety.htm*
    The Anxiety Disorders Association of America - http://www.adaa.org
    The National Anxiety Foundation - http://www.lexington-on-line.com/naf.html
  2. Sites organized by patients
    The Anxiety-Panic Internet Resource - http://www.algy.com/anxiety/anx.html*
  3. Sites organized by commercial organizations
    The mining company http://panicdisorder.miningco.com*
    HealthGuide - http://www.healthguide.com*
    Smith-Klein Beecham's Paxil Panic Page - http://www.panicattack.com*
    Bristol-Myers Squibb's Anxiety Relief Center - http://www.anxiety-relief.com
    Cognitive Therapy Center of Brooklyn - http://www.cognitivetherapy.com*
II. Sites on Panic Disorder
  1. Sites organized by non-profit or government organizations
    Panic Disorder - gopher://gopher.gsa.gov/00/staff/pa/cic/health/panic*
    NIMH, Panic disorder - http://www.nimh.nih.gov/anxiety/anxiety/panic/index.htm
  2. Sites organized by patients
    The Anxiety-Panic Internet Resource - http://www.algy.com/anxiety/anx.html*
  3. Sites organized by commercial organizations
    Smith-Klein Beecham's Paxil Panic Page - http://www.panicattack.com*
III. Sites on Obsessive Compulsive Disorder
  1. Sites organized by non-profit or government organizations
    National Institutes of Mental Health OCD - http://www.nimh.nih.gov/anxiety/anxiety/ocd/index.htm
    The OCD foundation - http://www.ocdfoundation.org *º
  2. Sites organized by patients
    Obsessive Compulsive Disorder Resource - http://www.fairlite.com/ocd/
  3. Sites organized by commercial organizations
    Upjohn/Solvay OCD Resource Center - http://www.ocdresource.com/
*The site was used by the patients in our case studies. Inclusion of a site does not imply any type of endorsement of the site or its information.
ºNot functioning at present.
References

[1] Huang MP, Alessi NE: The Internet and the future of psychiatry. Am J Psychiatry 1996; 153:861-869.
[2] Alessi N, Huang M, Quinlan P: 2005: information technology impacts psychiatry, in American Psychiatric Press Review of Psychiatry, Vol 16, edited by Dickstein Lj, Oldham JM, Riba MB. Washington, DC, American Psychiatric Press, Inc., 1997, pp VI 69-87.
[3] Hagland M. Power to the patient. Hospitals & Health Networks. (October 20, 1996); 70:24-6+.
[4] Stolberg SG. Now, prescribing just what the patient ordered: Actively engaged patients. New York Times (Late New York Edition). (August 10, 1997); 3 (sec 4), 1997.
[5] Lowes RL. Here come patients who've "studied" medicine on-line. Medical Economics. (January 27, 1997); 74: 175-80+.
[6] Huang MP, Alessi NE. Challenges of the World Wide Web. Psychiatric Services. In press.
[7] Bower H. Internet sees growth of unverified health claims. BMJ 1996;313:381.
[8] Larkin M. Telemedicine Gets a Chance To Prove Itself. Annals of Internal Medicine. (December 15, 1997); 127(12):1149-1150.
[9] Huang MP, Alessi NE. Developing Trends of the World Wide Web. Psychiatric Services. In press.
[10] Huang MP, Alessi NE. An Informatics Curriculum for Psychiatry. Academic Psychiatry. Accepted 3/97. In press.
[11] Jadad AR, Gagliardi A. Rating Health Information on the Internet: Navigating to Knowledge or Babel? JAMA. (February 25, 1998); 279 (8): 611-614.
[12] Silberg WM, Lundberg GD, Musacchio RA. Assessing, controlling and assuring the quality of medical information on the internet. JAMA (April 16, 1997);277:1244-5.


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