Self-Diagnosis: A Discursive Systematic Review of the Medical Literature

 

 

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Abstract

Summary:
Objective: To evaluate the beliefs about, and discursive construction of, self-diagnosis from a medical perspective.
Design: Thematic review.
Data sources: Articles from clinical journals in the PubMed database discussing self-diagnosis.
Results: Thirty-nine articles were included in this study. Of those, 31% (n=12) found self-diagnosis to be reliable and desirable; 23% (n=9) found it to be unreliable, yet to be sought after, and 28% (n=11) found it neither reliable, nor desirable. The remainder of the sample (n=6) had mixed views, including two articles which despite finding self-diagnosis to be reliable, refuted nonetheless its desirability.
Conclusions: The predictive value of self-diagnosis is not the only factor in that medical researchers consider when determining its desirability. Self-diagnosis presents complex challenges to both the doctor and the patient, as it simultaneously threatens medical authority, and strengthens the potential for self-care, compliance and convenience.
Keywords: Self-diagnosis; sociology of diagnosis; self-care.
Citation: Jutel A. Self-diagnosis: a discursive systematic review of the medical literature. J Participat Med. 2010 Sep 15; 2:e8.
Published: September 15, 2010
Competing Interests: The author has declared that no competing interests exist.

Introduction

Hippocrates wrote that, “…if [the doctor] is able to tell his patients when he visits them not only about their past and present symptoms, but also to tell them what is going to happen, as well as to fill in the details they have omitted, he will increase his reputation as a medical practitioner and people will have no qualms in putting themselves under his care.[1 (p170)]” His words underline the important role of diagnosis in confirming the professional status of the doctor and in framing the doctor-patient relationship. Diagnosis is at its heart: providing a rationale for the consultation, confirming the authority and prestige of the medical profession, delegating the responsibility for labelling an illness, and in our contemporary era, providing access to a range of resources. The diagnosis is generally a prerequisite for treatment, an imperative for reimbursement, an authorization to deviate from expected behaviors, in sum, a legitimating force.

Yet, there have been recent assaults on the diagnostic role of medicine. These come from all angles. The lay social movements advocate for diagnosis and recognition of conditions often refuted by the medical institution.[2] Avid commercial forces have been eager to tap the modern patient’s increased access to previously privileged medical information, seeing in self-diagnosis an excellent avenue by which to promote particular conditions (and by extension their concordant therapies).[3]

Being unwilling to be diagnosed by a doctor is not a new phenomenon, for, just as Hippocrates described the importance of the medical diagnosis, so too did he describe the unruly patient reluctant to submit to medical care. He questioned their resolve, “Although they have no wish to die, they have not the courage to be patient…” He wrote, “Is it not more likely that they will disobey their doctors rather than that the doctors…will prescribe the wrong remedies?[1 (p142)]” He emphasized the knowledge gap between lay person and doctor: “…the symptoms which patients with internal diseases describe to their physicians are based on guesses about a possible cause rather than knowledge about it. If they knew what caused their sickness, they would know how to prevent it.[1 (p145)]”

And, today, lay people do know more about what causes their illness. Clinical decision-making has changed its locus, according to Nettleton.[4] The lay person who consults the health care professional is no longer the submissive and compliant “patient,” rather, an expert partner who brings his or her experience of illness to the differentially specialized medical practitioner. Medical knowledge has escaped (e-scaped), flowing as information through myriad electronic networks and Internet sources, enabling patients to access and interpret information about disease well in advance of their encounter with the doctor. Access to formal medical information is no longer confined within or controlled by medical institutions. Data from the Health Information National Trends survey in the US confirmed that only 10.9% of US adults go to their physicians first for health information, with almost 50% (48.6%) using Internet resources as their first port of call.[5]

Medicine itself has recognized that self-diagnosis may be in the public interest. For example, the current influenza pandemic management relies upon people deciding for themselves that they have the flu, then staying away from the doctor, and, in the absence of risk factors or complications, waiting out their infection.[6] This direct delegation of the medical authority to diagnose is of sociological interest. It is not the legitimacy of this delegation that is in question, or the failure to accept self-diagnosis for other afflictions. It is, rather, of interest to explore how medicine accommodates this reassignment of its previous role-defining task of diagnosis.

In order to understand this process, I have undertaken a review of a sample of medical publications which discuss self-diagnosis in order to determine the contexts in which diagnosis by the lay person is discussed, and the elements which influence medicine’s support or alternatively, its opposition to the phenomenon.

Methods

This study is what I call a discursive systematic review. Following the conventional methods of the systematic review to establish a sample, I focused on the discursive presentation of self-diagnosis by the authors of the studies thus located. The interest of my work is not on the appraisal of their findings, rather on the positions they defended, for this provides insight into beliefs and rationalizations for enunciated arguments about self-diagnosis, the focus of this paper.

I therefore searched the PubMed database core clinical journals with date or language restriction using the search terms: (((self-diagnosis)) OR ((“self diagnostic”))) OR ((“self diagnosis”)) OR ((“lay diagnosis”)) OR ((lay-diagnos*)) OR ((self-diagnos*)) OR ((self-diagnostic)), and restricting the terms to text or abstract. I chose to restrict the terms to core clinical journals in order to focus on the medical approach/attitude. It was also a way of restricting the sample to a manageable size. I did a hand search of the articles cited in these studies for other relevant work.

Once I had identified the body of articles, I read each one and determined its suitability to the study. Those that did not discuss self-diagnosis, despite including the word in their abstract, were discarded. Similarly, those that referred to self-diagnosis of symptoms, rather than of diseases, were also excluded. This was because the focus of my concern is on diagnostic as opposed to symptom classification. And finally, after reading the articles, it was clear that the term “lay diagnosis” (and its derivatives) could refer to folk, or non-medical, diagnoses. I excluded the articles which referred to lay diagnosis in this manner, because the interest of the present study is to consider how the medical literature represented the delegation of its own diagnostic role rather than alternative classificatory systems. I was therefore only concerned with self-diagnosis of recognized medical diagnoses. I did not restrict by language, but did not uncover any non-English articles.

I included all articles recovered by this search and classified them according to the type of article (review, empirical research, perspective/opinion pieces), and then read them to get a sense of common themes or assumptions. I then re-read the articles and classified them according to the themes I had identified. The section below summarizes my findings.

Results

This search process described above resulted in the collection of 51 articles, one of which proved impossible to obtain, and 12 of which were excluded because they did not meet the inclusion criteria. Table 1 summarizes the excluded articles. The remaining 38 articles form the basis of this review.

This body of literature included a range of different types of articles. Seventeen of these were empirical studies testing self-diagnosis in comparison to gold-standard diagnostic tools, generally laboratory tests. Eight were review articles, either in the form of Continuing Medical Education modules, position papers, or general reviews of often-debated diagnoses. The remainder included case studies (n=6), letters or opinions (n=5), and a small collection (n=2) of case reports of self-diagnosis by the physicians writing the reports of obscure or unusual conditions.

The documents covered a range of positions which can be summarized according to the reliability and desirability of self-diagnosis. Self-diagnosis could be reliable or not reliable, desirable or not desirable. When I speak of “reliability” I am not restricting myself to its epidemiological meaning, rather, I am referring to the writers’ belief in the accuracy of self-diagnosis in the situation to which they refer.

Table 1. Excluded Articles


Table 2. Positions Vis-à-Vis Self-Diagnosis

Self-Diagnosis Reliable and Desirable

Thirty-one percent of the articles in this review (n=12) saw self-diagnosis as making a positive contribution to individual care or to medicine. The range of conditions in which self-diagnosis was desirable included the common cold,[7] acute uncomplicated urinary tract infections (UTIs),[8][9] vaginal yeast infections,[10] dyspepsia,[11] and melasma.[12] A number of case studies also celebrated instances where individuals had presented an unusual or rare, but correct diagnosis to their doctors such as human scrotal myiasis, jellyfish sting, and toxic shock syndrome.[13][14][15]

The bulk of these publications identified self-diagnosis as contributing potentially to improved patient convenience and more effective therapy. Early self-identification of UTI could both reduce antimicrobial use and improve patient comfort, writes Gupta and colleagues,[9] just as self-measurement of vaginal pH could reduce the inappropriate use of over-the-counter (OTC) antifungal preparations.[10] Larner[16] underlines that accurate self-diagnosis of cluster headaches will permit earlier access to appropriate treatment and improved outcomes. Heartburn and dyspepsia can be self-diagnosed to good effect, according to Hunt,[11] enabling treatment with OTC H2 receptor antagonists. This he argues, will offer greater comfort, and will engage patients to take more control over the management of their condition.

Finally, the self-diagnosis of altitude-related illnesses is presented as an important priority. Problems often occur when there is neither a qualified, nor knowledgeable clinician available. Bezruchka’s article addresses how a travel physician can best prepare his or her clients for exposure to the high-altitude setting.[17]

Self-Diagnosis Not Reliable but Desirable

A range of other publications lament conditions that the authors believe would benefit from self-diagnosis, yet where its efficacy has not yet been demonstrated. Here, 23% (n=9) of the articles held this position. These included conditions frequent in resource-poor areas such as malaria[18][19][20] and schistosoma mansoni infection.[21] More banal conditions such as overweight,[22] vaginal fungal infections,[23] menstrual mood disorders,[24] and children’s chronic medical problems[25] were identified as areas that could benefit from the not yet refined ability of lay people to diagnose their own conditions.

Within this group of publications, positions could be further classified as being framed by one of three underlying thrusts. The first of these three focused on the improvement in outcomes that could be brought to underdeveloped areas if individuals could hasten access to medical care and therapy through effective early recognition by individuals of serious, treatable conditions. As Amexo and colleagues[19] write, rapid diagnosis would benefit the poor and vulnerable significantly, yet the risk of misdiagnosing malaria is not without consequence. Improved diagnostic tools which can be used in the field would be a great advantage in reining in the effects of the illness. A second justification for the need for improved self-diagnostic skills was anchored in a drive to rectify general lay misconceptions about particular conditions (overweight, premenstrual tension, and fungal infections).[22][23][24] And the final thrust was driven by a motivation to reduce burdens on individuals and on the health system. Better diagnosis by parents of chronically ill children, for example, could result in streamlined and more effective treatment,[25] just as better recognition of vaginal thrush would result in optimal outcomes.[26]

Self-Diagnosis Not Reliable and Not Desirable

Eleven of 38 articles (29%), on the other hand, found that self-diagnosis was neither reliable nor desirable. Vaginal yeast infections surface in this category as well,[26][27][28] as does myalgic encephalomyelitis,[29][30] psychiatric conditions,[31][32] and adult attention deficit hyperactivity.[33] Two additional articles looked at systems of patient information and their potential relationship to self-diagnosis under an unfavorable light.[34][35]

Publications in this category expressed concern about the forces leading to self-diagnosis and their control within the medical setting. The example of attitudes towards vaginal yeast infection is telling. In this group, authors expressed concern about the role of direct-to-consumer advertising in self-diagnosis, particularly when they felt that lay people were not reliable in making such diagnoses. The ability of the pharmaceutical industry to sway lay self-assessments in order to increase the use of OTC medication for yeast infection is presented as a concern.[26][27][31]

But, the lay encroachment on medical diagnosis was also cast as an impediment to successful communication between client and doctor.[30] Excessive patient demand[33][36] and polarizing lay publications[29] are described as interfering with clinical diagnostic work.

Other

The remaining articles in this sample did not fit under a well-defined thematic umbrella. These were articles which did not clearly state a position about the desirability of self-diagnosis. A series of letters in the British Medical Journal responding to Scott and colleagues’ discussions of encephalomyelitis, and in support of patients, did not go as far as to suggest that patients should diagnose themselves. In fact these letters were very careful not to spread alarm by stating that they wouldn’t advocate it; however, they clearly underlined that GPs were under-diagnosing and were reluctant to consider the patients’ positions.[37][38][39] One article on vaginal yeast infection found that self-diagnosis was amongst the most effective independent predictors of a positive culture,[40] but did not discuss its role other than to present the empirical findings. Another publication on vaginal yeast infection was contradictory: both supporting and refuting self-diagnosis.[41] It stated on the one hand that, “patients who self-diagnose yeast infections risk missing other etiologies or concurrent infections” and on the other advocated that, “the simplest and most cost-effective regimen involves self-diagnosis and the early initiation of topical therapy.” Two articles on premenstrual syndrome also failed to either support or oppose self-diagnosis, despite acknowledging its frequent use for this particular condition.[42][43]

Discussion

Diagnosis plays an important role in the management of health and disease. It provides an explanatory and didactic frame from which to approach illness. Assigning a diagnosis reveals the range of treatment choices and a sense of what is to come (prognosis). Diagnosis locates the individual case within a collective schema of classification. This removes the individual from the isolation of his or her suffering into the collective position of “what’s wrong with me?” to “having something” that others have had before. Importantly as well, diagnosis serves an administrative role, via which the doctor becomes a gatekeeper; particular diagnoses give access to specific treatments, allowances (sick leave, or preferential parking, for example), insurance reimbursement, and so forth. The ability to diagnose confers power to medicine and its agent, the doctor, as allocator of resources.[44]

Self-diagnosis obviously challenges the authority of medicine, an authority which may already be in decline. Lupton[45] has written of the change in the status of doctors signified by increasing patient complaints, the growing use of alternative therapies, media portrayals of doctors, and lack of financial autonomy. A decline in medical authority is not necessarily a bad thing, even from medicine’s perspective. The notion of self-care and the changing nature of the doctor-patient relationship have been lauded as positive changes in the health system.

Historically, the patient-doctor relationship was characterized by an authoritative, paternalistic doctor managing the care of the submissive patient. The incomplete knowledge of the patient prevented them from participating at anything but a very low level in their treatment and its direction. Writing a half a century ago, Pratt, Seligmann, and Reader[46] lamented this poor understanding and viewed it as a liability: it made patients susceptible to deviate from doctor’s orders. However, the notion of “orders” still positioned the doctor as the ultimate authority in the care of illness. In this paternalistic model of health care, the doctor is the guardian of diagnosis and of patient care, whereas in an contemporary model, concordance rather than compliance is a new ideal.[47] The patient makes choices with medical guidance, but does not hand over his or her care. Beutow and colleagues[48] have referred to a homogolization of the relationship between doctor and patient, wherein there is a rapprochement, or role convergence, enabling a greater participation by the lay person in the clinical encounter.

With respect to patient self-diagnosis, the modern patient clearly would participate in diagnostic decision making, but not necessarily with ease. The ability to assess quality and reliability of health information is not necessarily within the grasp of most lay people, presenting a difficulty on two fronts. On the one hand, any attempt to mediate access to information, or to recapture control of its delivery will infringe upon lay autonomy, returning the patient to the paternalistic care of the omniscient physician. On the other, consuming information without adequate understanding results in individual vulnerability for both patient health and the doctor-patient relationship.

With this in mind, it’s not surprising that the articles in this sample are closely balanced both in favor of, and in opposition to, the principle of self-diagnosis. This reflects the fact that just as self-diagnosis presents potential benefits it can confer harms as well.

The potential harms are manifold. The fact that patients could overlook other morbidities, or have inadequate training to consider differential diagnoses is a prominent theme voiced by authors of publications in this sample. Ferris and colleagues[26] explain that the frequency and severity of misdiagnosis of vulvovaginal candidiasis are concerning. Inaccurate diagnosis can lead to delays in the treatment of more serious disorders.

The example of vulvulovaginal candidiasis provides a useful heuristic. First, there is a clear division amongst the publications I reviewed, as to whether this is a suitable condition for self-diagnosis. Second, it is a common condition. And third, the doctor no longer needs to serve as gatekeeper to treatment in many countries, because antifungal medication for its treatment is readily available without prescription.

The first approval for an OTC anti-fungal was made in the US in 1990. Many other countries followed suit. This approval led to a reduction in prescription costs and physician services,[49] but to an increase in pharmaceutical sales.[23] The switch from prescription to OTC resulted in increased out-of-pocket expenses, and higher consumer costs than when the products were prescribed, as well as possible overuse.[50]

Accompanying the switch to OTC status is the concomitant drive by the pharmaceutical industry to increase lay awareness of the condition, particularly in countries such as the US and New Zealand where direct-to-consumer advertising (DTCA) is legal. Self-screening tools are prevalent in this drive for disease recognition and they frequently appeal to emotional, rather than clinical imperatives. The Monistat® webpage provides an excellent example[51]: “…(t)ry not to get too anxious. We’ll help you figure out what’s happening, why you are feeling the way you are, and most importantly, guide you in the right direction for a treatment that’s right for you.” It provides symptom lists and a “treatment finder” as well as lists of “questions for your doctor.” A nurse practitioner is also available to answer questions submitted by women to the website. Even if a women ends up consulting her own doctor, chances are, according to research on DTCA, that advertising leads to more prescriptions for the advertised medicines regardless of what the doctor thinks about the treatment.[52]

Self-diagnosis is not driven by the pharmaceutical industry alone. Online communities — some funded by the industry, others not — also promote disease awareness. The CFIDS (chronic fatigue and immune dysfunction syndrome) Association of America website, as one example, provides an interactive screening tool to assess the probability of an individual having chronic fatigue syndrome (CFS), albeit emitting the caution, “Only a doctor or qualified health professional can diagnose CFS. This assessment, however, can help you determine whether your symptoms may indicate CFS.[53]”

The contestable nature of such diseases as chronic fatigue helps to explain medical ambivalence, if not resentment, of lay prediagnosis. A number of conditions — some common, others idiosyncratic — are the subject of tension between medical and lay groups. They are accepted neither by doctors, nor by government or insurance companies, yet are experienced by the individual as illness. This uncomfortable clash of perceptions is at the base of what is referred to as contested, or disputed, diseases. These are conditions which medicine does not acknowledge but the laity — be it an individual or a group of individuals with what they believe to be the same condition — considers to be disease.

Dumit[54] describes how conflict is shaped both within and outside of the patient-doctor relationship. Clinicians are directed in their practice by the impositions of the health maintenance organization, the employer, and the insurer; bureaucracy determines who can provide care, and for which ailments. These organizations combined have symbolic domination over the individual patient. But the key point, as Dumit makes clear in this and other papers, is, “the intense interplay between diagnosis and legitimacy: without a diagnosis and other forms of acceptance into the medical system, sufferers are at risk of being denied social recognition of their very suffering and accused of simply faking it.[1 (p578)]”

On the other hand, self-diagnosis appears to be welcome in a certain number of well-defined circumstances. Already, the emphasis on self-care and “concordance” (rather than compliance) seeks to cast the lay person as a decision-maker.[47] Extending the autonomy of the individual beyond care to diagnosis, however, is more unusual. Outside of the vaginitis discussion, self-diagnosis has its most robust supporters in those conditions where medical assistance is not available, is unreliable, or a burden to the public health system.

The extreme examples of malaria and altitude sickness, as captured in this sample, present obvious instances of conditions which are contracted in places where doctors are rarely found. Self-diagnosis becomes an imperative or at least, an aspiration. But, the closer-to-home example of H1N1 influenza virus is perhaps a more pertinent one. While the current pandemic is too recent to feature as a subject of the sociological literature, the identification of individual cases by lay people is a prominent feature of exposure control in public health literature. As mentioned above, self-diagnosis is a cornerstone of pandemic management. It falls under the category of “elimination of potential exposures” which is on the top level in the hierarchy of actions designed to minimize transmission of influenza.[6] By minimizing outpatient visits for those with mild influenza-like illness, the self-diagnosed become self-isolated, reducing concurrently their opportunities to transmit the virus.

While this makes self-diagnosis of influenza highly desirable from the point of view of public health (ie, with self-isolation reducing viral spread), there have been no studies to confirm the accuracy of the individual as diagnostician. The demedicalization of mild influenza presumes that individuals can distinguish between colds, influenza, pneumonia (or other lower respiratory infections), and other systemic illnesses. This may be correct, but it is untested. Researchers recently reported delays in treatment for potentially life-threatening illnesses which resulted from the incorrect diagnosis of influenza.[55] Further, along with self-diagnosis comes self-treatment, and, in many cases, the rush towards oseltamivir (Tamiflu) which has been released in many countries as an OTC medication, creates the same commercial forces and potential conflicts as described above.

What makes this case interesting is that medicine, via public health organizations, has deemed that self-diagnosis is acceptable in this instance, yet vigorously refutes its utility in lay-led, contested conditions where the consequences of misdiagnosis are arguably no more severe (see, for example, Brown[56]). This selective acceptance of self-diagnosis confirms the authoritative role of medicine, even while it enables individuals to decide for themselves what ails them. Freidson[57] wrote that diagnosis was the foundation of medicine’s status. “Where illness is the ubiquitous label for deviance in an age,” he wrote, “the profession that is custodian of the label is ascendant.[1 (p244)]” With respect to influenza infection, medicine remains the custodian, but determines who should be its delegates in the same way as it determines who gets to say which medically unexplained symptom is evidence of physical illness.

Further, self-diagnosis presents challenges to the compliant “patient.” While the contemporary “consumers” of health care may participate in their health care in new and autonomous ways, the authorized self-diagnosis is nonetheless transformative. The author of the present paper, as one example — a highly educated health professional herself — is nonetheless accustomed to presenting to the doctor when she is ill. This is in line with Balint’s assertion that patients “propose” illnesses, but nonetheless expect the physician to provide order and structure to their story of sickness.[58]

The discussion of self-diagnosis and when it is appropriate should be an important priority for medicine. It is, as Goyder and colleagues[59] have written in a recent commentary which was published after the analysis of this sample, both an important trigger for diagnostic hypothesis, and potentially transformative. “Learning when patients can appropriately and safely diagnose and manage common conditions may eventually lead to changes in health services,” they write. Further, one should consider that the distinction between early recognition of symptoms and self-diagnosis may not be particularly clear; encouraging symptom recognition is an important health-preserving aim, regardless of whether, in the end, the self-diagnosis was correct.

If nothing else, this review should demonstrate that there are no clear binaries to guide the incorporation of self-diagnosis into contemporary health management. It is a complex matter, because it is a relational one, tightly bound up in the ways lay people and doctors position themselves and interact relative to one another and relative to particular disease categories.

Limitations

This sample of articles is not necessarily representative of all medical publications, and had an Anglophonic bias; no articles in other languages were identified by this search. This due to the fact that self-diagnosis is not a MESH term, and there is no specific MESH term which points to self-diagnosis. Therefore, non-English articles would have needed to use self-diagnosis as the chosen translation term, which apparently was not the case in this data set.

Further, I have not made an analysis of the thematic positions on the basis of date of publication, nor set any publication date limits for the articles I assessed. It is conceivable that some of the positions are specific to particular eras. As new media, and notably Web resources have become more available to the lay person, it is likely that both frequency of, and attitudes towards self-diagnosis have changed.

Acknowledgments

The author would like to thank Michael Baker for his considered input and suggestions for improving this manuscript prior to publication.

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Copyright: © 2010 Annemarie Jutel. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.

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