Abstract
We studied how websites address the consequences of leaving common musculoskeletal conditions untreated, two that have a benign, self-limiting course without treatment (de Quervain tendinopathy, lateral epicondylitis) and one that is expected to have progressive nerve deterioration without treatment (carpal tunnel syndrome). Using a common search engine, the first 120 websites addressing each diagnosis were rated for statements regarding disease progression and need for surgery without treatment. Most sites stated that disease would worsen without treatment: carpal tunnel syndrome (99%), lateral epicondylitis (91%), and de Quervain tendinopathy (72%). For each condition, approximately a third of the websites stated surgery might become necessary. The observation of inadequate distinction between conditions that deteriorate with treatment from those that resolve without treatment emphasizes the potential for harm by reinforcing common misconceptions such as “this is taking too long” or “this will not resolve without treatment” and by jeopardizing personal health agency. Producers of online medical information can add an item to their quality checklist that ensures that people are accurately informed about a choice to not seek treatment.
Keywords
Introduction
Studies of people not seeking care suggest that sensations from diseases of senescence (age-related deterioration of cells and tissues), old injuries, and everyday aches and pains are common and largely accommodated.1-3 People seek care when a sensation becomes a concern (a symptom). 4 Many concerns are based on unhelpful thoughts (distorted thoughts or misinterpretations) such as worst-case thinking, fear of painful movement, or negative pain thoughts. 5 Some of the most prominent unhelpful thoughts are those included in the negative pain thoughts questionnaire, such as “this is taking too long to heal, there must be something seriously wrong” and “my problem will only get worse, and it will ruin my life.” 5
An analysis of patient handouts from electronic medical records and professional society websites found frequent reinforcement of this type of unhelpful thinking.6,7 Analysis of YouTube videos about carpal tunnel syndrome found the same.8,9 This is problematic, because unhelpful thoughts about sensations have a notable association with greater symptom intensity and greater magnitude of incapability.5,10-13 Reinforcement of unhelpful thinking can harm health.
Enthesopathies and tunnel tendinopathies can be self-limited, meaning they resolve without treatment.14,15 The most common musculoskeletal symptoms are from age-related pathophisiology (senescence) such as thumb arthritis, 16 knee arthritis, 1 and rotator cuff tendinopathy, 17 which, based on population studies, are often accommodated and not brought to medical attention.1-3 Even though many conditions resolve over time or are accommodated, patient-facing medical information—media of standalone medical information intended for patient consumption—might emphasize more worrisome possibilities for pathophysiology that is not treated. This information has the potential to reinforce common unhelpful thoughts regarding sensations, increase distress regarding sensations, and transform everyday aches and pains into medical problems needing care (referred to as medicalization), which can reduce personal health agency, self-efficacy, and other healthful attitudes and behaviors.
We reviewed websites addressing three common conditions treated by musculoskeletal specialists: one, carpal tunnel syndrome, that is a problem of progressive nerve damage without surgery; 18 and two, de Quervain tendinopathy and lateral epicondylitis that are benign, self-limited conditions (meaning they resolve without treatment) with no disease-modifying treatment (meaning no treatment that can alter the natural course of the pathophysiology).14,15 We were interested in whether or not online information addressed the consequences of no treatment differently for these classes of conditions. We asked: Are there differences in factors associated with mentioning that the condition will “persist/worsen,” “recommend surgery when severe,” or “may need surgery”?
Methods
Study Design and Setting
We used publicly available data. We searched on one search engine, Google, as it is the most used search engine in the world and comprises approximately 90% of searches worldwide. We identified websites that addressed three conditions: de Quervain tendinopathy, carpal tunnel syndrome, and tennis elbow (also known as lateral epicondylitis). We were not interested in what patients would be likely to find if they used layperson search terms. We were specifically interested in how sites that address these pathophysiologies address non-treatment.
For each condition, we entered “What happens if __ goes untreated?” in private mode and analyzed URLs in rank order that fit the following inclusion criteria. The site addresses one of the three diagnoses and the site includes a description of what happens if the condition is not treated. We excluded duplicates and inaccessible websites. We studied 120 sites per diagnosis.
Description of Experiment and Variables
We recorded the source (private, academic, government, other). Sources were characterized as private if it was associated with a private practice or business, academic if it was associated with a public or private academic institution, government if it was associated with a system of political government, and other if it did not fall into one of these categories.
We recorded the website author's profession (musculoskeletal physician, musculoskeletal physician, or non-physician). Musculoskeletal physicians were orthopedic surgeons or sports medicine physicians. Examples of non-physician authors include chiropractors, physical therapists, and lawyers.
Three observers independently rated each website. Statements indicating the following consequences of going untreated were recorded as present or absent: 1) The condition will persist or worsen, 2) Surgery may be recommended when the condition is severe, and 3) Surgery may become necessary. The raters were three undergraduate students in health-related fields. Raters were trained by the principal investigator, an orthopedic surgeon who is an expert in cognitive error and unhelpful thinking in musculoskeletal medicine. Training was completed after 5-10 ratings, when a clear and uniform understanding was verified for all three raters. The interobserver agreement of the three raters was substantial (Kappa of 0.68-0.90 for all ratings).
Statistical Analysis and Study Size
We reviewed 120 websites per condition. This was a practical number based on the number of websites that come up in the search and the number that would provide both statistical power to test for important associations with a medium effect size as well as representativeness of available websites. We used chi-squared to analyze differences in source and writer profession associated with “Persist or worsen,” “Recommended surgery when severe,” or “Surgery may be necessary.” Variables with a P-value below 0.05 were considered statistically significant.
Results
The sources of the websites studied were 2.9% government, 5.9% academic, 17% other, and 75% private (Table 1). For all three diagnoses, private sources accounted for 70% of the websites for de Quervain tendinopathy, 92% of the websites for carpal tunnel, and 61% of the websites for lateral epicondylitis (Table 1). The profession of the website creators was 28% musculoskeletal physician, 39% non-musculoskeletal physician, and 33% non-physician (Table 1).
Frequency of Website Source and Profession.
Persist or Worsen
Most sites (88%; 297 of 339) stated that disease would worsen without treatment. There were statistically significant differences by diagnosis: carpal tunnel syndrome (99%), lateral epicondylitis (91%), and de Quervain tendinopathy (72%). There were no significant differences by source or profession (Table 2).
Variation in Statements About Leaving Conditions Untreated by Source and Authorship.
Bolded percentages indicate groups with statistically significant differences measured with Fisher Exact Test or Chi-Squared.
Surgery Recommended When Severe
Half the websites (51%; 173 of 339) stated that surgery would be recommended for severe disease. Non-physician websites addressing carpal tunnel syndrome—the one diagnosis for which surgery is disease-modifying and can prevent progressive nerve damage—were less likely to state that surgery would be recommended for severe disease (Table 2). Private sources were more likely to state that surgery would recommended for severe lateral epicondylitis than academic and government sources (Table 2).
Surgery can Become Necessary
One third of all sites (111 of 339) stated that surgery may be necessary if the condition is not treated. Non-physician websites addressing carpal tunnel syndrome—the one diagnosis for which surgery is disease-modifying and can prevent progressive nerve damage—were less likely to recommended for surgery (Table 2).
Discussion
Given the association of unhelpful thinking with greater symptom intensity, patient-facing medical information that reinforces unhelpful thinking has the potential to harm health. Visits, tests, and treatments are optional (discretionary) for many if not most musculoskeletal conditions. Population-based studies identify large subsets of people with musculoskeletal pathophysiologies such as arthritis 1 and rotator cuff tendinopathy2,3 who are not seeking care. Given that there are no disease-modifying treatments, and no limb- or life-threatening consequences to going without care for these conditions, accommodation of symptoms can be considered an effective health strategy. We investigated what websites state regarding leaving a condition untreated. Compressive median neuropathy at the carpal tunnel (the symptom and signs of which are carpal tunnel syndrome) has a likely natural history of loss of important sensibility in the fingers and an available disease-modifying and potentially curative surgery. In contrast, de Quervain tendinopathy and lateral epicondylitis represent nuisance conditions with a natural history of resolution without treatment over time. One would hope that patient-facing medical information would clearly distinguish the consequences of not treating these different types of conditions. We found that for all three conditions, the majority of websites suggested that foregoing care would result in the worsening of the condition and a third noted a potential requirement for surgery. The observation that websites tend to provide misleading information regarding the natural history of disease points to a need for producers and consumers of web material to use checklists to ensure that they accurately consider the option of foregoing treatment.
Limitations
This study can be considered in light of its limitations. First, interpretations of website statements can be subjective. Using three raters, we found the ratings relatively unambiguous with adequate interrater reliability. Second, although we used private browsing modes to identify the default ranked websites, the websites identified may vary by strategy, user information, location, and date of search. Furthermore, we used medical search terms because we were most interested in the information available about these conditions. The reader might wonder if this adequately reflects what a lay person would encounter. Given the large number of websites evaluated and the consistency of our findings, we are confident that lay people would encounter similar information. This study's search can also be considered representative of a person who already knows their diagnosis. Additional variability might be introduced by using different search engines and different features in the user profiles of those searching including zip code. Given the consistency of the findings in a relatively large number of websites, these variations are unlikely to alter the results.
Persist or Worsen
The observation that the majority of internet-based, patient-facing medical information states that lateral epicondylitis and de Quervain tendinopathy are likely to persist or worsen without treatment—as likely as carpal tunnel syndrome—points to notable potential misinformation about the natural history of these diseases. While carpal tunnel syndrome will likely progress to cause nerve damage without surgery, there is strong evidence that enthesopathy of the extensor carpi radialis brevis (lateral epicondylitis) is self-limiting, 15 and some evidence that de Quervain tendinopathy is self-limiting as well.14,19 These conditions don't get worse with time, they resolve with time. The suggestion that lateral epicondylitis and de Quervain tendinopathy get worse or persist without treatment is both inaccurate and also directly reinforces common misconceptions that are associated with greater discomfort and incapability, such as “this is taking too long” or “until I find the right treatment I will always have this problem.” In other words, what is intended as helpful information and guidance can directly harm health. Studies demonstrate that the use of words, concepts, and metaphors that align with unhealthy thoughts can be validating to patients,20,21 which might account for their persistence, even as evidence mounts that these concepts are both inaccurate and unhealthy. An alternative approach would be to validate a person's experience while gently reorienting common misconceptions.
Surgery Recommended When Severe
The observation that about half the websites stated that surgery would be recommended if the condition became “severe” for all three diseases, again misrepresents the benign natural history of de Quervain tendinopathy and lateral epicondylitis. It may also misrepresent that higher levels of discomfort and incapability correspond with greater pathophysiology severity, which is not accurate. There is good evidence that levels of discomfort and incapability correlate with mindset and circumstances more than the severity of musculoskeletal pathophysiology.10,11 It is therefore misleading and potentially harmful to suggest that a decision regarding discretionary surgery is based on symptom intensity or persistence.
Surgery can Become Necessary
The observation that a third of the websites noted surgery can become necessary, with no differences between carpal tunnel syndrome, de Quervain tendinopathy, and lateral epicondylitis misrepresents the fact that surgery is always optional (discretionary) and for de Quervain tendinopathy and lateral epicondylitis. Omission of advice that carpal tunnel release could become necessary in a lifetime in order to prevent permanent loss of sensibility and palmar abduction strength could harm people if it leads to under-treatment. Carpal tunnel release can be considered less discretionary than a surgery for de Quervain tendinopathy and lateral epicondylitis, conditions that causes pain alone and have known benign and self-limited natural histories. Describing surgery for de Quervain tendinopathy or lateral epicondylitis as potentially necessary is inaccurate and could lead to overtreatment. It can also directly harm health by reinforcing worst-case thinking and negative pain thoughts, both of which increase discomfort and incapability.
Conclusions
The finding that internet-based material has the potential to contribute to over or under-treatment and reinforce unhealthy mindsets by misrepresenting the course of untreated disease. Producers and consumers of web material can use checklists to catch these types of misinformation in order limit harm. Websites should clearly represent when visits, tests, and treatments are optional. Not doing so can be considered self-serving and unethical. The desired outcome is to help people develop a healthy, secure regard for their condition and the associated sensations so that they can make decisions in line with their values and maintain agency and independence in managing their health.
Footnotes
Authors Contributions
Each Author (RS, SG, AP, GS, DR) made substantial contributions to the concept and design of the work; or acquisition, analysis or interpretation of data, drafted the article or revised it critically for important intellectual content, approved the version to be published, and each author participated sufficiently in the work to take public responsibility for appropriate portions of the content.
The authors certify that they have no commercial associations (eg, consultancies, stock ownership, equity interest, patent/licensing arrangements, etc) that might pose a conflict of interest in connection with the submitted article. David Ring (DR), or a member of their immediate family, has or may receive payments or benefits, in any one year, from Skeletal Dynamics for an internal joint stabilizer elbow in the amount of between 10,000 and 100,000 USD per year, that he (DR) is a Deputy Editor for Clinical Orthopaedics and Related Research® and has received or may receive payments or benefits in the amount of USD 5000 per year. One of the authors certifies that he (DR) received honoraria from various universities, professional associations, and continuing medical education vendors.
Authors’ Note
Ethical Review Committee approval was not needed since the used data was found online and publicly available. Informed consent was not needed since the used data was found online and publicly available.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
