A Curious Case of Self-Diagnosis
Andrew Love, RN
Aug 01, 2015|AEDR 2015 Vol. 3 Issue 2|Case Study
Clinical call handlers at a contact center in Queensland Health, Australia, use a clinical decision support system (CDSS) called Priority Solutions Integrated Access Management (PSIAM™) (PSIAM version 126.96.36.199, 2012 release, Priority Solutions Inc., Salt Lake City, USA) to provide community members with telephonic triage, referrals, and health information. The contact center operates 24 hours a day, 7 days a week, and all calls are handled by Registered Nurses (RNs). Callers requiring emergency services, usually an ambulance attendance, are transferred to Emergency Medical Dispatchers (EMDs) at the local emergency dispatch center. This accounts for approximately 5-6% of calls. The majority of calls received at the dispatch center are for minor, self-limiting, or low-acuity ailments.
A RN received a call from a 34-year-old male around 6:45am on a Sunday morning. This call had been referred from the caller's local hospital switchboard. The caller initially stated he was suffering from "Morgellons disease" and was requesting information for where he could get help . On further questioning, the caller described that a cotton or nylon type of fibre was protruding from his skin in various areas of his body, including two lower limb superficial wounds. The caller reached the conclusion that he had Morgellons disease based entirely on Google searching.
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The nurse undertook a rapid assessment of the caller's Airway, Breathing, Circulation (ABC), and mental status. This is standard practice for all calls. The individual was orientated to time and place, and sounded normal in speech qualities. Once ABC compromise had been ruled out, the nurse collected a list of active symptoms. Again the caller described foreign body threads as protruding from his skin, and two minor wounds. These symptoms had reportedly been present for three days. No other symptoms were identified.
Past medical history consisted of childhood appendectomy–unlikely to be relevant. The caller denied allergies or taking regular medication, either prescribed or over the counter. He was a daily cigarettes smoker and denied alcohol, street, or recreational drug use. The caller denied similar episodes in the past. He had attempted to treat his condition by adding a quantity of tea tree oil to a warm bath.
The calltaker was unfamiliar with the term Morgellons disease. This knowledge gap resulted in the nurse initially choosing a Wounds protocol (from PSIAM system) to address the callers concerns. At this point, the nurse also performed a Google search for the term Morgellons disease. On reviewing the search results, it became apparent there may be more to the call than a simple contaminated wound. The caller was then placed on hold. Advice was sought from a team leader who had never heard of Morgellons disease or the symptoms either.
Being conscious of having the caller on hold for the least amount of time possible, the nurse decided to choose the Behavior Change protocol. This protocol begins by assessing level of consciousness, followed by any delirium or confusion. The caller was alert and oriented. On direct questioning, he denied anxiety or symptoms of psychosis, such as hallucinations. The protocol then guides the calltaker to inquire about substance or alcohol abuse. At this point the caller admitted to using increasingly large amounts of cannabis over the last few weeks, despite initially denying use of street drugs. The caller was very insistent he was not currently under the influence, and had not used cannabis for approximately 24 hours.
The guiding questions in the Behavior Change protocol resulted in a Recommended Care Level (RCL) of See doctor within the next 12 hours (same day). The nurse had the option to recommend attendance at a hospital or a doctor at the local clinic. The caller was instructed to attend his nearest hospital within 12 hours. Further instructions were given in the event that his current symptoms worsened or new symptoms developed. A RN received a call from a 34-year-old male around 6:45am on a Sunday morning. This call had been referred from the caller's local hospital switchboard. The caller initially stated he was suffering from "Morgellons disease" and was requesting information for where he could get help . On further questioning, the caller described that a cotton or nylon type of fibre was protruding from his skin in various areas of his body, including two lower limb superficial wounds. The caller reached the conclusion that he had Morgellons disease based entirely on Google searching.
This interaction was very different from an average Sunday morning call. There were several aspects worth examining, including a controversial disease, use of Google, protocol selection, and the challenges of assessing mental health symptoms over the telephone.
Morgellons disease is a lay term used to describe primary manifestations involving the skin such as fibres, threads, specks, and fuzzballs. The disease has been surrounded by controversy. Some of the more outlandish claims include Morgellons disease being caused by chemical trails spraying from aircraft or escaped U.S. Army covert biological warfare products.1 The Center for Disease Control and Prevention (CDC) conducted an investigation in 2008 which concluded that Morgellons disease is likely to be delusional parasitosis.2
Throughout the episode, the calltaker was unaware of the significance of the term Morgellons disease. This was freely acknowledged to the caller at the commencement of the call. A search of the term 'Morgellons' using the organization's clinical information portal found no matches. A health professional using Google to research disease characteristics is also controversial. However, on this occasion the calltaker was left with no alternative option. The fourth result in the search was headed "Morgellons Exposed" which summarized: "People who suffer from Morgellons disease are NOT delusional no matter what the CDC or the mainstream press would have you believe." This particular phrase lead the nurse to form the belief that the caller was likely to be suffering from a mental illness.
This call highlighted the challenge of assessing mental status in a nonvisual environment, using only a telephone. Without overt signs, it is possible for a calltaker to miss the subtle mental health symptoms. Even with direct questioning, there is often no way of confirming the veracity of the information supplied by callers. This presents a challenge with poor historians as conflicting information may be provided during a single interaction.
The internet has revolutionized the world in terms of information availability to patients. Advice on every conceivable condition can be located with access to the internet and a simple search engine. Additionally, patients are readily accessing this information prior to visiting their doctors. In 2007, Lanseng and Andreassen found patients are likely to engage in self-diagnosis when given the opportunity.3 On most occasions, self-diagnosis would be considered distracting information. However, in this call, the nurse was assisted by the caller's keenness to research the symptoms he was suffering from.
Protocol selection for little known or unusual symptoms is also challenging. With the benefit of hindsight, the Behavior Change protocol or Miscellaneous protocol might have been considered optional protocols to use in this interesting case presentation. Although initially confused, the nurse used the protocol and limited resources to guide the decision to send this caller to a hospital. However, based on the low-acuity condition presented by the signs and symptoms, an after-business hours medical center may have been a more suitable recommendation. The contact center is a standalone organization and has minimal opportunity to follow-up on callers. It will never be known to the nurse if the caller was suffering from delusional parasitosis or a contaminated wound.
- Albarelli Jr HP, Martell Z. Did the U.S. Army help spread Morgellons and other diseases? http://www.voltairenet.org/article165450.html. Accessed May 26, 2015.
- Pearson ML, Selby JV, Katz KA, Cantrell V, Braden CR, Parise ME, Paddock CD, Lewin-Smith MR, Kalasinsky VF, Goldstein FC, Hightower AW, Papier A, Lewis B, Motipara S, Eberhard ML. Clinical, Epidemiologic, Histopathologic and Molecular Features of an Unexplained Dermopathy. PLoS ONE. 2012;7(1):e29908.
- Even J. Lanseng, Tor W. Andreassen. Electronic healthcare: a study of people's readiness and attitude toward performing self diagnosis. International Journal of Service Industry Management. 2007;18(4):394-417.
Citation: Love A.A Curious Case of Self-Diagnosis. Annals of Emergency Dispatch & Response. 2015;3(2):44-45.