CFS Subject Perceptions About Emergency Department Encounters

[Tom Kindlon]

From the IACFS/ME conference

[Comment: I remember highlighting the request. This is not as interesting as I would have liked but perhaps they will write a full paper which could be more interesting perhaps]

CFS Subject Perceptions About Emergency Department Encounters

Christian R. Timbol, Amber Surian, James N. Baraniuk

Georgetown University, Washington DC

Background:

There is little information about the experiences of CFS subjects who visit Emergency Departments (ED) for acute care of CFS – related symptoms.

Objective: Assess the quality of ED visit experiences by CFS subjects. Methods: This on-line, cross-sectional, anonymous survey was created and disseminated using Google Forms [Rayhan, 2013]. Respondents rated overall ED experiences by ordinal 10-point scale anchored by 0=“completely unsatisfied” and 10=“completely satisfied.” Other inquiries were anchored by 0=“completely disagree” to 10=“completely agree”. Severities of fatigue and 8 ancillary criteria were scored as: 0 (no symptom), 1 (trivial), 2 (mild), 3 (moderate), and 4 (severe). Free text comments were codified to common themes. Respondents were grouped as those who did (EDyes) or did not (EDno) go to ED for treatment of CFS symptoms.

Results:

EDyes were 59% of the 282 responses (87% female). Respondents met CFS criteria with scores of 3.5±0.2 for Fatigue, 3.3±0.5 for Exertional Exhaustion, 3.2±0.4 for Sleep, and 3.0±0.5 for Muscle Pain. The most prevalent symptoms for ED visits were: dizziness/lightheaded (15%), general weakness (12%), diarrhea/constipation (9%), and fatigue (9%). The overall ED impression was 3.6±2.5 demonstrating general dissatisfaction. CFS subjects had an expectation that the ED should be able to treat their symptoms (7.2±3.0), but felt ED personnel were not knowledgeable about CFS (1.9±1.7). When asked, “What would you do if you were better tomorrow?” 85% replied “I have a list of things to do.” “What happens if you walk a long distance?” 92% responded “My symptoms are worse.” “Do you tolerate alcohol?” 52% responded “I avoid alcohol because it makes my symptoms worse” and 24% “I rarely drink alcohol.” EDyes and EDno groups had equivalent responses except for ED visits. EDno respondents stated they did not go to the ED for CFS symptoms because “nothing could or would be done for them.”

Conclusions:

There was poor understanding of CFS by ED staff indicating an opportunity for education, perhaps using documents provided by CFS subjects. Severity Score and Attitude questions may help ED providers identify CFS. Treatment guidelines are required for self-help by CFS subjects and their primary care providers to avoid unnecessary or unproductive ED visits, and to guide ED physicians during visits for acute symptoms.

Christian R. Timbol, MD. Emergency Department Intern, Thomas Jefferson University, Philadelphia, PA. Investigation completed as a Medical Student at Georgetown University (Georgetown University Institutional Review Board #2015-1013). crt32@georgetown.edu NINDS RO1NS085131. No conflicts of interest.

https://twitter.com/i/web/status/796453032238206983

 

[Countrygirl]

As mentioned on another thread, when I was taken into A&E quite recently with chest pain, I was told by the doc not to mention that I had received a diagnosis of ME as I would be treated 'unkindly' by the A&E staff. ME was, he said, a diagnosis given to people who were mentally ill. Meanwhile a local GP told me that they regarded people with the diagnosis with even more 'contempt' than they do people with clinical depression. Mind blowing!

 

[NL93]

I have been on the emergency ward in a hospital with sudden worsening of ME. I couldn't move my legs and was slipping in and out of consciousness one morning. My mother called the GP, he came to see me and called an ambulance even though I said I didn't want to go to hospital because I knew they couldn't do anything anyways. They ran some standard tests, nothing showed up and they send me home.
I wasn't treated very badly but it was very obvious no one understood what was going on with me. It was a frightening experience and i would have rather stayed home to rest. Just the trip to the hospital only made things worse afterwards because it depleted me of energy I didn't have to begin with. There was no treatment of any symptom. They just told me they don't know what ME is and can't treat it yet.

 

[Woolie]

When reading this study, its worth remembering that people in the US (where the study was done) do seem to use ED's differently from people in countries with more centralised health systems. I lived in Pennsylvania for a few years, worked in a hospital, and noticed that a much larger proportion of patients had complaints of a non-urgent nature than you would find in, say the UK, Australia or New Zealand (this might have something to do with subsidies for low income people?)

I mention it because it probably means US EDs need a different and perhaps wider skill set.

 

[IreneF]

When reading this study, its worth remembering that people in the US (where the study was done) do seem to use ED's differently from people in countries with more centralised health systems. I lived in Pennsylvania for a few years, worked in a hospital, and noticed that a much larger proportion of patients had complaints of a non-urgent nature than you would find in, say the UK, Australia or New Zealand (this might have something to do with subsidies for low income people?)

I mention it because it probably means US EDs need a different and perhaps wider skill set.

Two important things about US healthcare: the emergency department cannot turn people away; and people who don't have health insurance use the ED instead of a regular doctor.