DePaul: Educational Priorities for Healthcare Providers and Name Suggestions for CFS

[mango]

Educational Priorities for Healthcare Providers and Name Suggestions for Chronic Fatigue Syndrome: Including the Patient Voice

Laura Nicholson*, Abigail Brown, Leonard A Jason, Diana Ohanian, and Kelly O’Connor

Center for Community Research, DePaul University, Chicago, USA

Abstract
Surveys over the past two decades found that patients, advocates, and researchers want the name chronic fatigue syndrome (CFS) to be changed because this label minimizes the severity of the illness (Taylor, Friedberg, & Jason, 2001).

The present study sought to qualitatively investigate patient views on the illness label CFS and healthcare providers’ knowledge of CFS.

A patient-research organization asked members two open-ended questions regarding preferences for specific illness labels and educational suggestions for healthcare providers. Responses to both questions were coded thematically by multiple, trained research assistants.

Findings suggested that 96% of participants disliked/strongly disliked CFS. Myalgic encephalomyelitis (ME) was the majority’s first preference (55%) and was chosen four times more than any other name given.

Four themes emerged for educational concerns: attitudes of healthcare providers, symptomatology, research, and implications of inadequate education. The most frequent subtheme (37%) was patients wanting healthcare providers to acknowledge that this is a real/serious illness.

Diagnostic labels can influence providers’ perceptions of diseases and affect quality of care and communication between providers and patients. Therefore patients should be stakeholders in the process of name change. Understanding patient perspectives on educational priorities and illness labels will facilitate improved communication between providers and patients.

Keywords: ME; CFS; ME/CFS; Diagnostic label; Patient perspectives; Physician attitudes

https://www.sciforschenonline.org/j...arch/article-data/CLROA-2-112/CLROA-2-112.pdf

 

[barbc56]

Yes!

My rheumatologist when I lived in Chicago also did medical research at DePaul. Fifty percent for each.

It's an excellent institution.

ETA I forgot. He was not the one who originally diagnosed me. I only saw him twice before my insurance providers changed. I edited the above to reflect this.

 

[Dolphin]

I just read this. As papers go, it is fairly easy to read. The only statistics used that I recall are percentages. It's not heavy on psychological jargon. And of course it's not a paper on natural science so you don't need knowledge in that area.

 

[Dolphin]

With regard to the percentages, the survey involved open-ended questions so people might not have mentioned things would still think they are important:

IOM Committee – Cognitive, Sleep, and Diagnostic Issues Patient Survey was developed to inform a 2015 IOM Committee on patients’ opinions on two open ended questions: “In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS? What are your thoughts on the current terminology used to describe this disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? If you could suggest new terminology, what would you suggest and why?” [19].