Research 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.
Educational Priorities for Healthcare Providers and Name Suggestions for Chronic Fatigue Syndrome: Including the Patient Voice, by Laura Nicholson, Abigail Brown, Leonard A Jason, Diana Ohanian, and Kelly O’Connor in Schiforschen Clinical Research 2:1, 12 Jan 2016
