A new study suggests people with fatiguing illnesses including chronic fatigue syndrome experience a number of barriers that prevent them from properly utilizing available healthcare services.
The study was carried out by prominent chronic fatigue syndrome (CFS) researchers at the Centers for Disease Control & Prevention (CDC) in Atlanta, Georgia, USA, including Dr. William Reeves who is head of the CDC's CFS research program. The study is published in the journal BMC Health Services Research.
The researchers note that:
- Approximately 2.5% of adults in the United States may suffer from CFS and almost 4% report symptoms compatible with CFS.
- Most people with CFS identified in population-based studies have been ill for 5 to 7 years.
- They are profoundly functionally impaired; 25% are unemployed or receiving disability because of their illness, and families in which a member suffers CFS forego $20,000 in annual earnings and wages.
- In spite of the burden imposed by CFS on individuals and the population, less than 20% of those with the illness have been diagnosed and received treatment.
A few previous studies had found that CFS patients failed to utilize healthcare services for reasons including their doctor lacking knowledge of CFS, they had been given inappropriate diagnoses, and they felt that minimal benefit would be gained from seeking traditional healthcare. These previous studies had included only small numbers of patients however so the findings could not be applied to the larger CFS community.
In order to determine why individuals with CFS seem so poorly served by the healthcare system the CDC researchers recruited a total of 780 participants with fatiguing illnesses, 112 of whom had a diagnosis of CFS. All study participants were asked to complete a 'healthcare utilization questionnaire'.
Of 112 subjects with CFS, 55% reported at least one barrier to healthcare utilization. The questionnaires revealed that the severity of fatigue, duration of illness, and body/mass index (BMI) were significant risk factors for the presence of barriers to healthcare utilization.
After adjusting for socio-demographics, medication use, the number of health problems, and frequency of healthcare utilization, the CDC team found that the level of fatigue still remained the major factor associated with barriers to healthcare utilization in CFS patients.
It was also revealed that CFS patients were nearly 4 times more likely to forego needed healthcare during the preceding year than healthy individuals.
The questionnaires revealed 3 distinct areas that acted as barriers to healthcare utilization in fatigued patients. These being:
- knowledge-attitudes-beliefs (KABs)
- healthcare system
Study participants with CFS reported high levels of healthcare utilization barriers for each of these areas: accessibility (34%), healthcare system (25%), and KABs (19%).
The results then confirm and build upon those of the earlier small scale studies; showing that poor provision of healthcare services for CFS patients is a major factor in low utilization of those services.
Unfortunately in 2009 after decades of research and patient advocacy it seems that CFS patients still feel marginalized. Participants indicated that their decision not to utilize healthcare services was based on a lack of trust and confidence in healthcare professionals. Amongst the main complaints were: "that doctors may not do enough to find out what is making them sick; they didn't feel better with the treatments offered; they thought that doctors did not believe in the diagnosis of CFS; and they felt dejected by healthcare professionals or that healthcare professionals might minimize their illness."
It wasn't just doctors attitudes that meant those with CFS and fatiguing illnesses missed out on healthcare however; the attitudes of patients themselves also acted as barriers. The study revealed that patients also had a lack of knowledge about CFS so tended to dismiss their illness as simple tiredness or the effects of growing older or self-diagnose themselves with depression or hormone related conditions, for example.
The CDC researchers conclude their paper with a two-fold plan of action to address the barriers to healthcare utilization amongst CFS and fatigued patients; a symptom-targetted model and an interactive model.
They write: "The symptom-targeted model would focus on symptoms associated with fatigue, such as fatigue, sleep, and pain, and encourage people experiencing these symptoms to seek healthcare promptly. Simultaneously it would recommend to healthcare professionals that patients seeking healthcare with these symptoms may need continued monitoring for potential CFS, chronic fatigue or other chronic conditions."
"The interactive model would target patients and healthcare professionals with the goal of improving interactions between these two groups in terms of fatiguing illness. This model would emphasize the accurate diagnosis of underlying diseases thereby decreasing misdiagnosis and increasing CFS diagnosis in order to provide targeted therapy. Furthermore, it would encourage continued dialog between patients and healthcare professionals in terms of illness of management. These goals will be accomplished through education efforts aimed at health care practitioners enabling them to recognize the criteria for CFS diagnosis and management. Intervention for CFS should also address perceived stigma and trust for persons seeking healthcare in the area of CFS. Examples include reducing health professionals barriers by increasing knowledge about CFS, increasing diagnostic self-efficacy and skills, and facilitating understanding of the patients needs to reduce mistrust. This proposed model would also focus on improving individual perceptions of seeking healthcare consultation among persons with fatiguing illnesses with the goal to decrease unconstructive attitudes and beliefs that may act as barriers."
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