Access to healthcare and healthcare utilization in chronic fatiguing illnesses

Background Chronic fatigue syndrome (CFS) affects more than 4 million adults in the U.S. and yet less than 20% of persons with the illness have received a diagnosis. One hypothesis proposes that people with CFS have difficulties in utilizing healthcare due to lack of insurance, inability to find a physician, or inability to seek care due to poor health. Alternatively we asked if having access to healthcare but not utilizing it, also contributed to the issue of healthcare utilization.

Methods A random sample of 10,837 households from the Georgia population was contacted and 75% adults completed interviews. Of these respondents, 4,021 were eligible for a subsequent clinical evaluation and 1,615 were randomly selected for the evaluation. 783 completed the evaluation and were classified into categories: CFS; insufficient fatigue or symptoms (ISF); and well. Participants were also asked if (and how many times) they had consulted with a healthcare professional during the last year on four major symptoms of CFS: fatigue, sleep, cognition, and pain; and other questions including socio-demographics and locus of control. The main outcome measures were consultation uses for each of four symptoms. We used a zero-inflated negative binomial model to analyze the data on 501 participants without exclusionary medical/psychiatric conditions identified in the clinic.

Results Of 501 participants, the majority was female (77%), a mean age of 43.7, white (75%), married (68%), and at least completed high school (96%). Eighty-three percent reported having health insurance and 64% were employed full-time. Race, age, BMI, marital status, housework, and depression status were not statistically significant indicators of consultations. Delay in seeking healthcare, illness onset, income, education, employment, and locus of control were significantly associated with consultation use of at least one of the four outcome symptoms. CFS was associated with consultation uses of all 4 symptoms (p < 0.001) while ISF was only associated with fatigue, sleep, and cognition (p < 0.001). Housework was associated with fatigue (-0.77, 0.39) and sleep (-1.14, 0.59), and delayed healthcare seeking behavior on cognition (-1.21, 0.51).

Conclusions We found that in persons with fatiguing illnesses, access to healthcare (insurance) was only a significant factor in healthcare consultation for sleep and pain symptoms. Utilization of healthcare, however, played a role when seeking healthcare for fatigue symptoms. Importantly race and sex were not factors in healthcare access or utilization. Although CFS is associated with fatigue, symptoms of sleep and cognition also drove healthcare utilization.