Awareness of FMF among caregivers

Abstract

Aim: Familial Mediterranean Fever (FMF) is one of the most frequent genetic diseases with a frequency of 1/1,000 in our country. We aimed to assess awareness of FMF among caregivers of patients with and without FMF. Materials and Methods: Caregivers of FMF patients (group 1) and other caregivers who were in hospital for other reasons (group 2) were given a questionnaire regarding FMF and the results were compared between the 2 groups. Results: The mean ages were similar between group 1 (n=142) and group 2 (n=207). Female gender and lower educational status were more frequent in group 1. Group 1 was more aware that recurrent fever, joint pain, abdominal pain, and its occurrence in attacks are seen in FMF; and also that the disease is inherited rather than contagious; that a specific treatment exists; that the risk of kidney and heart failure increases when not treated; that attacks are triggered by sleeplessness, tiredness or emotional stress; that colchicine does not provide complete recovery; and that diarrhea is the most common side effect of colchicine (p<0.05). However, awareness about chest pain as a feature, infertility as a complication, non-adherence as a trigger for the disease and the statement that “patients feel healthy between attacks” were similar (p>0.05). Interestingly, group 2 was more aware that different treatment options exist (p=0.04). The total score was higher in group 1 and in participants who only graduated from secondary school or less (p<0.01). Conclusion: Being a caregiver of a patient was associated with a higher level of awareness of FMF regardless of education level, however, they still need to be informed about current developments.