Reasons of lost to follow-up and clinical characteristics of Familial Mediterranean fever patients

Abdullah Doğan; Gülsüm Gamze Acemoğlu Aslan; Hacer Doğan; Sedat Yılmaz

doi:10.4274/raed.galenos.2025.91300

Abstract

Objective

Familial Mediterranean fever (FMF), which is common in countries neighbouring the Mediterranean, requires regular follow-up like other chronic inflammatory rheumatological diseases. Deficiencies in the treatment and follow-up of the disease may result in significant morbidity.In this study, we investigated the reasons for non-follow-up of FMF patients and the clinical characteristics of these patients.

Methods

FMF patients who had not attended rheumatology control for more than 1 year were included in this study. Patients were telephoned and asked the reasons of lost to follow-up. Clinical and demographic characteristics of the patients were recorded. Modified Morinsky scale (MMS)-motivation and MMS-knowledge level questionnaires were applied for treatment compliance. Comparison was made between the patients with no follow-up and those with follow-up at an external centre. Comparison of the patient groups with follow-up and those without follow-up was made. P<0.05 was considered statistically significant.

Results

It was learnt that of the 176 patients who could be contacted by phone, 74 (42.1%) patients were followed-up in external centres and 93 patients were lost to follow-up. Most of the patients lost to follow-up were university graduates (48.1%) and high school graduates (31.2%). The most common reasons of lost to follow-up were negligence (28%) and failure to find an appointment (25.8%). The variables of MMS-motivation, MMS-knowledge level and informing patients about the need for follow-up at diagnosis had a significant relationship with non-follow-up (p<0.05).

Conclusion

The fact that “negligence” was found to be the most common reason of lost to follow-up despite the high educational status of FMF patients revealed the importance of informing even educated patients about the necessity of follow-up. This was supported by the fact that the MMS-motivation and MMS-knowledge level scores were low in patients lost to follow-up. In addition, setting the green list registrations as indefinite will reduce patients’ loss of follow-up.

Keywords:

Familial Mediterranean fever, reasons for patients lost to follow-up, characteristics of patients lost to follow-up

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