Idiopathic Granulomatous Mastitis and challenges in data record: development of a practical form for detailed documentation of clinical findings and disease course

Idiopathic Granulomatous Mastitis (IGM) is a rare chronic breast disease worldwide. Despite its recognition over 50 years ago, the optimal treatment remains uncertain. The clinical signs of IGM are highly variable, with differing breast findings appearing at various stages, and responding inconsistently to treatment. To address this, we conducted a study to develop a comprehensive, user-friendly form for documenting clinical findings in IGM patients. In this multicentric study, two expert groups were formed. One group drafted the proposed form, which the other group then used and reviewed. Revisions occurred over three stages, and three additional breast surgeons evaluated the final form in the fourth stage. The final form was derived from these revised drafts. The final form in English consists of three main pages: the First Visit page, the Next Visits page, and the Treatment Summary page. These pages include breast diagrams for documenting exam findings, locations of intralesional injections, drainage sites and other features. Data such as lesion size, patient’s medical history, accompanying findings, breast pain and cosmesis, laboratory and imaging results, and management plans are recorded. The Treatment Summary page lists medications used for IGM, dates of drainage and intralesional injections. We created a practical, detailed, and easy-to-use form for systematically recording the clinical findings and progression of IGM. This form enhances precise follow up, and facilitates international collaborative research.