Cost evaluation of the medical management of neurofibromatosis 1: a prospective study on 201 patients

Neurofibromatosis 1 (NF1) is associated with many internal complications as well as skin manifestations. and patients may require a variety of medical and surgical interventions. we aimed to assess the medical needs of NF1 pa tients, and to evaluate the financial cost of the resources used for them i n relation to the severity of the disease. We conducted a prospective analy sis on a cohort of 201 patients in our referral centre for adults. Severity of the disease was assessed. Therapeutic management was considered as mult idisciplinary if it required more than three different specialists. Plastic and dermatological surgery procedures performed were recorded, Hospital co sts were computed over a 3-year period and included all hospitalization day s, clinic visits and procedures performed in all departments where the pati ents were admitted. One hundred and thirty-seven patients had at least one out-patient procedure or one hospitalization during the follow-up period. T he moan cost per patient per year was pound 810 (median 240; range 0-13,860 ). Multidisciplinary procedures were more frequent in moderately and severe ly affected NF1 patients than in milder cases (P < 0.0001); hence, the cost s for moderate and severe cases were higher than for less severe groups (P = 0.005). Plastic and/or dermatological surgery was performed with the same frequency in the different severity groups (71%). Regardless of the presen ce of serious intractable complications, the patients' priority is for trea tment of the disfigurement due to the disease. The management of these pati ents can be considered relatively inexpensive from the viewpoint of the hea lthcare system.