Analisi socio-economica di lungo periodo di un paziente con una malattia reumatologica rara (CINCA)

We present the socio-economic consequences of the chronic infantile neurological cutaneous and articular syndrome (CINCA), one of the various forms of the cryopyrin-associated periodic syndrome (CAPS), through the analysis of the 18 years-long story of one patient. We interviewed the patient and his mother and collected clinical documentation to estimate his life-time costs from the perspectives of the healthcare system and society. Total societal and healthcare costs amount to €178,394 and €137,272, respectively. For about 12 years the patient was not correctly diagnosed; health care costs in this period amounted to €81,280, mainly due to hospital care. After the disease was diagnosed, the pattern of costs dramatically changed with a sharp reduction of hospital costs and an increase of costs for medical therapy. This socioeconomic case-study illustrates the categories of costs that may be associated to patients with rare diseases and suggests that prompter diagnosis and adequate therapies may be also beneficial from a socio-economic perspective.