Exploratory Research on the Social Costs and Care for Patients with Bladder Pain Syndrome
Interstitial Cystitis (IC), recently named Bladder Pain Syndrome (BPS), generally has its onset in adulthood; its symptoms include an intense abdominal pain and a burning sensation due to inflammation. The localization of such intense, frequent pain causes a remarkable discomfort and distress to patients. It is a disabling, difficult-to-diagnose disease; quite commonly, BPS is mistaken for bacterial cystitis or a broad range of disorders of unknown origin, often attributed to psychogenic factors. The severity of symptoms has a remarkable impact on the quality of life. An early diagnosis is essential to prescribe an appropriate, effective therapy avoiding a disease progression with irreversible consequences for the bladder. Patients’ associations give a major, helpful contribution through actions aimed at disseminating an improved knowledge of the disease for an early diagnosis: they promote a growing awareness within the scientific community, the general public, and mass media. Our study aimed at exploring the social costs and healthcare needs of patients with BPS and their families.
KeywordsDisease Management Rare Disease Healthcare Service Social Cost Interstitial Cystitis
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