Living with Tumour necrosis factor receptor-associated periodic fever syndrome (TRAPS)

Results Most patients were female (n=13) and had a family history of TRAPS (n=9). Physical functioning was greatly impaired during an attack with most common symptoms including fever, abdominal pain, joint pain, rash, vomiting and diarrhoea. Fever was the most prominent symptom in children and muscle and joint pain in adults. Paediatric patients reported missing school due to attacks or attending medical appointments were common. Adults frequently missed work for similar reasons, resulting in anxiety over work due to frequent absences. Damage to education or career had a negative financial impact as did travelling long distances to medical appointments. Social activities were also restricted, creating a sense of isolation, embarrassment and uncertainty. Delay in diagnosis was frequently reported with time to diagnosis greater than five years in more than 50% of patients. Steroids are typically the first treatment, while providing temporary relief may lead to uncertainly of long-term side effects, Biologics, typically IL-1 or TNF-alphas, are initiated subsequently and majority of patients reported a decrease in severity and frequency of attacks. Common concerns include, injection site reactions, increased susceptibility to infection, and maintenance of efficacy. Patients expressed interest in alternative administration and storage conditions as potential ways to ease the burden of management. Finally, an increase in disease awareness was important, as many patients receive little information about their condition and are often required to do their own research, perhaps due to lack of physician awareness.