Producing an Arthritis Value-framework with economic Evidence - Paving the Way for Rare Childhood Diseases

Arthritis in children and youth is a group of rare and ultra-rare diseases. Children of all ages suffer from joint pain, stiffness and swelling slowly destroying they joints and resulting in life-long disability. Pain, decreased mobility and fatigue dramatically impact the child's everyday quality of life and the life of the family. The burden of arthritis is far larger than medication costs. Children miss school days and when at school face lack of proper accommodation. They miss out on sports, play dates and other childhood milestones. Often families face a lack of understanding, since "children don't have arthritis, only elderly people do". The results are often devastating: failed education, a future of low paying jobs or unemployment due to disability, and for many poor mental health. Parents face regular loss of working hours, frequent hospital visits, sometimes resulting in unemployment. Parents become health care providers, have to make up for interrupted schooling providing home tutoring and face their own anxieties, depression and mental health struggles as the child's primary caregiver. Siblings suffer and not infrequently marriages fall apart. There is a dramatic hidden burden of arthritis. The PAVE team is a strong international partnership of 6 countries including clinical leaders, researchers, social scientists and strong engagement with patient organizations. Our team will focus on the unmet needs of children and families and empower them with new ways to address the hidden burden of arthritis. The PAVE team will build a first-of-its kind value framework that will unite the voices of children and families with data-informed calls to action to measure and ultimately reduce the cost and burden of childhood arthritis. Together, we will improve the lives of children living with arthritis, reduce inequities and pave the way for improved lives for people of all ages living with rare diseases. Children with arthritis and their families need a voice.