Chronic arthritis in children and youth is a rare disease. Joint pain, swelling and contractures can affect children from the first year of life all the way to adulthood. Pain, stiffness and fatigue impact the child’s everyday quality of life and the life of the entire family. The PAVE project aims to generate, synthesize and integrate evidence on the outcomes and socioeconomic burden (SEB) of childhood arthritis to patients, parents and society
- To incorporate outcomes and socioeconomic measures into a patient-informed value-framework for childhood arthritis, based on evidence and co-designed with patients and their families. To leverage existing cohorts of children with JIA from a range of jurisdictions to document the magnitude of the hidden SEB of JIA on children and families
- To enhance the understanding of the disease impact to individuals and society and inform the design of solutions taking into account a broader perspective
- To support resource allocation and policies to better align with the needs of children with JIA, their families and communities
The PAVE project was submitted in response to the EJP RD Joint Transnational Call for proposals 2021 and has been selected for funding. Let’s further discover this project thanks to Prof. Carine H. Wouters and Patient advocate Christophe Normand.
Would you tell us more about the burden of chronic arthritis in children?
Christophe: The burden of chronic arthritis is larger than medication costs and clinic visits. Children are at risk of poor mental health and failing in education with an impact on their future employment and psychosocial quality of life. Families are confronted with long-term care provision to their child, making up for their health needs and educational demands, affecting work-place productivity, quality of life and out-of-pocket costs. The hidden psychosocial and economic burden of arthritis is of major concern.
What is the aim of the PAVE project?
Carine: The PAVE project aims to generate and integrate evidence on the outcomes and socioeconomic burden (SEB) of childhood arthritis to patients, parents and society. Thanks to a transnational multidisciplinary collaboration, we will integrate a set of socioeconomic measures into a comprehensive and patient-informed value framework for childhood arthritis. This novel approach and collaborative partnership will undoubtedly enhance the understanding of the disease impact to individuals and society as a whole and pave the way forward to the design of solutions that account for a broader perspective.
Christophe: The PAVE study wants to measure and decrease the cost and burden (on health and well-being) of childhood arthritis far beyond medications and clinic visits. Together, we aim to improve care for childhood arthritis around the world and – most importantly – the lives of children and families living with rare diseases.
How will this project develop?
Carine: The PAVE consortium is an interdisciplinary multinational collaboration among clinicians, medical, health and social science researchers, and patient advocacy organisations that will work together to produce a value-framework with economic evidence for childhood arthritis.
The PAVE team includes clinical leaders, researchers and representatives of patient organizations from 7 different countries. The PAVE network provides a broad spectrum of socioeconomic, cultural and educational diversity essential for the robustness of outcomes. Each national interdisciplinary team and work package contributes a specific component to the value framework.
The project will bring examine and report the full socio-economic burden (SEB) of childhood arthritis in terms of both its effects on health and well-being (outcomes) and financial impacts for families (costs), bringing together evidence from all participating countries. Specific work packages will validate the standardized data collection tools to measure the SEB in multiple languages, identify unmet needs surrounding uveitis and its complications from a patient’s perspective and assess the mental health aspects of the SEB as well as the effectiveness of a peer-to-peer mentoring support. The project is designed to take 3 years. Finally, physicians and patient representatives will work together to identify and map barriers to health equity across and within countries in EU, Israel and Canada.
So, a multinational collaboration!
Carine: Yes, PAVE is connected to international networks and interdisciplinary partnerships such as EU-funded Europe/Israel SHARE network, EJP-funded perMIDRIAR team, Dutch/Canadian UCAN network, Europe-wide ERN-RITA, PReS, European/Israel/Canadian patient organisations
Our partners will work together to share the lived experience and will be active research partners to ensure the fullest use and integration of their existing patient networks and communications channels.
The team will make use of new (digital) technologies as well as interviews, focusing on the unmet needs, on eHealth tools, on new ways to empower children and families and address the hidden burden of arthritis.
RITA and partners outside of the EU (Switzerland and Israel) provide patient and family diversity that is required for the robustness of our outcomes. Inclusion of sufficient numbers will be assured thanks to strong European networks, both for patient families and physicians (ENCA, ERN-RITA, PReS) and long-standing active collaborations between EU partners, Israel and Canada. Both national and international JIA patient organisations are involved ensuring significant patient experience input. The resulting comprehensive data overview and mapping of patient’s and caregivers’ experiences and environment across EU, Canada and Israel can be used to stimulate discussions to allow every country to effectively pursue equitable access to appropriate care and support for JIA.