- Health experts involved in identifying and making decisions about this disease demonstrate the need for teamwork for optimal comprehensive management of patients.
- 10 million young people worldwide suffer from this disease, a three-dimensional deformity of the spine that has psychological effects and affects quality of life.
The INCLIVA Biomedical Research Institute of the Hospital Clínic de València has hosted the first AIS (Adolescent Idiopathic Scoliosis) Patient Journey Meeting, which brought together for the first time at an international level, representatives and experts from the entire healthcare vertical involved in identifying and making decisions on the management of EIA within public and private healthcare systems.
The meeting, organised by EpiDisease S.L. on the 9th December, provided a forum for discussion on the identification and management of AIS, with contributions from paediatric primary care physicians, physiotherapists, experts in orthopaedics, rehabilitation and physical medicine, experts in paediatric spinal surgery, experts in AIS psychology, school Headmasters, and representatives of the Spanish patient association ADECYL.
About 10 million young people worldwide (3% of this age group), mostly young girls, suffer from AIS. AIS is a three-dimensional deformity of the spine with an unclear cause, although it is recognised that genetic, growth, neuromuscular, metabolic, hormonal and environmental factors are involved. In the most severe cases, respiratory function and quality of life deteriorate significantly, requiring exercise-based treatment, orthopaedic appliances (braces) or surgery. In addition, body image distortion is often difficult for adolescents to manage psychologically.
Although there have been significant advances in corrective surgical techniques applied to AIS over the past 50 years to improve patient outcomes, the development of clinical biomarkers has lagged behind, and clinicians have been forced to rely on digital radiographs to capture images of the spine to allow them to monitor retrospectively the progression of the spinal deformation over time. However, the accumulation of ionising radiation dosage due to the repeated exposure to X rays for radiograph capture required during the life time of the patient has become an area of concern for this vulnerable group of adolescents, and several studies have shown an increased risk of cancer in adulthood in AIS patients.
The long period of evolution, and possible progression of an AIS spine requires the coordination of the efforts of multiple different clinical disciplines throughout the life of an AIS patient to ensure the best possible treatment. Dr. Irene Mialdea, a Primary Care paediatrician, highlighted the importance of bringing together at this meeting “different professionals with something in common: their interest in improving the quality of life of people with scoliosis”, which shows that “comprehensive management of patients is possible by working as a team”.
Dr. Teresa Bas, clinical head of the Adult and Child Spine Unit reference unit at La Fe Polytechnical University Hospital, and current President of GEER (the Spanish Spine Society) stressed “the collaboration of multiple teams is essential, as they all add up synergistically in the clinical management of scoliosis” and that “all the professionals involved in the evaluation of the patient are essential to be able to provide AIS patients with the best possible treatment”.
Dr. José Luis García-Giménez, coordinator of INCLIVA’s Epigenomics and Translational Epigenetics Research Group and CEO of EpiDisease S.L. concluded at the end of the meeting “this type of meeting is essential to gain a closer understanding of the stages the patient goes through and, in this way, identify the limitations and problems encountered by healthcare professionals. In this way, high added-value solutions can be provided to improve the clinical management of patients in a personalised way”.
For this reason, he thanked “all attendees for their participation, encouragement and interest in the meeting, which has allowed us to achieve the ambitious goal of having a holistic view of the patient journey”.
From the point of view of non-surgical AIS patient management, Dr. Judith Sanchez, a specialist in rehabilitation and physical medicine at Vall d’Hebron Hospital in Barcelona, pointed out “the addition of early screening interventions, both in schools and in paediatric check-ups, could facilitate access to the appropriate channels for the specialised care that our children need, from the rehabilitation specialist, physiotherapist, and spinal surgeon”.
The representatives of the Spanish Scoliosis Association of Castilla y León (ADECYL) considered that the meeting had been “very productive”, as the aim of this organisation is to “address scoliosis in a multidisciplinary way, providing value from the social and health spheres”. “The support provided at this meeting is very interesting for our continued work, as, being the only association in Spain, we are a little lonely accompanying the patient,” they added.
Elisabetta d’Agata, a specialist in the psychology of adolescents and adults with AIS shared her experience with the attendees during the meeting. “There is still a lot to do, to help, to work on. Caring for adolescents from an emotional perspective can prevent a reduction in their quality of life as adults. To be effective in this area we have to work in a multidisciplinary way [continue to] develop skills as a professional, and become the best instrument for detecting risk factors in our patients,” he said.
Dr García-Giménez underlined that at the meeting “the concern of both patients and their relatives about the uncertainties associated with the progression of the disease was clear”. “Indeed, with current tools it is not possible to predict in many cases of AIS how the spinal deformity will evolve, and whether conservative treatment based on bracing will be effective or not. All this contributes to the fact that it is not possible to address the clinical management of the patient in an optimal way,” he explained.
He also added, as another key conclusion of the meeting, that “new technologies that allow precise and personalised progress in the early diagnosis and prognosis of the patient will substantially improve the patient’s pathway during the disease, as well as the clinical management protocols for Idiopathic Scoliosis”.
About EpiDisease S.L.
EpiDisease S.L. was founded in 2013 as a spin-off of INCLIVA, the CIBER of the Carlos III Health Institute and the University of Valencia (Spain), with the aim of transferring knowledge in the field of epigenetics and biomedical sciences to the service of society.
Currently, EpiDisease S.L. is developing a portfolio of clinical tools for the diagnosis, prognosis and management of AIS that help healthcare professionals to make evidence-based decisions based on individual genetic and epigenetic biomarkers.