22 juni 2021

Consesus statement Osteogenesis Imperfecta

Consensus statement on physical rehabilitation in children and adolescents with osteogenesis imperfecta.

Osteogenesis Imperfecta (OI) is the most common hereditary form of bone fragility in childhood with an estimated incidence of 1:20.000 births. Currently the management is based on medical treatment with anti-resorptive drugs to reduce bone resorption by osteoclasts, in conjunction with surgical treatment to stabilize fractures and to correct deformities. In addition to these treatments, training of muscle function, mobility and self-care is the most important aspect to improve independence and quality of life (QoL) in patients with OI.

Doel

The purpose of this consensus paper is to collect expert knowledge as well as the evidence in the literature regarding physical rehabilitation in children and  adolescents with Osteogenesis imperfecta (OI) in order to develop evidence based recommendations. Due to the difficulties of performing high level clinical trials in the
field of rehabilitation and among patients with rare diseases, these consensus statements are intended as guidelines for the individual therapist and should be adapted to the needs of each patient.

Voor wie

The consensus statements are intended to assist physiotherapists, occupational therapists and other health care professionals to establish treatment goals and develop a treatment plan for individuals with OI.

Diverse experts uit verschillende landen participeerden in het maken van deze concensus. Raoul Engelbert, Bart Bartels en Marleen Schuuring waren de Nederlandse experts.