Dr. Ariane Kwiet, MD, PhD
In Norway, people with skeletal dysplasia diagnosis can get rehabilitation for different reasons. This could be after fracture, after surgery or because of chronic pain and other impairments. Under these stays, people with a rare diagnosis are together with patients with the same challenges (e.g. chronic pain, post-surgery, and more), but, given the nature of a rare disease, they will rarely meet patients with the same diagnosis. Additionally, the knowledge about skeletal dysplasia diagnosis is low for most of the health care workers in the rehabilitation centers.
The goal with this project is to integrate a group of patients with a skeletal dysplasia diagnosis and chronic pain in an existing pain rehabilitation program and add knowledge from a national resource center. Thus, we can use existing resources and at the same time take care of the special needs from patients with these diagnoses.
This is a feasibility study and a cooperation project between the rehabilitation center Unicare Jeløy and TRS National Resource Center for Rare Diseases, Sunnaas Hospital. Patients with the skeletal dysplasia diagnosis will build a subgroup within a larger group of pain patients (mostly patients with fibromyalgia) and follow mostly the same program. Some of the teaching material will be exchanged and held by experts from the resource center. These experts will also guide the health care workers in treatment sessions and training planning.
We will evaluate this project both qualitatively and quantitatively. Patients and health care workers from the rehabilitation center will be invited to take part in individual respectively focus group interviews. Additionally we will ask patients to fill out PROMIS 79 for mapping pain, physical function, depression, fear, fatigue, sleep disturbance and social participation. Health related quality of life will be surveyed with EQ5D. In addition we will sample statistics about participation in the rehabilitation program for all our participants.
We will show whether it is feasible to integrate a group with patients with chronic pain and having a skeletal dysplasia diagnosis in already existing programs and at the same time take care of the special needs of patients with a rare disease.
REK: Prosjekt ID: 603756
SIKT nr: 887653
The project is funded by TRS, and has also recieved 505.000 Nkr,- in project funds from the National Advisory Unit on Rare Disorders for 2024.
1.5.2023 – 1.5.2033
