Pain rehabilitation of patients with a skeletal dysplasia diagnosis – how to take care of their special needs and use existing programs at the same time 

Project leader

Dr. Ariane Kwiet, MD, PhD

Objectives 

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.  

We also wanted to investigate rehabilitation needs and experiences in adults with rare bone diseases in Norway.

Methods  

Part 1

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.  

Part 2

A digital questionaire will be distributed to adults with rare bone diseases in Norway in august 2024, to investigate rehabilitation needs and experiences.

Results 

The results will be published in reputable, peer-reviewed journals. A simplified summary of the main findings and their significance will be published in Norwegian on TRS's website and in social media, and shared with the interest groups. The findings will also be presented at the associations' member gatherings and at international research conferences. The results can also be disseminated in the Norwegian Centre for rare disorders and presented to the authorities.

Status 08.08.25

• Two groups have completed stays at Unicare Jeløy. The data collection has been completed and analysed. The article is being written.
• The survey was conducted in the summer/autumn of 2024. Analysis and article writing are in progress.

Ethics and funding

Ethical approvals

REK: Prosjekt ID: 603756 
SIKT nr: 887653 

Funding

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.

Time period

1.5.2023 – 1.5.2033 

Conclusion 

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.