New study on EDS patients

The purpose of this study was to explore difficulties in daily living of patients with joint hypermobility (e.g. hypermobility syndrome or Ehlers-Danlos syndrome) and to explore the changes in patients’ experiences as a result of using pressure garments. The partner of this study was Physiatry Outpatient Clinic at HUS – The Hospital District of Helsinki and Uusimaa. Data for this study was collected by interviews in Töölö hospital. The patients of this study (n=11) were interviewed two times, before and after the use of pressure garments. The interviews were made by using The Canadian Occupational Performance Measure (COPM). The patients also filled in two questionnaires in both interviews, The Tampa Scale for Kinesiophobia (TSK), which is a questionnaire for assessing pain-related fear (kinesiophobia) and QuickDASH, which measures physical function and symptoms concerning musculoskeletal disorders of the upper limb. Theoretical background of this study were Canadian Model of Occupational Performance and Engagement (CMOP-E), biomechanical framework and International Classification of Functioning, Disability and Health ICF. Difficulties in daily living were analyzed according ICF and statistical analysis about changes was made by using SPSS. Experiences about using pressure garments were analyzed by content analysis method.

The results showed that most of the difficulties of patients’ life in this study were linked to Activities and Participation part on ICF, more closely in self-care, mobility and domestic life. The results showed that using pressure garments had positive effects on controlling position and movement of the body, decreased experiences of pain, and general management. The patients suffer a lot of pain, pain-related fear and have problems using upper arm. By using pressure garments patients’ pain-related fear decrease and they have fewer problems using upper arm. They also have less problems in the Activities and Participation items they pointed out in the first interview as the most important activities they want to be improved. The results lead to the conclusion that patients who suffer from joint hypermobility have many difficulties in their daily living. As a result of using pressure garments they manage better in their daily activities and have fewer limitations because of pain-related fear and fewer problems using upper arm. Finally, can be said that the pressure garments had a positive impact on daily living with patients who suffer from joint hypermobility.The study will be later added to Lymed’s studies section.

Read the study in  its entirety (in Finnish), from this link