Societal participation in ehlers-danlos syndromes and hypermobility spectrum disorder, compared to fibromyalgia and healthy controls.

Ehlers-Danlos syndrome and hypermobility spectrum disorder affect daily life. There is a lack of research that investigates how the disease affects aspects of participation. This study investigates whether there is a difference in the level of participation in society in persons with vascular EDS (N = 18), hypermobile EDS (N = 20), classical EDS (N = 4) and Hypermobility Spectrum Disorder (N = 27), compared to a healthy control group (N = 69) and fibromyalgia (N = 69). In this retrospective case-control study, the Ghent Participation Scale was completed by all participants. Each patient with EDS and HSD was matched by age and sex to healthy controls. The hEDS and HSD group were compared with the healthy control group and a positive control group (persons with fibromyalgia). The results show that there was a significant lower overall participation score for persons with hEDS/HSD compared to the healthy control group. In addition, significant differences were observed in the subscores self-performed activities and delegated activities in the hEDS/HSD group compared to healthy controls, being HEDS/HSD patients who obtained the lower scores. Further research is needed to obtain representative results of the participation level for the EDS/HSD population. In this way, interventions can be set up for patients with EDS in an evidence-based way and that are appropriate to the patient's level of participation.

Patient perspectives on employment participation in the "hypermobile Ehlers-Danlos syndrome".

BACKGROUND: "Ehlers-Danlos syndrome" (EDS) is a heritable connective disorder influencing multiple aspects of daily life. Most studies have focused on describing the physical symptoms and level of disability, but little knowledge exists about the psychosocial effects of the pathology. Participation in employment is an aspect that strongly influences quality of life of patients with chronic pathologies. This study, therefore, aimed to explore the lived experiences in employment participation of patients diagnosed with "hypermobile EDS". METHODS: An inductive thematic analysis, using semi-structured interviews was used. Nine patients, purposively selected by a continuum sampling strategy, were included. Interviews were audio-recorded and transcribed verbatim. RESULTS: Data analysis resulted in three main themes: (1) elements assisting participation in employment, (2) limitations in employment participation, and (3) unemployment due to the "hypermobile EDS". On the one hand, the results show that related health complaints can impede employment participation to an important extent. On the other hand, patients also report several aspects of work that can affect their well-being in a positive way. CONCLUSION: There are specific reasons for a person with "hypermobile EDS" to participate in employment. These reasons are different for each person and may even vary in time.Implications for rehabilitation"Hypermobile EDS" greatly impacts activities and participation in daily life. "Living with limitations" is the central theme in the lives of "Hypermobile EDS" patients.Various aspects influence work participation in people with "Hypermobile EDS", such as work pressure, tasks, and transport to work.Work has positive effects in the lives of people with "Hypermobile EDS."Work can create difficulties when the job requirements and tasks do not match the functional abilities of a person with "Hypermobile EDS."

Effect of combined exercise training on physical and metabolic fitness in adults with intellectual disability: a controlled trial.

OBJECTIVE: Investigating the effect of combined aerobic and strength training on metabolic and physical fitness in adults with intellectual disabilities compared to endurance training and no training. DESIGN: A controlled trial with patients receiving either combined (COM), endurance (END) or no training (C). SETTING: Two centres for intellectual disabilities (Sterrenhuis, Brasschaat and Emiliani, Lokeren, Belgium). SUBJECTS: Forty-five adults with intellectual disabilities (mean age: 42 (9,2), mean body mass index (BMI): 24 (3,9), mean IQ: 56 (5,6)). INTERVENTION: Combined exercise training (n = 15) and endurance training (n = 15) twice a week for 70 minutes per session for 20 weeks and no training (n = 15). Groups were matched for age, sex and intellectual disability. MAIN MEASURES: Lipid profile, physical fitness (primary); blood pressure and body composition. RESULTS: Compared to no training, combined exercise training has significant positive effects on total cholesterol levels, aerobic capacity, muscle strength and resting systolic blood pressure, while endurance exercise training has significant effects on aerobic capacity and resting systolic blood pressure. Compared to endurance training, combined exercise training resulted in a significant better evolution of total cholesterol (mean differences: -18 versus -3 mg/dl), 1RM upper (+6 versus +1 kg) and lower limb (+25 versus +8 kg) and abdominal muscles (+15 versus +1 kg), hand grip strength (+9 versus +2 kg), muscle fatigue resistance (+11 versus +5 sec), sit-to-stand (+5 versus +2/30 sec) and systolic blood pressure (-15 versus -10 mmHg). CONCLUSION: This study revealed a tendency towards more beneficial effects of combined exercise training in adults with intellectual disability.