Musculoskeletal complaints, physical activity and health-related quality of life among patients with the Ehlers–Danlos syndrome hypermobility type

2010 ◽  
Vol 32 (16) ◽  
pp. 1339-1345 ◽  
Author(s):  
Lies Rombaut ◽  
Fransiska Malfait ◽  
Ann Cools ◽  
Anne De Paepe ◽  
Patrick Calders
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Musculoskeletal Complaints ◽  
Health Related Quality ◽  
Ehlers Danlos Syndrome ◽  
Related Quality ◽  
Health Related ◽  
Danlos Syndrome

scholarly journals Custom-Made Foot Orthoses Reduce Pain and Fatigue in Patients with Ehlers-Danlos Syndrome. A Pilot Study

2020 ◽  
Vol 17 (4) ◽  
pp. 1359 ◽  
Author(s):  
María Reina-Bueno ◽  
Carmen Vázquez-Bautista ◽  
Inmaculada C. Palomo-Toucedo ◽  
Gabriel Domínguez-Maldonado ◽  
José Manuel Castillo-López ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Foot Orthoses ◽  
Foot Pain ◽  
Health Related Quality ◽  
Ehlers Danlos Syndrome ◽  
Custom Made ◽  
Related Quality ◽  
Health Related ◽  
Danlos Syndrome

Background: Pain and fatigue are major clinical manifestations in patients with Ehlers-Danlos Syndrome (EDS). The aim of this study is to measure change of the effects of custom-made foot orthotics on some manifestations related to EDS, such as foot pain, foot functionality, fatigue, and quality of life. Methods: Thirty-six patients with EDS wore foot orthoses for three months. Foot pain, foot-related disability, foot functionality, fatigue, and quality of life were measured using the 11-point Numeric Rating Scale, the Manchester Foot Pain and Disability Index, the Foot Function Index, the Fatigue Severity Score, and the 12-Item Short Form Health Survey questionnaires, respectively, at the beginning and after 3 months. Results: Participants demonstrated significantly improved foot pain (p = 0.002), disability related to foot pain (p < 0.001), foot functionality (p = 0.001), fatigue (p < 0.007), and mental health-related quality of life (p = 0.016). The physical health-related quality of life did not show significant changes. Conclusions: The use of custom-made foot orthoses help in the management of the symptoms by participants. This study could contribute to the foot specialists being considered as an additional member in multidisciplinary teams that are trying to develop an approach for patients with EDS.

510 A Profile of Physical Performance Variables in an Out-Patient Adult Population with Narcolepsy

SLEEP ◽  
2021 ◽  
Vol 44 (Supplement_2) ◽  
pp. A201-A201
Author(s):  
Ragy Tadrous ◽  
Julie Broderick ◽  
Niamh Murphy ◽  
Lisa Slattery ◽  
Gillian Quinn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Physical Performance ◽  
Symptom Severity ◽  
Health Related Quality ◽  
Cardiopulmonary Fitness ◽  
Performance Variables ◽  
Related Quality ◽  
Health Related

Abstract Introduction Narcolepsy can significantly impact the physical and mental wellbeing of people with narcolepsy, and has been associated with significant reductions in quality of life and physical performance. People with narcolepsy demonstrate many barriers to being physically fit and active, such as sleepiness and social isolation. Despite physical functioning and vitality being the most affected domains of health-related quality of life in this cohort, little is known about how physical performance variables are affected in people with narcolepsy. Methods This cross-sectional study profiled the physical performance of adults with narcolepsy attending the Narcolepsy Centre located in St. James’s Hospital. Participants underwent a physical performance test battery that investigated cardiopulmonary fitness, physical activity, muscle strength and endurance. Furthermore, health-related quality of life (HRQoL), symptom severity and sedentary behaviour was ascertained through self-report questionnaires. Results A total of 23 participants were recruited in this study. The majority of participants were female (n=13, 56.52%) and the mean age was 31.53 (± 13.17) years. Physical performance was generally found to be lower than age-and-gender matched normative values for cardiopulmonary fitness, physical activity and muscle strength and endurance. Participants’ completed 42.20 ± 21.41 minutes of moderate-vigorous physical activity daily as measured by actigraphy. Considerable sedentary behaviour was objectively measured in this sample (10.21 hours). Symptom severity was high as measured by the Epworth Sleepiness Scale and the Narcolepsy Severity Scale, and participants reported reduced quality of life when compared to general population norms (US, UK, France and Norway). Conclusion Markedly reduced physical performance was identified in this sample of people with narcolepsy, irrespective of participant age, gender and BMI. Future research should explore the role of exercise in improving the physical fitness in people with narcolepsy, and the influence of exercise on HRQoL and symptom severity in this cohort. Support (if any) This study was completed as part of Mr Ragy Tadrous’ Master of Science (MSc) degree in Trinity College Dublin. This degree was co-sponsored by the Physiotherapy Department in St. James’s Hospital, Dublin.

scholarly journals Relationship between Sedentary Time, Physical Activity, and Health-Related Quality of Life in Spanish Children

2021 ◽  
Vol 18 (5) ◽  
pp. 2702
Author(s):  
Manuel Ávila-García ◽  
María Esojo-Rivas ◽  
Emilio Villa-González ◽  
Pablo Tercedor ◽  
Francisco Javier Huertas-Delgado
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Sedentary Time ◽  
Vigorous Physical Activity ◽  
Well Being ◽  
Self Esteem ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Higher sedentary time and lower physical activity (PA) are associated with a poor health-related quality of life (HRQoL) in children. The aims of this study were: (1) to analyze the sedentary time, objectively measured PA levels (light, moderate, vigorous, and moderate-to-vigorous physical activity (MVPA)), and HRQoL dimensions (physical well-being, emotional well-being, self-esteem, family, friends, school, and total score) in children; and (2) to examine the association between sedentary time, PA levels, and HRQoL in children separately by sex. A total of 459 children (8.4 ± 0.4 years old, 50.54% males) from 15 schools in Granada (Spain) participated in the study. A tri-axial accelerometer was used to measure PA levels in the children for 7 consecutive days. The Revidierter KINDer Lebensqualitätsfragebogen (KINDL-R) questionnaire was used to determine the children’s HRQoL dimensions. The results showed that males presented more minutes engaged in MVPA than females. Both sedentary time and PA levels were associated with self-esteem and total score (all p < 0.05). In males, moderate and vigorous PA levels were associated with higher HRQoL, whereas light PA was associated with higher HRQoL in females. Future studies should take into account the use of activities with difference intensities in order to increase HRQoL in males and females.

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