Zobrazeno 1 - 10
of 21
pro vyhledávání: '"Trine Bathen"'
Publikováno v:
Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-32 (2023)
Abstract Introduction The purpose of this study was to explore the literature on fatigue in patients with syndromic heritable thoracic aortic disease (sHTAD), including Marfan syndrome (MFS), Loeys-Dietz syndrome (LDS), vascular Ehlers Danlos syndrom
Externí odkaz:
https://doaj.org/article/b919658076d34b16a68a496cd111f14f
Autor:
Gry Velvin, Brede Dammann, Trond Haagensen, Heidi Johansen, Hilde Strømme, Amy Østertun Geirdal, Trine Bathen
Publikováno v:
BMC Public Health, Vol 23, Iss 1, Pp 1-17 (2023)
Abstract Background Work participation is a crucial aspect of health outcome and an important part of life for most people with rare genetic diseases. Despite that work participation is a social determinant of health and seems necessary for understan
Externí odkaz:
https://doaj.org/article/aa46157c71f64e48b73a0dc065e64ffe
Publikováno v:
Orphanet Journal of Rare Diseases, Vol 17, Iss 1, Pp 1-24 (2022)
Abstract Background Patients’ involvement (PI) in research is recognized as a valuable strategy for increasing the quality, developing more targeted research and to speed up more innovative research dissemination. Nevertheless, patient involvement
Externí odkaz:
https://doaj.org/article/bc469a81dfb64bad9915e1afd587e37f
Publikováno v:
Orphanet Journal of Rare Diseases, Vol 17, Iss 1, Pp 1-15 (2022)
Abstract Background Experienced fatigue is an under-recognized and under-researched feature in persons with many different rare diseases. A better overview of the characteristics of existing research on experienced fatigue in children and adults with
Externí odkaz:
https://doaj.org/article/593e356afbf84dbbad651cd30f35b887
Publikováno v:
PLoS ONE, Vol 13, Iss 12, p e0207846 (2018)
ObjectivesTo describe level of education and work participation among adults with congenital unilateral upper limb deficiency (CUULD) in Norway and to explore associations between work participation and demographic and clinical factors.MethodsCross-s
Externí odkaz:
https://doaj.org/article/383e6adfc73f460fa7114f40ecba895a
Publikováno v:
PLoS ONE, Vol 13, Iss 1, p e0190567 (2018)
To describe Norwegian adults with congenital unilateral upper limb deficiency (CUULD) regarding self-reported chronic pain (intensity, locations, impact on daily life) and fatigue. Analyze associations between chronic pain and demographic/clinical fa
Externí odkaz:
https://doaj.org/article/c2a79a4917e14be9ae152f205082147c
Publikováno v:
American Journal of Medical Genetics. Part a
Background International guidelines recommend hereditary thoracic aortic diseases (HTADs) to be managed in multidisciplinary aorta clinics. Aim To study HTAD patient's experiences with a aortopathy clinic in Norway and to review the literature on aor
Publikováno v:
International Journal of Orthopaedic and Trauma Nursing. 34:28-35
Background Multiple Osteochondromas (MO) is a rare skeletal disorder frequently needing orthopaedic surgery. High prevalence of pain has been reported, however fatigue has not previously been investigated. Purpose Our aims were to investigate prevale
Publikováno v:
Clinical genetics. 95(6)
The purpose of this study was to explore the literature on quality of life (QoL) in patients with hereditary thoracic aortic aneurysm and dissection (HTAAD); including Marfan syndrome (MFS), Loeys-Dietz syndrome (LDS), vascular Ehlers-Danlos syndrome