Literature DB >> 17478205

Health-related quality of life in hereditary hemorrhagic telangiectasia.

Urban W Geisthoff1, Katinka Heckmann, Roberto D'Amelio, Stefan Grünewald, Dirk Knöbber, Peter Falkai, Jochem König.   

Abstract

OBJECTIVE: To assess and differentiate the health-related quality of life (HR-QoL) in patients with hereditary hemorrhagic telangiectasia (HHT). STUDY DESIGN AND
SETTING: A prospective, open, cross-sectional questionnaire-based study (including the Short Form-36 Health Survey [SF-36]) performed by a tertiary care center.
RESULTS: A total of 77 patients (36 females) were included. Except for one domain (bodily pain), the scores for all scales of the SF-36 were significantly reduced in comparison with normative data. The duration of epistaxis, the presence of hepatic involvement and gastrointestinal bleeding, and the number of visible telangiectases correlated with lower scores on several scales of the SF-36. Unexpectedly, the frequency of epistaxis did not correlate with any scale.
CONCLUSIONS: The duration of epistaxis, liver involvement, gastrointestinal bleeding, and the number of visible telangiectases have a major influence on the HR-QoL in HHT whereby the frequency of epistaxis seems to play a minor role. SIGNIFICANCE: The data presented have an impact on therapeutic decisions, medical expert opinions, and research funding.

Entities:  

Mesh:

Year:  2007        PMID: 17478205     DOI: 10.1016/j.otohns.2006.12.019

Source DB:  PubMed          Journal:  Otolaryngol Head Neck Surg        ISSN: 0194-5998            Impact factor:   3.497


  25 in total

Review 1.  Quality of life in rare genetic conditions: a systematic review of the literature.

Authors:  Julie S Cohen; Barbara B Biesecker
Journal:  Am J Med Genet A       Date:  2010-05       Impact factor: 2.802

2.  [Measuring the world of quality of life].

Authors:  S Maune; U Geisthoff
Journal:  HNO       Date:  2009-09       Impact factor: 1.284

3.  Depression and post-traumatic stress disorder in individuals with hereditary hemorrhagic telangiectasia: A cross-sectional survey.

Authors:  Shruti Chaturvedi; Marianne Clancy; Nicole Schaefer; Olalekan Oluwole; Keith R McCrae
Journal:  Thromb Res       Date:  2017-03-09       Impact factor: 3.944

4.  Efficiency of laser treatment in patients with hereditary hemorrhagic telangiectasia.

Authors:  Gita Jørgensen; Bibi Lange; Jens Højberg Wanscher; Anette Drøhse Kjeldsen
Journal:  Eur Arch Otorhinolaryngol       Date:  2011-06-26       Impact factor: 2.503

5.  The Subjective Experience of Patients Diagnosed with Hereditary Hemorrhagic Telangiectasia: a Qualitative Study.

Authors:  Laura Geerts; Carole Fantini-Hauwel; Elodie Brugallé; Odile Boute; Frédéric Frénois; Lydie Defrance; Sylvie Manouvrier-Hanu; Florence Petit; Pascal Antoine
Journal:  J Genet Couns       Date:  2016-10-28       Impact factor: 2.537

6.  Development and validation of a quality of life measurement scale specific to hereditary hemorrhagic telangiectasia: the QoL-HHT.

Authors:  Thi Thao Truc Le; Guillaume Martinent; Sophie Dupuis-Girod; Antoine Parrot; Anne Contis; Sophie Riviere; Thierry Chinet; Vincent Grobost; Olivier Espitia; Brigitte Dussardier-Gilbert; Laurent Alric; Guillaume Armengol; Hélène Maillard; Vanessa Leguy-Seguin; Sylvie Leroy; Murielle Rondeau-Lutz; Christian Lavigne; Shirine Mohamed; Laurent Chaussavoine; Pascal Magro; Julie Seguier; Mallorie Kerjouan; Sylvie Fourdrinoy
Journal:  Orphanet J Rare Dis       Date:  2022-07-19       Impact factor: 4.303

7.  Real-time imaging of de novo arteriovenous malformation in a mouse model of hereditary hemorrhagic telangiectasia.

Authors:  Sung Ok Park; Mamta Wankhede; Young Jae Lee; Eun-Jung Choi; Naime Fliess; Se-Woon Choe; Seh-Hoon Oh; Glenn Walter; Mohan K Raizada; Brian S Sorg; S Paul Oh
Journal:  J Clin Invest       Date:  2009-10-01       Impact factor: 14.808

8.  Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis.

Authors:  Leigh Ann Higa; Jamie McDonald; Deborah O Himes; Erin Rothwell
Journal:  J Community Genet       Date:  2015-09-04

9.  Restless Leg Syndrome Is Underdiagnosed in Hereditary Hemorrhagic Telangiectasia-Results of an Online Survey.

Authors:  Freya Droege; Andreas Stang; Kruthika Thangavelu; Carolin Lueb; Stephan Lang; Michael Xydakis; Urban Geisthoff
Journal:  J Clin Med       Date:  2021-05-06       Impact factor: 4.241

10.  Pazopanib for severe bleeding and transfusion-dependent anemia in hereditary hemorrhagic telangiectasia.

Authors:  Joseph G Parambil; James R Gossage; Keith R McCrae; Troy D Woodard; K V Narayanan Menon; Kasi L Timmerman; Douglas P Pederson; Dennis L Sprecher; Hanny Al-Samkari
Journal:  Angiogenesis       Date:  2021-07-22       Impact factor: 9.596

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.