Quality of life is decreased in patients with paragangliomas

ContextGermline mutations in succinate dehydrogenase (SDH) genes predispose carriers for developing paragangliomas, and studies on their quality of life (QoL) are scarce.ObjectivesThe objectives of this study were to assess QoL in patients with paragangliomas (PGL), to evaluate long-term QoL, and to...

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Published in:European journal of endocrinology 2013-05, Vol.168 (5), p.689-697
Main Authors: van Hulsteijn, L T, Louisse, A, Havekes, B, Kaptein, A A, Jansen, J C, Hes, F J, Smit, J W A, Corssmit, E P M
Format: Article
Language:English
Subjects:
Adrenal Gland Neoplasms - genetics
Adrenal Gland Neoplasms - psychology
Adult
Aged
Anxiety - psychology
Biological and medical sciences
Carotid Body Tumor - genetics
Carotid Body Tumor - psychology
Case-Control Studies
Clinical Study
Cross-Sectional Studies
Depression - psychology
Endocrinopathies
Female
Fundamental and applied biological sciences. Psychology
Humans
Male
Medical sciences
Membrane Proteins - genetics
Middle Aged
Neurology
Nystagmus, Pathologic - psychology
Paraganglioma - genetics
Paraganglioma - psychology
Psychiatric Status Rating Scales
Quality of Life - psychology
Succinate Dehydrogenase - genetics
Surveys and Questionnaires
Tumors of the nervous system. Phacomatoses
Vertebrates: endocrinology
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Summary:ContextGermline mutations in succinate dehydrogenase (SDH) genes predispose carriers for developing paragangliomas, and studies on their quality of life (QoL) are scarce.ObjectivesThe objectives of this study were to assess QoL in patients with paragangliomas (PGL), to evaluate long-term QoL, and to explore potential differences in QoL between SDH mutation carriers and paraganglioma patients without an SDH mutation.DesignCross-sectional, case–control study.SettingTertiary referral center.SubjectsOne hundred and seventy four paraganglioma patients were included: 25 SDHB, two SDHC, and 122 SDHD mutation carriers and 25 patients without an SDH mutation. They provided 100 peers as control persons. Furthermore, patients were compared with age-adjusted reference populations.Main outcome measuresQoL was assessed using three validated health-related QoL questionnaires: the Hospital Anxiety and Depression Scale, the Multidimensional Fatigue Index 20, and the Short Form 36.ResultsPatients reported a significantly impaired QoL compared with their own controls, mainly on fatigue and physical condition subscales. Compared with age-adjusted literature values, patients had significantly impaired scores on physical, psychological, and social subscales. A decreased QoL was mainly related to paraganglioma-associated complaints.There was no difference in QoL between the various SDH mutation carriers or paraganglioma patients without an SDH mutation. QoL in asymptomatic mutation carriers, i.e. without manifest disease, did not differ from QoL of the general population. Long-term results in 41 patients showed no alteration in QoL besides a reduced level of activity.ConclusionQoL is decreased in paraganglioma patients but stable when measured over time.
ISSN:0804-4643
1479-683X
DOI:10.1530/EJE-12-0968