title: Quality of life is decreased in patients with paragangliomas.
abstract: BACKGROUND
  Germline mutations in succinate dehydrogenase (SDH) genes predispose carriers for developing paragangliomas, and studies on their quality of life (QoL) are scarce.
  
  
  OBJECTIVE
  The 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.
  
  
  METHODS
  Cross-sectional, case-control study.
  
  
  METHODS
  Tertiary referral center.
  
  
  METHODS
  ONE 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.
  
  
  METHODS
  QOL 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.
  
  
  RESULTS
  Patients 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.
  
  
  CONCLUSIONS
  QoL is decreased in paraganglioma patients but stable when measured over time.
authors: Department of Endocrinology and Metabolic Diseases, Leiden University Medical Center, Leiden, The Netherlands.
authors: L T
authors: LT
authors: van Hulsteijn
authors: A
authors: A
authors: Louisse
authors: B
authors: B
authors: Havekes
authors: A A
authors: AA
authors: Kaptein
authors: J C
authors: JC
authors: Jansen
authors: F J
authors: FJ
authors: Hes
authors: J W A
authors: JW
authors: Smit
authors: E P M
authors: EP
authors: Corssmit
mesh_terms: D000310:Adrenal Gland Neoplasms / Q000235:genetics / Q000523:psychology*; D000328:Adult; D000368:Aged; D001007:Anxiety / Q000523:psychology; D002345:Carotid Body Tumor / Q000235:genetics / Q000523:psychology; D016022:Case-Control Studies; D003430:Cross-Sectional Studies; D003863:Depression / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008565:Membrane Proteins / Q000235:genetics; D008875:Middle Aged; D009759:Nystagmus, Pathologic / Q000523:psychology; D010235:Paraganglioma / Q000235:genetics / Q000523:psychology*; D011569:Psychiatric Status Rating Scales; D011788:Quality of Life / Q000523:psychology*; D013385:Succinate Dehydrogenase / Q000235:genetics; D011795:Surveys and Questionnaires
chemical_list: D008565:Membrane Proteins; C108096:SDHC protein, human; C491545:SDHD protein, human; C108095:SDHB protein, human; D013385:Succinate Dehydrogenase