title: The psychological burden of an initially unexplained illness: patients with sternocostoclavicular hyperostosis before and after delayed diagnosis.
abstract: BACKGROUND
  Sternocostoclavicular hyperostosis (SCCH) is a rare, debilitating, chronic inflammatory disorder of the anterior chest wall due to a chronic sterile osteomyelitis of unknown origin. SCCH is largely underdiagnosed and often misdiagnosed. In individual cases it can remain unrecognized for years. The purpose of this study is twofold. Firstly, to evaluate the psychological condition of SCCH patients, both in the sometimes quite extended pre-diagnostic period between first manifestations and confirmed diagnosis of the disease, and in the current situation. Secondly, to investigate the relationships between the pre-diagnostic and the current psychological conditions of confirmed SCCH patients.
  
  
  METHODS
  Structured interviews were held with 52 confirmed SCCH patients. Questionnaires were included to assess posttraumatic stress symptoms, social support, aspects of pain, illness perceptions, self-reported health status, and quality of life.
  
  
  RESULTS
  SCCH patients reported stronger posttraumatic stress symptoms, more unfavorable illness perceptions, lower health status, and poorer quality of life than healthy individuals and patients with other diseases or traumatic experiences. Psychological distress in the pre-diagnostic period was associated with unfavorable conditions in the current situation.
  
  
  CONCLUSIONS
  SCCH is an illness with serious psychological consequences. Psychological monitoring of patients with unexplained complaints is recommended as long as a diagnosis has not been reached.
authors.affiliation: Institute of Psychology, Leiden University, Leiden, The Netherlands. w.a.van.der.kloot@umail.leidenuniv.nl
authors.forename: Willem A
authors.initials: WA
authors.lastname: van der Kloot
authors.forename: Neveen A T
authors.initials: NA
authors.lastname: Hamdy
authors.forename: Laurian C S
authors.initials: LC
authors.lastname: Hafkemeijer
authors.forename: Femke M C
authors.initials: FM
authors.lastname: den Dulk
authors.forename: Sadhna A
authors.initials: SA
authors.lastname: Chotkan
authors.forename: Arnold A P
authors.initials: AA
authors.lastname: van Emmerik
authors.forename: Ad A
authors.initials: AA
authors.lastname: Kaptein
mesh_terms: D000328:Adult; D017668:Age of Onset; D000368:Aged; D017281:Cost of Illness; D005260:Female; D006304:Health Status; D006801:Humans; D015218:Hyperostosis, Sternocostoclavicular / Q000175:diagnosis / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D011788:Quality of Life / Q000523:psychology*; D035583:Rare Diseases / Q000175:diagnosis / Q000523:psychology*; D012959:Socioeconomic Factors; D013313:Stress Disorders, Post-Traumatic / Q000209:etiology*; D011795:Surveys and Questionnaires; D055815:Young Adult