title: Illness Perceptions, Psychiatric Manifestations, and Quality of Life in Patients with Inherited Retinal Dystrophies.
abstract: OBJECTIVE
  We aimed to assess psychiatric manifestations, health-related quality of life (HRQoL), and associated illness perceptions in patients with inherited retinal dystrophies (IRD).
  
  
  METHODS
  In 48 IRD patients, we assessed a wide range of psychological distress symptoms (Symptom Distress Checklist-90-R), depressive symptom severity (PHQ-9), generic HRQoL (WHOQOL-BREF), and Illness Perceptions (B-IPQ). Ninety-six alleged healthy participants matched for age, sex, and education served as healthy controls and 331 patients with rheumatological disorders served as disease controls.
  
  
  RESULTS
  IRD patients exhibited elevated symptoms of phobic anxiety (p=0.049) and paranoid ideation (p=0.028) compared to healthy and disease controls and were less satisfied with their general health (p<0.001) compared to disease controls. They shared, however, similar levels on all other aspects of psychiatric manifestations and HRQoL. The majority of patients acknowledged the hereditary and chronic nature of the illness. They also attributed more symptoms to their disease (illness identity) compared to people with rheumatological disorders (p<0.001), and this attribution was associated with paranoid ideation (p<0.05) and phobic anxiety (p<0.001).
  
  
  CONCLUSIONS
  Broadening our view of the psychological variables which should be assessed in IRD patients may help to better identify those psychological parameters which impair the patients' well-being and yet may be amenable to treatment. The design of psycho-educational therapies targeting illness representations may have a beneficial effect upon the IRD patients' psychological distress and HRQoL.
authors.affiliation: a University Eye Clinic, School of Health Sciences, University of Ioannina , Ioannina , Greece.
authors.forename: Georgia
authors.initials: G
authors.lastname: Yioti
authors.affiliation: b Department of Ophthalmology , University of Ioannina , Ioannina , Greece.
authors.forename: Maria
authors.initials: M
authors.lastname: Stefaniotou
authors.affiliation: c Department of Psychiatry , University of Ioannina , Ioannina , Greece.
authors.forename: Ioulia
authors.initials: I
authors.lastname: Ziavrou
authors.affiliation: c Department of Psychiatry , University of Ioannina , Ioannina , Greece.
authors.forename: Konstantinos
authors.initials: K
authors.lastname: Kotsis
authors.affiliation: c Department of Psychiatry , University of Ioannina , Ioannina , Greece.
authors.forename: Thomas
authors.initials: T
authors.lastname: Hyphantis
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D058499:Retinal Dystrophies / Q000150:complications / Q000151:congenital / Q000523:psychology*; D012720:Severity of Illness Index; D013315:Stress, Psychological / Q000209:etiology / Q000523:psychology*; D011795:Surveys and Questionnaires
keywords: Illness representations; inherited retinal dystrophies; paranoid ideation; psychological distress; quality of life