Purpose: 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.
Keywords: Illness representations; inherited retinal dystrophies; paranoid ideation; psychological distress; quality of life.