Psychosocial adjustment to visual loss in patients with retinitis pigmentosa

Purpose: To investigate psychosocial adjustment to visual loss in patients with retinitis pigmentosa (RP). Design: Cross-sectional study. Methods: Thirty-three legally blind patients with RP participated in the study. Information regarding the patients' adjustment to their visual loss was obtained using the Psychological Adjustment to Illness Scale (PAIS-SR). Seven psychosocial domains were tested: health-care orientation, vocational environment, domestic environment, sexual relationships, extended family relationships, social environment, and psychological distress. These scores were compared with the psychosocial adjustment of patients with diabetes. Results: Significantly elevated scores (a high score reflecting poor adjustment) were seen in four out of seven domains. The highest relative score was seen in the health-care orientation domain (65 ± 14, p < 0.001), followed by vocational function (61 ± 11, p < 0.001), social environment (58 ± 9, p < 0.001), and extended family relationships (55 ± 9, p < 0.05). The total PAIS score was significantly elevated (58 ± 8; p < 0.001). Conclusions: Patients with RP have difficulties in adjusting to their visual loss particularly with respect to health-care orientation, vocational environment, social environment, and extended family relationships. They face more difficulties in these domains than diabetic patients in adjusting to their illness.