Psychosocial adjustment to visual loss in patients with retinitis pigmentosa

To investigate psychosocial adjustment to visual loss in patients with retinitis pigmentosa (RP).

Cross-sectional study.

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.

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).

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.