Jangra Dalbhir, Ganesh Anuradha, Thackray Robin, Austin LaToya, Ulster Alissa, Sutherland Joanne, Levin Alex V
Department of Ophthalmology, The Hospital for Sick Children, Toronto, Ontario, Canada.
Ophthalmic Genet. 2007 Mar;28(1):25-30. doi: 10.1080/13816810701201930.
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.
研究视网膜色素变性（RP）患者对视力丧失的心理社会适应情况。
横断面研究。
33例法定失明的RP患者参与了本研究。使用疾病心理适应量表（PAIS-SR）获取患者对视力丧失的适应情况信息。测试了七个心理社会领域：医疗保健取向、职业环境、家庭环境、性关系、大家庭关系、社会环境和心理困扰。将这些分数与糖尿病患者的心理社会适应情况进行比较。
七个领域中有四个领域的分数显著升高（高分反映适应不良）。医疗保健取向领域的相对分数最高（65±14，p<0.001），其次是职业功能（61±11，p<0.001）、社会环境（58±9，p<0.001）和大家庭关系（55±9，p<0.05）。PAIS总分显著升高（58±8；p<0.001）。
RP患者在适应视力丧失方面存在困难，尤其是在医疗保健取向、职业环境、社会环境和大家庭关系方面。与糖尿病患者相比，他们在这些领域适应疾病时面临更多困难。
