Physical and Psychological Health in Persons with Deafblindness that Is due to Usher Syndrome Type II

Introduction: The objectives of the study reported here were to describe the physical and psychological health of persons with Usher syndrome Type II (USH2) and to explore any differences in terms of gender. Methods: The participants were recruited from the Swedish Usher database. In the first step, 122 persons received the questionnaire by mail, and 96 (aged 18-84, with a mean age of 55, 53% of whom were female) agreed to participate. The Health on Equal Terms questionnaire was used, which covered such items as health, living conditions, and social relationships. Results for the participants with USH2 were compared to those of a reference group of 5,738 persons who were drawn from a random sample of the Swedish population retrieved from the Swedish Public Health Institute. The odds ratio (adjusted for gender and age), and its 95% confidence interval were calculated. Results: The participants with USH2 reported that their physical and psychological health was significantly poorer than that of the Swedish reference group. They revealed major problems involving headache, fatigue, depression, suicidal thoughts, and suicide attempts. For the male participants, the psychological differences were even more marked than those of the male reference group. Discussion: The identification of factors associated with physical and psychological health and well-being is important for the design of future rehabilitation strategies for people with USH2. Special focus must be placed on the psychological well-being of men with USH2. Implications for practitioners: The management of rehabilitation services for persons with USH2 calls for interdisciplinary teamwork to provide adequate resources to cope with the physical and psychological health issues demonstrated in this study. (Contains 5 tables.)