Quality of health and health services in people with fragile X syndrome: perspective of their parents

Advances in Autism,Volume 3, Issue 3, July 2017. Purpose People with fragile X syndrome (FXS), a monogenetic disorder with frequent ASD symptoms, are confronted with many health-related needs, especially concerning behavioural and mental problems. The number of publications about health inequalities or the usage of health services in persons with fragile X syndrome is scarce in general. There is no information about the situation in Germany. Design/methodology/approach Assessment of health statuse, access to, and satisfaction with healthcare in people with fragile X by a questionnaire handed tocompleted by their parents. Findings Seventy-four questionnaires were included in the assessment. While children and adolescents with FXS often (40%) utilized specialized services for the coordination of health-related services, adults most often madke use of family doctors. Most parents described the health-status of their relatives as good to excellent (89%). However, the satisfaction with health care-related demands by family doctors, medical specialists, and psychotherapists was graded 2.1 to 3.1 (school marks) (grade 1 is the best, equivalent to an A, and, grade 6 is the worst, equivalent to a failing mark)rated in the average to above average range. Research limitations/implications This paper is of special value as it gives insight into the perspective of parents concerning access to healthcare of FXS in Germany. Originality/value This paper is of special value as it gi...
Source: Advances in Autism - Category: Child Development Source Type: research