Rett syndrome: a literature review and survey of parents and therapists

A survey of 25 parents of girls with Rett Syndrome and 33 physical and occupational therapists treating those girls was conducted to gain a better understanding of the medical, developmental and therapy issues critical to this population. Twenty-two (92%) of the parent questionnaires and twenty-seven (82%) of the therapist questionnaires were returned. Questionnaire items judged to be critical to the daily management and therapeutic intervention of these girls were selected and analyzed. Descriptive statistics were employed for data analysis. The survey results are discussed in light of the current literature, and implications for pediatric physical and occupational therapy practice are offered.