Aims To explore the use of pre-clinic questionnaires to provide a child-family focused clinical consultation for children with down syndrome.
Background The down syndrome Medical Interest Group UK has developed evidenced based health surveillance guidelines for people with down syndrome. They recommend at least an annual health review for all children beyond the first year of life.
Within a 30 min clinic consultation time, as clinicians we were finding it increasingly challenging to cover all aspects of the recommended health surveillance and address the family’s needs. This often left the clinician and families feeling rushed and unsatisfied. We felt a pre-clinic down syndrome specific questionnaire would enable us to focus on the family’s priorities’ and also gather the required routine health surveillance information.
Methods An age specific (1–3 yrs., 3–11 yrs., 11- 19 yrs.) pre-clinic questionnaire based on the recommended health surveillance for children with down syndrome was developed in consultation with the local parent down syndrome support group. The questionnaires are posted out to parents with their clinic appointment and are also available on the parent support group website.
We asked for verbal feedback from clinicians and parents, to determine if the questionnaires provided any additional value or were they burdensome.
Results We have piloted the questionnaire for three months. The feedback so far has been positive, apart from some clinicians being sceptical about administrative errors that may occur with age-specific questionnaires. Parents and clinicians report the questionnaires have enabled them to discuss the positive aspects of the child’s progress and to have child-family needs led consultation.
Discussion We feel the questionnaires provides a tool for a family led consultation and serves as an aide memoir to both families and the clinician to cover the recommended aspects of developmental and health surveillance. We are aspiring in the future to review the questionnaire a week in advance of the clinic to help direct the consultation to the most appropriate professional, dependent on the needs of the child and family. We believe this will improve both clinician and parental satisfaction and long term cost savings in delivering the service.
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