For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with Pitt-Hopkins syndrome.
Which items should receive attention in care planning? Much attention is now being paid to multidisciplinary care, to the transition of care from child to adult, and to sexuality.
Recommendation(s)
Care Planning
R30
R30
Individuals with PTHS and their families require lifelong care, preferably provided by a multidisciplinary healthcare team.
R31
R31
Preparations for transition of care should start early, even already in puberty. Transition should include early and careful handing over of all information that is available on the child with PTHS, so both medical information and information on behaviour.
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