Increasing Provider Awareness and Promoting Adaptation of the American Academy of Pediatrics Recommended Guidelines for Patients with Down Syndrome

Individuals with Down Syndrome (DS) often have unique health challenges which include complex medical conditions, multiple physical malformations, cognitive impairment and developmental delays. These health challenges significantly increase the morbidity rate of people with DS. Coupled with varied medical issues, individuals with DS may also have difficulty and or inability to communicate, behavioral and social challenges. This wide variety of problems creates unique challenges for medical providers. Additionally there is no standard presentation of DS as no two individuals are the same. In the United States, approximately 6,000 babies are born annually with DS. This relatively low prevalence rate results in a lack of provider experience with this population. Typically, providers may care for only a handful of patients with DS, and therefore often find it challenging to deliver adequate care or appropriate follow-up. Furthermore, as these patients are medically, intellectually, emotionally and behaviorally complex, appointments generally require more time for these individuals. Additionally, the medical complexity of these patients may make providers feel less confident caring for them. In 2011, The American Academy of Pediatrics (AAP) created a checklist to assist providers with staying up-to-date on current recommendations for treating patients with Down Syndrome. The 2011 checklist created for providers, entitled Health Supervision for Children with Down Syndrome. The checklist is a provider tool to track health maintenance issues divided by age, starting prenatally and continuing through adulthood. This project includes: a comprehensive literature review on the medical problems associated with DS; challenges providers face treating these individuals and current provider recommendations when treating this population. The American Academy of Pediatrics checklist was the vehicle used to increase providers awareness and utilization of the recommended guidelines when treating patients with DS. Kotters Eight Steps of Change was the theoretical framework which guided both the development and implementation of the project. The objectives for this project began by first identifying the guidelines and provider recommendations from the most current literature to be utilized by primary care providers of individuals with Down Syndrome. Second: a training workshop for providers was developed based on the AAP's 2011 checklist. Third: the training workshop was presented to providers at a local community clinic. Fourth: training workshop and feedback from participants was evaluated and workshop findings disseminated at a related 2015 conference.