Health Care Guidelines

The National Down Syndrome Society (NDSS) publishes a set of Health Care Guidelines for Individuals with Down Syndrome, which reflect current standards and practices in the United States. NDSS emphasizes that adolescents with Down syndrome need the usual health care screening procedures, immunizations, and preventive health measures that are used for the teen-aged population at large. NDSS also recognizes that teens with Down syndrome have some unique risks as well as different levels of risks for particular diseases and disorders. The health guidelines provide a framework to detect disorders within these risk categories.

There are specific health care guidelines for adolescents with Down syndrome, which should be used in conjunction with the usual health care screening procedures and preventive health measures for that age group.

The NDSS Health Care Guidelines address the following categories for adolescents with Down syndrome:

History: In addition to the usual medical history questions used for typically-developing adolescents, the clinician should focus specifically on the following:

Nurses can help the adolescent and other family members to prepare a list of questions and concerns to discuss during the history-taking. If the teen or family is unable or unwilling to address these concerns during the visit, the nurse may want to send the health care provider written information about the teen or attend the appointment in person.

Because a valid history is so important to the teen’s well-being, the nurse should always send a list of relevant information directly to the health care provider in advance of the appointment.

Exam: In addition to a general physical and neurological exam, the clinician should follow these recommendations:

Because many components of the physical examination can be bothersome or even traumatic for a teen with Down syndrome, nurses can help prepare the adolescent by describing the procedure in a manner consistent with the teen’s cognitive status. In some cases, the presence of the nurse and/or mother during the exam can be quite comforting.

Labs and Consults:

While some primary health care providers will automatically schedule labs and consults for their adolescent patients with Down syndrome, others do not manage this type of care. Nurses working with the teen may arrange these appointments directly, contact the family with periodic reminders, or simply set up a tickler system.

Teens with Down syndrome continue their educational and developmental progress. There’s no excuse for ignoring the developmental needs of adolescents with cognitive impairments, and regular assessments need to continue. Clinicians working with this population should support the following interventions:

Nurses working with this population can play a key role in requesting, arranging, and interpreting the developmental evaluations listed above.

NDSS cites the following recommendations for health care practitioners working with adolescents with Down syndrome:

Nurses working with the adolescent can facilitate communication between the primary health care provider, family members, medical specialists, and educational personnel. By providing relevant information in a timely manner, the nurse can make sure that the NDSS recommendations are addressed.

It’s also helpful if the nurse can attend the physical appointment with the teen. Many health care providers offer a great deal of off-the-cuff information and casual recommendations during the visit. If the nurse isn’t present to take notes and interpret the information to the teen following the visit, it’s important to prepare a reliable family member to fill this role.

Health care providers working with teens with Down syndrome have a good grasp of the client’s social and developmental issues, so the nurse does not need to be involved in these areas.

The Down Syndrome Association Hudson Valley provides Health Care Guidelines for adolescents with Down syndrome.


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