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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.

INSTANT FEEDBACK:

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
Exam
Lab and Consults
Developmental
Recommendations

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

symptoms of obstructive airway disease and sleep apnea
sensory functioning, with an emphasis on vision and hearing
behavioral problems
sexuality issues

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.

INSTANT FEEDBACK:

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:

monitor for obesity by plotting height for weight on the growth charts for typical adolescents
listen for evidence of mitral valve prolapse or aortic regurgitation
perform pelvic exams only on sexually active teen girls

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:

Thyroid function testing (TSH and T4) annually
Hearing and vision evaluations every year
Repeat screening cervical spine x-rays as needed for Special Olympic participation
Echocardiogram if evidence of valvular disease on clinical exam
Consult with Adolescent Medicine practitioner or gynecologist experienced in working with individuals with developmental disabilities to address issues of sexuality and/or for pelvic examination for sexually active teenager
Twice-yearly dental exams

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.

Developmental:
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:

Psycho-educational evaluations every two years as part of the Individualized Educational Plan (IEP)
Assessments of independent function
Speech and language therapy as needed
Health and sex education, including counseling regarding abuse prevention
Smoking, drug, and alcohol education

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

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

Begin functional transition planning
Consider enrollment for SSI depending on family income
SBE prophylaxis is needed for teens with cardiac disease prior to invasive procedures
Low calorie, high fiber diet
Regular exercise
Update estate planning and custody arrangements
Encourage social and recreational programs with friends
Register for voting and selective service at age 18
Discuss plans for alternative long term living arrangements
Reinforce the importance of good self-care skills

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.

INSTANT FEEDBACK:

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.

https://www.chop.edu/news/updates-trisomy-21-recommended-medical-guidelines