Adolescents with Down syndrome

Adolescents with Down syndrome almost always have some degree of mental retardation, but it is usually in the mild to moderate range. There is a wide variation in the communicative and cognitive status of teens with Down syndrome. Some speak clearly and understandably, others have significant issues with grammar and articulation, and a small number depend on augmentative communication devices.

Many adolescents with Down syndrome attain functional levels for reading, writing, and math; others have been less successful in these areas. While there is usually some degree of impairment in fine motor skills, many teens with Down syndrome are good athletes and enthusiastic participants in community life.

Nurses can help the adolescent and other family members to prepare a list of questions and concerns to discuss during the history-taking component of their medical visits.
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

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 or mother during the exam can be 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 an Adolescent Medicine practitioner or gynecologist experienced in working with individuals with developmental disabilities to address issues of sexuality and for pelvic examination for a sexually active teenager
  
• Twice-yearly dental exams

While some primary health care providers will automatically schedule labs and consult 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 crucial 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 before 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

Intimacy and Sexuality

In general, individuals with Down syndrome reach puberty and sexual maturation about the same time as their non-disabled peers. Adolescent girls with Down syndrome who have hypothyroidism, or a history of heart disease, are more likely to have delayed onset of puberty.

Young females with Down syndrome can become pregnant, but males with Down syndrome have a lower fertility rate than males of similar ages.

While the physical and hormonal changes consistent with puberty occur the same as with teenagers without Downs syndrome, social maturity, self-control, social communication, abstract thinking, and problem-solving abilities are slower to develop and most often develop to a lesser degree.

Teens with Down syndrome need accurate information about intimacy and sexuality, presented in an open manner that is understandable and relevant for the individual.
Adolescents with Down syndrome need the same type of information as to their non-disabled peers about issues such as conception, contraception, sexually-transmitted disease, and sexual abuse. However, it is essential to tailor the information to the learning style of the teen with disabilities, factor in the values and wishes of the parents, and allow an opportunity for questioning and open discussion. Within the limitations and context of the teen's living arrangement, decisions need to be made about the extent of intimate relationships (NDSS, 2021).

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

The following sections of this course include descriptions of the most severe medical issues: heart disease, immune system impairment, respiratory infections, GI disorders, obstructive sleep apnea, cancer, and behavioral/psychiatric problems.