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 people with Down syndrome need the usual health
care screening procedures, immunizations, and preventive health measures that
are used for the population at large.
NDSS also recognizes that
individuals 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 adults with Down syndrome, which should
be used in conjunction with the usual health care screening procedures and preventive
health measures.
The NDSS Health Care Guidelines
address the following categories for adults with Down syndrome:
History:
In addition to the usual medical history questions used for typically-developing
adults, the clinician should gather data about:
- Sleep apnea symptoms
- Loss of independence
in living skills
- Behavioral changes
- Mental health problems
- Symptoms of dementia
Nurses can help the client
prepare a list of questions and concerns to discuss during the history-taking.
If the client’s cognitive function is significantly impaired, the nurse
may want to send the health care provider written information about the client
or attend the appointment in person.
Exam:
In addition to a general physical and neurological exam, the clinician should
follow these recommendations:
- monitor for obesity by
plotting height for weight
- listen for evidence of
mitral valve prolapse and aortic regurgitation
- perform Pap smears on
sexually active women every 1-3 years following first intercourse
- for women who are not
sexually active, perform single-finger bimanual exam with finger-directed
cytology exam
- screening pelvic ultrasound
every 2-3 years for women who refuse bimanual exams
- breast exam annually
Because many components
of the physical examination can be bothersome or even traumatic for an adult
with Down syndrome, nurses can help prepare the client by describing the procedure
in a manner consistent with the individual’s cognitive status. In some
cases, the nurse’s presence during the exam can be quite comforting.
INSTANT FEEDBACK:
Because
sexual activity is so unlikely in women with Down syndrome, Pap smears are not
considered a standard part of preventive health care for this population.
Labs and
consults:
- annual thyroid screening
(TSH and T4)
- ophthalmologic evaluation
every two years
- repeat cervical spine
x-rays as needed for Special Olympics
- auditory testing every
two years
- mammography (two recommendations:
either annually after 50 or every other year beginning at 40 and annually
beginning at 50)
- dental visits twice a
year
- mental health referral
for people with emotional and behavioral changes
While some primary health
care providers will automatically schedule labs and consults for adults with
Down syndrome, others do not manage this type of care. Nurses working with the
adult may arrange these appointments directly, contact the adult with periodic
reminders, or simply set up a tickler system. Nursing interventions should be
based on the client’s cognitive status, as well as current living arrangements.
INSTANT FEEDBACK:
Nurses
working with adults with Down syndrome should tailor nursing interventions to
the client’s cognitive level.
Developmental:
Clinicians play a key role in maintaining and even enhancing the functional status
of adults with Down syndrome, and should:
- continue speech and language
therapy, as indicated
- consider referral for
augmentive communication devices for adults with poor expressive language
- discuss plans for further
programming or vocational opportunities at age 21
- be aware that accelerated
aging may affect functional abilities
Many times, health care
providers don’t have access to relevant developmental information; some
clinicians simply ignore this portion of the client’s care. Nurses working
with the adult may be in the best position to get the ball rolling on developmental
issues.
INSTANT FEEDBACK:
Speech
and language learning plateaus as the individual with Down syndrome enters adulthood,
and further therapy is a waste of time and money.
Recommendations:
NDSS incorporates the following thoughts in the health care guidelines:
- discuss plans for alternative
long term living arrangements
- continue SBE prophylaxis
(antibiotic therapy to prevent subacute bacterial endocarditis) for adults
with cardiac disease
- continue dietary and
exercise recommendations
- update estate planning
and custody arrangements
- encourage social and
recreational programs with friends
- register for voting and
selective service at age 18
- reinforce the importance
of good self-care skills
- bereavement counseling
for those who have lost an important person in their life through death or
other circumstances
Nurses working with the
adult can facilitate communication between the primary health care provider,
medical specialists, and agency staff involved in the care of the adult with
Down syndrome. By providing relevant information in a timely manner, the nurse
can make sure that the NDSS recommendations are addressed.
INSTANT FEEDBACK:
Health
care providers working with adults 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.