Further Outpatient Care
- Individuals with MR should be evaluated at least annually by a neurologist or neurodevelopmental pediatrician with a special interest in the etiology and management of cognitive disorders. The physician should have adequate knowledge of the educational, social, and support services available in the community; assessing the appropriateness of the patient's individualized habilitation is important.
- To maximize the individual's functional independence, the following areas should be addressed by the physician at least annually:
- Treatment of associated impairments
- Pharmacotherapy
- Behavior management
- Educational services
- Recreational needs
- Family counseling
- The annual visit requires routine preventive medicine and coordination of specialized services such as dental and gynecologic care under sedation. Supplemental vaccines, including the influenza and hepatitis B vaccines, are particularly prudent for those in residential placements. A careful behavioral history is important to identify newly emerging maladaptive behaviors that may be treated effectively with behavior management.
- If patients have coexisting motor impairments, the physician should monitor for secondary orthopedic disease. Advanced knowledge in the pharmacologic management of spasticity and rigidity allows the clinician to refer the patient for botulinum toxin injections or baclofen pump insertion when appropriate. Arthroplasty for progressive hip dislocation and/or tendon releases for progressive contractures due to spasticity may be required.
- The health maintenance schedule for individuals with Down syndrome is well recognized. Ongoing audiologic monitoring, thyroid function tests, and screening for atlantoaxial instability are important components.
Prognosis
- Individuals with MR/ID fare better today than at any other recorded time in world history.
Patient Education
- Family support and education around the issues of MR can be obtained from the following:
- The Arc (formerly known as the Association for Retarded Citizens)
- Membership Department
- 1010 Wayne Ave., Suite 650
- Silver Spring, MD 20910
- American Association on Intellectual and Developmental Disabilities
- 501 3rd Street, NW
- Suite 200
- Washington, DC 20001
- 800-424-3688
- Exceptional Parent Magazine
- P.O. Box 2078
- Department EP
- Marion, OH 43305-2178
- National Organization for Rare Disorders
- 55 Kenosia Avenue
- PO Box 1968
- Danbury, CT 06813-1968
- For excellent patient education resources, visit eMedicine's Brain and Nervous System Center. Also, see eMedicine's patient education article Down Syndrome.
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| Category | IQ score* (SD below mean) | Proportion of MR/ID | Educational level/adaptive skills | Intensity of supports required | Prevalence in total population |
| Mild | 50-55 to 70 (2-3) | 85% | Up to about 6th grade; vocational | Intermittent, especially under stress | 0.9-2.7% |
| Moderate | 35-40 to 50-55 (3-4) | 10% | up to about 2nd grade; unskilled or semi-skilled, supervised | Limited; usually supervised | 0.3-0.4% |
| Severe | 20-25 to 35-40 (4-5) | 4% | May learn words; elementary self-care skills | Extensive; closely supervised group or family home | |
| Profound | < 20-25 (>5) | 1% | Little to no self-care skills | Constant aid and supervision | |
| *IQ scores are considered +/-5 points due to measurement error. | |||||

