• Massachusetts Department of Developmental Services. Massachusetts Department of Mental Retardation health screening recommendations. Boston (MA): Massachusetts Department of Developmental Services; 2007. 2 p.

This is the current release of the guideline.

This guideline updates a previous version: Massachusetts Department of Mental Retardation, Univ of Massachusetts Medical School's Center for Developmental Disabilities Evaluation and Research. Preventive health recommendations for adults with mental retardation. Boston (MA): Massachusetts Department of Mental Retardation and University of Massachusetts Medical School's Center for Developmental Disabilities Evaluation and Research; 2003 Sep 19. 2 p.

• Intellectual disability, learning disability, mental retardation, including Down syndrome
• Cancer (breast, cervical, colorectal, testicular, prostate, and skin)
• Infectious diseases (sexually transmitted diseases, human immunodeficiency virus [HIV], hepatitis A, B, and C, tuberculosis, influenza, pneumonia, tetanus, diphtheria, pertussis, measles, mumps, rubella, human papillomavirus infection, varicella, shingles)
• Hypertension
• Hypercholesterolemia
• Diabetes
• Dysphagia and aspiration
• Cardiovascular disease
• Osteoporosis
• Hearing and vision impairments
• Glaucoma
• Depression
• Dementia

Prevention
Screening

Family Practice
Internal Medicine
Preventive Medicine

Health Care Providers
Patients
Physician Assistants
Physicians

To present preventive health recommendations for adults with intellectual or developmental disability (mental retardation)

Adults (>19 years of age) with intellectual or developmental disability (mental retardation)

Screening

Cancer Screening

1. Breast mammography with clinical breast exam as appropriate
2. Pelvic examination and pap smear
3. Fecal occult blood testing (FOBT)
4. Sigmoidoscopy
5. Colonoscopy
6. Clinical testicular examination
7. Digital rectal exam (DRE)
8. Prostate specific antigen (PSA)
9. Skin examination

Other Screening

1. Body mass index (BMI)
2. Blood pressure
3. Blood lipid levels
4. Blood glucose levels
5. Liver function tests
6. Dysphagia and aspiration screening
7. Cardiovascular disease screening
8. Bone mineral density (BMD)

Infectious Disease Screening

1. Chlamydia and gonorrhea screening
2. Human immunodeficiency virus (HIV) screening
3. Hepatitis B and C screening
4. Tuberculin skin testing

Sensory Screening

1. Hearing exam
2. Vision exam
3. Eye exam for glaucoma

Mental and Behavioral Health Screening

1. Depression assessment
2. Dementia assessment

Screening for Persons with Down Syndrome

1. Thyroid function test
2. Cervical spine x-ray
3. Echocardiogram

Prevention

1. Health maintenance visit
2. Oral health visit
3. Immunizations for:
   • Influenza
   • Pneumococcal pneumonia
   • Hepatitis B and A
   • Tetanus, diphtheria, pertussis (TdaP)
   • Measles, mumps, and rubella (MMR)
   • Human papillomavirus (HPV) infection
   • Varicella
   • Zoster virus infection (shingles)
4. General counseling and guidance

Not stated

Searches of Electronic Databases

Comprehensive review of available Medline/PubMed sources, comparison to general population screening measures (Massachusetts Quality Health Partnerships), materials developed by advocacy and state agencies

Not stated

Expert Consensus (Committee)

Not applicable

Review

Literature review using structured evaluation of strength of evidence. Consensus review with expert clinical panel (see "Description of Methods Used to Formulate the Recommendations" field)

Expert Consensus

The development of the recommendations required careful consideration of many elements in the lives of adults with mental retardation.

Phase I

Committee members received a package of reference material for review prior to the initial meeting. Members reviewed the general findings from the literature search and discussed their own professional experience in community care for people with mental retardation. Following discussion, committee members agreed to adopt generally accepted Massachusetts Health Quality Partners (MHQP) guidelines for the general population as a baseline and develop recommendations for modifications to address areas of greater concern for the population of people with mental retardation.

Based on findings in the literature and the experience of committee members, three focus areas emerged:

1. The need to review and modify generic MHQP standards to ensure they are appropriate to the health needs of the adult population with intellectual disability.
2. The need to facilitate effective communication relating to an individual's health, lifestyle, adaptive functioning, and service plan between residential staff or family members and the community clinician.
3. The need to consider additional recommendations for sub-populations such as those with identifiable syndromes or comorbid conditions that are associated with additional health risks.

The committee formed three sub-groups and each group was charged with developing recommendations to address one of the above areas.

Phase II

Subcommittees met to develop recommendations that were shared at a second Advisory Committee meeting. The entire Advisory Committee reviewed and commented on the work of each subcommittee. The subcommittees then formed their final recommendations.

Phase III

The final meeting and discussion of the Advisory Committee was held for discussion of the remaining work of each committee. Subcommittee members agreed to complete recommendations for the final report to be forwarded to the Department of Mental of Retardation (name changed to Department of Developmental Services as of July 1, 2009).

These recommendations were revised in October 2005 and July 2007.

Not applicable

A formal cost analysis was not performed and published cost analyses were not reviewed.

Peer Review

Not stated

Note: Items that are indicated in Bold Italic are specific recommendations that differ from the Massachusetts Health Quality Partnership (MHQP) recommendations in order to reflect particular health concerns of the population with intellectual disabilities.

**Vaccines are recommended, but may not be covered by MassHealth or Medicare in all cases.

Preparation for an Examination

Many adults can be helped to feel more comfortable at a medical visit if they feel adequately prepared for the event. Family or support staff can be encouraged to introduce unfamiliar items such as a stethoscope or a blood pressure cuff at home to allow the instrument to become more familiar and facilitate cooperation during an exam.

During the exam, it is helpful to prepare patients for procedures by explaining them well or allowing patients with sensory impairments to explore the instruments that are about to be used. Performing simple examinations in an office or quiet waiting room may reduce a person's anxiety.

If someone is particularly anxious or an invasive screening procedure is necessary, the clinician might consider sedation prior to the appointment. In some cases, multiple procedures can be performed while the patient is sedated (dental work, or routine blood work, for example) to reduce the number of times a person is exposed to the risks of sedation.

Communication

First direct your questions to the patient to determine their own perception of their health status and needs. If communication is a problem, clinicians may have to rely on a family member or support staff to provide information relating to signs or symptoms of health concerns. Questions regarding changes in the individual's behavior and adaptive function can bring underlying physical and mental health issues to light.

None provided

Appropriate preventive healthcare for adults with intellectual disability (mental retardation)

Not stated

With the presentation of these recommendations, the Advisory Committee does not intend to imply that adults with intellectual and developmental disabilities all have similar health needs or that clinicians should not continue to use their clinical judgment and seek additional consultation when necessary. The Advisory Committee sees these recommendations as one of a number of steps towards ensuring that every adult with intellectual and developmental disabilities receives the most appropriate health care as an individual.

An implementation strategy was not provided.

Living with Illness
Staying Healthy

Effectiveness
Patient-centeredness

• Massachusetts Department of Developmental Services. Massachusetts Department of Mental Retardation health screening recommendations. Boston (MA): Massachusetts Department of Developmental Services; 2007. 2 p.

2003 Sep 19 (revised 2007)

Massachusetts Department of Developmental Services - State/Local Government Agency [U.S.]
University of Massachusetts Medical School's Center for Developmental Disabilities Evaluation and Research - Academic Institution

Massachusetts Department of Developmental Services

Massachusetts Department of Mental Retardation Preventive Health Standards Advisory Committee

Committee members: Victor Acquista, MD; Norberto Alvarez, MD; Bob Baldor, MD; Allen Crocker, MD; Marc Emmerich, MD; Warren Ferguson, MD; Jim Gleason, PT; Adria Hodas, RN NP; Elizabeth King, RN NP; Leo McKenna, PharmD.; Barbara Pilarcik, RN; Julie Lufkin Purtz, RN NP; Van R. Silka, MD; Carol Walsh RNC, MPH; Susan Weiner, OT

Not stated

This is the current release of the guideline.

This guideline updates a previous version: Massachusetts Department of Mental Retardation, Univ of Massachusetts Medical School's Center for Developmental Disabilities Evaluation and Research. Preventive health recommendations for adults with mental retardation. Boston (MA): Massachusetts Department of Mental Retardation and University of Massachusetts Medical School's Center for Developmental Disabilities Evaluation and Research; 2003 Sep 19. 2 p.

Print copies: Available from the University of Massachusetts Medical School, Center for Developmental Disabilities Evaluation and Research, 200 Trapelo Road, Waltham, MA 02452; Phone: (781) 642-0283; Fax: (781) 642-0162.

The following is available:

• Preventive health recommendations for adults with mental retardation. Guidelines for community practitioners. Boston (MA): Massachusetts Department of Mental Retardation and University of Massachusetts Medical School Center for Development Disabilities Evaluation and Research; 2007 Sep. 2 p.

Print copies: Available from the University of Massachusetts Medical School, Center for Developmental Disabilities Evaluation and Research, 200 Trapelo Road, Waltham, MA 02452; Phone: (781) 642-0283; Fax: (781) 642-0162.

The following is available:

• Massachusetts Department of Mental Retardation annual health screening recommendations. Boston (MA): Massachusetts Department of Mental Retardation and University of Massachusetts Medical School Center for Development Disabilities Evaluation and Research; 2007 Sep 26. 1 p.

Print copies: Available from the University of Massachusetts Medical School, Center for Developmental Disabilities Evaluation and Research, 200 Trapelo Road, Waltham, MA 02452; Phone: (781) 642-0283; Fax: (781) 642-0162.

Please note: This patient information is intended to provide health professionals with information to share with their patients to help them better understand their health and their diagnosed disorders. By providing access to this patient information, it is not the intention of NGC to provide specific medical advice for particular patients. Rather we urge patients and their representatives to review this material and then to consult with a licensed health professional for evaluation of treatment options suitable for them as well as for diagnosis and answers to their personal medical questions. This patient information has been derived and prepared from a guideline for health care professionals included on NGC by the authors or publishers of that original guideline. The patient information is not reviewed by NGC to establish whether or not it accurately reflects the original guideline's content.

This summary was prepared by ECRI on January 29, 2004. The information was verified by the guideline developer on February 26, 2004. This summary was updated by ECRI Institute on April 21, 2009. The updated information was verified by the guideline developer on May 12, 2009.

This NGC summary is based on the original guideline, which is subject to the guideline developer's copyright restrictions. Refer to the Center for Developmental Disabilities Education and Research (E.K. Shriver Center for Mental Retardation) for permission to reproduce guidelines.