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Adult Health Screening guidelines: How to make standard guidelines work optimally for the DD populat


Awareness/prevention of sexual and physical abuse. Mental Health care ... (check TSH in all patients, starting at 6 months, then age 1, then yearly) ... Breast Cancer ... – PowerPoint PPT presentation

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Title: Adult Health Screening guidelines: How to make standard guidelines work optimally for the DD populat

Adult Health Screening guidelines How to make
standard guidelines work optimally for the DD
  • Lisa D. Benaron, MD
  • Medical Director, Far Northern Regional Center
  • Board Certified in Internal Medicine, Pediatrics
    and Neurodevelopmental Disabilities
  • March 2007

Why a talk on health screening for patients with
  • Because the health care disparities for this
    population are glaring!
  • Increased survival of DD population and decreased
    warehousing in developmental institutions has
    created a greater demand for community-based
    health care that has not been matched by a
    proportional increase in resources
  • Difficulty accessing a consistent source of
    quality primary care leads to
  • Lower rates of routine, periodic health care,
    immunizations, preventive care all the ills
    associated with inability to establish an
    appropriate medical home

Closing the gap a national blueprint for
improving the health of persons with mental
retardation (December 2001)
6 Recommendations emerged
  • Integrate Health Promotion into community
    environments of people with mental retardation
  • Increase knowledge and understanding of health
    and mental retardation, ensuring that knowledge
    is made practical and easy to use
  • Improve the quality of health care for people
    with MR by identifying priority areas, adapting
    standards of care and rewarding excellence in care

Recommendations (continued)
  • Train Health care providers in the care of adults
    and children with MR
  • Ensure that health care financing produces good
    health outcomes for adults and children with MR
  • Increase sources of health care services for
    adults, adolescents, and children with MR,
    ensuring that health care is easily accessible
    for them

Recommendation for MR population can be
  • Apply equally well to individuals with other
    Developmental Disabilities (epilepsy, CP, autism)
  • Apply to any population that requires care
    providers to have special knowledge and take the
    time to adapt standard practice to accommodate
    special needs

Goals for Health care providers caring for
individuals with DD
  • Follow the same general health care guidelines as
    for Non-DD patients
  • Recognize where it may be worthwhile to deviate
    from standard recommendations because of
    differences in health risk profiles
  • Adopt strategies to overcome some of the
    obstacles that make providing health care to the
    DD population challenging

Standard Preventive Health care recommendations
  • US Preventive Service Task Force recommendations
    (can be downloaded to computer and/or PDA)
  • American Academy of Family Practice (based
    largely on the USPSTF recommendations)
  • American College of Physicians

Recommendations from our cost conscious Northern
  • Canadian Task Force on Preventive Health Care

The 3 Biggest Obstacles for health care
professionals attempting to provide quality care
for the DD population
  • 1. Lack of familiarity with the special medical
    needs/issues in the DD population
  • 2. Patient cooperation issues
  • 3. Time issues

Obstacle 1 Lack of familiarity
  • DD are included in Pediatric Training but not as
    often in adult medicine training programs
  • Even if a practitioner has seen a few patients
    with an unusual condition, that isnt enough
    exposure to feel like an expert
  • Lack of familiarity makes medical practitioners
    uncomfortable (hard to know what to do when you
    dont know what to do)

Initial Strategy
  • Dont be afraid to say that you dont know a lot
    about the patients condition but are willing to
    work to gain a better understanding (you dont
    have to know everything about everything to be a
    big help to patients and their families/care

Gain the appropriate knowledge
  • Department of Developmental Services website for
    specific issues Developmental Disabilities
    Resources for Health Care Providers
  • Contains specific information about common (and
    less common) DD conditions (e.g., Down syndrome,
    Williams syndrome, Mitochondrial Disorders )
  • Advice/Information about specific issues (e.g.,
    self-injurious behavior, obesity, feeding
    disorders, office non-compliance )

More ways to gain knowledge about uncommon
  • For info on genetic testing
  • Smiths Recognizable Patterns of Human
    Malformation The bible for all information
    about genetic syndromes
  • U.C. Davis consultation service 1-800-4-UCDavis
    provides physician to physician consultation with
    specialists for your complex questions
  • Get to know the medical consultants at your local
    Regional Center (DDS website has links to all the
    regional centers).
  • Call me and Ill try to help (Dr. Lisa Benaron
    530 879-4449 e-mail

Obstacle 2 Patient cooperation issues
  • Patients may be frightened of medical providers
    from previous negative experiences
  • Patients may be frightened because they do not
    understand why you are doing whatever you are
  • Patients may not have a strong desire to please
    you by being cooperative (need to seek ways to
    motivate the patient to go through the necessary
    health care procedures)
  • Patients may have physical limitations that make
    cooperation difficult
  • Medical procedures can be uncomfortable (even BP
    measurements can be noxious)

Solutions to Patient cooperation issues
  • Enlist help from the care providers or parents to
    explain and prepare the patient at whatever level
    is most appropriate.
  • Be patient with the patients (you may not be able
    to do what you want at this visit but maybe at
    the next or the next). Take the time to
    establish rapport and desensitize the patient
    to the medical office visit.
  • Praise, praise, praise. Reward, reward, reward.
  • Remember Baby steps!

When patience doesnt convince your patient
  • Try premedication with anti-anxiety medications
    (diazepam, lorazepam)
  • If the problems with aggression, anxiety are
    present across multiple different settings,
    consider long term medications (SSRIs, atypical

Obstacle 3 Timemoney
  • Sad state of affairs in current medical practice
    with emphasis on productivity
  • Providers do not feel they have the extra time to
    spend with the patients that they need

Solution to the time issue
  • Patients with DD dont take that much more time
    than some of the demanding/needy/medically
    complicated, non-DD patients in your practice
  • Time spent getting the patient comfortable now
    will pay off later
  • Consider using a nurse practitioner (different
    mindset from physicians)
  • Sometimes you just have to take the time you need
    to do a good job. Thats part of being a medical

Basic Health Monitoring for adults
  • Cardiovascular risks
  • Cholesterol
  • Blood Pressure
  • Thrombosis prevention
  • Diabetes
  • Cancer Prevention/Detection
  • Testicular
  • Breast cancer
  • Cervical cancer
  • Colon
  • Prostate

Additional considerations for DD adults
  • Awareness/prevention of sexual and physical abuse
  • Mental Health care
  • Appropriate diagnosis and treatment
  • Monitoring side-effects of psychiatric
  • Dental Health
  • Special issues related to menstrual

Sexually Transmitted Disease
  • Even if a patient is not suspected of being
    sexually active, you should screen for
    chlamydia/gonorrhea and possibly even HIV.
  • Why? Incredibly high incidence of sexual abuse in
    DD population.
  • Sexual abuse estimated to be 2-4x more common in
    DD population (80 for females, 50 for males or

Why the DD population is at risk for physical and
sexual abuse
  • Difficulty escaping an abusive situation because
    of mobility impairments
  • Presence of communication or physical impairments
    which limit the ability to defend themselves
    against a perpetrator and disclose abuse
  • Dependency on others for essential care giving
  • Exposure to large numbers of caregivers
  • Tendency to be compliant from previous
    conditioning or training
  • Limited social opportunities with a desire for
    friendship and low self esteem
  • Isolation and lack of social supports
  • Lack of appropriate preventative education

Personal Care Plans
  • Plan made with the individual to document their
    preferences regarding what kind of personal care
    help they want, from whom, etc
  • Help establish expected boundries
  • May help identify violations of boundries
  • For more information

Human Papilloma Virus and Cervical Cancer
  • 98 of cervical cancer is associated with high
    risk HPV subtypes
  • HPV acquisition risk goes up with number of
    sexual contacts
  • Cant assume that the DD patient has not had
    sexual exposure (no matter how much you are
    reassured by care providers/parents)

  • Recommended starting 3 years after first sexual
    exposure (or age 21 whichever comes first)
  • For DD population first sexual exposure could be
    at a very young age due to sexual abuse
  • The future HPV vaccine (Gardsil) will
    drastically reduce risk of cervical cancer (78
    protection from cervical cancer predicted due to
    inclusion of HPV types 6, 11, 16, 18). Note
    Must get vaccine BEFORE exposure for it to be
    protective (but can protect against other
    subtypes even after exposure to one or more
  • Weigh the risks/benefits with the
  • Consider vaccinating the DD population at the
    earliest age (age 9)

Phenylketonuria (PKU) and pregnancy
  • Individuals with PKU can have normal offspring IF
    Phenylalanine (phe) LEVEL IS CAREFULLY MONITORED
  • Do NOT overlook this important issue for females
    of child bearing age with PKU
  • Adults with PKU should have phe monitored for
    life (to preserve their intellectual function)

Anti-epileptic Drugs (AEDs) and Pregnancy
  • Contrary to what a female with epilepsy on AEDs
    may have been told There IS A RISK OF
  • The incidence of fetal hydantoin syndrome is 10
    (33 of offspring will have some effects of the
    disorder). No dose response curve/no safe dose
  • Similar features seen with phenobarb,
    carbamazepine, mysoline (anticonvulsant
  • Combination therapy carries a greater risk.
  • Fetal Valproate syndrome identified in 1982
  • Make sure your potential Moms on AED know that
    there is a real and present danger!

  • Increased in all individuals with Down syndrome
    (check TSH in all patients, starting at 6 months,
    then age 1, then yearly)
  • Increased in females more than males in the
    general population. Consider screening all DD
    females over age 50 (especially if they have
    changes in energy levels or other non-specific
  • AEDs decrease T4 but not clinically significant
    so you dont need to worry about the interaction
    (TSH remains in the normal range due to increase
    conversion to T3).

Breast Cancer
  • Clinical exam and self-exam are usually not
    capable of detecting breast cancer less than 1
  • 1 cm is the magic cut-off for a significant
    increase in mortality from breast cancer.
  • Try to get mammograms on females over 40.
  • Try even harder if there is a positive family
    history of breast cancer
  • Ultrasound is generally not used for diagnosis
    but is helpful if there is a question of cyst
  • Consider going straight to biopsy for worrisome
    palpable lesions (consult your local radiologist)

  • Taking AEDs dramatically increases the risk of
  • So does physical inactivity which is rampant in
    the DD population.
  • Get DEXA scans on patients with any unexpected
    fractures (i.e., resulting from mild trauma)
  • Make sure all individuals with DD have adequate
    vitamin D/Calcium intake.
  • For post-menopausal females, consider
    bisphosphanates, SERMs.

Testicular cancer
  • Yearly testicular exam for males between the ages
    of 14-39 (most testicular cancer occurs in
    patients 20-39)
  • Usually presents with painless mass
  • Explain the process to the patient and involve
    them in the exam if appropriate
  • Ultrasound (painless procedure) is used for
    initial evaluation

Prostate Cancer
  • Standard recommendations DRE and PSA yearly
    starting at age 50 or if symptoms occur
  • Start at 45 if in a high risk group
    (African-American, family hx of one or more first
    degree relatives with prostate ca before age 45)
  • Digital rectal exam may be difficult
  • Can use PSA screening but realize
  • Deciding what to do about intermediate value PSA
    levels is tricky (tendency to overtest and
  • No consensus about the utility of PSA
    measurements (still has not been definitively
    proven to prolong life)

Colon Cancer
Lung Cancer
Osteoporosis secondary to AEDs
  • Osteoporosis much more common in post-menopausal
    women but also occurs in men
  • Risk factors for Osteoporosis AED use, sedentary
    lifestyle, smoking
  • Older AEDs double the risk of osteoporosis
    (phenytoin, primidone, phenobarb, carbamazepine,
    valproic acid).
  • Not yet known if the newer AEDs have the same
    effect (probably best to just assume that they do
    until proven otherwise)

  • Supplement with vitamin D (400IU/day for
    prevention, may need 2000-4000IU for individuals
    with established bone disease)
  • DEXA scans for any male with low impact fracture
  • Consider screening DEXA at age ? for individuals
    with lifelong history of epilepsy.
  • Measure Testosterone in any male with
    osteoporosis (supplement if low).
  • Standard treatment options bisphosphanates,

Sexual Abuse
  • Just a reminder that males are also frequent
    victims of sexual abuse (estimated at 16 in the
    non-DD population)
  • Frequency in the DD population is unknown but
    likely to be much higher (estimated as high as
  • Sexual prediators locate themselves around places
    where they have easy access to potential victims
  • Dont overlook this possibility

Obstructive Sleep Apnea
  • More common in males than females
  • Risk factors obesity, older age, floppy muscle
  • Symptoms Non-restorative sleep, hypersomnolence
  • Associated health problems Hypertension
  • Diagnosis sleep study
  • Treatment
  • CPAP/Bi-PAP (may not be well tolerated in DD
  • Oral appliances
  • Surgery (UVPPP or jaw advancement procedures0

Other health care issues common to males and
females with DD
  • Higher incidence of mood disorders in individuals
    with DD
  • Studies in clinic populations suggest up to 50
  • Incidence of behavioral/psychiatric issues in
    individuals with epilepsy is increased 4 fold

  • Never assume that a change in behavior is due to
    a psychiatric issue until you have carefully
    looked for a physical and/or an environmental

Cautionary Tale
  • Death of a 45 yo patient with Down syndrome from
    ischemic bowel that perforated
  • Patients downhill slide was thought to be due
    to early Alzheimers dementia
  • GI work-up had been started (Abdominal CT was
    negative) but connection wasnt made until too
  • Look carefully and keep looking

Diabetes in DD
  • Higher incidence of Diabetes due to a combination
    of factors
  • physical inactivity one study showed fitness
    level in MR similar to cardiac patients
  • use of atypical antipsychotics most cause
    significant weight gain and hyperglycemia
  • poor dietary habits
  • Obesity 1/3 of general population overweight
    compared with ½ of DD population (women more
    overweight than men, people with mild MR more
    overweight than people with severe MR)

Treatment of Diabetes
  • Use the same goals as for individuals without a DD

A quick plea to promote dental care for DD
  • Although teeth are not given much attention in
    medical school, dental care DOES affect health in
    many ways (some obvious, some not)
  • Evidence exists that periodontal disease causing
    bacteria increase the risk of premature delivery,
    heart disease, nursing home acquired pneumonia,
    brain abscesses, endocarditis and worsen diabetes
  • Obvious effects on mastication, nutrition,
    behaviors (due to pain)
  • Check out and
  • Recommend xylitol gum (decreases bad oral
    bacteria), xylitol sweetner, Listerine, Colgate
    total toothpaste (with Triclosanantibacterial)

Dental exams
  • Many regional centers have dental coordinators to
    teach dental hygiene, conduct screenings and
    arrange dental work (in office or in hospital)
  • Many individuals with DD can be desensitized to
    dental exams, cleanings, repair
  • If unable to cooperate, there are other options…

(No Transcript)
The Dental exam under anesthesia
  • A golden opportunity for complex dental repair
  • Can also obtain blood draws and perform other
    procedures for patients who are unable to
  • Most anesthesiologists and dentists will allow
    appropriate health care personnel to come in to
    the OR to do a pap, trim toe nails, biopsy a skin
    lesionwhatever needs to be done (as long as you
    dont slow them down too much)

Other ideas for making medical procedures more
tolerable for DD patients
  • Minimally invasive monitoring
  • Use finger or wrist blood pressure monitors
    instead of arm cuffs (some info is probably
    better than no info)
  • Choose a lancet system for blood sugar monitoring
    that hurts less
  • Home health nurses might be more successful at
    obtaining samples of getting measurements (avoids
    the stress of the doctors office)
  • Train family members to check blood pressure,
    blood sugar, etc
  • Consider testing while patient is asleep
  • Non-invasive monitoring
  • Saliva tests currently available for HIV, drug
    testing. Who knows what the future will hold?
  • Urine tests for
  • STDs (GC, chlamydia)
  • Glucose monitoring (crude but thats how they
    used to do it before glucometers)
  • Anyone have any tricks that you want to share ?

Menstrual Cycles
  • Often starts later than usual in females with DD
    (probably does not require an endocrinology
  • Most females with DD will menstruate.
  • Anticipation of menstruation often freaks out the
    parents/care providers for DD individuals

A few last words
  • Remember, each patient is an individual.
  • Care must be individualized.
  • All you can do is to do your best.
  • Your best is much better than the care that many
    individuals with DD are currently receiving.
  • Thank you for all that you do for individuals
    with DD.

Other resources
  • Prater C and Zylstra R. Medical Care of Adults
    with Mental Retardation. American Family
    Physician 200612 2175-2183. (Paper included
    following the lecture notes)
  • National Womens Health Information Center  
    Women with disabilities website   Information, resources and
    news for providers, women with disabilities and

Management of menstrual disorders
  • Suggest keeping a diary of timing of cycles and
    any symptoms that may occur with the cycles
    (pain, irritability, irregular cycles)
  • If cycles are distressing, consider IM depot
    medroxyprogesterone acetate but remember DMPA
    can cause mood disturbances that are not easy to
    identify in patients that cant articulate their
  • Hysterectomy is an option for the older female
    with menstrual problems that are unresponsive to
    hormonal treatment.

Menopause Issues
  • Perimenopause and menopause often associated with
    vasomotor symptoms (hot flashes), sleep
    disturbances, mood disturbances, vaginal dryness,
  • Consider a trial of OCPs or estrogen
    supplementation if symptoms bothersome (and the
    increased risk of thrombosis is carefully
  • Must use progesterone with estrogen if the woman
    has an intact uterus.
  • Estrogen patches have less risk of thromboembolism

  • Normalize the process
  • Females have been dealing with this issue since
    the human race began
  • If the care provider reacts with calm, so will
    the individual
  • Give the adolescent as much responsibility for
    the management of the menstrual cycle as she can
  • Normalize, normalize, normalize

Birth Control
  • The days of forced sterilization are over (do not
    even consider itit aint right ).
  • Individuals with MR, seizure disorders, CP are
    human beings with normal sexual urges. EDUCATION
    IS CRUCIAL (self-advocacy programs available
    through many Regional Centers)
  • Discuss birth control with the patient and
    parent/care provider.
  • Multiple options (same as for individuals without