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Reducing Disparities for People with DD by Improving the Quality of Health Care


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Title: Reducing Disparities for People with DD by Improving the Quality of Health Care

Reducing Disparities for People with DD by
Improving the Quality of Health Care
  • Wendy M. Nehring, RN, PhD, FAAN, FAAIDD
  • College of Nursing
  • Rutgers, The State University of New Jersey

National Efforts to Bring Attention to Health
Disparities in Persons with Intellectual
  • CDCs Healthy People 2010, Chapter 6, Disability
    and Secondary Conditions (2000).
  • The health status and needs of individuals with
    mental retardation (Horwitz, Kerker, Owens,
    Zigler, 2000).
  • Promoting health for individuals with mental
    retardation A critical journey barely begun
    (Special Olympics, Inc., 2001).
  • Surgeon Generals Closing the Gap A National
    Blueprint to Improve the Health of Persons with
    Mental Retardation (2001).
  • Keeping the promises. Findings and
    recommendations January 2003 invitational
    conference (Arc of the United States, 2003).
  • AAMRs Health Promotion for Persons with
    Intellectual/Developmental Disabilities The
    State of Scientific Evidence (6/1/04)

Hypertension Christopher C. Draheim, Ph.D.,
University of Minnesota
  • Hypertension in Persons with ID US and non-US
    studies, specific conditions
  • Lifestyle modification research (e.g., weight
    reduction, DASH eating plan, dietary sodium
    reduction, physical activity, use of alcohol)

Hypertension Questions
  • Is there a high prevalence of hypertension in
    persons with ID?
  • If so, who has the greatest risk for (or greatest
    prevalence of) hypertension?
  • What are the recommended health promotion
    strategies to prevent or treat hypertension and
    what are the non-pharmacological treatments for
  • Is there evidence that supports the recommended
    treatments for persons with ID?
  • What is the evidence of these recommendations in
    persons with ID?

Hypertension cont.
  • Hypertension rates appear to be similar to
    general population
  • Preliminary evidence supports JNC-7
    recommendations for lifestyle modifications
  • Lack of substantive research findings
  • No true population sampling
  • Hypertension not defined

Hypertension cont.
  • Blood pressure not assessed with other CVD risk
  • Lack of evidence in health promotion, lifestyle
    modifications, and medication use
  • Activity and diet programs used in research not
    specifically designed to treat hypertension

Hypertension cont. - Recommendations
  • Follow JNC-7 guidelines for treatment
  • Educate individuals and care providers on
  • Lifestyle modifications can be used for
    prevention with similar challenges as the general
    population and motivation strategies
  • Be aware of medication interactions

Obesity Linda Bandini, RD, PhD, Eunice Kennedy
Shriver Center and UMASS Medical School
  • Prevalence of overweight in persons with MR (age,
    gender, living situation, and levels of
  • Disabilities associated with overweight and
    obesity (e.g., DS, SB, and Prader-Willi)
  • National surveys and prevalence of obesity in
    children with MR

Obesity Questions
  • What is the prevalence of obesity in persons with
  • What factors are associated with obesity in
    persons with MR?
  • What is the prevalence of obesity in persons with
    Down syndrome, Prader-Willi syndrome, and spina
  • What are the factors associated with obesity in
    persons with Down syndrome?

Obesity cont.
  • Level of evidence is low 3-4
  • Lack of statistical analysis
  • Variable criteria to identify obesity among
  • Secular trends in obesity prevalence
  • Inconsistent classification of MR
  • Lack of data on morbidity
  • Lack of data on factors associated with
    development of obesity (e.g., diet and physical

Obesity cont.
  • Studies on the prevalence of obesity are limited
    but suggest that obesity is a significant problem
    in both children and adults with ID
  • Look at disease risk, criteria for identifying
    overweight and obesity, representative studies to
    examine prevalence and factors associated with
    obesity, longitudinal studies, and factors
    related to effective intervention programs

Respiratory Health in Adults Justine Joan
Sheppard, PhD, CCC/SLP, BRS-S
  • Clinical presentation for dysphagia in adults
    with I/DD (e.g., signs and symptoms, nutritional
  • Aspiration
  • Esophageal dysfunction
  • Parotid salivary immunoglobulins
  • GERD and rumination
  • Ingestion
  • Assessment for eating disorders

Respiratory Health in Adults cont.
  • Eating and drinking, care giver knowledge and
    compliance with mealtime strategies
  • Managing nutrition
  • Position for eating and arterial oxygen
  • Energy expenditure in tube fed adults
  • Effectiveness of an oral hygiene program

Dysphagia Questions
  • What categories of feeding and swallowing
    interventions were reported for individuals with
  • What evidence supports the reported interventions?

Respiratory Health in Adults - Conclusions
  • Evidence base is sparse for (a) disorders in
    swallowing behaviors (b) related, high
    prevalence respiratory, GI and nutritional
    problems (c ) prevention (d) daily management
    and participation (including specific therapies)
    (e) professional and carer training (f)
    medications ingestion (g) risk management and
    (h) treatment efficacy.

Feeding/Swallowing Disorders in Children
Maureen A. Lefton-Greif, PhD, CCC-SLP, BRS-S,
John Hopkins Medical Centers
  • Gastrostomy versus oral feeding
  • Treatment with gastrostomy tubes
  • Tubefeeding and morality in children
  • Living with cerebral palsy and tube feeding
  • Caregivers perceptions following gastrostomy in
    severely disabled children with feeding problems

Feeding Problems in Children cont.
  • Limited information on impact of
    feeding/swallowing problems with age and
  • Sparse information on treatment
  • Limited by lack of consistent use of terminology
  • Which interventions work best?
  • What happens when children with
    feeding/swallowing problems or the consequences
    of early problems develop adult onset disorders?

Epilepsy David Coulter, MD, Boston Childrens
Hospital, Harvard Medical School
  • Does antiepileptic drug efficacy differ for
    persons with ID and epilepsy compared to persons
    with epilepsy and no ID?
  • Do adverse effects of antiepileptic drugs differ
    for persons with ID and epilepsy compared to
    persons with epilepsy and no ID?
  • Do persons with ID and epilepsy have more mental
    health problems compared to persons with ID and
    no epilepsy?

Epilepsy cont.
  • Does adaptive or social functioning differ for
    persons with ID and epilepsy compared to persons
    with ID and no epilepsy?
  • Does mortality differ for persons with ID and
    epilepsy compared to persons with ID and no
  • Do the types and frequency of injuries differ for
    persons with ID and epilepsy compared to persons
    with ID only? (no data here)

Epilepsy Conclusions
  • No class I/II data on efficacy in ID (e.g.,
    American Academy of Neurology review of
    scientific evidence of 7 antiepileptic drugs,
    French et al., 2004)
  • Limited data on adverse effects in ID
  • No difference in MH rates
  • Conflicting data on adaptive and social
  • Increased mortality for ID plus epilepsy
  • Scant data on injuries

Future Research Considerations for Persons with
ID and Epilepsy
  • How applicable are studies in patients with
    epilepsy alone for patients with epilepsy and ID?
  • Conduct well-designed randomized clinical trials
    of antiepileptic drugs.
  • Comparative studies that evaluate relatively
    equivalent drugs and treatments would assist
    clinicians to select safest and most efficacious

Research cont.
  • How best to define the population of persons with
    ID and epilepsy.
  • Conduct cost-benefit studies of newer
    antiepileptic drugs in comparison to older drugs.
  • Need to examine ways to manage risk, reduce
    seizure-related injuries, and promote social and
    adaptive functioning.

Mental Health Betsey Benson, PhD, Nisonger
Center, Ohio State University
  • What is the prevalence of co-occurring mental
    illness in MR/DD? 10-40
  • What are the diagnostic issues?
  • Ability to participate in interviews, quality
    of the informant report, and criteria for dx be
    changed due to limitations in verbal report.
  • What is the evidence for the effectiveness of
  • What evidence is there for the effectiveness of
    psychotrophic medications?

Mental Health Conclusions
  • Mostly level I and II studies
  • Rapid and significant effects for aggressive and
    disruptive behaviors from Risperidone
  • Safe and effective, low risk EPS, but monitor
    weight gain
  • Not for core symptoms of autism
  • Combine with other interventions
  • Look at influence of cognitive functioning.

NIH Workshop on Emotional and Behavioral Health
  • December, 2001
  • Recommendations for epidemiology, diagnosis and
    assessment, interventions research, ethical
    considerations, research design, and research
    training needs.

Physical Activity James Rimmer, PhD, University
of Illinois at Chicago
  • Questions
  • What are the physical fitness and physical
    activity levels of adults with ID?
  • What are the physical fitness and physical
    activity levels of adults with ID compared to
    adults without ID?
  • What research has been performed on the physical
    fitness and physical activity levels of persons
    with ID?
  • What interventions have been shown to be
  • What are the gaps in the current knowledge and

Physical Activity cont.
  • 67 total studies descriptive (comparative and
    correlative) and intervention.
  • Mean age of participants 25 years
  • Components of descriptive studies aerobic, body
    composition, flexibility, muscular strength,
    muscular power, barriers, blood lipids, energy
    cost, gait, health status, residential setting,
    physical activity, and Special Olympics studies.

Physical Activity cont.
  • Comparative program components aerobic, physical
    activity, social integration, and psychosocial.
  • Intervention study components aerobic, body
    composition, flexibility, muscular strength,
    blood lipids, BMD, gait, physical activity,
    postural control, and problem solving.

Physical Activity cont.
  • Level 1 components aerobic, body composition,
    muscular strength, barriers, psychosocial, and

Physical Activity Recommendations for Research
  • Need for more RCTs, longitudinal, and prospective
    observational studies.
  • More studies addressing specific secondary
    conditions and/or specific disabilities,
    including lifestyle and environmental factors.
  • Need for development of more accurate assessment
  • Identify at-risk groups.
  • Four primary gaps in current knowledge regarding
  • The ability to draw conclusions about the
    relationship between physical activity/physical
    fitness and cardiovascular risk reduction and
    improvements in functional status in persons with
    ID is limited,
  • Unclear whether gains in cardiovascular fitness
    will translate into improvements in functional
  • Understanding how to increase exercise adherence
    among persons with ID, and
  • The balance between benefits and risks of aerobic
    exercise in persons with ID is not well

Access to Health Care Sheryl Larson, PhD, Lynda
Anderson, PhD, and Robert Doljanac, PhD,
University of Minnesota, RTC on Community Living
  • What factors are associated with community
    dwelling people with ID accessing preventive
    care, medical and dental care, and insurance?
  • To what extent are community dwelling people with
    ID satisfied with their health care?
  • How do people with ID and people who support them
    rate the quality of health care?
  • What are the consequences of inadequate access to
    health care?
  • What are the key unmet medical and dental needs
    of people with ID?
  • What barriers do people with ID experience in
    accessing medical and dental care?

  • The most frequently identified barriers related
    to attitudes and knowledge on the part of the
    health care providers, caregivers, and people
    with ID.
  • Challenges of deinstitutionalization (e.g.,
    systemic differences, lack of knowledge and
    experience by community health care providers,
    etc.), lack of preventive care and screenings,
    unmet medical needs (3.2-50), unmet mental
    health needs (1.2-27), unmet dental health
    needs (8.1-18), unmet prescription medication
    needs (4.4-36), unmet equipment needs
    (4.1-46), and undiagnosed/untreated dental,
    mental health, and health conditions.

  • Need to develop programs of health care literacy
    and advocacy for persons with ID and caregivers
  • Enhance the education of health care
  • Development of a health care advocate.
  • Need better understanding of barriers to health
    care access from persons with ID.
  • Federal and state health monitoring programs and
    surveys should increase their capability to
    identify and describe the health care needs of
    persons with ID.

Reproductive Health Care Sheryl White-Scott,
MD, FACP, St. Charles Developmental Disabilities
Program, St. Vincents Catholic Medical Center of
  • Barriers to health care for women with
  • Lack of knowledgeable providers
  • Adult oriented health system
  • Lack of coordination
  • Informed consent
  • Lack of continuity of care

Review Questions
  • Review questions centered on four categories
  • Cervical cancer
  • Contraception and gynecological issues
  • Sexuality

Womens Health Care cont.- Research Needs
  • Rates of incidence and prevalence for breast and
    cervical cancer, HIV/AIDS and other STDs.
  • Rates of contraceptive use, menstrual disorders
    and other gyn issues.
  • Effectiveness of treatment interventions,
    prevention and education programs for
    reproductive health, STDs, and sexuality.

Womens Health - Summary
  • Major gaps exist in the current literature on
    reproductive health
  • Small sample sizes, variables use of instruments,
    lack of statistical significance, and lack of
    control groups were limitations in many studies
  • Limited scientific evidence to base guidelines
    and recommendations for practice

Womens Health Summary cont.
  • Additional areas of interest screening for
    breast cancer, osteoporosis, menopause, screening
    for testicular and prostate cancer, and rates of
    STDs and treatment outcomes, sexual abuse, and
  • Need for researchers, clinicians, persons with
    I/DD and family members to identify research
    questions, research designs, and priorities (ie,
    guidelines and clinical practice)

Violence Dick Sobsey, EdD, University of Alberta
  • A strong association between violence and
  • To explain ALL the association between child
    abuse and DD, violence would have to be the cause
    of at least 25 of all DD.
  • The role of violence in this population is
  • An important etiological factor in all cases of

Violence cont.
  • Rethinking child abuse, shaken-infant survivors,
    post-traumatic stress
  • Possibility that spousal violence in pregnancy
    causes ID
  • Violence against people with ID a major problem.

Future Research Considerations
  • Prospective studies of child cohorts analyzed by
    age would help to identify early indicators of
    abuse and of disabilities and might help clarify
    whether maltreatment preceded or followed the
    emergence of disability.
  • Studies of maternal abuse of mothers during
    pregnancy need to follow low-birthweight and
    normal birthweight infants of abused and
    non-abused mothers over time to determine if ID
    emerge in these at-risk infants.
  • Long term studies of abuse rates in children
    whose ID can clearly be diagnosed and results
    form a non-violence related cause would help
    determine the association between violence and ID
    filtering out the effects of violence as an
    etiological factor.

Case Management/Care Coordination Ruth
Northway, RNMH, ENB 805, Cert Ed., MSc, PhD,
University of Glamorgan
  • What effect does care coordination have on the
    use of health care facilities by people with
  • What contribution does case management make to
    the care of people with MR/DD who also have
    mental illness?
  • What contribution can case management make to the
    health and well being of people with MR/DD and
    their families/carers?

Case Management cont.
  • Can effective and acceptable case management
    systems be developed?
  • What impact does managed care have on the health
    and well being of people with MR/DD?

Case Management - Summary
  • Research does suggest that (a) case management
    and care coordination can have a positive effect
    on the use of health care facilities and that
    they are generally valued by families, (b) nurse
    practitioners combining clinical and care
    coordination roles can have a positive impact,
    and (c ) case management is generally valued by

Case Management - Challenges
  • Problems of definition
  • Problems of heterogeneous population and the need
    to examine the specific effects (e.g., outcomes)
    on subgroups
  • Problems of investigating impact on primary
  • Problems of developing appropriate methodologies

Further Research Considerations
  • The impact of case management upon client health
  • The impact of case management upon key subgroups.
  • The views of persons with ID concerning their
    experiences with case management/care
    coordination/managed care.
  • Replication of some current studies.
  • Development of multi-center and possibly
    multi-national studies.
  • Impact of managed care on health care services
    for persons with ID.

Complementary and Alternative Medicine Edward
Hurvitz, MD, University of Michigan, Ann Arbor
  • What methods of CAM seem to have the most and
    best evidence of efficacy?
  • Which common symptoms were responsive to CAM
  • Where would be the most fruitful areas for future
    study, based on the current literature?
  • Are there aspects of CAM that should be
    incorporated into the more standard care of
    individuals with ID to improve their overall
    quality of life?

Forms of CAM
  • Alternative medical systems Chinese medicine,
    homeopathy, Aryuveda.
  • Mind-body interventions music therapy, art
    therapy, relaxation, meditation, light therapy,
    and biofeedback.
  • Biological-based therapies orthomolecular
    therapy in DS, B6 and magnesium in autism, herbal
    therapies, and sleep.

CAM cont.
  • Manipulative and body based methods
    chiropractic, osteopathic manipulation, massage
    (no studies).
  • Energy fields therapeutic touch.

  • For all forms of CAM modalities, none are
    supported by strong evidence of efficacy.
  • Relaxation therapy has some positive effects.
  • CAM treatment for sleep Melatonin, Valerian, and
    light therapy was found effective in the studies

Research Directions
  • Need for well-designed, double-blinded randomized
    control studies in CAM.
  • Look at satisfaction in CAM by persons with ID
    and their carers.

Substance Abuse/Tobacco Paula Minihan, PhD,
MPH, Tufts University School of Medicine
  • Substance abuse and the general population
    health and other impacts, prevalence
  • Substance abuse and people with I/DD appraisal
    of the evidence, magnitude of the problem,
    treatment issues, and prevention/education

Substance Abuse cont.
  • Compared with the general population, people with
    I/DD appear to (a) initiate use at older ages,
    (b) use at lower doses, and (c ) use less
  • No quantitative data on race and SES.
  • Information limited but some risk appear similar
    to gen pop male gender, father/siblings with SA
    histories, friends with alcohol/drug problems,
    and co-existing mental illness.

Substance Abuse cont.
  • Other risks appear specific to people with I/DD
    higher IQ, living in less restrictive settings.
  • People with I/DD, compared with the gen pop,
    appear to face higher risks of converting from
    users to misusers, encounter problems leading
    to treatment in shorter periods of time, and have
    remarkably low tolerances.

Substance Abuse cont.
  • Use and misuse by people with I/DD may
    exacerbate pre-existing medical conditions,
    interact negatively with medications, and
    increase risk of victimization, especially in
    drinking and drug-taking environments.
  • Evidence is not available to know if people with
    I/DD participate in SA treatment programs or if
    such treatment is effective.
  • Consensus is that people with I/DD should receive
    specialized programs with specific modifications.

  • No data on race, SES, family history, and peer
  • Other limited information suggests some risks are
    similar to population male gender, presence of
    co-existing psychiatric conditions, and misuse of
    other substances.
  • Other risks appear specific to people with I/DD
    living in the community and mild or borderlline
    levels of I/DD.

SA/Tobacco Conclusions
  • Although number of adults with I/DD who misuse
    psychoactive substances appear small, they
    experience same or greater negative consequences
    as other misusers and have much less access to
    treatment programs prepared to meet their needs.
  • Adolescents may be using substances at rates
    similar to the gen pop.
  • I/DD service systems are ignoring this problem.
  • Need for best practice recommendations.
  • Experts from SA and ID fields need to work
    together on future research.

Secondary Conditions Risk Appraisal for Adults
Tom Seekins, Meg Ann Traci, Donna Bainbridge,
Kathleen Humphries, University of Montana, Rural
Institute on Disabilities
  • There are few reported applications of health
    risk appraisal (HRA) to groups characterized by
    specific impairments that lead to ID.
  • Consider comprehensive risk factors
    physiological, environmental, and behavioral.
  • Proposed model that explores the effects of the
    environment, physiology, behavior risk and
    protective factors, and limitations due to
    secondary conditions on each other.

HRA cont.
  • Montana study Sample of 1920 adults (749 surveys
    were by proxy), mean age 43.5 years (range
    16-93). Approximate equal distribution between
    males (55) and females (45).
  • Looked at physical activity, nutrition, oral
    hygiene, personal hygiene and appearance, tobacco
    and alcohol use, medications, sexual activity and
    abuse, changes in living environments, exposure
    to toxic agents, service and support quality,
    assistive aids, and transportation.

HRA cont.
  • Physical activity, diet and weight, and oral
    hygiene appear to be three behavioral risk
    factors of potential significance.
  • Type of living situation or change in living
    situation is an environmental variable that may
    pose risks.
  • Improve health education, health promotion, and
    health outcomes structured system of secondary
    conditions risk appraisal can assist in
    individual habilitation planning process.
  • Develop cost-effectiveness studies on
    intervention programs based on HRA.
  • Examine the variation in risk profiles and
    outcomes across impairment groups and living
  • Develop standards.

Theoretical Applications Mary Cerreto, PhD,
Boston University Medical Center
  • Provided an overview of the definition of theory
    and theoretical frameworks.
  • Reviewed use of theoretical frameworks in health
    research involving persons with I/DD.
  • Majority of the studies were not intervention

Theoretical Applications cont.
  • Theories found
  • Mediated Model of Health and Wellness for People
    with Disabilities
  • Transtheoretical Model of Behavior Change
  • Social Learning Theory
  • Antonovskys Sense of Coherence
  • Reformulated Learned Helplessness Model
  • Penders Health Promotion Model
  • Precaution Adoption Process Model
  • Information-Motivation-Behavioral Skills Model

Can You Really Be Healthy As a Person with a
Disability? Teresa Moore and Juliana Huerena
  • Health care providers not viewing health concerns
    as legitimate, rather a factor of the disability.
  • The importance of learning health literacy and
    becoming your own health advocate.
  • To understand their dx and health care needs,
    including secondary conditions and normal aging
  • How to work with different health care
  • How to work with staff and caregivers to be more
  • How to take care of themselves,
  • How to cope with new and current dx,
  • Understand their bodies and when something is
    wrong with them and how to seek help,
  • Understand their medications and why they need to
    take them, and
  • How to prevent secondary conditions from
    occurring or getting worse.

  • There must be educational materials available, in
    understandable language, to inform persons with
    ID about
  • Healthy development across the lifespan,
  • What health prevention measures are appropriate
    for their age,
  • How to ask questions of family members to learn
    about family health problems,
  • How to begin an exercise program and what types
    of exercise are good for you,
  • How to find a doctor and other health
    professionals that will know how to take care of
  • How to get transportation to and from your home,
  • Signs and symptoms of depression or other MH
  • How to deal with a fire, bad weather, or other
  • The need not to smoke or use drugs.

Where do we go from here?
  • Future directions for the field of ID
  • Future directions for the health of all