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

1
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

2
National Efforts to Bring Attention to Health
Disparities in Persons with Intellectual
Disabilities

• 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)

3
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)

4
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
  hypertension?
• Is there evidence that supports the recommended
  treatments for persons with ID?
• What is the evidence of these recommendations in
  persons with ID?

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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

6
Hypertension cont.

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

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Hypertension cont. - Recommendations

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

8
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
  retardation)
• Disabilities associated with overweight and
  obesity (e.g., DS, SB, and Prader-Willi)
• National surveys and prevalence of obesity in
  children with MR

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Obesity Questions

• What is the prevalence of obesity in persons with
  MR?
• 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
  bifida?
• What are the factors associated with obesity in
  persons with Down syndrome?

10
Obesity cont.

• Level of evidence is low 3-4
• Lack of statistical analysis
• Variable criteria to identify obesity among
  studies
• 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
  activity)

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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

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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
  factors)
• Aspiration
• Esophageal dysfunction
• Parotid salivary immunoglobulins
• GERD and rumination
• Ingestion
• Assessment for eating disorders

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Respiratory Health in Adults cont.

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

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Dysphagia Questions

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

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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.

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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

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Feeding Problems in Children cont.

• Limited information on impact of
  feeding/swallowing problems with age and
  development
• 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?

18
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?

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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
  epilepsy?
• Do the types and frequency of injuries differ for
  persons with ID and epilepsy compared to persons
  with ID only? (no data here)

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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
  functioning
• Increased mortality for ID plus epilepsy
• Scant data on injuries

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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
  medications.

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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.

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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
  psychotherapy?
• What evidence is there for the effectiveness of
  psychotrophic medications?

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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.

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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.

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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
  effective?
• What are the gaps in the current knowledge and
  research?

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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.

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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.

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Physical Activity cont.

• Level 1 components aerobic, body composition,
  muscular strength, barriers, psychosocial, and
  speed.

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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
  tools.
• Identify at-risk groups.
• Four primary gaps in current knowledge regarding
  dose-effectiveness
• 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
  status,
• 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
  understood.

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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?

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Results

• 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.

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Recommendations

• Need to develop programs of health care literacy
  and advocacy for persons with ID and caregivers
  respectively.
• Enhance the education of health care
  professionals.
• 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.

34
Reproductive Health Care Sheryl White-Scott,
MD, FACP, St. Charles Developmental Disabilities
Program, St. Vincents Catholic Medical Center of
NY

• Barriers to health care for women with
  disabilities
• Lack of knowledgeable providers
• Adult oriented health system
• Lack of coordination
• Informed consent
• Lack of continuity of care

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Review Questions

• Review questions centered on four categories
• Cervical cancer
• Contraception and gynecological issues
• HIV/AIDS
• Sexuality

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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.

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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

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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
  fertility.
• Need for researchers, clinicians, persons with
  I/DD and family members to identify research
  questions, research designs, and priorities (ie,
  guidelines and clinical practice)

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Violence Dick Sobsey, EdD, University of Alberta

• A strong association between violence and
  disability.
• 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
  underestimated.
• An important etiological factor in all cases of
  MR.

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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.

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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.

42
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
  MR/DD?
• 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?

43
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?

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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
  families.

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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
  prevention
• Problems of developing appropriate methodologies

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Further Research Considerations

• The impact of case management upon client health
  outcomes.
• 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.

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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
  modalities?
• 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?

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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.

49
CAM cont.

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

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Findings

• 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
  reviewed.

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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.

52
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

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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
  frequently.
• 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.

54
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.

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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.

56
Tobacco

• No data on race, SES, family history, and peer
  influences.
• 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.

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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.

58
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.

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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.

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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
  arrangements.
• Develop standards.

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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
  studies.

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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

63
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
  changes,
• How to work with different health care
  professionals,
• How to work with staff and caregivers to be more
  healthy,
• 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.

64
Recommendations

• 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
  you,
• How to get transportation to and from your home,
• Signs and symptoms of depression or other MH
  problems,
• How to deal with a fire, bad weather, or other
  emergencies,
• The need not to smoke or use drugs.

65
Where do we go from here?

• Future directions for the field of ID
• Future directions for the health of all