Title: 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
5 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
7 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
9 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)
11 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
12 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)
Parotid salivary immunoglobulins
GERD and rumination
Assessment for eating disorders
13 Respiratory Health in Adults cont.
Eating and drinking care giver knowledge and compliance with mealtime strategies
Position for eating and arterial oxygen saturation
Energy expenditure in tube fed adults
Effectiveness of an oral hygiene program
14 Dysphagia Questions
What categories of feeding and swallowing interventions were reported for individuals with ID
What evidence supports the reported interventions
15 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.
16 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
17 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
19 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)
20 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
21 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.
22 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.
23 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
24 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.
25 NIH Workshop on Emotional and Behavioral Health
Recommendations for epidemiology diagnosis and assessment interventions research ethical considerations research design and research training needs.
26 Physical Activity James Rimmer PhD University of Illinois at Chicago
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
27 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.
28 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.
29 Physical Activity cont.
Level 1 components aerobic body composition muscular strength barriers psychosocial and speed.
30 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.
31 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 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
Lack of continuity of care
35 Review Questions
Review questions centered on four categories
Contraception and gynecological issues
36 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.
37 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
38 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)
39 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.
Possibility that spousal violence in pregnancy causes ID
Violence against people with ID a major problem.
41 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
44 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.
45 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
46 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.
47 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
48 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.
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.
51 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
53 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.
55 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 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.
57 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.
59 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.
60 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.
61 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.
62 Theoretical Applications cont.
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.
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
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