ࡱ> g( / 0DArialngspԫLv 0( 0DTahomagspԫLv 0( 0 DWingdingspԫLv 0( 0 a .  @n?" dd@  @@`` 0(95**      !"#$%&'()*+,-./012345 0AA@8wʚ;ʚ;g40d0dv 0ppp@ <4dddd` 0Lԩ <4!d!d 0L80___PPT10  b:Where are We in Providing Evidence-Based Health Promotion?;;$mWendy M. Nehring, RN, PhD, FAAMR Moderator and Members of the Health Promotion and Prevention Committee, AAMRnn ^Initial National ConferenceImpetus: Surgeon General s Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation (2002). CDC s Healthy People 2010, Chapter 6, Disability and Secondary Conditions (2000). AAMR s Health Promotion for Persons with Intellectual/Developmental Disabilities: The State of Scientific Evidence (6/1/04)`Q  ^Ck vSteps in the ProcessCommittee meetings Determination of topics and speakers Grant writing Collection of articles Conference Planning Meeting (Nov, 2003) Writing Presentation and Conference Proceedings Hypertension  Christopher C. Draheim, Ph.D., University of Minnesota(F(6 (!Hypertension in Persons with MR/DD  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 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 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 $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 Obesity  Linda Bandini, RD, PhD, Eunice Kennedy Shriver Center and UMASS Medical School(Y (N (BPrevalence 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  B  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 MR Lack of data on morbidity Lack of data on factors associated with development of obesity     Obesity cont."Studies on the prevalence of obesity are limited but suggest that obesity is a significant problem in both children and adults with MR/DD Look at disease risk, criteria for identifying overweight and obesity, representative studies, longitudinal studies, and effective intervention programs Respiratory Health in Adults  Justine Joan Sheppard, PhD, CCC/SLP, BRS-S2J (*(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, x? "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 *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; (e) professional and carer training; and (f) medications ingestion.* Feeding/Swallowing Disorders in Children  Maureen A. Lefton-Greif, PhD, CCC-SLP, BRS-S, John Hopkins Medical Centers(v*$(K6 4Gastrostomy 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 problemsZH $  h 5"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?IZIEpilepsy  David Coulter, MD, Boston Children s Hospital, Harvard Medical SchoolQ (F bDoes antiepileptic drug efficacy differ for persons with DD and epilepsy compared to persons with epilepsy and no DD? Do adverse effects of antiepileptic drugs differ for persons with DD and epilepsy compared to persons with epilepsy and no DD? Do persons with DD and epilepsy have more mental health problems compared to persons with DD and no epilepsy?ccEpilepsy cont.\Does adaptive or social functioning differ for persons with DD and epilepsy compared to persons with DD and no epilepsy? Does mortality differ for persons with DD and epilepsy compared to persons with DD and no epilepsy? Do the types and frequency of injuries differ for persons with DD and epilepsy compared to persons with DD only? (no data here)]]Epilepsy ConclusionsNo class I/II data on efficacy in DD Limited data on adverse effects in DD No difference in MH rates Conflicting data on adaptive and social functioning Increased mortality for ID plus epilepsy No data on injuriesMental Health  Betsey Benson, PhD, Nisonger Center, Ohio State UniversityK(; $What is the prevalence of co-occurring mental illness in MR/DD? What are the diagnostic issues? What is the evidence for the effectiveness of psychotherapy? What evidence is there for the effectiveness of psychotrophic medications? Mental Health ConclusionsMostly level I and II studies Rapid and significant effects for aggressive and disruptive behaviors Safe and effective, low risk EPS, but monitor weight gain Not for  core symptoms of autism Combine with other interventions/NIH Workshop on Emotional and Behavioral Health00(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 ChicagoI(5 )64 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.`Z`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.dLevel 1 components: aerobic, body composition, muscular strength, barriers, psychosocial, and speed.`Physical Activity  Recommendations for Research11(More RCTs to develop Category A evidence More Studies addressing specific secondary conditions and/or specific disabilities Longitudinal studies with long-term follow-up and/or maintenance Studies addressing the current inconsistent data (e.g., BMD, BP, balance)ZAccess to Health Care  Sheryl Larson, PhD, Lynda Anderson, PhD, and Robert Doljanac, PhD, University of Minnesota, RTC on Community Living( (tL8To what extent do people with ID have access to needed health and dental care? What health care outcomes do people with ID experience? What are the barriers to accessing health and dental care for people with ID?!Access to Health Care Conclusions""( (Reproductive Health Care  Sheryl White-Scott, MD, FACP, St. Charles Developmental Disabilities Program, St. Vincent s Catholic Medical Center of NY((zBarriers 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 RWomen s 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 healthm!0Women s Health - SummaryMajor gaps exist in the current literature on reproductive health Small sample sizes and lack of control groups were limitations in many studies Limited scientific evidence to base guidelines and recommendations for practice"<Women s 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 Need for researchers, clinicians, persons with I/DD and family members to identify research questions, research designs, and priorities (ie, guidelines and clinical practice)[[5$#Violence and Disability  Dick Sobsey, EdD, University of AlbertaBB(,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.Z$ 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.%!Case Management/Care Coordination  Ruth Northway, RNMH, ENB 805, Cert Ed., MSc, PhD, University of Glamorgan(n# (J,L EWhat 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?FF>&"Case Management cont.How 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, and (b) nurse practitioners combining clinical and care coordination roles can have a positive impact.($Case Management - ChallengesProblems of definition Problems of heterogeneous population and the need to examine the specific effects on subgroups Problems of investigating impact on primary prevention Problems of developing appropriate methodologies)%Complementary and Alternative Medicine  Edward Hurvitz, MD, University of Michigan, Ann Arbor_)(6 0(Which forms of CAM, if any, have beneficial effects for ID individuals? What is the evidence for commonly used forms, e.g., orthomolecular diet for DS or art/music therapy? What are the important future directions for research and treatment?*& CAM continuedNAlternative medical systems  Chinese medicine, homeopathy, Aryuveda. Mind-body interventions  music therapy, art therapy, relaxation, meditation, light therapy, and biofeedback. Biological-based therapies  orthomolecular therapy in DS, B6 and magnesium in autism, herbal therapies, and sleep.(Z(<+' CAM cont. Manipulative and body based methods  chiropractic, osteopathic manipulation, massage (no studies). Energy fields  therapeutic touch.,( CAM cont.^What is the placebo effect in persons with ID? What is CAM so attractive? Are we open-minded? ^_-)Substance Abuse/Tobacco  Paula Minihan, PhD, MPH, Tufts University School of Medicine(W$(=  0Substance 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, (c ) use in different social contexts, and (d) also use multiple substances. 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.Z!z/+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. @Z@,Bm0,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.Z1-TobaccoNo 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. 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&՜.+,0     On-screen ShowHomeree93 7ArialTahoma WingdingsBalance;Where are We in Providing Evidence-Based Health Promotion?Initial National ConferenceSteps in the ProcessFHypertension Christopher C. Draheim, Ph.D., University of MinnesotaHypertension cont.Hypertension cont.%Hypertension cont. - RecommendationsYObesity Linda Bandini, RD, PhD, Eunice Kennedy Shriver Center and UMASS Medical SchoolObesity cont.Obesity cont.JRespiratory Health in Adults Justine Joan Sheppard, PhD, CCC/SLP, BRS-S#Respiratory Health in Adults cont.+Respiratory Health in Adults - ConclusionsvFeeding/Swallowing Disorders in Children Maureen A. Lefton-Greif, PhD, CCC-SLP, BRS-S, John Hopkins Medical Centers#Feeding Problems in Children cont.QEpilepsy David Coulter, MD, Boston Childrens Hospital, Harvard Medical SchoolEpilepsy cont.Epilepsy ConclusionsKMental Health Betsey Benson, PhD, Nisonger Center, Ohio State UniversityMental Health Conclusions0NIH Workshop on Emotional and Behavioral HealthIPhysical Activity James Rimmer, PhD, University of Illinois at ChicagoPhysical Activity cont.Physical Activity cont.1Physical Activity Recommendations for ResearchAccess to Health Care Sheryl Larson, PhD, Lynda Anderson, PhD, and Robert Doljanac, PhD, University of Minnesota, RTC on Community Living"Access to Health Care ConclusionsReproductive Health Care Sheryl White-Scott, MD, FACP, St. Charles Developmental Disabilities Program, St. Vincents Catholic Medical Center of NY*Womens Health Care cont.- Research NeedsWomens Health - SummaryWomens Health Summary cont.BViolence and Disability Dick Sobsey, EdD, University of AlbertaViolence cont.nCase Management/Care Coordination Ruth Northway, RNMH, ENB 805, Cert Ed., MSc, PhD, University of GlamorganCase Management cont.Case Management - SummaryCase Management - Challenges_Complementary and Alternative Medicine Edward Hurvitz, MD, University of Michigan, Ann ArborCAM continued CAM cont. 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