Overview

1. Exercise Intervention Research on Persons with Disabilities - What We Know and Where We Need to Go. Professor James H. Rimmer, PhD; Director, National Center on Physical Activity and Disability, Department of Disability and Human Development, University of Illinois at Chicago, Chicago, IL, USA December 1, 2010 Olle Höök Lecture Swedish Society of Medicine Annual Meeting Goteborg, Sweden

2. Overview • Part 1: What we know • Evidence on exercise interventions and health outcomes • Characteristics of the exercise intervention • Part 2: Where we need to go • Identifying the problem • Finding ways to address it • Framing Future Research

3. Part 1: Point 1 What we know ~ The evidence on exercise interventions and health outcomes in persons with disabilities

4. Methods –Scoping Review at Abstract Level MEDLINE PsycInfo CINAHL • 1986~June 2006 • English language • Peer-reviewed journal • Adults with disabilities (18-65 yrs) • Subject headings related to disability population, health promotion interventions and health outcomes Searching Strategies N=3987 • Not health promotion related • Medically oriented treatment • Not disability related • Not peer reviewed • Outside age range • Outside publication year Exclusion Criteria Excluded 3657 Disability and Health Promotion Scoping Review Matrix (N=330) With Exercise Studies (N=135) • Nonspecific disability type • Non-health-related outcomes Exclusion Criteria • Rehab modality involved • Rehab techniques involved Exercise studies included in this review (N=80) Rimmer et al. (2010). Am J Phy Med & Rehab 89: 249-63

5. No. of Trials by Disability and Research Design(Total N=80) Non-RCT included pre- and post-trial (N=22), non-randomized controlled trial (N=16), case study (N=4), qualitative study (N=3), single subject design (N=2), and unavailable (N=1). Alz. Dis., Alzheimer’s disease; ; ALS, amyotrophic lateral sclerosis ;Mus. Dys., Muscular dystrophy; Parki. Dis., Parkinson’s disease Rimmer et al. (2010). Am J Phy Med & Rehab 89: 249-63

6. Health Outcomes Areas All-cause mortality Cardiorespiratory health Musculoskeletal health Metabolic health Energy balance & maintenance of healthy weight Cancer Functional health Mental health Physical Activity Guidelines for Americans-cont’d

7. Number of Studies by Disability Group and Subcategories in Functional Health Subcategory (N) AD, Alzheimer’s disease; ALS, amyotrophic lateral sclerosis; CP, cerebral palsy; Cross, cross disability; ID, intellectual disability; MD, muscular dystrophy; MS, multiple sclerosis; PD, Parkinson’s disease; STK, stroke; TBI, traumatic brain injury; QOL, quality of life

8. Number of Studies by Disability Group and Subcategories in Cardiorespiratory Health Subcategory (N) AD, Alzheimer’s disease; ALS, amyotrophic lateral sclerosis; CP, cerebral palsy; Cross, cross disability; ID, intellectual disability; MD, muscular dystrophy; MS, multiple sclerosis; PD, Parkinson’s disease; STK, stroke; TBI, traumatic brain injury; CR fitness, cardiorespiratory fitness

9. Number of Studies by Disability Group and Subcategories in Musculoskeletal Health Subcategory (N) AD, Alzheimer’s disease; ALS, amyotrophic lateral sclerosis; CP, cerebral palsy; Cross, cross disability; ID, intellectual disability; MD, muscular dystrophy; MS, multiple sclerosis; PD, Parkinson’s disease; STK, stroke; TBI, traumatic brain injury; BMD, bone mineral density; M. Strength, muscle strength

10. Number of Studies by Disability Group and Subcategories in Metabolic Health Subcategory (N) AD, Alzheimer’s disease; ALS, amyotrophic lateral sclerosis; CP, cerebral palsy; Cross, cross disability; ID, intellectual disability; MD, muscular dystrophy; MS, multiple sclerosis; PD, Parkinson’s disease; STK, stroke; TBI, traumatic brain injury; BMI, body mass index

11. Number of Studies by Disability Group and Subcategories in Mental Health Subcategory (N) Other: quality of sleep (AD); self-perception (CP); maladaptive behavior (ID); self-esteem (TBI) AD, Alzheimer’s disease; ALS, amyotrophic lateral sclerosis; CP, cerebral palsy; Cross, cross disability; ID, intellectual disability; MD, muscular dystrophy; MS, multiple sclerosis; PD, Parkinson’s disease; STK, stroke; TBI, traumatic brain injury; Social Int., social interaction

12. Effects of Exercise on Health Outcomes by Evidence and Disability % of trials with sig. findings MH FH Non-Progressive physical disabilities: Stroke, TBI, SCI, CP CRH MBH Progressive physical disabilities: MS, Polio, Muscular Dystrophy, Parkinson’s, ALS FH MSH MSH MH MH Cognitive disabilities: ID/DS, Alz. Dis. FH MSH CRH CRH FH, Functional Health CRH, Cardiorespiratory Health MSH, Musculoskeletal Health MBH, Metabolic Health MH, Mental Health MBH MBH No Limited Moderate Strong LEVEL OF EVIDENCE Strong: > 85% of reviewed trials were significant; Moderate: 50-84% of reviewed trials were significant; Limited: <49% of reviewed trials with significant findings.

13. Less than 2% of prevalence of adverse events relating to exercise in the exercise group Prevalence of Adverse Events U.S. Department of Health and Human Services. Physical Activity Guidelines Advisory Committee Report 2008

14. Type of Adverse Events: Serious: withdrew from the study Non-Serious: completed the study Prevalence of Adverse Events-cont’d N=34 N=19 N=11 U.S. Department of Health and Human Services. Physical Activity Guidelines Advisory Committee Report 2008

15. Symptom-Associated Cardiovascular Problems Fall Musculoskeletal Problems Prevalence of 4 Major Adverse Events U.S. Department of Health and Human Services. Physical Activity Guidelines Advisory Committee Report 2008

16. Part 1: Point 2 Characteristics of exercise interventions in persons with disabilities

17. No. of Studies by Exercise Type Rimmer et al. (2010). Am J Phy Med & Rehab 89: 249-63

18. Exercise Regimen • Type • Aerobic exercise: walking on ground, treadmill, using cycle ergometer, stepping ergometer, rowing, arm ergometer (SCI), and wheelchair ergometer (SCI) • Strengthening: progressive resistance mode with weight machines, free weights and elastic bands. • Aquatic exercise: (stroke, MS, traumatic brain injury, Polio) • Alternative: Yoga (MS), Tai-Chi (MS, Parkinson’s), Qigong (Muscular Dystrophy)

19. Exercise Regimen-cont’d • Intensity • Moderate or higher (50% HRmax or VO2peak) • Frequency • 3-5 times/week • Duration • 30-60 minutes per session • Length • 12-20 weeks

20. Summary • Level of evidence • Relatively strong evidence for musculoskeletal health, functional health and mentalhealth. • More studies needed on metabolic health, healthy weight and decreasing secondary conditions. • Strong need for more RCTs. • Safety • Exercise can be implemented safely without inducing significant adverse events.

21. Part 2: Point 1 Identifying the Problem from a Public Health Perspective Problem: Low Physical Activity Levels in People with Disabilities Create Enormous Health Problems Conceptual model of deconditioning in people with disabilities

22. Leisure-Time Physical Activity Participation % Altman et al. (2008). Disability and Health in the U.S., 2001-2005

23. Relationship Between Leisure-Time Physical Activity & Health Status by Disability Without Disability Disability Leisure-Time Physical Activity Health Status Altman et al. (2008). Disability and Health in the U.S., 2001-2005

24. Rate of Secondary Conditions in Adults with and without Disability (Kinne et al., 2004)

25. Part 2: Point 2 Identifying the Core Problem: Deconditioning

26. Outcomes of Deconditioning Personal Care Assistance  Community Participation Health Care Utilization  Quality of Life Strength & Power Physical Inactivity Resting Energy Expenditure Insulin Sensitivity Osteopenia Peak VO2 Activity & Movement Physical Function Instrumental Activities of Daily Living Disability Total Energy Expenditure Secondary Conditions Impairments Aging with a Disability Employment Environmental Deconditioning Cycle • Immobilization • Impaired Balance • Falls & Injuries • Sarcopenia • Obesity Pathway 1 Pathway 2

27. Outcomes of Deconditioning Personal Care Assistance  Community Participation Health Care Utilization  Quality of Life Strength & Power Physical Inactivity Resting Energy Expenditure Insulin Sensitivity Osteopenia Peak VO2 Activity & Movement Physical Function Instrumental Activities of Daily Living Disability Total Energy Expenditure Secondary Conditions Impairments Aging with a Disability Employment Environmental Deconditioning Cycle • Immobilization • Impaired Balance • Falls & Injuries • Sarcopenia • Obesity Pathway 1 How do we break this deconditioning cycle? Pathway 2

28. Outcomes of Deconditioning Personal Care Assistance  Community Participation Health Care Utilization  Quality of Life Strength & Power Physical Activity Physical Inactivity Resting Energy Expenditure Insulin Sensitivity Osteopenia Peak VO2 Activity & Movement Physical Function Instrumental Activities of Daily Living Disability Total Energy Expenditure Secondary Conditions Impairments Aging with a Disability Employment Environmental Deconditioning Cycle • Immobilization • Impaired Balance • Falls & Injuries Sarcopenia Obesity Pathway 1 Pathway 2

30. Case Study 1 • A 30-yr old man with a upper level SCI visits his doctor for a Stage II pressure ulcer. He’s gained 30 lbs since his injury and had a 30 percent reduction in lean body mass. He’s lost a significant amount of strength 10 years post-injury and is no longer able to perform independent transfers or pressure relief. He sits in his wheelchair most of the day with little movement or activity. His personal assistance services are increased to assist with transfers and ADLs.

31. Case Study 3 • A 35-year old woman with multiple sclerosis has high levels of fatigue and is taking a corticosteroid that has caused her to gain 25 lbs. She now feels more fatigued and is concerned that exercise will make her more tired, so she stops going to her local health club. The increased weight gain and reduced muscle strength impair her balance resulting in a serious fall. She decides to purchase a scooter to prevent further falls.

32. Physical Activity Pyramid of Energy Expenditure (PAPEE) Rimmer & Schiller (2010). Second State of the Science Conference, Interactive Exercise Technologies and Exercise Physiology for People with Disabilities, RECTECH

33. Part 2 Point 3 Where we need to go ~ Systems Change Transitional model from rehabilitation to community-based physical activity How to make it happen

34. Overall Length of Stay (LOS) following Medical Rehabilitation Has Been Decreasing Day , Median (interquartile range) N=148,807 Ottenbacher et al. (2004). JAMA 292, p. 1687-95

35. Length of Stay and Hospital Readmission in People with Disabilities N=96,473, pertaining 8 impairment categories Re-hospitalization Length of Stay Ottenbacher et al. (2000). A J Public Health 90, 1920-3

36. Getting Beyond the Plateau Exercise/PA Rehab Minimum level of function Transitional PA Health & Function Physical activity Shorter LOS in rehab 0 2 4 6 8 10 12 14 16 18 20 Recovery (months) LOS, Length of stay; PA, Physical activity

37. How to Make It Happen • Fitness professionals must strengthen their skills in health promotion and disability. • Rehabilitation professionals must embrace the concept of extending its services into community-based fitness centers. • The third party must be willing to pay for the membership and the consultative services.

38. Health Promotion Model for People with Disabilities Rehabilitation Setting Hospital Rehabilitation Center Long-Term Care Facility Outpatient Medical Center Rehabilitation Rehab - RCEP Rehab Med- RCEP Transitional Setting University-Based Clinic Hospital Wellness Facility Private Clinic RCEP - CIFT RCEP - CIFT Community Setting Home Program Fitness Center Recreation Facility Senior Center Community Exercise Rehab Med, Rehabilitation Medicine; RCEP, Registered Clinical Exercise Physiologist; CIFT, Certified Inclusive Fitness Trainer

39. Certified Inclusive Fitness Trainer –CIFT(ACSM/NCPAD) http://www.vue.com/acsm/cift/

40. Key Abilities of a CIFT • demonstrates and leads safe, effective and adapted methods of exercise • writes adapted exercise recommendations • understands precautions and contraindications to exercise for people with disabilities • is aware of current ADA policy specific to recreation facilities (U.S. Access Board Guidelines) and standards for accessible facility design • can utilize motivational techniques and provide appropriate instruction to individuals with disabilities to enable them begin and continue healthy lifestyles

41. Part 2: Point 3 Framing Future Research

42. Physical Activity Conceptual Model Healthy, Active Lifestyles FOR ALL Barriers to Physical Activity Make it More Difficult for Youths with Disabilities to Reach the Goal Empower the Person Enable the Environment Improve Physiological and Psychological Health Promote Sustainability Increase Participation Provide Access

43. Outcomes of Deconditioning Personal Care Assistance Health Care Utilization Community Participation  Quality of Life Disability Strength & Power Physical Inactivity Resting Energy Expenditure Insulin Sensitivity Osteopenia Peak VO2 Activity & Movement Physical Function IADL Total Energy Expenditure Secondary Conditions Impairments Aging with a Disability Employment Slowdown or Break Environmental  Physical Activity Deconditioning Cycle Deconditioning Cycle • Immobilization • Impaired Balance • Falls & Injuries • Sarcopenia • Obesity Pathway 1 Pathway 2 Sustainability Exercise Interventions Participation Exercise Physiology Assessment Access Rehabilitation

44. Participant Intensity Study Info Study Characteristic Intervention Frequency Duration Setting Pattern Length Year Disability Type Type Keyword Title Methodo- logical quality Age Author Design Searchable Electronic Library – Conceptual Framework Health Outcomes Cardiorespiratory Health Musculoskeletal Health Healthy Weight Metabolic Health Functional Health Mental Health Secondary Conditions- pain, fatigue, others Adverse events Cancer All-Cause Mortality

45. Example of Summary Table Study Information Intervention Characteristics Participant Demographics Study Characteristics Health Outcomes Abstract

46. Webshop • NCPAD has a variety of instructional adapted exercise programs and products available for purchase such as: • Exercise Program for Stroke Survivors • Core and Stability Exercises for Stroke Survivors and People with Multiple Sclerosis

47. James H. Rimmer Director, National Center on Physical Activity and Disability www.ncpad.org Professor, Dep. of Disability and Human Development, University of Illinois at Chicago (M/C 626)1640 W. Roosevelt Rd., Room 711Chicago, IL 60608Phone: 312-413-9651 Fax: 312-355-4058 TTY: 800-900-8086 Email: jrimmer@uic.edu

48. Thank you