Aging with an Existing Physical Disability

1. Aging with an Existing Physical Disability Lisa I. Iezzoni, MD, MSc Mongan Institute for Health Policy, Massachusetts General Hospital Harvard Medical School June 7, 2011

3. Across the entire life span, from young to old ages, more Americans are living with disabilities.

4. LIVING INTO OLDER AGE • Advances in medical technology, such as: • Antibiotics to treat urinary tract infections (e.g., spinal cord injury) • Long-term ventilatory support (e.g., SCI, polio, neuromuscular conditions) • Improved education, incomes • Removal of environmental barriers, construction of accessible communities • Changing social attitudes

7. U.S. CENSUS BUREAU, MAY 2010 • 54 million noninstitutionalized, civilian U.S. residents have disabilities (19%) • Poverty rates (age 25-64) • 27% with severe disability • 12% with nonsevere disability • 9% without disability • Education < high school (age 25 +) • 28% with disability • 12% without disability

9. DISABILITY = “UMBRELLA TERM” • Impairments relating to diseases and disorders • Environmental factors • Physical environment • Social and attitudinal environment • Personal factors

13. The 54 million Americans with disabilities are very diverse.

14. Different types of impairments have different implications for aging.

15. FOCUS TODAY • Physical impairments • Congenital condition OR • Developed disability: • During childhood • Early middle-age

16. AGING EFFECTS ON 4 LEVELS • Progression of underlying impairment • Development of secondary conditions • Development of comorbid chronic health condition associated with aging • Risks of disparities in treating comorbid conditions because of disability • Changes in social or physical environment PATIENT-CENTERED CARE, ROLE OF PERSONS IN MANAGING THEIR CONDITIONS AND DETERMINING OUTCOMES

17. DATA SOURCES • Robert Wood Johnson Foundation Investigator Award in Health Policy Research • Agency for Healthcare Research and Quality R01 grant • National Cancer Institute R01 grant • National Cancer Institute R21 grant • All names pseudonyms; almost all photos publicly available off Internet

19. Progression of disabling condition

20. UNDERLYING CONDITION WORSENS • Pathophysiology fixed • Congenital: e.g., cerebral palsy, spina bifida • Acquired: e.g., spinal cord injury, amputation • Is worsening result of secondary conditions? • Pathological process progresses over time • More pathology in target organ system: e.g., more lesions in multiple sclerosis • More end-organ damage: e.g., diabetes

21. ARTHRITIS, DJD • Single most disabling condition among adults • Growing incidence among young people because of overweight, obesity • At what point should patient consider joint replacement • “Life expectancy” of joint prosthesis • Joint replacement can eliminate disability

23. About eight years ago, I was going to have these knee operations done. But then the doctors said they couldn’t guarantee more than 15 years and 55 is kind of young to get something like that done. Mike Campbell, mid-50s

24. DIABETES • Arnis Balodis, mid-60s • Both legs amputated below knee • During WWII as child put into German detainee camp; diagnosed soon after release with juvenile diabetes • “They gave me a bottle of insulin and a hypodermic and said, ‘This is your life. How long or how short, we don’t know.’” • Lived “hard,” thought he would die young

25. MAKING CHOICES • Understood that lifestyle choices had consequences for long-term functioning • Q: “Did you know all along that you could lose your legs?” • A: “Yup. I took a gamble. No, it wasn’t a gamble. It was a calculated risk.” • “If I had known I’d live this long, I might have done some things differently.”

26. CEREBRAL PALSY • Natalie Strong, early thirties • CP primarily affected her legs • Had walked initially without mobility aids, then using crutches • Began to fall, injuring her knees • Walking steadily worsened • Started using wheelchair after knee injury; now always uses wheelchair

28. Development of secondary conditions

29. FAIR OR POOR HEALTH Age

30. SECONDARY CONDITIONS • Additional physical or mental health conditions related to primary impairment • Examples: • Pressure ulcers • Falls with serious injuries • Rotator cuff injuries from propelling wheelchair • Depression, anxiety • Overweight, obesity • Urinary incontinence, urinary tract infections • Can contribute significantly to disability • Focus on prevention

32. WEIGHT Body Mass Index

33. OBESITY BY AGE Age

34. REGULAR LEISURE TIME PHYSICAL ACTIVITY Age

35. ENVIRONMENTAL BARRIERS • Unsafe neighborhoods • Crumbling infrastructure, poor or missing sidewalks • Gym and health club facilities without accessible equipment

36. Every time you exercise, you come face-to-face with the limitations of your body. You face everything that you have lost. Eva, mid-40s, RA

37. MENTAL HEALTH

39. Incrementally, yet absolutely, I have become less independent, more invalid.Clearly, time to think about an electric wheelchair.I resisted the thought. Electric wheelchairs are for crippled people, not for folks like me. Hugh Gregory Gallagher

40. The electric chair moves from A to B so effortlessly that it imparts to its occupant a dignity that is somehow missing in a hand-propelled chair. It is a very sensible way to go about your business ... It has changed my life. Hugh Gregory Gallagher

42. Development of comorbid conditions; possible treatment disparities

43. CHRONIC COMORBIDITIES

44. TOBACCO SMOKING Age

45. ARE PWDs AT HIGHER RISK? • Higher rates of risky health behaviors related to developing comorbidities • Smoking • Overweight and obesity • Low rates of physical activity • Consequences of childhood treatments • Radiation exposure from extensive x-rays for children with polio, cerebral palsy, etc. → higher rates of breast cancer?

47. The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities 2005 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Public Health Service Office of the Surgeon General Rockville, MD

50. ROUTINE SCREENING Persons with major mobility problems: • 70% less likely: asked about contraception (women) • 40% less likely: Pap smear • 30% less likely: mammogram • 20% less likely: asked about smoking history (analyzing smokers only)