AAIM 123 rd Annual Meeting Philadelphia, PA September 30, 2014 Life Expectancy After Catastrophic Injury Robert Shavelle, PhD, FAACPDM Life Expectancy Project, San Francisco Shavelle@LifeExpectancy.org 1 2 1
Outline of Today s Talk Basic ideas related to life expectancy (terminology, the life table, mortality rates) The scientific approach to life expectancy Life expectancy in the general population (GP) Life expectancy in three catastrophic conditions: cerebral palsy (CP), traumatic brain injury (TBI), and spinal cord injury (SCI) 3 Basic Ideas Related to Life Expectancy The biggest point: Survival time can t be predicted. Two summary measures of survival time Median survival time = 50% mark Life expectancy = average (arithmetic mean) survival time A simple example: 1, 2, 9 Median = 2 Life expectancy = (1+2+9)/3 = 4 4 2
Example 1: 70 Year-Old U.S. Males 30% 25% Percentage Who Die 20% 15% 10% 5% 0% 70-74 75-79 80-84 85-89 90-94 95-99 100+ Age At Death 5 Example 2: Insured 70 Year-Old Males 30% 25% Percentage Who Die 20% 15% 10% 5% 0% 70-74 75-79 80-84 85-89 90-94 95-99 100+ Age At Death 6 3
7 Survival curves for persons like the 10-year-old male plaintiff (blue line) and for the U.S. male general population (red line) 100 90 80 70 survival percent 60 50 40 30 20 10 0 10 20 30 40 50 60 70 80 90 100 age (years) 8 4
2009 U.S. Life Table For Males age l(x) d(x) m(x) L(x) T(x) e(x) 0 100000 699 0.0070 99651 7596397 76.0 10 99121 8 0.0001 99117 6604061 66.6 20 98668 110 0.0011 98613 5614238 56.9 30 97400 133 0.0014 97334 4633809 47.6 40 95825 211 0.0022 95719 3667116 38.3 50 92648 499 0.0054 92398 2722544 29.4 60 85638 968 0.0114 85154 1827324 21.3 70 72681 1771 0.0247 71795 1029035 14.2 80 49653 2998 0.0623 48154 407115 8.2 90 17276 2867 0.1814 15843 71010 4.1 100 997 376 0.4736 809 2144 2.2 9 The Life Table Constructed using standard actuarial methods Not as complicated as it may first seem What goes in? The mortality rates, m, at every age, x, denoted m(x) What comes out? Everything else, including The life expectancy at age x, e(x) The number of people alive at age x, l(x), out of 100,000 alive at the starting age. Converting to a percentage, this is just the survival curve. 10 5
Factors That Affect Life Expectancy Positive Race: Hispanic Education: College Lifestyle: Non-smoker, regular exercise, ideal weight, and moderate alcohol Religion: Mormons and Seventh Day Adventists Negative Lifestyle: Smoking, sedentary, and obesity Diseases and medical conditions Birth and acquired injuries 11 2009 U.S. Life Expectancy Age Male Female 0 76 81 10 67 72 20 57 62 30 48 52 40 38 42 50 29 33 60 21 24 70 14 17 80 8 10 90 4 5 100 2 2 Source: National Center for Health Statistics National Vital Statistics Reports, Volume 62, Number 7 12 6
Table. Life expectancies (years) for various groups. # Group e 1 Patient with cancer that has metastasized < 1 2 65 year-old male on dialysis for life 3 3 90 year-old man 4 4 90 year-old woman 5 5 70 year-old male 13 6 50 year-old male smoker 23 7 50 year-old male non-smoker 32 8 20 year-old with paraplegia 45 9 Male at birth 76 10 Female at birth 81 Note: These are averages, not predictions of survival time. 13 The Scientific Approach To Life Expectancy Identify the factors that are relevant Demographics, Lifestyle, Medical conditions For the disabled: Mobility, feeding, epilepsy, cognitive abilities, respiratory and other health issues, scoliosis, contractures, asthma Use the available scientific evidence, either The medical literature, or A large survival data base of similar persons Lastly, consider any factors that could not be explicitly quantified: "plusses and minuses 14 7
Spinal Cord Injury (SCI) 10,000 injuries per year 200,000 persons currently alive with SCI 82% of injuries are to males Causes: MVA, violence, falls and sports Cost of care 1st year: $150,000 to $500,000 Thereafter: $10,000 to $100,000 15 Morbidity in SCI Deep vein thrombosis Pulmonary embolism Pressure sores Urinary tract infections, and upper urinary tract dilation (overfilling, which can trigger autonomic dysreflexia - potentially lifethreatening) Urinary calculi (from demineralization of bones due to immobility) Contracture of muscles, which can lead to fixed deformities Limitations of range of motion in the paralyzed joints Constipation and hemorrhoids Osteoporosis and fractures of the long bones Syringomyelia (a progressive disease of the spinal cord, which in the case of a cervical injury could further damage the respiratory system) 16 8
Mortality in SCI Cardiovascular Respiratory (pneumonia and influenza) Suicide and other accidents Septicemia Pulmonary embolism Reference: DeVivo MJ, Stover SL (1995). Long-term survival and causes of death. In: SL Stover, JA DeLisa, GG Whiteneck (Eds.), Spinal cord injury, pp.289-316. Gaithersburg, MD: Aspen. 17 Determinants of Life Expectancy in SCI Age and sex Neurologic level of injury. Example: C3 Severity of injury: Complete (ASIA grade A) or incomplete paralysis (BC); i.e., with or without sensation Ventilator dependence Time since injury Minor factors (race, etiology, sex) 18 9
19 Life Expectancy After SCI (crude) Male, Age 25 C1-C4 ABC (High Quadriplegia) 30 C5-C8 ABC (Low Quadriplegia) 35 T1-S5 (Paraplegia) 41 ASIA Grade D 45 U.S. General Population 52 Source: DeVivo MJ, Stover SL (1995). Long-term survival and causes of death. In: SL Stover, JA DeLisa, GG Whiteneck (Eds.), Spinal cord injury, pp.289-316. 20 10
Life Expectancy After SCI (detailed) Source: Strauss et al. (2006). 21 Life Expectancy After SCI (AIS D) 22 Source: Shavelle (2014). 11
How to Rate Co-Morbid Factors Suppose the person has factor x, which usually has a rating of +50 (MR=rr=1.5) [Note: Of course the rating could depend on the baseline condition.] How to account for factor x? If all persons with SCI have x, then no adjustment is necessary If none have it, full adjustment 23 How to Rate Co-Morbid Factors (continued) Let p = proportion who have it Let r = relative risk of mortality for those who have it compared with those who do not Then the proper adjustment factor (adjusted relative risk) is: f = r / [pr+(1-p)] Check: If p = 0, r = r and if p = 1, f = 1 24 12
Recent SCI Literature Shavelle RM, Paculdo DR, Tran LM, Strauss DJ, Brooks JC, DeVivo MJ (2014). Mobility, continence, and life expectancy in persons with ASIA impairment scale grade D spinal cord injuries. American Journal of Physical Medicine & Rehabilitation, June 2014 [epub ahead of print]. Strauss D, DeVivo M, Shavelle R, Brooks J, Paculdo D (2008). Economic factors and longevity in spinal cord injury: A reappraisal. Archives of Physical Medicine and Rehabilitation, 89:572-574. Shavelle RM, DeVivo MJ, Paculdo DR, Vogel LC, Strauss DJ (2007). Long-term survival after childhood spinal cord injury. Journal of Spinal Cord Medicine, 30:S48-S54. Shavelle RM, DeVivo MJ, Strauss DJ, Paculdo DR, Lammertse DP, Day SM (2006). Long-term survival of persons ventilator dependent after spinal cord injury. Journal of Spinal Cord Medicine, 29:511-519. Strauss DJ, DeVivo MJ, Paculdo DR, Shavelle RM (2006). Trends in life expectancy after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 87:1079-1085. 25 Traumatic Brain Injury (TBI) 1.5 million injuries per year at cost of $25 billion to society 50,000 deaths per year 230,000 are hospitalized and survive 85,000 experience long-term disability Etiology: MVA, violence, and falls 26 13
Morbidity/Mortality in TBI Seizures Respiratory infections Choking and other accidents Cardiovascular disease Reference: Shavelle RM, Strauss DJ, Whyte J, Day SM, Yu YL (2001). Long-term causes of death after traumatic brain injury. American Journal of Physical Medicine& Rehabilitation, 80:510-516. 27 Conditions Caused by TBI? Depression Holsinger T, Steffens DC, Phillips C, Helms MJ, Havlik RJ, Breitner JC, Guralnik JM, Plassman BL (2002). Head injury in early adulthood and the lifetime risk of depression. Archives of General Psychiatry, 59:17-22. Alzheimer s Plassman BL, Havlik RJ, Steffens DC, et al. (2000). Documented head injury in early adulthood and risk of Alzheimer's disease and other dementias. Neurology, 55:1158-1166. Parkinson s Stern M, Dulaney E, Gruber SB, Golbe L, Bergen M, Hurtig H, Gollomp S, Stolley P. The epidemiology of Parkinson's disease (1991). A case-control study of young-onset and old-onset patients. Archives of Neurology, 48:903-907. Neuroendocrine Behan LA, Phillips J, Thompson CJ, Agha A (2008). Neuroendocrine disorders after traumatic brain injury. Journal of Neurology, Neurosurgery & Psychiatry, 79:753-759. 28 14
Determinants of Life Expectancy in TBI Age Sex Motor function Tube feeding or other feeding ability Time since injury (the first few years) Epilepsy Cognitive function 29 Life Expectancy After TBI: Males Cannot Walk Some Walks Age PVS a FBO b SF c Walking Ability Well Alone GP d 20 11 26 40 44 49 55 30 10 22 33 37 41 45 40 9 16 26 28 32 36 50 7 11 19 20 23 27 a Persistent vegetative state. Tube fed. b Fed by others, either orally or by a feeding tube. c Self feeds with fingers or utensils. d General population. 30 Source: Table 17-3 of Shavelle et al. (2007). 15
Life Expectancy After TBI: Females Cannot Walk Some Walks Age PVS a FBO b SF c Walking Ability Well Alone GP d 20 11 26 40 48 54 60 30 10 22 33 41 46 51 40 9 16 26 31 36 41 50 7 11 19 23 27 32 a Persistent vegetative state. Tube fed. b Fed by others, either orally or by a feeding tube. c Self feeds with fingers or utensils. d General population. 31 Source: Table 17-2 of Shavelle et al. (2007). Recent TBI Literature Brooks JC, Strauss DJ, Shavelle RM, Paculdo DR, Hammond FM, Harrison-Felix CL (2013). Long-term disability and survival in traumatic brain injury: Results from the National Institute on Disability and Rehabilitation Research Model Systems. Archives of Physical Medicine and Rehabilitation, 94:2203-2209. Shavelle RM, Strauss DJ, Day SM, Ojdana KA (2007). Life Expectancy. In: ND Zasler, D Katz & R Zafonte (Eds.), Brain Injury Medicine: Principles and Practice. New York: Demos Medical Publishing. Strauss DJ, Shavelle RM, DeVivo MJ, Harrison-Felix C, Whiteneck GG (2004). Life expectancy after traumatic brain injury [letter]. NeuroRehabilitation, 19:257-258. Brown AW, Leibson CL, Malec JF, Perkins PK, Diehl NN, Larson DR (2004). Long-term survival after traumatic brain injury: A population-based analysis, NeuroRehabilitation, 19:37-43. Harrison-Felix C, Whiteneck G, DeVivo M, Hammond FM, Jha A (2004). Mortality following rehabilitation in the traumatic brain injury model systems of care. NeuroRehabilitation, 19:45-54. Shavelle RM, Strauss DJ (2000). Comparative mortality of adults with traumatic brain injury in California, 1988-97. Journal of Insurance Medicine, 32:163-166. Baguley I, Slewa-Younan S, Lazarus R, Green A (2000). Long-term mortality trends in patients with traumatic brain injury. Brain Injury, 14:505-512. 32 16
Cerebral Palsy (CP) A term of convenience to describe motor disorders due to brain impairment Affects roughly 1 in 500 live births Non-progressive; appears early in life Possible causes include hypoxia before or during delivery, head trauma, and infections. The exact cause in most cases cannot be determined. Effects range from very mild to very severe 33 Morbidity/Mortality in CP Respiratory diseases, especially in the young Spasticity, contractures, scoliosis, asthma GERD, UTI, accidents Heart disease and other effects of immobility Reference: Strauss DJ, Cable W, Shavelle RM (1999). Causes of excess mortality in cerebral palsy. Developmental Medicine and Child Neurology, 41:580-585. 34 17
Complications Of Immobility Cardiovascular: Decreased cardiac output, contributing to decreased aerobic capacity; orthostatic intolerance; venous thrombophlebitis Pulmonary: Atelectasis; relative hypoxemia; pneumonia Musculoskeletal: Muscle atrophy and loss of strength; decreased muscle oxidative capacity contributing to decreased aerobic capacity; osteoporosis (bone loss); contractures; osteoarthritis Gastrointestinal: Constipation Genitourinary: Incontinence; renal calculi and urinary tract infections Skin: Pressure ulcers due to tissue ischemia Functional: Impaired ambulation and activity intolerance Psychological: Depression; altered sensory perception Reference: Porth CM (2002). Pathophysiology: Onset of Altered Health State, 6th edition, Lippincott, Williams and Wilkins, p. 241. 35 Determinants of Life Expectancy in CP Many potential factors Etiology Type of CP Severity of MR (mental retardation level) Ethnicity, Socioeconomic status Type of residence Many don t matter (e.g., hair color) The biggest factors Motor function: rolling, sitting, crawling, walking Feeding: gastrostomy tube, FBO, self feeds 36 18
The Normal Developmental Sequence Lifts head (at age 0-1 month) Lifts head and chest (2-4 months) Rolls (3-7 months) Sits (5-9 months) Crawls (6-12 months) Stands (7-13 months) Cruises, walks with support, then walks alone (8-17 months) 37 Two Other Factors Quality of care: "With good care normal life expectancy. True for a normal child. Not true for the disabled. Does care matter? If good versus bad, then yes. If excellent versus reasonable & necessary, then no. Secular (time) trend: Those old historical studies do not apply in today s age of modern medicine! Evidence of a trend in the past 20 years! 38 19
Life Expectancy in CP: 4 Year-Old Male Persistent Vegetative State (PVS), Tube Fed (TF) 14 Immobile Minimally Conscious State (IMCS), TF 15 Unable to lift head, tube fed by gastrostomy 18 Able to lift head, tube fed by gastrostomy 21 Able to lift head, fed by others 28 Able to lift head, can self feed 48 Very high functioning (can walk and self feed) 68 U.S. General Population - Males 73 39 Source: Derived from the survival figures given in Table II of Brooks et al. (2014). Recent CP Literature Brooks JC, Strauss DJ, Shavelle RM, Tran LM, Rosenbloom L, Wu YW (2014). Recent trends in cerebral palsy survival. Part II: Individual survival prognosis. Developmental Medicine & Child Neurology. 2014 Jul 12. doi: 10.1111/dmcn.12519. Reid SM, Carlin JB, Reddihough DS (2012). Survival of individuals with cerebral palsy born in Victoria, Australia, between 1970 and 2004. Developmental Medicine & Child Neurology, 54:353-360. Strauss DJ, Shavelle RM, Reynolds RJ, Rosenbloom L, Day SM (2007). Survival in cerebral palsy in the last 20 years: Signs of improvement? Developmental Medicine & Child Neurology, 49:86-92. Hemming K, Hutton J, Colver A, Platt MJ (2005). Regional variation in survival of people with cerebral palsy in the United Kingdom. Pediatrics, 116:1383-1390. Hutton JL, Pharoah POD (2002). Effects of cognitive, motor, and sensory disabilities on survival in cerebral palsy. Archives of Disease in Childhood, 86:84-89. Includes commentary by Dr. Lewis Rosenbloom. Shavelle RM, Strauss DJ, Day SM (2001). Comparison of survival in cerebral palsy between countries [letter]. Developmental Medicine & Child Neurology, 43:574. 40 20
Amusing Statements About Life Expectancy By Clinicians His life expectancy at the time of the accident, 3 years ago, was 10 years, so it s now 10-3 = 7 years With optimal medical care, the life expectancy [of this person in the vegetative state] is near normal He could die any day, so his life expectancy could be very short Very few of my patients have died, so with good care I believe his life expectancy will be normal This man is 20, but will likely make it to age 50, when the life expectancy is 30 years, so his life expectancy is to age 80 Most of my patients are in their 40 s, 50 s or 60 s, so I think this man s life expectancy is to the middle of this range --his 50 s 41 Summary Life expectancy is not a prediction of the person s actual survival time. Life expectancy in cerebral palsy, traumatic brain injury, and spinal cord injury varies according to the severity of disability. A large body of medical literature can be used to estimate life expectancy. 42 21