40 Years of Spinal Cord Injury Research

40 Years of Spinal Cord Injury
Research
James S. Krause, PhD
Medical University of South Carolina
Health, Employment, and Longevity Project
Elements of presentation
• Overview of 40 years of research
• Current findings on Aging
• Theoretical Risk and Prevention Model
• Findings related to mortality
• Accomplishments of our participants
• Future directions
Overview of our studies
Minnesota-Georgia Longitudinal Aging Study
1.
2.
3.
8 times of measurement
N = 2,208
Assessments = 6,035
SCI Longitudinal Health Study
1.
2.
3.
3 times of measurement
N = 4,598
Assessments = 7,333
Over 17,000 assessments across all studies
Minnesota-Georgia Longitudinal
Aging Study
Study history
• Initially designed to help us understand the life situation of
those with chronic SCI.
• We knew very little about the lives of those with SCI who
are living in the community.
• Life expectancy was believed to be relatively short.
• Study evolved into a study of aging.
•
•
Four new cohorts added over time (5 total)
The assessment expanded substantially over the years, with core
longitudinal components
Dr. Nancy M. Crewe - 1973
Dr. Nancy Crewe initiated our program of
research at the University of Minnesota in
1973. Throughout her long and
distinguished career, Nancy cared deeply
about people with disabilities and the
physical and psychological aspects that affect
their lives. Nancy passed away in 2011, but
her work still lives on.
1988 Conference AASCIPSW
• We used 1974 data in relation to 1985 survival status.
• Survival was significantly related to particularly better
participation and quality of life.
• In 1985, there were no participants who were 40+ years
post-injury and only 2 total assessments of those 40+
years
• In 2013, including all cohorts, there were 103 participants
who were 40 or more years post-injury
Minnesota-Georgia Longitudinal Aging Study
Followup
Base
11
15
20
25
30
35
40
Year
1973
S1
256
S2
S3
S4
S5
New
Total
Data
Collected
Minnesota-Georgia Longitudinal Aging Study
Followup
Year
S1
Base
1973
256
11
1984
154
15
20
25
30
35
40
S2
193
S3
S4
S5
New
Total
Data
Collected
256
256
193
347
Minnesota-Georgia Longitudinal Aging Study
Followup
Year
S1
Base
1973
256
11
1984
154
15
1988
135
20
25
30
35
40
S2
S3
S4
S5
New
Total
Data
Collected
256
256
193
193
347
151
0
286
Minnesota-Georgia Longitudinal Aging Study
Followup
Year
S1
Base
1973
256
11
1984
154
15
1988
20
1993
25
30
35
40
S2
S3
S4
S5
New
Total
Data
Collected
256
256
193
193
347
135
151
0
286
114
121
796
1031
199
597
Minnesota-Georgia Longitudinal Aging Study
Followup
Year
S1
S2
Base
1973
256
11
1984
154
15
1988
20
25
30
35
40
S3
S4
S5
New
Total
Data
Collected
256
256
193
193
347
135
151
0
286
1993
114
121
199
597
796
1031
1998
95
104
163
398
0
760
Minnesota-Georgia Longitudinal Aging Study
Followup
Year
S1
S2
Base
1973
256
11
1984
154
15
1988
20
S3
S4
S5
New
Total
Data
Collected
256
256
193
193
347
135
151
0
286
1993
114
121
199
597
796
1031
25
1998
95
104
163
398
0
760
30
2003
78
91
136
300
963
1568
35
40
963
Minnesota-Georgia Longitudinal Aging Study
Followup
Year
S1
S2
Base
1973
256
11
1984
154
15
1988
20
S3
S4
S5
New
Total
Data
Collected
256
256
193
193
347
135
151
0
286
1993
114
121
199
597
796
1031
25
1998
95
104
163
398
0
760
30
2003
78
91
136
300
963
963
1568
35
2008
64
71
104
224
557
0
1020
40
Minnesota-Georgia Longitudinal Aging Study
Followup
Year
S1
S2
Base
1973
256
11
1984
154
15
1988
20
S3
S4
S5
New
Total
Data
Collected
256
256
193
193
347
135
151
0
286
1993
114
121
199
597
796
1031
25
1998
95
104
163
398
0
760
30
2003
78
91
136
300
963
963
1568
35
2008
64
71
104
224
557
0
1020
40
2013
51
55
91
181
389
0
767
Comparison of years post-SCI with SCIMS
Years Post-Injury
40-year
<=5
5
81
1020
10
15
1116 1038
20
25
30
35
40
45
863
690
478
307
187 104
50+
Total
58
5942*
Note: Years post-injury is the mid-point of the grouping with 2.5 years on either side of the mid-point (e.g., the 10year interval assessments were completed between 7.6-12.4 years post-injury).
*While there have been 6,001 assessments conducted, there were 59 participants with missing data on year of injury
that are not represented in this table.
Comparison of years post-SCI with SCIMS
Years Post-Injury
40-year
SCIMS
Total
<=5
5
81
1020
10
15
1116 1038
20
25
30
35
40
863
690
478
307
187 104
35106 40562 17967 7147 3698
2500 1597 598
7
45
0
50+
Total
58
5942*
0
109182
Note: Years post-injury is the mid-point of the grouping with 2.5 years on either side of the mid-point (e.g., the 10year interval assessments were completed between 7.6-12.4 years post-injury).
*While there have been 6,001 assessments conducted, there were 59 participants with missing data on year of injury
that are not represented in this table.
Challenges and Accomplishments
• As of 2014:
• total survival years is 56,937
• Average survival years per person is 26 years
•
12,419 working years after injury

•
6 working years on average per person
22,603,464 working hours

10,373 working hours on average per person
Historic Gathering of 40 and 50 Year Survivors
• This celebration brought
together study participants and
guests
•
•
10 SCI survivors who were 50+
years post-injury
Those in attendance with SCI
averaged 41.8 years post-injury
40+ year survivors
50+ year survivors
Roommates 50 years ago reunited
Old friends, both 50+ years post-injury
50+ years on his anniversary
55 years post-injury
Disappointed at 57 years post-injury
Longevity Award – 58 years
40 year participants – New challenges
Analysis of 40 year participants
• N = 48
• Current age = 64.9
• Age at injury onset = 19.1
• Years post-injury = 45.9
• Years of education = 15.5
Sitting tolerance of >12 hours per day
3 or more times out of the house/week
Percentage employed
Hours per week among employed
1
2
3
4
5
Non-routine physician visits
Hospitalizations (at least one)
Days hospitalized
Minnesota-Georgia Longitudinal
Aging Study
Summary and Observations
SCI Longitudinal Health Study
Background
• Psychological, socio-environmental, and behavioral factors are
integrally related to health, quality of life (QOL), and longevity
after spinal cord injury (SCI).
• Early research validated what health professionals believed –
improving psychosocial and vocational outcomes ultimately result
in better health and even enhances longevity.
• We use prospective cohort studies to understand factors beyond
basic demographic and injury characteristics and the strength of
their relationships with mortality and life expectancy.
• We emphasize the importance of secondary health conditions.
Procedures
• Mailed survey
• Mortality status determined using National Death Index
death records
• Several biographic and injury-related variables were
included as statistical controls
•
Race
•
Gender
•
Age at injury
•
Years since injury
•
Injury severity
SCI Longitudinal Health Study
Table. Number of Participants by Cohort & Time of Measurement,
including Predicted Responses for Proposed Study.
C1
(SCI)
T1: 1997-1998
1,386
C2
(SCI)
C3
(SCI)
C4
(SCI)
Total
1,386
C1, C2=Shepherd; C3=South Carolina Surveillance; C4=Minnesota Surveillance
SCI Longitudinal Health Study
Table. Number of Participants by Cohort & Time of Measurement,
including Predicted Responses for Proposed Study.
C1
(SCI)
T1: 1997-1998
1,386
T2: 2007-2009
876
C2
(SCI)
C3
(SCI)
C4
(SCI)
Total
1,386
1,672
2,548
C1, C2=Shepherd; C3=South Carolina Surveillance; C4=Minnesota Surveillance
SCI Longitudinal Health Study
Table. Number of Participants by Cohort & Time of Measurement,
including Predicted Responses for Proposed Study.
C1
(SCI)
C2
(SCI)
T1: 1997-1998
1,386
T2: 2007-2009
876
1,672
T3: 2012-2014
624
1,235
C3
(SCI)
C4
(SCI)
Total
1,386
2,548
998
554
3,411
C1, C2=Shepherd; C3=South Carolina Surveillance; C4=Minnesota Surveillance
Risk Model
The model is used to classify the
types of factors that relate to
maintaining health and longevity.
Biographic and Injury Factors
Sensation Seeking
Purpose in Life
Neuroticism/Anxiety
Psychological
Environmental
Protective/Risk Behaviors
Health
Mortality
Income/Poverty
Social Support
Prescription medication use
Binge drinking
Hours out of bed
Smoking
Hospitalizations
Fractures/amputations
Surgeries for pressure ulcers
Probable major depression
Symptoms of Infection
Biographic and Injury Factors
Sensation Seeking
Purpose in Life
Neuroticism/Anxiety
Psychological
Environmental
Protective/Risk Behaviors
Health
Mortality
Income/Poverty
Social Support
Prescription medication use
Binge drinking
Hours out of bed
Smoking
Hospitalizations
Fractures/amputations
Surgeries for pressure ulcers
Probable major depression
Symptoms of Infection
Table 1. Participant Characteristics and Crude Odds
Ratios for Demographic/Injury Characteristics
Mortality
Demographic/
Injury Characteristics
Gender
Male
Female
Injury Severity
C1-C4
C5-C8
Non-cervical
Ambulatory
Years Post-injury
Age at Survey
Yes
(n=270)
No
(N=1010)
Row %
OR* (95% CI)
p-value
0.2408
21.9
18.7
78.1
81.3
1.23 (0.87-1.75)
Reference
31.6
22.9
21.3
11.5
10.9 (7.8)
50.0 (15.4)
68.4
77.1
78.7
88.5
9.4 (6.6)
38.6 (11.7)
6.44 (3.66-11.36)
3.78 (2.28-6.27)
3.18 (1.94-5.22)
Reference
1.00 (0.98-1.02)
1.07 (1.06-1.09)
*OR are controlling for all other variables in the table.
<.0001
0.7924
<.0001
Table 2. Adjusted Odds Ratios and 95% Confidence
Intervals for Risk Variables from Final Model
Variable
Pressure Ulcers (vs. Never get them)
Non-chronic
Chronic
Depression Disorder (vs. No)
Yes
Days in the Hospital (vs. None)
1-9
10+
Amputation (vs. No)
Yes
Infections**
OR*
Final Model
95% CI
1.55
4.20
1.14-1.10
2.38-7.40
0.0003
1.65
1.25-2.16
<.0001
1.72
1.91
1.24-2.37
1.38-2.63
0.0050
2.38
1.14
*Controlling for age, gender, years post-injury, injury severity
** OR reported is for 1 s.d. change in infectious symptoms
p-value
<.0001
1.30-4.38
1.00-1.31
0.0516
Life Expectancy – 20 year old male
• No health risk factors present (Under favorable conditions)
•
LE = 39.02 years
• Certain health conditions were associated with the greatest
drop in LE
•
Having chronic PUs was associated with the greatest drop in LE (21.20
years), followed by,
•
Amputation (28.03 years), followed by,
•
10 or more days in the hospital (30.84 years), followed by,
•
Depressive disorder (32.70 years), followed by,
•
Infectious symptoms (37.30 years)
Table 3. Percentage of Participants affected by Specific
Health Factors
Behaviors
Percentage
Chronic PUs (Yes)
2.73
Depressive Disorder(Yes)
23.91
Days Hospitalized (10+)
14.92
Amputation (Yes)
2.27
Infections Symptoms (>1 s.d.)
18.98
1 condition only
28.91
2 conditions
10.86
3 conditions
3.44
4 conditions
0.47
5 conditions
0
Economics and mortality
Socioeconomic factors
-years of education
-employment
-income
Trend in Mortality by Income Level*
35
30
Percent Died
25
20
15
10
5
0
<$10K
$10-15K
$15-20K
$20-25K
$25-35K
$35-50K
$50-75K
$75K+
Adjusted odds ratios and 95% confidence intervals for
mortality
Characteristic
Income (vs. $75,000 +)
< $25,000
$25,000-$74,000
Education (vs. Bachelors+)
< High School
High School/Associates
Hours Working (vs. 30+hrs)
0 hours
1-29 hours
Previous Analysis
Stage I
Stage II
2.31 (1.76-3.02)
1.61 (1.23-2.12)
2.10 (1.67-2.64)
1.50 (1.19-1.88)
1.82 (1.44-2.30)
1.38 (1.10-1.74)
1.77 (1.41-2.23)
1.44 (1.20-1.72)
1.68 (1.37-2.06)
1.40 (1.19-1.64)
1.52 (1.24-1.86)
1.28 (1.09-1.50)
ND
ND
ND
ND
*Both stages also control for age, gender, race, injury level, AIS/Frankel, SCI etiology
Stage I: Hosmer-Lemeshow Chi-Sq=6.83, DF=8, p=0.5550; C=0.750
Stage II: Hosmer-Lemeshow Chi-Sq=8.00, DF=8, p=0.4338; C=0.751
1.67 (1.36-2.05)
1.37 (1.01-1.86)
Life expectancy as a function of household income,
education, and current employment status
Example uses a 25 year old white male with
a C1-C4 SCI, ASIA A, injured in motor vehicle crash.
<$25,000
Work Hours <12
0
20.66
1-29
21.83
30>
27.27
12-15
22.92
24.13
29.57
16+
26.06
27.29
32.61
$25,000-74,999
Education*
<12
12-15
16+
23.77 26.19 29.50
25.00 27.43 30.73
30.42 32.74 35.77
*For education, <12=<High School; 12-15=High School/Associates; 16+=Bachelors+
$75,000+
<12
28.61
29.84
34.96
12-15
31.20
32.41
37.29
16+
34.70
35.84
40.34
Life expectancy as a function of household income,
education, and current employment status
Example uses a 50 year old white male with
a C1-C4 SCI, ASIA A, injured in motor vehicle crash.
<$25,000
Work Hours <12
0
8.47
1-29
9.08
30>
11.80
12-15
9.79
10.42
13.14
16+
11.69
12.34
14.99
$25,000-74,999
Education*
<12
12-15
16+
10.30 11.78 13.88
10.94 12.42 14.51
13.65 15.07 17.03
*For education, <12=<High School; 12-15=High School/Associates; 16+=Bachelors+
$75,000+
<12
13.30
13.94
16.50
12-15
14.99
15.62
18.05
16+
17.36
17.96
20.20
Future directions
Where do we go from here?
Those who have paved the
road and lead by example
Sarah Lottes
Sarah worked with Dr. James Krause
since 1993. She showed complete
dedication to the research that she
knew would help people with spinal
cord injuries. She passed away in early
2015.
John A. Wertz
John, a paraplegic, had a motor
vehicle crash in 1972. He retired
in 2002 after teaching social
studies for 35 years.
Mike Patrick
Mike published a book entitled "I
Still Believe in Tomorrow" about
his life journey. He has given more
than 5500 presentations in schools,
conferences, businesses, and
workshops. He is also an active
blogger.
Bob Peters
Bob, a quadriplegic, was injured
diving in 1964. He and his wife,
Penny, lived in Bloomington,
Minnesota. Bob retired in 2004
after 43 years in the electronics
field. Bob published a book
entitled “A Dive Too Deep”. He
passed away shortly after our 40
year celebration.
Sharon Van Winkle
Sharon van Winkle participated in
the 1984 Olympics, which was the
first female 800-meter wheelchair
exhibition race. Her portrait was
published on the cover of Sports
and Spokes magazine.
Larry Kegan
“Champion of all causes”
John Schatzlein
John graduated from Southwest
State Minnesota University in
1971. He has a MPH from the
University of Minnesota and 40
years of work in hospital &
community rehabilitation. He
helped establish the electrical
stimulation cycling program and
the first electrical stimulation
fertility program at Sr. Kenny
Institute in Minneapolis.
John Schatzlein
David Gray
David was one of the pioneering
contributors to the Americans with
Disability Act who served in many roles
within agency funded disability research,
and was a presidential appointee as
director of the National Institute for
Disability and Rehabilitation Research.
He passed away in early 2015.
Acknowledgements
The contents of this presentation were developed under
grants from the US Department of Health and Human
Services Administration for Community Living, NIDILRR
grant numbers 90IF0015-01-00, 90RT5003-01-00, 90IF006601-00, 90DP0050-01-00, and NIDRR grant number
H133N110005. However, those contents do not necessarily
represent the policy of the Department of Health and
Human Services, and you should not assume endorsement
by the Federal Government.
Contact Us
Dr. James Krause
1-866-313-9963
[email protected]
www.longevityafterinjury.com
www.beyond90days.com