presentation for the american academy of physical medicine and rehabilitation annual congress...
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Presentation for The American Academy of Physical Medicine and Rehabilitation Annual Congress
Pseudobulbar Affect Symptoms, Prevalence and Impact in Former Professional Football Players: Results of an Online Survey
Co-Authors:
Jay H. Rosenberg, MD, The Neurology Center
Amy Kincaid, Avanir Pharmaceuticals, Inc.
Charles Yonan, PharmD, Avanir Pharmaceuticals, Inc.
Shereen McIntyre, MBA, Avanir Pharmaceuticals, Inc.
Andrea Formella, PharmD, BCPP, Avanir Pharmaceuticals, Inc.
Gregory O’Shanick, MDCenter for Neurorehabilitation Services, Richmond, VA Medical Director Emeritus, BIAA
DISCLOSURE
I have relevant financial relationships with the products or services described, reviewed, evaluated, or compared in the presentation
Avanir Pharmaceuticals, Inc. – Consultant
► This survey was conducted through The Gridiron Greats Assistance Fund in conjunction with Avanir Pharmaceuticals, Inc., who provided funding for this survey, and GfK Custom Research, LLC who hosted the online survey and collated the survey data
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Objective:
Investigate the prevalence and impact of pseudobulbar affect (PBA) symptoms as a potential consequence of sports-related head injuries among former professional football players
Pseudobulbar Affect (PBA):
Occurs secondary to certain neurologic diseases or brain injuries
Characterized by sudden, uncontrollable, laughing and/or crying episodes that are exaggerated to situation/social context and excessive or unrelated to mood
3
OBJECTIVE & BACKGROUND
Design:
Survey conducted through the Gridiron Greats Assistance Fund
~ 15-minute online survey sent to Gridiron Greats email list Nov-Dec 2014
Eligible participants were ≥18 years of age, and:
• A former professional football player; or
• A family member, person living with or caring for a former player
Survey questions included:
• Basic Demographics
• History of head injury or concussion
• Center for Neurologic Study–Lability Scale (CNS-LS), a 7-item PBA self-assessment measure previously validated in ALS and MS populations 1-2
• PBA symptom (excessive, uncontrollable laughing or crying) frequency and impact on activities and relationships
• Interactions with Medical Professionals regarding PBA symptoms 41. Moore SR, et al. J Neurol Neurosurg Psychiatry. 1997;63(1):89-93; 2. Smith RA, et al. Mult Scler 2004;10:1-7.
STUDY METHODOLOGY
Gridiron Greats was founded by Jerry Kramer in 2007
The mission is to provide support to retired football players and their families with hardships they face after their football careers such as:
Medical and dental services
Medication
Transportation costs for medical evaluations and surgeries
Housing and costs of utilities
Coordination of services for food and other daily necessities
5http://gridirongreats.org/mission/
GRIDIRON GREATS ASSISTANCE FUND
1There are times when I feel fine 1 minute, and then I’ll become tearful the next over something small or for no reason at all
2Others have told me that I seem to become amused very easily or that I seem to become amused about things that really aren’t funny
3 I find myself crying very easily
4 I find that even when I try to control my laughter, I am often unable to do so
5There are times when I won’t be thinking of anything happy for funny at all, but then I’ll suddenly be overcome by funny or happy thoughts
6 I find that even when I try to control my crying, I am often unable to do so
7 I find that I am easily overcome by laughter
For purposes of the survey, the presence of PBA symptoms was defined as either: a CNS-LS ≥ 13, or if <13 answering “yes” to the following question:
“Have you (has the player) experienced sudden, involuntary episodes of crying and/or laughing that were exaggerated or even contrary to how you (he) felt at the time”
1. Moore, SR, et al. J Neurol Neurosurg Psychiatry. 1997;63(1):89-93; 2. Smith RA, et al. Mult Scler 2004;10:1-7.
Center for Neurologic Study - Lability Scale (CNS-LS)
1: Never 2: Rarely 3: Occasionally 4: Frequently 5: Most of the time
Describe the degree to which each item applies to you DURING THE PAST WEEK
ASSESSMENT OF PBA SYMPTOMS
Sample demographics: 516 total respondents
474 former professional football players + 42 family caregivers
All former players were male
Median player age was 56 - 65 years
Most players were married (76%)
Race: 65% White, 31% Black/African American
Education: 85% had a bachelor’s degree or higher; all but 1 player had attended at least some college
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23 (3%)did not qualify
231 (30%)terminated
early
Approximately 7000 surveys
sent
770 clicked on the survey
516 (67%) completed the survey
DEMOGRAPHICS
8
99% of former players had experienced some form of head injury during their football career:
73% (N=378) had “suffered from a head injury, concussion, or TBI”
Among those who did not report head injury on initial question (n=138); all but 3 reported experiencing some form of blow to the head
Most reported multiple head injuries; 60% reporting more than 5; 16% reporting more than 21
'Had [your/their] bell rung'
Taken a hit to the head and felt dizzy or wobbly after
Taken a hit to the head, but experienced no side effects
Taken a hit to the head and had a headache immediately after, or within the next few days
Taken a hit to the head and experienced temporary memory loss (either immediately or within a few days)
None of these
0% 50% 100%
75%
70%
44%
35%
28%
2%
Former players who did not identify as having a head injury (n=138) were asked: “During your/their football career, have you/have they
ever..?”
Head In-jury, Con-cussion or
TBI73%
No27%
Head injury was defined as, “skull fracture, being knocked unconscious, having a head injury requiring hospitalization, feeling wobbly or disoriented after taking a hit to the head, or experiencing temporary memory loss after being hit.”
Have you personally suffered/has the person you live with who played professional football suffered from a head injury, concussion or TBI?
PREVALENCE OF HEAD INJURY
9
Q: Due to your (the football players’) head injury(s), have you (they) ever personally experienced the following?
0
10
20
30
40
50
60
70
80
62
5552
37 35
12
4
25
1719
Resp
on
den
ts,
%
41% reported emotional lability (n=209)
13% reported laughing and/or crying (n=66)
EXPERIENCE OF SYMPTOMS ATTRIBUTABLE TO HEAD INJURY (N=513)
10
48% of former football players with a head injury (N=513) self-classified these injuries collectively as moderate or severe
Concern for future head injury-related complications increased with reported severity
Mild52%
Moderate 42%
Severe6%
Severe: Was hospitalized and/or diagnosed with a severe brain injury and/or experienced many long lasting effects.
Moderate: Lost consciousness and/or diagnosed with a concussion/fracture and/or experienced some long lasting effects.
Mild: Experienced temporary dizziness and/or other short term symptoms, but no real long lasting effects.
Reported Severity of Head Injury:
Thinking of all the head injuries you have/the football player has suffered collectively, how would you classify the severity?
HEAD INJURY SEVERITY
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► Overall, 33% (168/516) of respondents had PBA symptoms; including:
31% (n=158) with a CNS-LS score ≥13; and 2% (n=10) with CNS-LS <13 who answered “yes” to the follow-on question about involuntary/excessive laughing or crying
8% (41/516) had CNS-LS ≥21, suggesting moderate to severe PBA symptoms
► The 168 with PBA symptoms were asked about episode frequency:
Few Times a Year Few Times a Month At Least Once a Week
At Least Once a Day0%
50%
42%
27%
20%
10%
Pe
rce
nta
ge
of
Re
spo
nd
en
ts
How frequently do you (the player) experience these episodes of sudden, uncontrollable crying or laughing?
30% experienced crying or laughing episodes at least weekly
Laughing/crying episode frequency correlated with increased CNS-LS score (Pearson correlation, 0.424; P<.0001)
PBA SYMPTOM PREVALENCE & FREQUENCY
“How often do these sudden, uncontrollable crying or laughing episodes interfere with ability to do any of the following?”
PBA SYMPTOMS INTERFERED WITH ACTIVITIES AND RELATIONSHIPS (N=168)
Spend time with friends and familyMaintain a marriage or significant
relationshipWork
Participate in social activities
Talk on the telephone
Make and keep friends
Go to the moviesAttending or participating in a sporting
eventParticipate in group community activities
Shop
Drive a car
Dine out
Interact with healthcare professionals
Participate in rehabilitation therapy
VolunteerAttend church/synagogue/house of
worshipLive independently
13%
13%
9%
8%
11%
11%
9%
7%
8%
3%
7%
5%
4%
5%
8%
9%
7%
30%
25%
24%
26%
21%
19%
20%
23%
20%
10%
20%
19%
20%
12%
19%
18%
12%
43%
38%
33%
34%
32%
30%
29%
30%
28%
13%
27%
24%
24%
17%
27%
27%
19%
► Increasing PBA symptoms (CNS-LS) were correlated with greater interference
Very Often Sometimes
► Sudden uncontrollable crying/laughing episodes were associated with feelings of depression, isolation, loneliness, and embarrassment; the frequency of experiencing each of these negative emotions showed significant correlation with CNS-LS score
Psychological Impact of Uncontrollable Crying or Laughing Episodes in Respondents with PBA Symptoms (N=168)
Possible responses were “most of the time”, “frequently”, “occasionally” or “rarely”. Responses of “rarely” or “occasionally” are not shown.
Depressed
Isolated
Alone
Embarrassed
A little bit crazy
Like a burden to others
Scared
Out of control
29%
20%
20%
20%
19%
19%
16%
13%
21%
19%
18%
16%
13%
11%
12%
11%
50%
39%
38%
36%
32%
30%
28%
24%
Frequently Most of the Time Series3
*Pearson correlation of CNS-LS score and frequency response for each item; P < .0001
Possible responses were “most of the time”, “frequently”, “occasionally” or “rarely”. Responses of “rarely” or “occasionally” are not shown.
0.36*
0.34*
0.40*
0.34*
0.40*
0.50*
0.42*
0.46*
Pearson correlation coefficients
PSYCHOLOGICAL IMPACT OF PBA SYMPTOMS
Don’t feel the symptoms are serious
enough
Thought it was just depression
Too embarrassed to mention
Believed it was just a symptom or part of
the head injury
Don’t feel the doctor can offer any answers
Other
43%
29%
25%
25%
24%
14%
Reasons for Not Discussing (N=123)
Have you discussed uncontrollable laughing/crying episodes with a healthcare
professional?(N=168)
► 73% (123/168) of those with PBA symptoms had not discussed laughing or crying episodes with a healthcare provider (HCP)
► Of the 16% (n=27) who discussed PBA symptoms with a HCP
14 received any diagnosis for the symptoms; most commonly depression, bipolar disorder or other mood disorder (n=6)
None were diagnosed with PBA (or related term) as a result of these discussions
PBA SYMPTOMS WERE OFTEN NOT REPORTED TO HEALTHCARE PROVIDERS
0%
10%
20%
30%
40%
50%
60%
70%
80%73%
16%11%
NO YES I DON’T KNOW
CONCLUSION
Most (99%) former professional football players responding to this Gridiron Greats Assistance Fund survey (N=516) reported some form of head injury during their playing career
33% (n=168) reported symptoms suggestive of PBA (either CNS-LS ≥13 or CNS-LS <13 with presence of sudden, uncontrolled, excessive or inappropriate crying or laughing)
Higher CNS-LS scores were associated with greater laughing crying episode frequency, greater psychological impact of episodes and greater interference with activities and relationships
Few players discussed laughing/crying episodes with a medical professional; when they did it did not result in a PBA diagnosis
Survey results demonstrate the need for greater awareness, screening and detection of PBA among former professional athletes; proper diagnosis may impact treatment decisions
THANK YOU
I would like to acknowledge and thank the Gridiron Greats Assistance Fund and the athletes and caregivers who participated in this survey.