Patient Demographics Social Information PATIENT DEMOGRAPHICS And & SOCIAL INFORMATION Form filled out by: Patient with no help Patient with help from family and/or friend Family member or friend Patient with help from healthcare provider
Brain (N=70) 58 (83%) 5 (7%) 6 (9%) 1 (1%)
Spine (N=81) 71 (88%) 4 (5%) 6 (7 %) 0
Brain & Spine (N=8) 8 (100%) 0 0 0
Brain 35 (50%) 35 (50%)
Spine 37 (46%) 44 (54%)
Brain & Spine 2 (25%) 6 (75%)
Brain 46 45 18-‐77
Spine 49 48 23-‐76
Brain & Spine 45 47 22-‐66
Brain 40 40 18-‐72
Spine 41 39 19-‐70
Brain & Spine 41 42 18-‐66
Spine 70 (86%) 3 (4%) 6 (7%)
Brain & Spine 6 (75%) 1 (13%) 1 (13%)
What is the patient’s gender? Male Female What is your current age?
Mean Median Range What was your age at your original diagnosis? Mean Median Range
Have you enrolled in a formal clinical trial (other than the EO Project)? No Yes Unsure
Brain 60 (86%) 5 (7%) 4 (6%)
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Marital status: Never married Married Divorced Widowed Separated
Brain 13 (19%) 49 (70%) 4 (6%) 1 (1%) 0
Spine 8 (10%) 58 (72%) 12 (15%) 0 1 (1%)
Brain & Spine 1 (13%) 6 (75%) 0 0 0
Brain 2 (3%) 5 (7%) 16 (23%) 24 (34%) 21 (30%)
Spine 0 7 (9%) 17 (21%) 27 (33%) 28 (35%)
Brain & Spine 0 0 2 (25%) 0 4 (50%)
What is the highest grade you completed in school? Some high school High school graduate Some college College graduate Any postgraduate work
Which of the following categories best describes your household’s total income before taxes last year? Less than $20,000 $20,000-‐$39,999 $40,000-‐$59,999 $60,000-‐$79,999 $80,000-‐$99,999 $100,000 or more Prefer not to say
Brain 6 (9%) 3 (4%) 8 (11%) 9 (13%) 11 (16%) 23 (33%) 6 (9%)
Spine 5 (6%) 10 (12%) 10 (12%) 6 (7%) 1 (1%) 32 (40%) 13 (16%)
Brain & Spine 0 1 (13%) 0 1 (13%) 1 (13%) 4 (50%) 0
Brain 64 (91%) 4 (6%)
Spine 74 (91%) 5 (6%)
Brain & Spine 7 (88%) 0
Are you receiving home care services? No Yes
4
What health insurance provides your coverage? Medicare Medex or Medicare supplement Medicaid HMO BC/BS, other commercial insurance CHAMPUS (government) Canadian Provincial Insurance Other None
Brain 18 (26%) 7 (10%) 5 (7%) 7 (10%) 32 (46%) 2 (3%) 3 (4%) 15 (21%) 3 (4%)
Spine 18 (22%) 5 (6%) 3 (4%) 8 (10%) 40 (49%) 2 (3%) 2 (3%) 17 (21%) 0
Brain & Spine 0 0 0 0 5 (63%) 0 0 1 (13%)
In providing payment for the care of my ependymoma, my insurance company has been: N/A Very helpful Somewhat helpful Unhelpful
Brain 6 (9%) 54 (77%) 7 (10%) 1 (1%)
Spine 4 (5%) 48 (59%) 23 (28%) 2 (3%)
Brain & Spine 0 6 (75%) 1 (13%) 0
Brain 39 (56%) 23 (33%) 5 (7%)
Spine 36 (44%) 33 (41%) 8 (10%)
Brain & Spine 2 (25%) 3 (38%) 2 (25%)
Brain 7 (10%) 22 (31%) 37 (53%)
Spine 22 (27%) 26 (32%) 31 (38%)
Brain & Spine 1 (13%) 4 (50%) 2 (25%)
Brain 40 (57%) 27 (39%)
Spine 54 (67%) 25 (31%)
Brain & Spine 5 (63%) 2 (25%)
Are you currently working? No Full-‐time Part-‐time
Have you changed jobs since you were diagnosed with an ependymoma? Different job Same job Not working Are you receiving disability benefits? No Yes
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How knowledgeable do you feel about your ependymoma? Very knowledgeable Somewhat knowledgeable Need more information
Brain 22 (31%) 41 (59%) 2 (3%)
Spine 32 (40%) 35 (43%) 9 (11%)
Brain & Spine 3 (38%) 4 (50%) 0
Which organizations have given you information or help with your ependymoma? American Cancer Society American Brain Tumor Association National Brain Tumor Foundation Brain Trust Spinal Cord Tumor Association Other
Brain 16 (23%) 33 (47%) 21 (30%) 11 (16%) 0 13 (19%)
Spine 10 (12%) 7 (9%) 4 (5%) 4 (5%) 32 (40%) 15 (19%)
Brain & Spine 0 3 (38%) 2 (25%) 0 0 3 (38%)
Do you feel that you have had access to all the healthcare you need for your ependymoma?
Brain 11 (16%) 57 (81%)
No Yes
Spine 19 (24%) 59 (73%)
Brain & Spine 0 7 (88%)
In general, have you been satisfied with the medical care you have received for your ependymoma? Very satisfied Somewhat satisfied Not satisfied Very unsatisfied
Brain 47 (67%) 16 (23%) 4 (6%) 0
Spine 32 (40%) 36 (44%) 4 (5%) 7 (9%)
Brain & Spine 6 (75%) 1 (13%) 0 0
Brain 9 (13%) 58 (83%)
Spine 13 (16%) 66 (82%)
Brain & Spine 0 7 (88%)
Brain 51 (73%) 17 (24%)
Spine 56 (69%) 23 (28%)
Brain & Spine 6 (75%) 1 (13%)
Do you live with someone who can help take care of you? No Yes Are you part of an ependymoma support group? No Yes
6
4/18/2012
Diagnosis and Treatment Course CLINICAL CHARACTERISTICS/COURSE What type of surgery did you first have for your ependymoma? Biopsy (needle, stereotactic) Craniotomy with part of tumor removed Craniotomy with all of tumor removed Craniotomy for biopsy Spine surgery for biopsy Spine surgery with part of tumor removed Spine surgery with all of tumor removed No surgery yet
Brain (N=70) 2 (3%) 22 (31%) 45 (64%) 1 (1%) 0 0 0 0
Spine (N=81) 3 (4%) 0 1 (1%) 0 2 (3%) 21 (26%) 46 (57%) 2 (3%)
Brain & Spine (N=8) 0 1 (13%) 4 (50%) 0 0 0 3 (38%) 0
Brain 41 (59%) 15 (21%) 0 4 (6%) 2 (3%) 0 8 (11%)
Spine 46 (57%) 3 (4%) 22 (27%) 1 (1%) 0 1 (1%) 6 (7%)
Brain & Spine 6 (75%) 0 1 (13%) 0 0 1 (13%) 0
Brain 20 (29%) 27 (39%) 14 (20%) 8 (11%)
Spine 46 (57%) 24 (30%) 2 (3%) 7 (9%)
Brain & Spine 1 (13%) 6 (75%) 0 1 (13%)
What was the name of your first ependymoma tumor? Ependymoma Anaplastic ependymoma Myxopapillary ependymoma Subependymoma Tanycytic ependymoma Giant cell ependymoma Did not know name What was the grade of your first ependymoma tumor? Did not know the grade II III Other
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If your ependymoma was in the BRAIN, where in the brain was it located? Left side Right side Midline Bilateral Frontal lobe Temporal lobe Parietal lobe Occipital lobe Cerebellum Brainstem Other I don’t know
n 13 17 5 0 7 5 11 7 17 38 7 1
% 17 22 6 0 9 6 14 9 22 49 9 1
n 36 28 34 17 3
% 40 32 38 19 3
If your ependymoma was in the SPINE, where in the spine was it located? Cervical Thoracic Lumbar Sacral I don’t know What was the number of tumor sites for your first ependymoma tumor? Single Multiple Did not know
Brain 57 (81%) 5 (7%) 6 (9%)
Spine 70 (86%) 8 (10%) 2 (3%)
Brain & Spine 7 (88%) 1 (13%) 0
Brain 52 (74%) 17 (24%)
Spine 63 (78%) 17 (21%)
Brain & Spine 6 (75%) 2 (25%)
Did your first ependymoma tumor enhance on MRI? Yes Did not know
8
At your first surgery, did you have any of the following symptoms? Sleepiness Headache Memory loss Nausea/vomiting Trouble speaking or writing Personality change Weakness Seizures Problems thinking or completing tasks Numbness or tingling in the arms/legs/body Visual problems Back pain Radiating back pain Problems urinating Sexual dysfunction
Brain 15 (21%) 37 (53%) 14 (20%) 30 (43%) 14 (20%) 10 (14%) 23 (33%) 7 (10%) 16 (23%) 20 (29%) 32 (46%) 5 (7%) 3 (4%) 1 (1%) 1 (1%)
Spine 11 (14%) 12 (15%) 4 (5%) 2 (3%) 4 (5%) 3 (4%) 39 (48%) 1 (1%) 6 (7%) 51 (63%) 3 (4%) 40 (49%) 31 (38%) 16 (20%) 11 (14%)
Brain & Spine 0 4 (50%) 0 1 (13%) 1 (13%) 0 2 (25%) 0 1 (13%) 3 (38%) 2 (25%) 0 0 1 (13%) 1 (13%)
Estimate the amount of time between your initial symptoms and your first surgery. No symptoms <1 month 1-‐2 months 3-‐4 months 5-‐6 months 4/18/2012 7-‐11 months 1-‐4 years >=5 years Prior to your first surgery, did you have any of the following? Depression Blood clot in leg Bleeding in the brain Infection Seizure Stomach ulcer Hydrocephalus Problems thinking or completing tasks Diabetes Steroid myopathy Drug allergy Paralysis Incontinence Recurrent urinary tract infections 9 After your first surgery, how was your condition?
Brain 3 (4%) 16 (23%) 8 (11%) 12 (17%) 7 (10%) 6 (9%) 13 (19%) 4 (6%)
Spine 2 (3%) 5 (6%) 5 (6%) 8 (10%) 4 (5%) 13 (16%) 26 (32%) 17 (21%)
Brain & Spine 0 0 1 (13%) 0 2 (25%) 1 (13%) 3 (38%) 1 (13%)
Brain 12 (17%) 2 (3%) 3 (4%) 2 (3%) 8 (11%) 4 (6%) 13 (19%) 16 (23%) 2 (3%) 1 (1%) 4 (6%) 1 (1%) 1 (1%) 0
Spine 13 (16%) 0 1 (1%) 0 1 (1%) 3 (4%) 0 7 (9%) 3 (4%) 16 (20%) 5 (6%) 5 (6%) 7 (9%) 7 (9%)
Brain & Spine 1 (13%) 0 1 (13%) 0 0 0 3 (38%) 0 0 1 (13%) 1 (13%) 0 1 (13%) 1 (13%)
Recurrent urinary tract infections
0
7 (9%)
1 (13%)
Brain 43 (61%) 18 (26%) 5 (7%)
Spine 40 (49%) 30 (37%) 9 (11%)
Brain & Spine 5 (63%) 1 (13%) 1 (13%)
Spine 4 (5%) 2 (3%) 0 0 3 (4%) 5 (6%) 32 (40%) 20 (25%) 11 (14%) 14 (17%) 20 (25%)
Brain & Spine 2 (25%) 1 (13%) 1 (13%) 1 (13%) 1 (13%) 1 (13%) 5 (63%) 1 (13%) 1 (13%) 2 (25%) 0
Spine 15 (19%) 0 5 (6%) 0 53 (66%)
Brain & Spine 2 (25%) 0 1 (13%) 0 4 (50%)
Brain 0 56 (80%) 6 (9%) 6 (9%) 1 (1%)
Spine 2 (3%) 47 (58%) 14 (17%) 8 (10%) 3 (4%)
Brain & Spine 0 5 (63%) 2 (25%) 0 0
Brain 28 (40%) 26 (37%) 4 (6%) 15 (21%) 10 (14%)
Spine 47 (58%) 18 (22%) 7 (9%) 8 (10%) 20 (25%)
Brain & Spine 3 (38%) 5 (63%) 0 2 (25%) 1 (13%)
After your first surgery, how was your condition? Better Worse Same
Did you have any of the following complications with the first surgery? Infection Blood clot Bleeding in the brain Seizure Diabetes Drug allergy Weakness Paralysis Inability to urinate 4/18/2012 Incontinence Sexual dysfunction
Brain 11 (16%) 5 (7%) 2 (3%) 7 (10%) 1 (1%) 2 (3%) 23 (33%) 6 (9%) 5 (7%) 0 5 (7%)
After your first surgery, which of the following treatments did you receive? Radiation therapy alone Chemotherapy alone Chemotherapy & radiation therapy Chemotherapy, radiation therapy & radiosurgery 10 None
Brain 27 (39%) 1 (1%) 9 (13%) 1 (1%) 30 (43%)
How many surgeries have you had for your ependymoma tumor? 0 1 2 3 >3 What type of doctor do you follow for your ependymoma? Neurosurgeon Neuro-‐Oncologist Oncologist Radiation oncologist Family doctor or internal medicine
>3
1 (1%)
3 (4%)
0
Brain 28 (40%) 26 (37%) 4 (6%) 15 (21%) 10 (14%)
Spine 47 (58%) 18 (22%) 7 (9%) 8 (10%) 20 (25%)
Brain & Spine 3 (38%) 5 (63%) 0 2 (25%) 1 (13%)
Brain 10 (14%) 11 (16%) 11 (16%) 1 (1%) 2 (3%) 1 (1%) 25 (36%)
Spine 6 (7%) 17 (21%) 15 (19%) 6 (7%) 8 (10%) 3 (4%) 19 (24%)
Brain & Spine 0 1 (13%) 5 (63%) 0 0 0 2 (25%)
Brain 4 (6%) 5 (7%) 15 (21%) 36 (51%) 6 (9%)
Spine 7 (9%) 3 (4%) 23 (28%) 39 (48%) 7 (9%)
Brain & Spine 0 0 2 (25%) 6 (75%) 0
Brain 16 (23%) 14 (20%) 2 (3%) 11 (16%)
Spine 13 (16%) 19 (24%) 4 (5%) 35 (43%)
Brain & Spine 0 2 (25%) 0 1 (13%)
Brain 173 95-‐353
Spine 182 112-‐380
Brain & Spine 153 72-‐210
Brain
Spine
Brain & Spine
What type of doctor do you follow for your ependymoma? Neurosurgeon Neuro-‐Oncologist Oncologist Radiation oncologist Family doctor or internal medicine How often do you have a MRI? Every 2 months Every 6 months Every year Every 2 years >2 years since last MRI Only when I have a concern 4/18/2012 Other your last clinic visit, did your MRI show the tumor is: At Larger Smaller Unchanged Not present MRI not done
11
Which of the following medications are you taking? Anti-‐seizure Antidepressant Corticosteroid Pain What is your current weight (in lbs)? Mean Range Since diagnosed with an ependymoma, has your weight gone:
Pain
11 (16%)
35 (43%)
1 (13%)
Brain 173 95-‐353
Spine 182 112-‐380
Brain & Spine 153 72-‐210
Brain 21 (30%) 16 (23%) 27 (39%) 2 (3%)
Spine 15 (19%) 36 (44%) 26 (32%) 3 (4%)
Brain & Spine 1 (13%) 2 (25%) 3 (38%) 0
Brain 52 (74%) 18 (26%)
Spine 68 (84%) 12 (15%)
Brain & Spine 7 (88%) 1 (13%)
Brain 22 (31%) 48 (69%)
Spine 45 (56%) 36 (44%)
Brain & Spine 4 (50%) 4 (50%)
Spine 13 (16%) 9 (11%) 2 (3%) 12 (15%) 5 (6%) 6 (7%) 10 (12%)
Brain & Spine 0 0 0 0 0 0 1 (13%)
What is your current weight (in lbs)? Mean Range Since diagnosed with an ependymoma, has your weight gone: Down Up About the same Did not know Have you received chemotherapy for your ependymoma? No Yes Have you received radiation therapy for your ependymoma? 4/18/2012 No Yes
Have you used any alternative treatments for your ependymoma? 12 High dose vitamins Herbs Macrobiotic diet Acupuncture Faith healer Meditation Other
Brain 3 (4%) 0 1 (1%) 5 (7%) 3 (4%) 6 (9%) 5 (7%)
If you had surgery and could go back in time and make the same decision again, would you choose to have your most recent ependymoma surgery? No, definitely not No, probably not Yes, probably Yes, definitely
Brain 3 (4%) 3 (4%) 6 (9%) 53 (76%)
Spine 5 (7%) 6 (8%) 16 (22%) 45 (62%)
Brain & Spine 0 0 0 8 (100%)
If you had surgery and could go back in time and make the same decision again, would you choose to have your most recent ependymoma surgery? No, definitely not No, probably not Yes, probably Yes, definitely
Brain 3 (4%) 3 (4%) 6 (9%) 53 (76%)
Spine 5 (7%) 6 (8%) 16 (22%) 45 (62%)
Brain & Spine 0 0 0 8 (100%)
If you received chemotherapy and could go back in time and make the same decision again, would you choose to have chemotherapy for your ependymoma? No, definitely not No, probably not Yes, probably Yes, definitely
Brain 0 3 (17%) 3 (17%) 9 (50%)
Spine 1 (8%) 1 (8%) 2 (17%) 8 (67%)
Brain & Spine 0 0 1 (100%) 0
If you had radiation therapy and could go back in time and make the same decision again, would you choose to have radiation therapy for your ependymoma? No, definitely not No, probably not Yes, probably Yes, definitely
Brain 4 (8%) 2 (4%) 11 (23%) 30 (63%)
13
Spine 5 (14%) 6 (17%) 6 (17%) 17 (47%)
Brain & Spine 0 0 1 (25%) 3 (75%)
Yes No
Brain 6 (9%) 57 (81%)
Spine 4 (5%) 69 (84%)
Brain & Spine 1 (13%) 7 (87%)
Brain 69 53 1-‐458
Spine 96 74 2-‐456
Brain & Spine 54 53 7-‐96
Brain 13 (19%) 41 (59%) 9 (13%) 1 (1%) 4 3 1-‐13
Spine 19 (23%) 48 (59%) 10 (12%) 1 (1%) 3 3 0-‐11
Brain & Spine 4 (50%) 4 (50%) 0 0 2 2 1-‐3
Diagnosis and Treatment Course Data
What was the time frame (in months) between diagnosis and the EOQ? Mean Median Range Number of presenting symptoms 0-‐1 2-‐5 6-‐10 ≥ 11 Mean Median Range
30
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Recurrence RECURRENCE Has your ependymoma recurred? No Yes
Brain (N=70) 46 (66%) 23 (33%)
Spine (N=81) 50 (62%) 28 (35%)
Brain & Spine (N=8) 7 (88%) 1 (13%)
Brain 9 (39%) 0 7 (30%) 1 (4%) 4 (17%)
Spine 7 (25%) 13 (46%) 3 (11%) 0 4 (14%)
Brain & Spine 1 (100%) 0 0 0 0
Brain 13 (57%) 5 (22%) 2 (9%)
Spine 12 (43%) 4 (14%) 9 (32%)
Brain & Spine 1 (100%) 0 0
Brain 7 (30%) 15 (65%)
Spine 4 (14%) 23 (82%)
Brain & Spine 0 1 (100%)
What was the name of your ependymoma tumor at recurrence? Ependymoma Myxopapillary ependymoma Anaplastic ependymoma Subependymoma Did not know name How many recurrences? 1 2 >2 Did it recur in the same location? No Yes
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What symptoms did you have the first time it recurred? Sleepiness Headache Memory loss Nausea/vomiting Trouble speaking or writing Personality change Weakness Seizures Problems thinking or completing tasks Numbness or tingling in arms, legs or body Visual problems (double vision or loss of vision) Back pain Radiating back pain Problems urinating (incontinence or inability to void) Sexual dysfunction
Brain 3 (13%) 6 (26%) 0 1 (4%) 0 0 0 1 (4%) 1 (4%) 6 (26%) 0 3 (13%) 1 (4%) 0 0
Spine 1 (4%) 3 (11%) 4 (14%) 1 (4%) 1 (4%) 1 (4%) 17 (61%) 0 3 (11%) 16 (57%) 2 (7%) 15 (54%) 12 (43%) 8 (29%) 6 (21%)
Brain & Spine 0 0 0 0 0 0 0 1 (100%) 0 0 0 0 0
Brain 2 (9%) 4 (17%) 3 (13%) 1 (4%) 3 (13%) 3 (13%) 1 (4%) 0
Spine 9 (32%) 8 (29%) 1 (4%) 1 (4%) 2 (7%) 2 (7%) 0 3 (11%)
Brain & Spine 0 0 0 0 1 (100%) 0 0
What treatment did you receive after the recurrence? Surgery only Radiation only Chemotherapy only Radiation & chemotherapy Surgery & radiation Surgery & chemotherapy Surgery & radiosurgery Surgery, radiation & chemotherapy
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QUALITY OF LIFE QOf UESTIONNAIRE Quality Life Please indicate how you felt in the past week: I can remember new things Not at all Somewhat Quite a bit Very much
Brain (N=70) 4 (6%) 17 (24%) 19 (27%) 27 (39%)
Spine (N=81) 6 (7%) 10 (12%) 25 (31%) 37 (46%)
Brain & Spine (N=8) 0 0 3 (38%) 5 (63%)
Brain 21 (30%) 29 (41%) 8 (11%) 9 (13%)
Spine 49 (61%) 24 (30%) 4 (5%) 2 (3%)
Brain & Spine 5 (63%) 2 (25%) 1 (13%) 0
Brain 10 (14%) 15 (21%) 18 (26%) 24 (34%)
Spine 9 (11%) 20 (25%) 17 (21%) 33 (41%)
Brain & Spine 1 (13%) 1 (13%) 1 (13%) 5 (63%)
Brain 41 (59%) 12 (17%) 9 (13%) 5 (7%)
Spine 47 (58%) 22 (27%) 7 (9%) 3 (4%)
Brain & Spine 8 (100%) 0 0 0
I have trouble with my vision Not at all Somewhat Quite a bit Very much I am able to find the right word(s) to say what I mean Not at all Somewhat Quite a bit Very much I have trouble expressing my thoughts Not at all Somewhat Quite a bit Very much
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I am able to put my thoughts into action Not at all Somewhat Quite a bit Very much
Brain 7 (10%) 17 (24%) 16 (23%) 27 (39%)
Spine 8 (10%) 15 (19%) 19 (24%) 37 (46%)
Brain & Spine 2 (25%) 1 (13%) 0 5 (63%)
Brain 32 (46%) 28 (40%) 6 (9%) 1 (1%)
Spine 39 (48%) 28 (35%) 6 (7%) 6 (7%)
Brain & Spine 5 (63%) 2 (25%) 1 (13%) 0
Brain 26 (37%) 25 (36%) 9 (13%) 6 (9%)
Spine 11 (14%) 21 (26%) 14 (17%) 33 (41%)
Brain & Spine 5 (63%) 1 (13%) 2 (25%) 0
Brain 20 (29%) 22 (31%) 10 (14%) 15 (21%)
Spine 23 (28%) 25 (31%) 15 (19%) 16 (20%)
Brain & Spine 3 (38%) 3 (38%) 1 (13%) 1 (13%)
Brain 61 (87%) 3 (4%) 0 2 (3%)
Spine 72 (89%) 3 (4%) 1 (1%) 2 (3%)
Brain & Spine 8 (100%) 0 0 0
My personality has changed Not at all Somewhat Quite a bit Very much I have weakness in some parts of my body Not at all Somewhat Quite a bit Very much I have trouble with coordination Not at all Somewhat Quite a bit Very much I have had seizures Not at all Somewhat Quite a bit Very much
17
I have had headaches Not at all Somewhat Quite a bit Very much
Brain 35 (50%) 18 (26%) 2 (3%) 11 (16%)
Spine 43 (53%) 23 (28%) 9 (11%) 4 (5%)
Brain & Spine 3 (38%) 5 (63%) 0 0
Brain 17 (24%) 22 (31%) 15 (21%) 13 (19%)
Spine 8 (10%) 32 (40%) 22 (27%) 17 (21%)
Brain & Spine 5 (63%) 1 (13%) 0 2 (25%)
Brain 17 (24%) 23 (33%) 14 (20%) 12 (17%)
Spine 12 (15%) 31 (38%) 16 (20%) 18 (22%)
Brain & Spine 5 (63%) 1 (13%) 0 2 (25%)
Brain 47 (67%) 10 (14%) 6 (9%) 4 (6%)
Spine 54 (67%) 15 (19%) 7 (9%) 2 (3%)
Brain & Spine 6 (75%) 2 (25%) 0 0
Brain 42 (60%) 14 (20%) 8 (11%) 3 (4%)
Spine 40 (49%) 23 (28%) 8 (10%) 7 (9%)
Brain & Spine 6 (75%) 2 (25%) 0 0
I get tired easily Not at all Somewhat Quite a bit Very much I am slower to do things Not at all Somewhat Quite a bit Very much I feel sick Not at all Somewhat Quite a bit Very much I spend time in bed Not at all Somewhat Quite a bit Very much
18
I need help caring for myself Not at all Somewhat Quite a bit Very much
Brain 55 (79%) 8 (11%) 1 (1%) 3 (4%)
Spine 55 (68%) 9 (11%) 8 (10%) 6 (7%)
Brain & Spine 7 (88%) 1 (13%) 0 0
Brain 8 (11%) 6 (9%) 18 (26%) 34 (49%)
Spine 15 (19%) 13 (16%) 18 (22%) 31 (38%)
Brain & Spine 2 (25%) 1 (13%) 1 (13%) 4 (50%)
Brain 31 (44%) 17 (24%) 15 (21%) 2 (3%)
Spine 24 (30%) 28 (35%) 17 (21%) 8 (10%)
Brain & Spine 5 (63%) 2 (25%) 0 1 (13%)
Brain 17 (24%) 15 (21%) 7 (10%) 27 (39%)
Spine 15 (19%) 20 (25%) 13 (16%) 29 (36%)
Brain & Spine 2 (25%) 2 (25%) 0 4 (50%)
Brain 16 (23%) 4 (6%) 13 (19%) 33 (47%)
Spine 14 (17%) 13 (16%) 6 (7%) 45 (56%)
Brain & Spine 3 (38%) 0 0 5 (63%)
I get support from my family Not at all Somewhat Quite a bit Very much I feel sad Not at all Somewhat Quite a bit Very much I am able to work Not at all Somewhat Quite a bit Very much I am able to drive Not at all Somewhat Quite a bit Very much
19
I am able to enjoy my leisure pursuits Not at all Somewhat Quite a bit Very much
Brain 10 (14%) 20 (29%) 13 (19%) 25 (36%)
Spine 9 (11%) 32 (40%) 15 (19%) 21 (26%)
Brain & Spine 3 (38%) 0 1 (13%) 4 (50%)
Brain 9 (13%) 21 (30%) 18 (26%) 20 (29%)
Spine 14 (17%) 30 (37%) 21 (26%) 13 (16%)
Brain & Spine 3 (38%) 0 0 5 (63%)
I am content with the quality of my life Not at all Somewhat Quite a bit Very much
20
Health Survey SF-‐36 HEALTH SURVEY In general, would you say your health is:
Brain (N=70) 13 (19%) 25 (36%) 21 (30%) 4 (6%) 4 (6%)
Excellent Very good Good Fair Poor
Spine (N=81) 8 (10%) 11 (14%) 35 (43%) 20 (25%) 3 (4%)
Brain & Spine (N=8) 2 (25%) 3 (38%) 2 (25%) 0 1 (13%)
Spine 4 (5%) 12 (15%) 34 (42%) 20 (25%) 7 (9%)
Brain & Spine 2 (25%) 3 (38%) 3 (38%) 0 0
Compared to 1 year ago, how would you rate your general health now? Much better Somewhat better Same Somewhat worse Much worse
Brain 7 (10%) 10 (14%) 35 (50%) 9 (13%) 5 (7%)
The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much? Vigorous activities such as running, lifting heavy objects, participating in strenuous sports No Yes, a little Yes, a lot Moderate activities such as moving a table, pushing a vacuum cleaner, bowling or playing golf No Yes, a little Yes, a lot Lifting or carrying groceries No Yes, a little Yes, a lot Climbing several flights of stairs No Yes, a little Yes, a lot
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Brain
Spine
Brain & Spine
16 (23%) 14 (20%) 39 (56%)
4 (5%) 11 (14%) 64 (79%)
2 (25%) 3 (38%) 3 (38%)
33 (47%) 15 (21%) 21 (30%) 44 (63%) 14 (20%) 11 (16%) 37 (53%) 11 (16%) 21 (30%)
19 (24%) 31 (38%) 29 (36%) 27 (33%) 33 (41%) 19 (24%) 22 (27%) 25 (31%) 32 (40%)
6 (75%) 0 2 (25%) 6 (75%) 0 2 (25%) 6 (75%) 1 (13%) 1 (13%)
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Much worse
5 (7%)
7 (9%)
0
4/18/2012
The following items are about activities you might do during a typical day. Does your health now limit
you in these activities? If so, how much?
Climbing one flight of stairs activities such as running, lifting heavy objects, Vigorous No participating Yes, a little in strenuous sports o a lot YNes, Yes, a little Bending, kneeling or stooping Yes, a lot No Moderate activities such as moving a table, pushing a vacuum Yes, a little cleaner, bowling or playing golf YNes, o a lot Walking more than a mile Yes, a little NYo es, a lot r carrying groceries Lifting Yes, a olittle YNes, o a lot Yes, a little Walking several blocks Yes, a lot No Climbing several flights of stairs Yes, a little No YYes, es, aa llot ittle Walking one block Yes, a lot No Yes, a little Yes, a lot Bathing or dressing self 21 No Yes, a little Yes, a lot
Brain 44 (63%)
13 (19%) 16 ((14%) 23%) 10 14 (20%) 39 (56%) 41 (59%) 15 (21%) 13 33 ((19%) 47%) 15 (21%) 37 21 (53%) 30%) 11 (16%) 44 ( 63%) 21 (30%) 14 (20%) 11 (16%) 41 (59%) 12 (17%) 37 (53%) 16 11 ((23%) 16%) 21 (30%) 49 (70%) 9 (13%) 11 (16%) 54 (77%) 12 (17%) 3 (4%)
Spine 41 (51%)
17 (21%) 4 ((26%) 5%) 21 11 (14%) 64 (79%) 15 (19%) 36 (44%) 28 19 ((35%) 24%) 31 (38%) 22 29 (27%) 36%) 18 (22%) 27 ( 33%) 39 (48%) 33 (41%) 19 (24%) 24 (30%) 33 (41%) 22 (27%) 22 25 ((27%) 31%) 32 (40%) 48 (59%) 10 (12%) 20 (25%) 53 (65%) 17 (21%) 9 (11%)
Brain & Spine 7 (88%)
0
2 1 ((25%) 13%) 3 (38%) 3 (38%) 5 (63%)
2 (25%) 1 13%) 6 ((75%) 0 7 (25%) 88%) 2 0 6 ( 75%) 1 (13%) 0 2 (25%) 7 (88%) 0 6 (75%) 1 ((13%) 13%) 1 1 (13%) 7 (88%) 0 1 (13%) 6 (75%) 2 (25%) 0
During the past week, have you had any of the following problems with your work or other regular daily activities as a result of your physical health? Cut down on the amount of time spent on work or other activities No Yes Accomplished less than you would like No Yes Were limited in the kind of work or activities No Yes Had difficulty performing the work or other activities No Yes
Brain
Spine
Brain & Spine
41 (59%) 27 (39%) 34 (49%) 34 (49%) 35 (50%) 33 (47%) 34 (49%) 34 (49%)
38 (47%) 40 (49%) 23 (28%) 55 (68%) 33 (41%) 44 (54%) 31 (38%) 47 (58%)
6 (75%) 2 (25%) 6 (75%) 2 (25%) 6 (75%) 2 (25%) 6 (75% ) 2 (25%)
During the past week, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)? Cut down on the amount of time spent on work or other activities No Yes Accomplished less than you would like No Yes Didn’t do work or other activities as carefully as usual No Yes
Brain
Spine
Brain & Spine
48 (69%) 18 (26%) 41 (59%) 25 (36%) 50 (71%) 16 (23%)
53 (65%) 25 (31%) 47 (58%) 31 (38%) 52 (64%) 25 (31%)
6 (75%) 1 (13%) 6 (75%) 1 (13%) 5 (63%) 0
During the past week, to what extent has your physical health or emotional problems interfered with your normal social activities? Not at all Slightly Moderately Quite a bit Extremely
Brain 23 (33%) 17 (24%) 12 (17%) 7 (10%) 7 (10%)
Spine 16 (20%) 27 (33%) 18 (22%) 9 (11%) 7 (9%)
Brain & Spine 5 (63%) 1 (13%) 1 (13%) 1 (13%) 0
Brain 25 (36%) 18 (26%) 4 (6%) 13 (19%) 5 (7%) 0
Spine 7 (9%) 15 (19%) 16 (20%) 21 (26%) 13 (16%) 4 (5%)
Brain & Spine 4 (50%) 3 (38%) 0 0 1 (13%) 0
How much bodily pain have you had during the past week? None Very mild Mild Moderate Severe Very severe
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During the past week, how much did pain interfere with your normal work (including both work outside the home and housework)? Not at all A little bit Moderately Quite a bit Extremely
Brain 37 (53%) 9 (13%) 12 (17%) 5 (7%) 2 (3%)
Spine 14 (17%) 28 (35%) 21 (26%) 11 (14%) 4 (5%)
Brain & Spine 6 (75%) 1 (13%) 0 0 1 (13%)
These questions are about how you feel and how things have been with you during the past week. Did you feel peppy? All of the time Most of the time Good bit of the time Some of the time Little bit of the time None of the time Have you been a very nervous person? All of the time Most of the time Good bit of the time Some of the time Little bit of the time None of the time Have you felt so down nothing could cheer you up? All of the time Most of the time Good bit of the time Some of the time Little bit of the time None of the time Have you felt calm? All of the time Most of the time Good bit of the time Some of the time Little bit of the time None of the time Did you have a lot of energy?
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Brain 4 (6%) 18 (26%) 10 (14%) 11 (16%) 15 (21%) 9 (13%) 3 (4%) 1 (1%) 7 (10%) 11 (16%) 24 (34%) 21 (30%) 0 2 (3%) 3 (4%) 9 (13%) 5 (7%) 48 (69%) 7 (10%) 30 (43%) 14 (20%) 10 (14%) 6 (9%) 1 (1%)
Spine 0 5 (6%) 13 (16%) 21 (26%) 20 (25%) 18 (22%) 3 (4%) 3 (4%) 5 (6%) 11 (14%) 20 (25%) 36 (44%) 2 (3%) 3 (4%) 6 (7%) 13 (16%) 9 (11%) 45 (56%) 3 (4%) 24 (30%) 15 (19%) 21 (26%) 9 (11%) 5 (6%)
Brain & Spine 1 (13%) 2 (25%) 3 (38%) 0 1 (13%) 1 (13%) 0 0 1 (13%) 1 (13%) 1 (13%) 5 (63%) 0 0 1 (13%) 0 3 (38%) 4 (50%) 1 (13%) 5 (63%) 2 (25%) 0 0 0
6 (9%) 9 (11%) 0 Little bit of the time None of the time 1 (1%) 5 (6%) 0 you during the past week. These questions are about how you feel and how things have been with 4/18/2012 Brain Spine Brain & Spine ave a lot of energy? Did you fheel peppy? All of the time 4 (9%) 6%) 0 6 2 (3%) 1 (13%) Most of the time 18 (21%) 26%) 5 (4%) 6%) 2 (38%) 25%) 15 3 3 Good bit of the time 10 (14%) 16 2 13 (20%) 16%) 3 (25%) 38%) 24 Some of the time 12 ( 17%) 19 ( 24%) 0 11 16%) 21 26%) 11 0 Little bit of the time 15 (16%) 21%) 16 20 (20%) 25%) 1 (13%) 14 20%) 21 2 None of the time 9 ((13%) 18 (26%) 22%) 1 (25%) 13%) Have yyou ou b felt blue? Have een a very nervous person? A All ll o of f tthe he ttime ime 2 ( 3%) 2 ( 3%) 0 3 (4%) 3 (4%) 0 M Most ost o of f tthe he ttime ime 4 ( 6%) 8 ( 10%) 1 ( 13%) 1 (1%) 3 (4%) 0 Good ood b bit it o of f tthe he ttime ime 4%) 7 0 G 7 3 ((10%) 5 ((9%) 6%) 1 (13%) ome o of f tthe he ttime ime 13 1 SSome 11 ((19%) 16%) 14 11 ((17%) 14%) 1 ((13%) 13%) LLittle ittle b bit it o of f tthe he ttime ime 26 ( 37%) 30 ( 37%) 3 ( 38%) 24 (34%) 20 (25%) 1 (13%) N None one o of f tthe he ttime ime 17 ( 24%) 16 ( 20%) 3 21 (30%) 36 (44%) 5 ((38%) 63%) Did you feel worn out? Have you felt so down nothing could cheer you up? All of the time 3 (4%) 7 (9%) 0 All of the time 0 2 (3%) 0 Most of the time 12 (17%) 9 (11%) 1 (13%) Most of the time 2 (3%) 3 (4%) 0 Good bit of the time 6 (9%) 18 (22%) 1 (13%) Good bit of the time 3 (4%) 6 (7%) 1 (13%) Some of the time 14 (20%) 29 (36%) 2 (25%) Some of the time 9 (13%) 13 (16%) 0 Little bit of the time 20 (29%) 11 (14%) 2 (25%) LNittle bit of the time 5 (7%) 9 3 ((11%) 3 (38%) one of the time 10 (14%) 4%) 2 (25%) Have None o f t he t ime 48 ( 69%) 45 ( 56%) 4 (50%) you been happy? Have y ou f elt c alm? All of the time 12 (17%) 3 (4%) 2 (25%) A of tohe time 7 ((10%) 3 ((28%) 4%) 1 ((38%) 13%) Mll ost f the time 20 29%) 23 3 M ost obf it the ime 30 ((19%) 43%) 15 24 ((19%) 30%) 5 ((25%) 63%) Good of tthe time 13 2 G ood boit f the time 14 ((14%) 20%) 21 15 ((26%) 19%) 2 (25%) Some f tohe time 10 0 SLittle ome boit f tohe t ime 10 ( 14%) 21 ( 26%) 0 f the time 10 (14%) 14 (17%) 0 LNittle f the time 6 ((4%) 9%) 9 2 ((11%) 0 one boit f tohe time 3 3%) 1 (13%) Did None the time 1 (1%) 5 (6%) 0 you off eel tired? All of the time 9 (13%) 7 (9%) 1 (13%) Most of the time 14 (20%) 20 (25%) 0 Good bit of the time 8 (11%) 17 (21%) 1 (13%) Did you ohf ave lot of energy? Some the at ime 13 (19%) 27 (33%) 2 (25%) Little bit of the time 17 (24%) 7 (9%) 4 (50%) None of the time 6 (9%) 0 0 24 During the past week, how much of the time has your physical health or emotional problems interfered with your social activities? All of the time Most of the time Some of the time Little of the time None of the time
Brain 4 (6%) 12 (17%) 11 (16%) 13 (19%) 26 (37%)
Spine 6 (7%) 10 (12%) 26 (32%) 19 (24%) 15 (19%)
Brain & Spine 1 (13%) 0 1 (13%) 1 (13%) 5 (63%)
How TRUE or FALSE is each of the following statements for you? I seem to get sick easier than other people Definitely true Mostly true Unsure Mostly false Definitely false I am as healthy as anyone I know Definitely true Mostly true Unsure Mostly false Definitely false I expect my health to get worse Definitely true Mostly true Unsure Mostly false Definitely false My health is excellent Definitely true Mostly true Unsure Mostly false Definitely false
Brain 7 (10%) 5 (7%) 5 (7%) 17 (24%) 35 (50%) 18 (26%) 24 (34%) 11 (16%) 9 (13%) 6 (9%) 4 (6%) 14 (20%) 20 (29%) 12 (17%) 19 (27%) 17 (24%) 24 (34%) 13 (19%) 7 (10%) 8 (11%)
Spine 2 (3%) 6 (7%) 8 (10%) 32 (40%) 30 (37%) 10 (12%) 25 (31%) 12 (15%) 17 (21%) 14 (17%) 7 (9%) 15 (19%) 36 (44%) 8 (10%) 11 (14%) 6 (7%) 25 (31%) 12 (15%) 22 (27%) 13 (16%)
Brain & Spine 1 (13%) 1 (13%) 1 (13%) 4 (50%) 1 (13%) 3 (38%) 2 (25%) 1 (13%) 1 (13%) 1 (13%) 0 0 1 (13%) 4 (50%) 3 (38%) 3 (38%) 2 (25%) 0 1 (13%) 2 (25%)
In the past year, have you had 2 weeks or more during which you felt sad, blue or depressed; or when you lost all interest or pleasure in things that you usually cared about or enjoyed? No Yes
Brain 48 (69%) 21 (30%)
Spine 49 (61%) 27 (33%)
Brain & Spine 4 (50%) 4 (50%)
Have you had 2 years or more in your life that you felt depressed or sad most days, even if you felt okay sometimes? No Yes 4/18/2012
Brain 54 (77%) 13 (19%)
Spine 58 (72%) 21 (26%)
Brain & Spine 6 (75%) 2 (25%)
Spine 53 (65%) 25 (31%)
Brain & Spine 7 (88%) 1 (13%)
Have you felt depressed or sad much of the time in the past year? No Yes
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Brain 50 (71%) 18 (26%)
MDASI BRAIN Symptom TUMOR AND SSeverity PINE TUMOR MODULES We ask you to rate how severe the following symptoms have been in the last 24 hours ( 0 (symptom has not been present) to 10 (symptom was as bad as you can imagine it could be) . MDASI Core Items (Moderate to Severe Rating, ≥5)
Brain (N=70) 13 (19%) 21 (30%) 7 (10%) 18 (26%) 17 (24%) 7 (10%) 20 (29%) 8 (11%) 18 (26%) 10 (14%) 16 (23%) 3 (4%) 9 (13%)
Pain Fatigue Nausea Disturbed sleep Distressed/upset Shortness of breath Problems remembering things Lack of appetite Drowsiness/sleepiness Dry mouth Sadness Vomiting Numbness/tingling
Spine (N=81) 36 (44%) 36 (44%) 7 (9%) 29 (36%) 16 (20%) 9 (11%) 11 (14%) 5 (6%) 23 (28%) 10 (12%) 15 (19%) 2 (3%) 40 (49%)
Brain & Spine (N=8) 1 (13%) 0 0 1 (13%) 0 0 0 0 0 0 1 (13%) 0 2 (25%)
MDASI Brain Tumor Module Items
Moderate to Severe (Rating ≥ 5) Brain Brain & Spine 11 (16%) 0 9 (13%) 0 12 (17%) 0 2 (3%) 0 16 (23%) 0 17 (24%) 0 9 (13%) 0 4 (6%) 0 12 (17%) 0
Weakness Difficulty understanding Difficulty speaking Seizures Difficulty concentrating Vision Change in appearance Change in bowel pattern Irritability
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MDASI Spine Tumor Module Items
Moderate to Severe (Rating ≥ 5) Spine Brain & Spine 31 (38%) 1 (13%) 38 (47%) 0 18 (22%) 0 25 (31%) 0 33 (41%) 1 (13%)
Radiating pain Weakness Loss of control of bowel/bladder Change in bowel pattern Sexual function MDASI Interference Items (Moderate to Severe Rating, ≥ 5) General activity Mood Work Relations with others Walking Enjoyment of life
Brain 26 (37%) 20 (29%) 27 (39%) 13 (19%) 25 (36%) 24 (34%)
Spine 35 (43%) 22 (27%) 35 (43%) 20 (25%) 34 (42%) 26 (32%)
Brain & Spine 1 (13%) 1 (13%) 1 (13%) 0 0 1 (13%)
Brain 2.13 (0-‐7.21) -‐-‐
Spine -‐-‐ 2.96 (0-‐7.92)
Brain & Spine 0.71 (0-‐2.89) 0.73 (0-‐2.67)
Module Overall Mean Severity (Range) MDASI Brain Tumor Module MDASI Spine Tumor Module
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