Patient Perspective Graphs

 

Type of Brain Tumour
Astrocytoma
12%
3
Diffuse Astrocytoma
0%
0
Low Grade Glioma
4%
1
Glioblastoma Multiforme (GBM)
12%
3
Glialsarcoma
0%
0
Meningioma
52%
13
Petroclival Meningioma
4%
1
Oligodendroglioma
8%
2
Neurofibromatosis
0%
0
Pituitary Adenoma
0%
0
Acoustic Neuroma
0%
0
Haemangioblastoma
0%
0
Medulloblastoma
0%
0
(DIPG) - Diffuse Intrinsic Pontine Glioma
4%
1
Ependymoma
0%
0
Pineal Cyst
0%
0
Colloid Cyst
4%
1
I Don't Know
0%
0
Other *
0%
0

Symptoms
Seizures
12%
3
Headaches
48%
12
Vertigo
32%
8
Dizziness
20%
5
Nausea
20%
5
Depression
16%
4
Confusion
8%
2
Anxiety
12%
3
Problems with Speech
20%
5
Insomnia
12%
3
Blurred vision
8%
2
Mood swings
8%
2
Memory Loss
24%
6
An accident
16%
4
Metallic taste in mouth
0%
0
Facial Numbness
4%
1
Tingling in Fingers
0%
0
Clumsiness
0%
0
Stroke
0%
0
Dyspraxia (Hand to Eye Co-ordination problems)
0%
0
Tinnitus
4%
1
Incontinence
4%
1
Fits of Anger
4%
1
Other *
0%
0

Length of Time Living with Symptoms Prior to Diagnosis
< 1 Month
7%
1
1-3 Months
7%
1
3-6 Months
13%
2
6-12 Months
7%
1
1-2 Years
0%
0
> 2 Years
40%
6
I was Asymptomatic
7%
1
I Don't Know
20%
3
Other
0%
0

Age at Diagnosis
0-14
4%
1
15-18
0%
0
19-24
4%
1
25-39
24%
6
40-64
64%
16
> 64
4%
1
I'd rather not say
0%
0

 

Time Between Diagnosis & Surgery
Less than 24 hours
11%
2
24-72 hours
11%
2
1-2 weeks
16%
3
3-6 weeks
21%
4
2-6 months
32%
6
6-12 months
0%
0
1-2 Years
5%
1
More than 2 Years
5%
1

Initial Diagnosis & Research
I/we consulted my/our G.P
36%
9
I/we discussed it with my/our surgeon
32%
8
I/we contacted BTAA
20%
5
I/we Googled "brain tumours"
52%
13
I/we joined social media support groups
24%
6
I/we spoke to other health professionals
12%
3
I/we discussed it with family
16%
4
I/we discussed it with friends
16%
4
Other *
4%
1

Surgeon Options
I sought a second opinion but stayed with my initial surgeon
13%
3
I sought a second opinion and went with that opinion
8%
2
I sought more than 2 opinions
17%
4
I didn't feel the need to seek a second opinion
33%
8
I didn't have time to make a decision
4%
1
I wish I had sought a second opinion but didn't know I could
4%
1
Second opinion sought on recommendation of first surgeon
4%
1
Not Applicable
13%
3
Other
4%
1

Questions for the Surgeon (General)
Can I record our conversation so that I don't miss any important information?
28%
7
How common is my tumour?
32%
8
Are there further tests that I need to have?
28%
7
What is the aim of my surgery?
32%
8
How often have you done this type of surgery?
36%
9
Is surgery absolutely necessary?
28%
7
Do I have a choice of treatments?
16%
4
How much time do I have to think about this?
12%
3
Are there any advantages or disadvantages of using the private versus the public health system?
16%
4
What is your opinion about the best treatment for me?
32%
8
What will be the costs throughout my treatment eg. ongoing medication and operation costs?
24%
6
Am I eligible for benefits if I cannot work?
16%
4
What information is available about my tumour and the surgery? eg. books, websites, publications.
20%
5
Are there any complimentary therapies that you believe may be helpful or that are known to be bad for me?
16%
4
How commonly do the risks outlined on the craniotomy consent form occur?
20%
5
Are you concerned for about any particular complications?
16%
4
Other *
0%
0

  • These are questions either asked of the surgeon or considered relevant questions to ask the surgeon. 

Questions for the Surgeon (Symptoms)
What changes are normal and to be expected?
44%
11
Are there any problems that I should look out for?
44%
11
What do I do if these problems occur?
44%
11
What symptoms or changes should I tell you about?
44%
11
Am I likely to have seizures?
40%
10
What should I tell my family if I have a seizure?
28%
7
In what situations should I go to hospital or call an ambulance?
40%
10
Are there warning signs for a seizure?
32%
8
Other *
0%
0

Questions for the Surgeon (Prognosis)
What is my long term prognosis?
48%
12
What is the expected survival for people with my type of tumour?
36%
9
Is surgery going to improve my chance of survival?
32%
8
If the tumour is likely to return, how long will it be before it returns?
40%
10
Could my tumour become more aggressive in the future?
44%
11
What is the best case scenario?
36%
9
What is the worst case scenario?
36%
9
Other *
0%
0

Questions for the Surgeon (Treatment & Support)
What effects should I expect after the surgery?
48%
12
How long do you expect me to be in hospital?
48%
12
What problems should I look out for when I go home and who do I contact if they occur?
44%
11
What are the dos and don'ts of after care?
48%
12
What additional treatment will I need after surgery?
32%
8
Is there someone I can talk to who has been through this surgery?
20%
5
Are there any services or support groups that can help me and my family deal with this illness?
24%
6
What can I do to improve my surgical outcome and recovery e.g. exercise, vitamin supplements, diet, meditation etc?
16%
4
When will I be able to return to work?
16%
4
Other *
0%
0

Post Operative Impairment
Dysphasia (Inability to Speak)
16%
4
Dysphagia (Inability to Swallow)
8%
2
Inability to Walk
16%
4
Hemiplegia (Paralysis on one side)
4%
1
Loss of the sense of Smell
8%
2
Neuropathy (Tingling or numbness of hands or feet)
12%
3
Visual deficits
8%
2
Loss of eyesight
0%
0
Apraxia (Difficulty with motor skills)
0%
0
Other *
0%
0

Type of Ongoing Treatment
Radiotherapy
32%
8
Stereotactic Radiosurgery
8%
2
Chemotherapy
24%
6
Proton Beam Therapy
0%
0
Immunotherapy
0%
0
No post surgical therapy
32%
8
Other *
12%
3

Medications
Temozolomide
8%
2
Dexemethazone
12%
3
Avastin
4%
1
Warfarin
4%
1
Dilantin
8%
2
Keppra
32%
8
Procarbozine
4%
1
Lomustine
4%
1
Somac
12%
3
Xarelto
4%
1
Norvas
4%
1
Fenofibrate
4%
1
Codeine
4%
1
Depatuxizumab (IBT-414)
0%
0
Keytruda
0%
0
Other *
0%
0

Complimentary & Alternative Therapies
Naturopathy
20%
5
Medical Cannabis
12%
3
Oncology Massage
4%
1
Acupunture
4%
1
Herbal Medicine
4%
1
Other *
0%
0

Effect of Fatigue
My fatigue is debilitating and prevents my ability to function normally
33%
7
My fatigue does prevent a normal lifestyle but it is not debilitating
43%
9
My fatigue is moderately debilitating but does not prevent my ability to function normally
14%
3
Not Applicable
5%
1
Other
5%
1

Nature of Balance Issues
I have difficulty walking down stairs
36%
9
I need to stop every now and then to regain my balance
28%
7
I have difficulty carrying things
16%
4
I have difficulty getting dressed
20%
5
I have difficulty maintaining balance when walking
16%
4
I have trouble standing for long periods
20%
5
I have a slower walking gait
32%
8
Other *
12%
3

Type of Memory Loss
Short Term Memory Loss
40%
10
Long Term Memory Loss
0%
0
Both Short and Long Term Memory Loss
36%
9
No Memory Loss issues
24%
6

Side-Effects of Memory Loss
Forgetting peoples names
60%
15
Forgetting to do chores around the house
44%
11
Forgetting appointments
56%
14
Forgetting where I am
16%
4
Searching for words
36%
9
Forgetting where I have put things
32%
8
Not remembering what day of the week it is
16%
4
Not remembering friends or family members
4%
1
Other *
0%
0

Numbness, Hemiplegia or Neuropathy
Just my Head
21%
4
Just Leg(s)
5%
1
Just Arm(s)
11%
2
Leg(s) and Arm(s)
16%
3
Head, Leg(s) and Arm(s)
16%
3
No Numbness, Hemeplegia or Neuropathy
26%
5
Other
5%
1

Exercise Frequency
Every day
32%
7
4 to 5 times a week
27%
6
2 to 3 times a week
9%
2
Once a week
9%
2
2 to 3 times a month
5%
1
Once a month
0%
0
Less than once a month
5%
1
I have chosen not to exercise
0%
0
I am unable to exercise
14%
3

Type of Exercise
Walking
64%
16
Swimming
12%
3
Cycling
8%
2
Running
12%
3
Tennis
0%
0
Yoga
0%
0
Tai Chi
4%
1
Pilates
4%
1
Bowls
0%
0
Gardening
16%
4
Golf
0%
0
Gym Sessions
8%
2
Kayaking/Rowing
4%
1
Weight Training
0%
0
Step Climbing
4%
1
Other *
0%
0

Effect of Exercise
It has been very beneficial
44%
8
It has been reasonably beneficial
17%
3
About the same benefit as before the brain tumour
39%
7
It has not really been beneficial
0%
0
It has had a detrimental effect on my recovery
0%
0
Other
0%
0

Most Profound Impact (Physical and Mental Wellbeing)
Chronic Fatigue
44%
11
Seizures
4%
1
Loss of Balance
36%
9
Double Vision
16%
4
Neuropathy (Numbness, Pins & Needles)
16%
4
Memory Loss
52%
13
Depression
20%
5
Headaches
16%
4
Fogginess
20%
5
Loss of the Sense of Smell
8%
2
Stress
24%
6
Pain
8%
2
Mood Swings
12%
3
Other *
8%
2

Most Profound Impact (Overall Quality of Life)
Loss of Income
44%
11
Financial Impact (Cost of Surgery/Treatment)
28%
7
Loss of independence
40%
10
Alienation from family/friends
36%
9
Loss of physical mobility
28%
7
Loss of motivation
40%
10
Anxiety & Depression
40%
10
Loneliness
4%
1
I have been unable to travel
0%
0
There has been no impact on my quality of life
0%
0
Other *
0%
0

Impact on Social Engagement
I have become more socially isolated
72%
18
I have narrowed my range of friendships
56%
14
I have expanded my range of friendships
8%
2
Some friends have distanced themselves from me
32%
8
Some friends have become closer to me
20%
5
I have become more socially outgoing
0%
0
My social engagement has remained the same
4%
1
Other *
0%
0

Length of Time Not Driving
Less than 1 Month
15%
2
1-6 Months
15%
2
6-12 Months
38%
5
1-2 Years
15%
2
More than 2 Years
15%
2

Recommencement of Driving
I returned straight away to driving
46%
6
I had to undergo a driving test prior to returning to driving
38%
5
I am driving (no test required) but with conditions attached
15%
2
Other
0%
0

Length of Time Off Work
Less than a Month
11%
2
1-3 Months
11%
2
3-6 Months
11%
2
6-12 Months
5%
1
12-18 Months
16%
3
18 Months - 2 Years
11%
2
More than 2 Years
21%
4
Not Applicable
16%
3

State of Health/Recovery Personal Rating (out of 10)
1
12%
3
2
0%
0
3
4%
1
4
4%
1
5
16%
4
6
20%
5
7
16%
4
8
20%
5
9
8%
2
10
0%
0

Extent of Financial Impact
Less than $10,000
19%
4
$10,000 - $20,000
0%
0
$20,000 - $40,000
14%
3
$40,000 - $60,000
10%
2
$60,000 - $80,000
0%
0
$80,000 - $100,000
14%
3
More than $100,000
19%
4
I Don't Know
24%
5
I'd rather not say
0%
0

Total Estimated Financial Impact: $1,080,001

Financial Support Services
Assistance in dealing with Financial Institutions
16%
4
Assistance in dealing with Utility Providers
16%
4
Information about Hardship Grants
36%
9
Information about Emergency Relief Services
20%
5
Information about where to get financial help
28%
7
Assistance with accessing Superannuation
20%
5
Assistance with Child Care Subsidies or Grants
8%
2
Assistance with accessing the NDIS
0%
0
Other *
4%
1

 

  • These are the specific financial support services that patients would like to have better information on

Additional Ongoing Support Services
Better counselling services
36%
9
More accessible support groups
28%
7
Better information from government agencies
36%
9
Availability of a Care Coordinator
40%
10
Better information about obtaining financial support
32%
8
Disability Parking information
8%
2
Home help information
4%
1
Not Applicable
0%
0
Other *
0%
0

  • These are the general support services that patients would like to have better information on

Areas where I would like some support
Transport
8%
2
Counselling
16%
4
Meals
8%
2
Financial
16%
4
Exercise Tips
8%
2
Dietary Tips
12%
3
Housework
12%
3
Shopping
8%
2
Coffee Companion (someone to talk to)
24%
6
Information
0%
0
Dealing with Government Agencies
0%
0
Other *
0%
0

Current Brain Tumour Awareness Roadblocks
Lack of knowledge of the therapeutic benefits of chemotherapy
32%
8
Lack of knowledge of the side effects of chemotherapy
24%
6
Lack of knowledge about alternative treatment options
40%
10
Lack of information about financial assistance available
52%
13
Lack of information about how I go about finding a good surgeon
36%
9
Lack of information about the availability of clinical trials in Australia
36%
9
Lack of information about how to get results of clinical trials
32%
8
Lack of information about where to get support
64%
16
Lack of information about the latest research †
4%
1
Other *
0%
0

† recently added question

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Kia Ora. Sorry for the interruption but if you type your name and email address in the fields provided you'll receive my latest brain tumour scribblings as soon as they roll off the press, so to speak. What could be better, other than good coffee in the morning, comfortable non-slip gumboots, peace in the Middle East, having politicians who don't govern out of self-interest and a cure for all types of diseases, including, but by no means limited to, brain cancer.

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