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
Glioneuroma
0%
0
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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