Patient Perspective Graphs

 

Type of Brain Tumour
Astrocytoma
11%
3
Diffuse Astrocytoma
0%
0
Low Grade Glioma
4%
1
Glioblastoma Multiforme (GBM)
15%
4
Glialsarcoma
0%
0
Meningioma
48%
13
Petroclival Meningioma
4%
1
Oligodendroglioma
11%
3
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
19%
5
Headaches
44%
12
Vertigo
30%
8
Dizziness
19%
5
Nausea
22%
6
Depression
15%
4
Confusion
7%
2
Anxiety
11%
3
Problems with Speech
22%
6
Insomnia
11%
3
Blurred vision
15%
4
Mood swings
7%
2
Memory Loss
22%
6
An accident
19%
5
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)
4%
1
Tinnitus
4%
1
Hearing Difficulties
0%
0
Incontinence
4%
1
Fits of Anger
4%
1
Other *
0%
0

Length of Time Living with Symptoms Prior to Diagnosis
< 1 Month
12%
2
1-3 Months
12%
2
3-6 Months
12%
2
6-12 Months
6%
1
1-2 Years
0%
0
> 2 Years
35%
6
I was Asymptomatic
6%
1
I Don't Know
18%
3
Other
0%
0

Age at Diagnosis
0-14
4%
1
15-18
0%
0
19-24
4%
1
25-39
26%
7
40-64
63%
17
> 64
4%
1
I'd rather not say
0%
0

 

Time Between Diagnosis & Surgery
Less than 24 hours
10%
2
24-72 hours
14%
3
1-2 weeks
14%
3
3-6 weeks
19%
4
2-6 months
33%
7
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
33%
9
I/we discussed it with my/our surgeon
33%
9
I/we Googled "brain tumours"
4%
1
I/we joined social media support groups
7%
2
I/we spoke to other health professionals
4%
1
I/we discussed it with family
7%
2
I/we discussed it with friends
4%
1
Other *
4%
1

Surgeon Options
I sought a second opinion but stayed with my initial surgeon
15%
4
I sought a second opinion and went with that opinion
8%
2
I sought more than 2 opinions
15%
4
I didn't feel the need to seek a second opinion
31%
8
I didn't have time to make a decision
8%
2
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
12%
3
Other
4%
1

Questions for the Surgeon (General)
Can I record our conversation so that I don't miss any important information?
26%
7
How common is my tumour?
30%
8
Are there further tests that I need to have?
30%
8
What is the aim of my surgery?
37%
10
How often have you done this type of surgery?
33%
9
Is surgery absolutely necessary?
26%
7
Do I have a choice of treatments?
15%
4
How much time do I have to think about this?
15%
4
Are there any advantages or disadvantages of using the private versus the public health system?
15%
4
What is your opinion about the best treatment for me?
33%
9
What will be the costs throughout my treatment eg. ongoing medication and operation costs?
26%
7
Am I eligible for benefits if I cannot work?
19%
5
What information is available about my tumour and the surgery? eg. books, websites, publications.
19%
5
Are there any complimentary therapies that you believe may be helpful or that are known to be bad for me?
22%
6
How commonly do the risks outlined on the craniotomy consent form occur?
19%
5
Are you concerned for about any particular complications?
15%
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%
12
Are there any problems that I should look out for?
41%
11
What do I do if these problems occur?
44%
12
What symptoms or changes should I tell you about?
44%
12
Am I likely to have seizures?
41%
11
What should I tell my family if I have a seizure?
33%
9
In what situations should I go to hospital or call an ambulance?
41%
11
Are there warning signs for a seizure?
33%
9
Other *
0%
0

Questions for the Surgeon (Prognosis)
What is my long term prognosis?
52%
14
What is the expected survival for people with my type of tumour?
41%
11
Is surgery going to improve my chance of survival?
33%
9
If the tumour is likely to return, how long will it be before it returns?
41%
11
Could my tumour become more aggressive in the future?
48%
13
What is the best case scenario?
41%
11
What is the worst case scenario?
41%
11
Other *
0%
0

Questions for the Surgeon (Treatment & Support)
What effects should I expect after the surgery?
52%
14
How long do you expect me to be in hospital?
44%
12
What problems should I look out for when I go home and who do I contact if they occur?
44%
12
What are the dos and don'ts of after care?
48%
13
What additional treatment will I need after surgery?
30%
8
Is there someone I can talk to who has been through this surgery?
26%
7
Are there any services or support groups that can help me and my family deal with this illness?
22%
6
What can I do to improve my surgical outcome and recovery e.g. exercise, vitamin supplements, diet, meditation etc?
15%
4
When will I be able to return to work?
15%
4
Other *
0%
0

Post Operative Impairment
Dysphasia (Inability to Speak)
19%
5
Dysphagia (Inability to Swallow)
11%
3
Inability to Walk
19%
5
Hemiplegia (Paralysis on one side)
4%
1
Loss of the sense of Smell
7%
2
Neuropathy (Tingling or numbness of hands or feet)
15%
4
Visual deficits
7%
2
Loss of eyesight
4%
1
Apraxia (Difficulty with motor skills)
7%
2
Other *
0%
0

Type of Ongoing Treatment
Radiotherapy
37%
10
Stereotactic Radiosurgery
7%
2
Chemotherapy
30%
8
Proton Beam Therapy
0%
0
Immunotherapy
4%
1
No post surgical therapy
30%
8
Other *
11%
3

Medications
Temozolomide
15%
4
Dexemethazone
15%
4
Avastin
4%
1
Warfarin
4%
1
Dilantin
11%
3
Keppra
33%
9
Procarbozine
11%
3
Lomustine
7%
2
Somac
11%
3
Xarelto
7%
2
Norvas
4%
1
Fenofibrate
4%
1
Codeine
4%
1
Depatuxizumab (IBT-414)
4%
1
Keytruda
4%
1
Tyrosine
0%
0
Other *
0%
0

Complimentary & Alternative Therapies
Naturopathy
22%
6
Medical Cannabis
15%
4
Oncology Massage
4%
1
Acupunture
4%
1
Herbal Medicine
7%
2
Other *
0%
0

Effect of Fatigue
My fatigue is debilitating and prevents my ability to function normally
39%
9
My fatigue does prevent a normal lifestyle but it is not debilitating
39%
9
My fatigue is moderately debilitating but does not prevent my ability to function normally
13%
3
Not Applicable
4%
1
Other
4%
1

Nature of Balance Issues
I have difficulty walking down stairs
33%
9
I need to stop every now and then to regain my balance
26%
7
I have difficulty carrying things
15%
4
I have difficulty getting dressed
19%
5
I have difficulty maintaining balance when walking
15%
4
I have trouble standing for long periods
19%
5
I have a slower walking gait
30%
8
Other *
11%
3

Type of Memory Loss
Short Term Memory Loss
44%
12
Long Term Memory Loss
0%
0
Both Short and Long Term Memory Loss
33%
9
No Memory Loss issues
22%
6

Side-Effects of Memory Loss
Forgetting peoples names
59%
16
Forgetting to do chores around the house
41%
11
Forgetting appointments
52%
14
Forgetting where I am
19%
5
Searching for words
41%
11
Forgetting where I have put things
33%
9
Not remembering what day of the week it is
15%
4
Not remembering friends or family members
11%
3
Other *
0%
0

Numbness, Hemiplegia or Neuropathy
Just my Head
19%
4
Just Leg(s)
5%
1
Just Arm(s)
10%
2
Leg(s) and Arm(s)
14%
3
Head, Leg(s) and Arm(s)
24%
5
No Numbness, Hemeplegia or Neuropathy
24%
5
Other
5%
1

Exercise Frequency
Every day
29%
7
4 to 5 times a week
25%
6
2 to 3 times a week
13%
3
Once a week
8%
2
2 to 3 times a month
4%
1
Once a month
0%
0
Less than once a month
4%
1
I have chosen not to exercise
0%
0
I am unable to exercise
17%
4

Type of Exercise
Walking
63%
17
Swimming
11%
3
Cycling
7%
2
Running
11%
3
Tennis
0%
0
Yoga
0%
0
Tai Chi
4%
1
Pilates
4%
1
Bowls
0%
0
Gardening
15%
4
Golf
0%
0
Gym Sessions
7%
2
Kayaking/Rowing
4%
1
Weight Training
0%
0
Step Climbing
4%
1
Other *
0%
0

Effect of Exercise
It has been very beneficial
42%
8
It has been reasonably beneficial
21%
4
About the same benefit as before the brain tumour
37%
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
48%
13
Seizures
7%
2
Loss of Balance
33%
9
Double Vision
15%
4
Neuropathy (Numbness, Pins & Needles)
15%
4
Memory Loss
48%
13
Stress
30%
8
Anxiety
0%
0
Depression
22%
6
Headaches
15%
4
Fogginess
19%
5
Loss of the Sense of Smell
7%
2
Pain
7%
2
Mood Swings
11%
3
Other *
7%
2

Most Profound Impact (Overall Quality of Life)
Loss of Income
41%
11
Financial Impact (Cost of Surgery/Treatment)
30%
8
Loss of independence
44%
12
Alienation from family/friends
37%
10
Loss of physical mobility
33%
9
Loss of motivation
37%
10
Anxiety & Depression
41%
11
Loneliness
7%
2
I have been unable to travel
0%
0
Uncertainty about my prognosis
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
74%
20
I have narrowed my range of friendships
52%
14
I have expanded my range of friendships
7%
2
Some friends have distanced themselves from me
37%
10
Some friends have become closer to me
26%
7
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
13%
2
1-6 Months
13%
2
6-12 Months
47%
7
1-2 Years
13%
2
More than 2 Years
13%
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
10%
2
1-3 Months
14%
3
3-6 Months
10%
2
6-12 Months
10%
2
12-18 Months
14%
3
18 Months - 2 Years
10%
2
More than 2 Years
19%
4
Not Applicable
14%
3

State of Health/Recovery Personal Rating (out of 10)
1
11%
3
2
0%
0
3
4%
1
4
7%
2
5
15%
4
6
22%
6
7
15%
4
8
19%
5
9
7%
2
10
0%
0

Extent of Financial Impact
Less than $10,000
17%
4
$10,000 - $20,000
4%
1
$20,000 - $40,000
13%
3
$40,000 - $60,000
13%
3
$60,000 - $80,000
0%
0
$80,000 - $100,000
13%
3
More than $100,000
17%
4
I Don't Know
22%
5
I'd rather not say
0%
0

Total Estimated Financial Impact: $1,145,001

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

Financial Support Services
Assistance in dealing with Financial Institutions
19%
5
Assistance in dealing with Utility Providers
19%
5
Information about Hardship Grants
37%
10
Information about Emergency Relief Services
22%
6
Information about where to get financial help
33%
9
Assistance with accessing Superannuation
19%
5
Assistance with Child Care Subsidies or Grants
7%
2
Assistance with accessing the NDIS
7%
2
Other *
0%
0

 

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

Additional Ongoing Support Services
Better counselling services
33%
9
More accessible support groups
26%
7
Better information from government agencies
33%
9
Availability of a Care Coordinator
37%
10
Better information about obtaining financial support
30%
8
Disability Parking information
7%
2
Home help information
4%
1
Not Applicable
0%
0
Other *
0%
0

Areas where I would like some support
Transport
11%
3
Counselling
19%
5
Meals
7%
2
Financial
19%
5
Exercise Tips
7%
2
Dietary Tips
11%
3
Housework
15%
4
Shopping
11%
3
Coffee Companion (someone to talk to)
26%
7
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
37%
10
Lack of knowledge of the side effects of chemotherapy
26%
7
Lack of knowledge about alternative treatment options
37%
10
Lack of information about financial assistance available
56%
15
Lack of information about how I go about finding a good surgeon
37%
10
Lack of information about the availability of clinical trials in Australia
37%
10
Lack of information about how to get results of clinical trials
30%
8
Lack of information about where to get support
67%
18
Lack of information about the latest research †
4%
1
Other *
0%
0

† recently added question