Patient Perspective Graphs

Number of respondents: 28

 

Type of Brain Tumour...
Astrocytoma
11%
Glioma
4%
Glioblastoma Multiforme (GBM)
15%
Glialsarcoma
0%
Meningioma
52%
Oligodendroglioma
11%
Neurofibromatosis
0%
Pituitary Adenoma
0%
Acoustic Neuroma
0%
Haemangioblastoma
0%
Medulloblastoma
0%
(DIPG) - Diffuse Intrinsic Pontine Glioma
4%
Ependymoma
0%
Pineal Cyst
0%
Colloid Cyst
4%
Glioneuroma
0%
Ganglioglioma
0%
Astroblastoma
0%
Schwannoma
0%
Dysplastic cerebellar gangliocytoma (Lhermitt-Duclos disease)
0%
I Don't Know
0%
Other *
0%

Symptoms
Seizures
14%
Headaches
43%
Migraines
0%
Vertigo
29%
Dizziness
18%
Nausea
18%
Depression
14%
Confusion
11%
Anxiety
11%
Problems with Speech
21%
Insomnia
14%
Blurred vision
14%
Mood swings
7%
Memory Loss
21%
An accident
14%
Metallic taste in mouth
0%
Facial Numbness
4%
Tingling in Fingers
0%
Clumsiness
4%
Stroke
0%
Dyspraxia (Hand to Eye Co-ordination problems)
4%
Tinnitus
4%
Hearing Difficulties
0%
Incontinence
7%
Fits of Anger
0%
Epileptic Fit
0%
Vomiting
0%
Other *
0%

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

 

Time Between Diagnosis & Surgery
Less than 24 hours
10%
24-72 hours
14%
1-2 weeks
14%
3-6 weeks
19%
2-6 months
33%
6-12 months
0%
1-2 Years
5%
More than 2 Years
5%

Nature of Initial Diagnosis
Migraines
11%
Bells Palsy
11%
Parkinsons Disease
11%
Dementia
0%
Thrombosis
11%
Anxiety
0%
Depression
22%
Hydrocephalus
11%
Stress
0%
Middle Ear Infection
11%
Sinus Problem
0%
Stroke
0%
Eye Allergy
0%
Epilepsy
0%
* Other
0%

Reaction to Initial Diagnosis & Follow-Up Research
I consulted my G.P
4%
I discussed it with my surgeon
4%
I Googled "brain tumours"
0%
I joined social media support groups
0%
I spoke to other health professionals
0%
I discussed it with family
4%
I discussed it with friends
0%
Other *
4%

Questions for the Surgeon (General)
Can I record our conversation so that I don't miss any important information?
25%
How common is my tumour?
32%
Are there further tests that I need to have?
32%
What is the aim of my surgery?
36%
How often have you done this type of surgery?
32%
Is surgery absolutely necessary?
25%
Do I have a choice of treatments?
14%
How much time do I have to think about this?
18%
Are there any advantages or disadvantages of using the private versus the public health system?
14%
What is your opinion about the best treatment for me?
32%
What will be the costs throughout my treatment eg. ongoing medication and operation costs?
25%
Am I eligible for benefits if I cannot work?
21%
What information is available about my tumour and the surgery? eg. books, websites, publications.
21%
Are there any complimentary therapies that you believe may be helpful or that are known to be bad for me?
21%
How commonly do the risks outlined on the craniotomy consent form occur?
18%
Are you concerned for about any particular complications?
18%
Other *
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?
46%
Are there any problems that I should look out for?
43%
What do I do if these problems occur?
43%
What symptoms or changes should I tell you about?
46%
Am I likely to have seizures?
39%
What should I tell my family if I have a seizure?
32%
In what situations should I go to hospital or call an ambulance?
43%
Are there warning signs for a seizure?
32%
Other *
0%

Questions for the Surgeon (Prognosis)
What is my long term prognosis?
54%
What is the expected survival for people with my type of tumour?
43%
Is surgery going to improve my chance of survival?
32%
If the tumour is likely to return, how long will it be before it returns?
43%
Could my tumour become more aggressive in the future?
46%
What is the best case scenario?
43%
What is the worst case scenario?
43%
Other *
0%

Questions for the Surgeon (Treatment & Support)
What effects should I expect after the surgery?
54%
How long do you expect me to be in hospital?
43%
What problems should I look out for when I go home and who do I contact if they occur?
43%
What are the dos and don'ts of after care?
50%
What additional treatment will I need after surgery?
29%
Is there someone I can talk to who has been through this surgery?
29%
Are there any services or support groups that can help me and my family deal with this illness?
21%
What can I do to improve my surgical outcome and recovery e.g. exercise, vitamin supplements, diet, meditation etc?
14%
When will I be able to return to work?
14%
Other *
0%

Post Operative Impairment
Dysphasia (Inability to Speak)
21%
Dysphagia (Inability to Swallow)
14%
Inability to Walk
18%
Hemiplegia (Paralysis on one side)
4%
Loss of the sense of Smell
7%
Neuropathy (Tingling or numbness of hands or feet)
14%
Visual deficits
7%
Loss of eyesight
4%
Apraxia (Difficulty with motor skills)
11%
Epilepsy
0%
Other *
0%

Type of Ongoing Treatment
Radiotherapy
39%
Stereotactic Radiosurgery
7%
Chemotherapy
29%
Proton Beam Therapy
0%
No post surgical therapy
29%
Other *
11%

Medications
Temozolomide
14%
Dexemethazone
18%
Avastin
4%
Warfarin
7%
Dilantin
11%
Keppra
36%
Procarbozine
11%
Lomustine
7%
Somac
14%
Xarelto
7%
Norvas
4%
Fenofibrate
4%
Codeine
7%
Depatuxizumab (IBT-414)
4%
Keytruda
4%
Tyrosine
0%
Endone
0%
Other *
0%

Complimentary & Alternative Therapies
Naturopathy
25%
Medical Cannabis
18%
Oncology Massage
4%
Acupuncture
4%
Herbal Medicine
7%
Other *
0%

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

Nature of Balance Issues
I have difficulty walking down stairs
36%
I need to stop every now and then to regain my balance
25%
I have difficulty carrying things
14%
I have difficulty getting dressed
18%
I have difficulty maintaining balance when walking
14%
I have trouble standing for long periods
18%
I have a slower walking gait
32%
Other *
11%

Type of Memory Loss
Short Term Memory Loss
46%
Long Term Memory Loss
0%
Both Short and Long Term Memory Loss
32%
No Memory Loss issues
21%

Side-Effects of Memory Loss
Forgetting peoples names
57%
Forgetting to do chores around the house
39%
Forgetting appointments
50%
Forgetting where I am
21%
Searching for words
43%
Forgetting where I have put things
36%
Not remembering what day of the week it is
18%
Not remembering friends or family members
11%
Other *
0%

Numbness, Hemiplegia or Neuropathy - old
Just my Head
19%
Just Leg(s)
5%
Just Arm(s)
10%
Leg(s) and Arm(s)
14%
Head, Leg(s) and Arm(s)
24%
No Numbness, Hemeplegia or Neuropathy
24%
Other
5%

Exercise Frequency
Every day
28%
4 to 5 times a week
24%
2 to 3 times a week
16%
Once a week
8%
2 to 3 times a month
4%
Once a month
0%
Less than once a month
4%
I have chosen not to exercise
0%
I am unable to exercise
16%

Type of Exercise
Walking
64%
Swimming
14%
Cycling
7%
Running
11%
Tennis
0%
Yoga
0%
Tai Chi
4%
Pilates
4%
Bowls
0%
Gardening
14%
Golf
0%
Gym Sessions
7%
Kayaking/Rowing
4%
Weight Training
0%
Step Climbing
4%
Other *
0%

Benefit of Exercise
It has been crucial
0%
It has been very vitally important
0%
It has been reasonably important
0%
About the same importance and benefit as before the brain tumour
0%
It has not really been important
0%
It has had a detrimental effect on my recovery
0%
Other
100%

Most Profound Impact (Physical and Mental Wellbeing)
Chronic Fatigue
46%
Seizures
7%
Loss of Balance
32%
Double Vision
14%
Neuropathy (Numbness, Pins & Needles)
14%
Memory Loss
50%
Stress
7%
Anxiety
0%
Depression
14%
Headaches
11%
Fogginess
7%
Loss of the Sense of Smell
0%
Pain
4%
Mood Swings
4%
Other *
4%

Most Profound Impact (Overall Quality of Life)
Loss of Income
43%
Financial Impact (Cost of Surgery/Treatment)
29%
Loss of independence
46%
Alienation from family/friends
36%
Loss of physical mobility
36%
Loss of motivation
36%
Anxiety & Depression
39%
Loneliness
7%
I have been unable to travel
0%
Uncertainty about my prognosis
0%
There has been no impact on my quality of life
0%
Other *
0%

Impact on Social Engagement
I have become more socially isolated
75%
I have narrowed my range of friendships
54%
I have expanded my range of friendships
7%
Some friends have distanced themselves from me
36%
Some friends have become closer to me
29%
I have become more socially outgoing
0%
My social engagement has remained the same
4%
Other *
0%

Length of Time Not Driving
Less than 1 Month
13%
1-6 Months
13%
6-12 Months
50%
1-2 Years
13%
More than 2 Years
13%

Recommencement of Driving
I returned straight away to driving
43%
I had to undergo a driving test prior to returning to driving
43%
I am driving (no test required) but with conditions attached
14%
Other
0%

Length of time out of work
Less than a Month
9%
1-3 Months
14%
3-6 Months
9%
6-12 Months
14%
12-18 Months
14%
18 Months - 2 Years
9%
More than 2 Years
18%
Not Applicable
14%

State of Health/Recovery Personal Rating (out of 10)
1
11%
2
0%
3
4%
4
7%
5
14%
6
25%
7
14%
8
18%
9
7%
10
0%

Extent of Financial Impact
Less than $10,000
17%
$10,000 - $20,000
4%
$20,000 - $40,000
13%
$40,000 - $60,000
17%
$60,000 - $80,000
0%
$80,000 - $100,000
13%
More than $100,000
17%
I Don't Know
21%
I'd rather not say
0%

Total Estimated Financial Impact: $1,195,001

  • 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
18%
Assistance in dealing with Utility Providers
18%
Information about Hardship Grants
39%
Information about Emergency Relief Services
21%
Information about where to get financial help
36%
Assistance with accessing Superannuation
21%
Assistance with Child Care Subsidies or Grants
7%
Assistance with accessing the NDIS
7%
Other *
0%

 

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

Additional Ongoing Support Services
Better counselling services
32%
More accessible support groups
25%
Better information from government agencies
32%
Availability of a Care Coordinator
36%
Better information about obtaining financial support
29%
Disability Parking information
7%
Home help information
4%
Not Applicable
0%
Other *
0%

Areas where I would like some support
Transport
11%
Counselling
21%
Meals
7%
Financial
18%
Exercise Tips
11%
Dietary Tips
11%
Housework
14%
Shopping
11%
Coffee Companion (someone to talk to)
29%
Information
0%
Dealing with Government Agencies
0%
Other *
0%

Current Brain Tumour Awareness Roadblocks
Lack of knowledge of the therapeutic benefits of chemotherapy
36%
Lack of knowledge of the side effects of chemotherapy
25%
Lack of knowledge about alternative treatment options
39%
Lack of information about financial assistance available
57%
Lack of information about how I go about finding a good surgeon
36%
Lack of information about the availability of clinical trials in Australia
36%
Lack of information about how to get results of clinical trials
29%
Lack of information about where to get support
68%
Lack of information about the latest research †
7%
Other *
0%

† recently added question