Patient Perspective Graphs

Number of respondents: 28

Type of Brain Tumour...

Astrocytoma

11%

Glioma

Glioblastoma Multiforme (GBM)

15%

Glialsarcoma

Meningioma

52%

Oligodendroglioma

11%

Neurofibromatosis

Pituitary Adenoma

Acoustic Neuroma

Haemangioblastoma

Medulloblastoma

(DIPG) - Diffuse Intrinsic Pontine Glioma

Ependymoma

Pineal Cyst

Colloid Cyst

Glioneuroma

Ganglioglioma

Astroblastoma

Schwannoma

Dysplastic cerebellar gangliocytoma (Lhermitt-Duclos disease)

I Don't Know

Other *

Symptoms

Seizures

14%

Headaches

43%

Migraines

Vertigo

29%

Dizziness

18%

Nausea

18%

Depression

14%

Confusion

11%

Anxiety

11%

Problems with Speech

21%

Insomnia

14%

Blurred vision

14%

Mood swings

Memory Loss

21%

An accident

14%

Metallic taste in mouth

Facial Numbness

Tingling in Fingers

Clumsiness

Stroke

Dyspraxia (Hand to Eye Co-ordination problems)

Tinnitus

Hearing Difficulties

Incontinence

Fits of Anger

Epileptic Fit

Vomiting

Other *

Age at Diagnosis

0-14

15-18

19-24

25-39

26%

40-64

63%

> 64

I'd rather not say

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

1-2 Years

More than 2 Years

Nature of Initial Diagnosis

Migraines

11%

Bells Palsy

11%

Parkinsons Disease

11%

Dementia

Thrombosis

11%

Anxiety

Depression

22%

Hydrocephalus

11%

Stress

Middle Ear Infection

11%

Sinus Problem

Stroke

Eye Allergy

Epilepsy

* Other

Reaction to Initial Diagnosis & Follow-Up Research

I consulted my G.P

I discussed it with my surgeon

I Googled "brain tumours"

I joined social media support groups

I spoke to other health professionals

I discussed it with family

I discussed it with friends

Other *

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 *

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 *

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 *

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 *

Post Operative Impairment

Dysphasia (Inability to Speak)

21%

Dysphagia (Inability to Swallow)

14%

Inability to Walk

18%

Hemiplegia (Paralysis on one side)

Loss of the sense of Smell

Neuropathy (Tingling or numbness of hands or feet)

14%

Visual deficits

Loss of eyesight

Apraxia (Difficulty with motor skills)

11%

Epilepsy

Other *

Type of Ongoing Treatment

Radiotherapy

39%

Stereotactic Radiosurgery

Chemotherapy

29%

Proton Beam Therapy

No post surgical therapy

29%

Other *

11%

Medications

Temozolomide

14%

Dexemethazone

18%

Avastin

Warfarin

Dilantin

11%

Keppra

36%

Procarbozine

11%

Lomustine

Somac

14%

Xarelto

Norvas

Fenofibrate

Codeine

Depatuxizumab (IBT-414)

Keytruda

Tyrosine

Endone

Other *

Complimentary & Alternative Therapies

Naturopathy

25%

Medical Cannabis

18%

Oncology Massage

Acupuncture

Herbal Medicine

Other *

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

Other

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

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 *

Numbness, Hemiplegia or Neuropathy - old

Just my Head

19%

Just Leg(s)

Just Arm(s)

10%

Leg(s) and Arm(s)

14%

Head, Leg(s) and Arm(s)

24%

No Numbness, Hemeplegia or Neuropathy

24%

Other

Exercise Frequency

Every day

28%

4 to 5 times a week

24%

2 to 3 times a week

16%

Once a week

2 to 3 times a month

Once a month

Less than once a month

I have chosen not to exercise

I am unable to exercise

16%

Type of Exercise

Walking

64%

Swimming

14%

Cycling

Running

11%

Tennis

Yoga

Tai Chi

Pilates

Bowls

Gardening

14%

Golf

Gym Sessions

Kayaking/Rowing

Weight Training

Step Climbing

Other *

Benefit of Exercise

It has been crucial

It has been very vitally important

It has been reasonably important

About the same importance and benefit as before the brain tumour

It has not really been important

It has had a detrimental effect on my recovery

Other

100%

Most Profound Impact (Physical and Mental Wellbeing)

Chronic Fatigue

46%

Seizures

Loss of Balance

32%

Double Vision

14%

Neuropathy (Numbness, Pins & Needles)

14%

Memory Loss

50%

Stress

Anxiety

Depression

14%

Headaches

11%

Fogginess

Loss of the Sense of Smell

Pain

Mood Swings

Other *

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

I have been unable to travel

Uncertainty about my prognosis

There has been no impact on my quality of life

Other *

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

Some friends have distanced themselves from me

36%

Some friends have become closer to me

29%

I have become more socially outgoing

My social engagement has remained the same

Other *

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

Length of time out of work

Less than a Month

1-3 Months

14%

3-6 Months

6-12 Months

14%

12-18 Months

14%

18 Months - 2 Years

More than 2 Years

18%

Not Applicable

14%

State of Health/Recovery Personal Rating (out of 10)

11%

14%

25%

14%

18%

Extent of Financial Impact

Less than $10,000

17%

$10,000 - $20,000

$20,000 - $40,000

13%

$40,000 - $60,000

17%

$60,000 - $80,000

$80,000 - $100,000

13%

More than $100,000

17%

I Don't Know

21%

I'd rather not say

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

Assistance with accessing the NDIS

Other *

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

Home help information

Not Applicable

Other *

Areas where I would like some support

Transport

11%

Counselling

21%

Meals

Financial

18%

Exercise Tips

11%

Dietary Tips

11%

Housework

14%

Shopping

11%

Coffee Companion (someone to talk to)

29%

Information

Dealing with Government Agencies

Other *

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 †

Other *

† recently added question

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