Patient Perspective Summary of Responses

Some participants have not provided responses to all questions, which is why some of the categories may appear incomplete. Additionally, some questions may have fewer responses than might be expected, this may be due to its being a recent addition to the survey.

Some of the more significant responses have been colour coded.

Number of respondents: 25
Patient Gender: Male 8 Female: 17
Completed: Patient 18 Carer/Family Member 7
Had Surgery: Yes 21 No 4
Hospital:Public 9 Private 11 Both 1
(*) denotes a recently added survey question

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Satisfaction with Medical Team

 

Satisfaction with Surgeon:

Satisfied:
19
Neutral: 3
Dissatisfied 2
Not Applicable 0
Not Answered 1

Were you aware that you were able to ask for a second opinion? *

Yes 10
No 3
Not Applicable 1
Not answered 11

Satisfaction with Oncologist:

Satisfied: 5
Neutral: 8
Dissatisfied: 3
Not Applicable 0
Not Answered 7

Number of Surgeries

One 12
Two 4
More than two 1
Not answered 4

Satisfaction with General Practitioner:

Satisfied: 15
Neutral: 5
Dissatisfied: 3
Not Applicable 0
Not Answered 1

Continuity of Care (Overall Rating) *

Excellent 1
Satisfactory 1
Unsatisfactory 3
I don’t know 0
Not answered 20

Surgeons Quality of Care

My/Our surgeon communicated clearly with me/us 7
My/Our surgeon ensured that I was aware of my/our options 4
My/Our surgeon was thorough in examining me/us 2
My/Our surgeon talked through the diagnosis with me/us 4
My/Our surgeon was honest with me/us when talking about my/our prognosis 4
My/Our surgeon empathised with my/our concerns 4
My/Our surgeon gave me/us confidence 4
My/Our surgeon followed through with me/us post-surgery 1
My/Our surgeon liaised constantly with my/our G.P. 2
My/Our surgeon completed the planned surgery 4
Other * 0

Improvements in Surgeon’s Quality of Care

Better communication as to available options 2
My/our surgeon could have listened to my/our concerns more 1
My/our surgeon didn’t seem to empathise with me/us 1
My/our surgeon was very expensive 2
My/our surgeon was aggressive in approach 2
Other * 1

Symptoms & Diagnosis

 

Symptoms & Diagnosis

Length of Time Living with Symptoms *

Less than 1 Month 0
1-3 Months 0
3-6 Months 0
6-12 Months 0
1-2 Years 0
> 2 Years 0
I Don’t Know 0
Not answered 25

Grade of Tumour

Grade 1 8
Grade 2 3
Grade 3 2
Grade 4 3
Not Applicable 0
Not Sure 4
Not answered 5

Was a correct diagnosis made in the initial doctors examination? *

Yes 6
No 7
Not Applicable 1
Not answered 11

Length of time between Incorrect & Correct Diagnosis *

Less than 1 Month 3
1-3 Months 1
3-6 Months 1
6-12 Months 0
1-2 Years 1
More than 2 Years 2
I Don’t Know 0
Not answered 17

Tumour (Primary or Secondary)

Primary 17
Secondary 1
I Don’t Know 1
Not answered 6

Nature of Incorrect Diagnosis

Migraines 1
Parkinsons Disease 1
Depression 0
Stress 0
Bells Palsy 1
Thrombosis 1
Hydrocephalus 1
Middle Ear Infection 0
Sinus Problem 1
Stroke 0
Eye Allergy 1
Other 0

Hospital

 

Satisfaction with Hospital Quality of Care:

Satisfied: 16
Neutral: 2
Dissatisfied 3
Not answered 4

Would a Care Co-Ordinator have assisted you in your journey? *

Yes 12
No 0
I Don’t Know 2
Not answered 11

HOW WAS TREATMENT PAID FOR

Public Patient 3
Private Health Insurance 14
Privately Funded 2
Not Answered 5

Post Operative Impairment

Dysphasia (Inability to Speak) 0
Dysphagia (Inability to Swallow) 0
Inability to Walk 0
Hemiplegia (Paralysis on one side) 0
Loss of the sense of Smell 0
Neuropathy (Tingling or numbness of hands or feet) 0
Visual deficits 0
Other * 0

ISSUES OF TRAVEL TO HOSPITAL (for regionally domiciled patients)

 

Respondents to this question: 6
Obtaining accommodation near the hospital 3
The cost of travel and accommodation 5
Organising transport to and from hospital 3
Not having support networks nearby 4
Leaving family members behind in my home town 2
Communications difficulties 1
Other * 0

Ongoing Treatment

 

Immediate Post Operative Hospital Care

Physiotherapy 4
Occupational Therapy 3
Speech Therapy 2
Neuro-Psychology 3
None 4
Other * 0

Participation in and knowledge of Clinical Trials

Yes, I participated in a clinical trial 2
Yes, I was informed about clinical trials but did not participate 0
No, I was not informed of clinical trials 6
I didn’t qualify for clinical trials 1
I had no knowledge of clinical trials 7
I had no need of a clinical trial 0
Not answered 9

Type of Ongoing Post Hospital Treatment

Radiotherapy 8
Stereotactic Radiosurgery 2
Chemotherapy 6
Proton Beam Therapy 0
Immunotherapy 0
No post surgical therapy 8
Other * 3

Satisfaction with Post Hospital Treatment:

Satisfied: 11
Neutral: 2
Dissatisfied: 5
Not answered 7

Support

 

Which Financial Support Services are needed.

 

Assistance in dealing with Financial Institutions 4
Assistance in dealing with Utility Providers 3
Information about Hardship Grants 8
Information about Emergency Relief Services 5
Information about where to get financial help 8
Assistance with accessing Superannuation 5
Assistance with Child Care Subsidies or Grants 2

What sort of support services do you feel could be made more available in your ongoing brain tumour journey?

 

Better counselling services 9
More accessible support groups 7
Better information from government agencies 9
Availability of a Care Coordinator 10
Better information about obtaining financial support 8
Disability Parking Information 2
Home Help Information 1
Not Applicable 0
Other * 0

When did you reach out for support? *

When I was first diagnosed 9
Just before surgery 2
Just after surgery 0
During my stay in hospital 0
Soon after I left hospital 0
Weeks after leaving hospital 1
Months after leaving hospital 0
I didn’t reach out for support 3
I don’t know 1
Not answered 9

INITIAL FAMILY/FRIENDS SUPPORT

My partner or spouse accompanied me to all of my appointments 7
I was on my own 5
A friend accompanied me to most or some of my appointments 2
My late husband attended the initial consultation and then after his passing my two sons accompanied me 1
A friend accompanied me to all of my appointments 1
My partner or spouse accompanied me to most or some of my appointments 0
A parent or guardian accompanied me to all of my appointments 2
Not answered 5

What support services (if any) did health care professionals inform you of?

Brain Tumour Alliance Australia 2
Cure Brain Cancer Foundation 1
Local Rehabilitation Hospital 2
Local Counselling Service 0
None 6
Other * 1

Overall Effect on Family *

It has brought us closer together 7
It has adversely affected our family 2
It hasn’t affected us at all 2
I don’t know 2
Not answered 11

Do you feel isolated from your support? *

NO, I don’t feel isolated 4
YES, I do feel isolated 6
I’m not sure 5
Not answered 10

Areas of Family Support Important to You

Being able, if required, to advocate on my behalf 5
Understanding personality changes that may occur 4
Being able to assist me with various tasks 6
Being prepared to take up slack at home 6
Being able to communicate honestly with family and friends 11
Other * 1

Main responses from Family and Friends

Making allowances for changes in behaviour 3
Making allowances for diminished ability to contribute to household 3
Assisting with tasks that otherwise I would complete 3
Being able to communicate honestly with family and friends 5
Recognising that I am not completely recovered 6
Providing financial support 3
I have been alienated from my family 1
Some family members think that I am over-reacting and malingering 5
Some friends think that I am over-reacting and malingering 4
Other * 0

Has your Employer/Workplace been supportive of you?

Yes, they have been supportive 9
No, they haven’t been supportive 6
Not Applicable 8
Not answered 2

Government Services

 

Government Support Services

Satisfied 3
Neutral 6
Dissatisfied 4
Not answered 12

Government Support Provided

Centrelink 1
Local Council Home Help 1
Special Child Care Benefit 1
Office of Housing 1
Medicare Benefits 0
NDIS Support 0
I have not had the energy to enquire with Gov’t agencies 1
Legal Aid 1
Carers Allowance 1
Other * 0

Government Support Roadblocks

Refused Centrelink support 2
Centrelink had no idea about my situation 2
Lack of information or knowledge of support options 4
No NDIS Support 2
I was not entitled to assistance as I am not an Australian citizen 2
No support for someone requiring aged care 1
Poor Communication between agencies 1
Other 0

Rehabilitation

 

Subsequent Rehabilitation Services

Physiotherapy 8 Pilates 1
Occupational therapy 3 Massage 2
Speech therapy 1 Counselling 2
Aquatherapy 2 None 1
Neuropsychology 2 Other * 0

Has Physiotherapy been beneficial? *

YES 5
NO 1
I DON’T KNOW 0

Has Aquatherapy been beneficial? *

YES 1
NO 0
I DON’T KNOW 1

Has Massage Therapy been beneficial? *

YES 2
NO 0
I DON’T KNOW 0

Has Occupational Therapy been beneficial? *

YES 1
NO 1
I DON’T KNOW 1

Has Neuropsychology been beneficial? *

YES 2
NO 0
I DON’T KNOW 0

Has Counselling been beneficial? *

YES 3
NO 0
I DON’T KNOW 0

Has Speech Therapy been beneficial? *

YES 2
NO 0
I DON’T KNOW 0

Has Pilates been beneficial? *

YES 1
NO 0
I DON’T KNOW 0

Recovery

 

 

To what extent has exercise been beneficial to your recovery?

 

It has been very beneficial 8
It has been reasonably beneficial 3
About the same benefit as before the brain tumour 7
It has not really been beneficial 0
It has had a detrimental effect on my recovery 0
Not answered 7

Benefits of Exercise

It has enabled me to stay fit 8
It has helped to clear my head of anxieties 10
Exercise has given me another goal to work towards 11
It makes me feel better 2

Reasons For Not Exercising

I would like to exercise but find it physically difficult at the moment 2
I find it difficult to motivate myself to exercise 1
I’d rather direct my energies to other aspects of my recovery 0
Other * 1

Diet

Have you changed your diet since your brain tumour?

YES 8
NO 6
I DON’T KNOW 0
Not answered 11

Affect of diet on recovery

It has made no difference 2
It has adversely affected my recovery and my quality of life 0
It has made a positive difference to my recovery and to my quality of life 4
I don’t know 5

Dietary Changes

Ketogenic Diet 2
Reduced sugar consumption 2
Reduced or Eliminated alcohol consumption 2
Consumed more Plant based foods 1
Reduced or eliminated meat intake 1
Reduced or eliminated coffee consumption 2
Reduced or eliminated processed foods 0

Do you need time alone during the day?

Every day 10
Frequently (but not every day) 4
2-3 times a week 3
Once a week 0
Once a month 1
Never 1
Not answered 5

How do you take time out?

Reading a book 3
Having a meal with friends 1
Having coffee with friends 5
Going to the Movies 0
Sleeping 7
Meditating 4
Watching something at home 4
Exercise 5
Listening to music 3
Playing a musical instrument 1
Writing about my journey 2

Quality of Life

 

Fatigue (PATIENT)

Yes, I do suffer chronic fatigue 9
Yes, I do suffer increased fatigue but I am not chronically fatigued 12
No, I do not suffer increased fatigue 2
Not answered 1

How have your fatigue levels changed since your brain tumour? *

A significant increase in fatigue 11
A marginal increase in fatigue 4
No change in fatigue levels 1
A marginal decrease in fatigue 0
A significant decrease in fatigue 0
Not answered 9

Balance Issues

Constant balance problems 8
Every now and then 11
I had balance problems but I have since returned to normal 1
I have never had balance issues 3
Not answered 2

BALANCE ISSUES (grouped by Tumour Type):

Glioblastoma Multiforme (GBM) – 3

Constant balance problems 2
Every now and then 1
I had balance problems but I have since returned to normal 0
I have never had balance issues 0
Not answered 0

Oligodendroglioma – 2

Constant balance problems 0
Every now and then 0
I had balance problems but I have since returned to normal 0
I have never had balance issues 1
Not answered 1

Astrocytoma – 3

Constant balance problems 0
Every now and then 3
I had balance problems but I have since returned to normal 0
I have never had balance issues 0
Not answered 0

Meningioma – 13

Constant balance problems 4
Every now and then 6
I had balance problems but I have since returned to normal 1
I have never had balance issues 2
Not answered 0

Fatigue (CARER/FAMILY MEMBER)

My fatigue is debilitating and prevents my ability to function normally 3
My fatigue does prevent a normal lifestyle but it is not debilitating 3
My fatigue is moderately debilitating but does not prevent my ability to function normally 1

Quality of Sleep since Surgery or Treatment

Better 5
Worse 12
About the Same 5
Not Answered 0

 

If your physical and mental well being has been affected by stress can you tell us to what extent stress has had an impact?

 

Very Considerably 3
Somewhat Considerably 2
A Mild Impact 0
Other * 0

Rest during the day

More than 3 times a day 3
Everyday 4
Most days 2
Some days 3
None 0
Not answered 8

Currently Driving a Motor Vehicle

Yes 17
No 6
Not answered 2

Current Work Arrangements

Employed Full-Time 5
Employed Part-Time 4
Self-employed 3
Not employed but looking for work 0
Not employed and not looking for work 3
Homemaker 1
Doing volunteer work 1
Retired 3
Student 1
Prefer Not to Answer 0
I have not been able to return to work 2
Not answered 2

Disorientation

All the time 4
Frequently 5
Sometimes 9
Never 2
Not Sure 0
Not answered 5

Length of Time with Memory Loss

< 1 Month 1
1-6 Months 1
6-12 Months 1
1-2 Years 3
> 2 Years 12
No Memory Loss 7

Impact on Overall Quality of Life

Loss of Income 11
Financial Impact (Cost of Surgery/Treatment) 7
Loss of independence 10
Alienation from family/friends 9
Loss of physical mobility 7
Loss of motivation 10
Anxiety & Depression 10
There has been no impact on my quality of life 1
Other * 0

Information

 

Which methods are best suited to communicate brain tumour news and information?
 
Support Groups 10
Newsletters or Publications 11
Up to date information on the BTAA website 9
Public Forums 8
Applications like Patient Perspective 11
e-News Communiques 5
Social Media Platforms 1

The most important reasons for contributing to Patient Perspective

Recording my brain tumour journey 5
Providing information to help BTAA provide support 13
Providing feedback to the medical community 9
Providing data to government agencies 5

Website Features that assist you most

Up to date information on brain tumour research 12
Stories from other people on the brain tumour journey 9
Support groups close to me 9
Events that I can support 9
Frequently Asked Questions (FAQs) 3
Information on NDIS, Centrelink services 1
Other * 0

MOST IMPORTANT COMPONENTS OF PATIENT PERSPECTIVE

Profile of Brain Tumour 5 Other Therapies 3
Quality & Type of Care (Surgeon) 6 Quality of Life 4
Quality & Type of Care (Oncologist) 3 Support Network 5
Quality & Type of Care (G.P) 3 Support Services 5
Quality & Type of Care (Hospital) 2 Brain Tumour Awareness 7
Post Hospital Treatment & Rehabilitation 6 Work Situation 4
    Brain Tumour News & Information 5

Brain Tumour Awareness

 

Personal Awareness Prior to Diagnosis:

I was aware but had no information: 7
I was not aware at all of brain tumours: 4
I was very aware of brain tumours: 4
I was aware (I have a family member with a brain tumour): 1
Not answered 9

GENERAL PRACTITIONER AWARENESS

I was the first brain tumour patient my G.P. came across: 2
My/Our G.P. was well aware of brain tumours but had never before had a brain tumour patient: 2
My/Our G.P. had previous experience with brain tumour patients and addressed it straight away: 3
i knew I had a brain tumour even tho my GP thought it was something else. She listened to my and sent me to hospital anyway: 1
My/Our G.P. initially thought the brain tumour was something else but did eventually arrive at a correct diagnosis: 1
My/Our G.P was not involved in the diagnosis: 3
My/Our G.P had no brain tumour experience or skills to deal with one: 1
I do not know: 8
They just wanted to refer me on as too complicated so again made me feel like I was odd 1

General Awareness Roadblocks

Lack of knowledge of the therapeutic benefits of chemotherapy 8
Lack of knowledge of the side effects of chemotherapy 6
Lack of knowledge about alternative treatment options 10
Lack of information about financial assistance available 13
Lack of information about how I go about finding a good surgeon 9
Lack of information about the availability of clinical trials in Australia 9
Lack of information about how to get results of clinical trials 8
Lack of information about where to get support 16
Other * 0

Engagement

 

Membership of a Support Group

Yes 21
No 1
Formerly (Not Currently) 2
I Don’t Know 0
Not answered 1

Discussing my Journey

I’m comfortable talking about it because it raises awareness 9
I’m not comfortable talking about it 1
I would prefer not to talk about it but I’m comfortable talking about it when asked 7
I am careful about who I talk to about my journey 2
I’m not sure 1
Not answered 5

Reason(s) for Support Group Membership

To get information about services available 4
To get information about treatment options 4
To get information about the latest research 3
To share the story of my own brain tumour journey 4
To hear about other peoples brain tumour journey 4
To be involved socially with others on a similar journey 5
To have someone to talk to 3
To have someone to help with some day to day living tasks eg. transport 0
To offer my support to other brain tumour patients and carers 4
Other * 0

Success of the Support Group

Information about services available 4
Information about treatment options 4
Information about latest research 3
Someone to talk to 2
The opportunity to share my brain tumour journey 3
The opportunity to hear about other peoples brain tumour journey 5
It has provided an understanding social setting 4
Someone to help with some day to day living tasks eg. transport 0
I have been able to offer support to other brain tumour patients and carers 5
It has not really helped at all 0
Other * 0

Reasons for not belonging to a support group

I have fully recovered and no longer need support 0
The support group I was a member of didn’t offer me the support I needed 0
There were conflicts within the group that made it difficult to stay 0
I have never been made aware of the existence of a support group 1
The support group meets at a time and place that is not convenient for me 0
I haven’t felt that a support group is beneficial to me 0
I’m too unwell to travel to a support group meeting 0
Other * 0

Financial Impact

 

Impression of Financial Impact

A very significant impact 12
A somewhat significant impact 7
A minor impact 3
I’m not sure 1
No impact 1
I’d rather not say 0
Not answered 1

HOW WAS TREATMENT PAID FOR

Public Patient 3
Private Health Insurance 14
Privately Funded 2
Not Answered 5

Financial Impact – Private Insurance

Less than $10,000 2
$10,000 – $20,000 1
$20,000 – $40,000 2
$40,000 – $60,000 0
$60,000 – $80,000 0
$80,000 – $100,000 1
More than $100,000 3
I’m Not Sure 2
I’d rather not say 0

Total Estimated Financial Impact (Private Insurance): $625,000

Financial Impact of treatment

Less than $10,000 4
$10,000 – $20,000 0
$20,000 – $40,000 3
$40,000 – $60,000 2
$60,000 – $80,000 0
$80,000 – $100,000 3
More than $100,000 4
I’m Not Sure 0
I’d rather not say 0
Not answered 4

Total Estimated Financial Impact: $1,080,001

Financial Impact – Public Patient

Less than $10,000 1
$10,000 – $20,000 0
$20,000 – $40,000 0
$40,000 – $60,000 0
$60,000 – $80,000 0
$80,000 – $100,000 1
More than $100,000 1
I’m Not Sure 0
I’d rather not say 0

Total Estimated Financial Impact (Public Patient): $245,000

Estimated Loss of Income *

Less than $10,000 1
$10,000 – $20,000 4
$20,000 – $40,000 0
$40,000 – $60,000 1
$60,000 – $80,000 0
$80,000 – $100,000 1
$100,000 – $200,000 3
More than $200,000 1
I’m not sure 1
I’d rather not say 0
Not answered 13

Total Estimated Loss of Income: $905,000

Financial Impact – Privately Funded

Less than $10,000 0
$10,000 – $20,000 0
$20,000 – $40,000 0
$40,000 – $60,000 1
$60,000 – $80,000 0
$80,000 – $100,000 0
More than $100,000 0
I’m Not Sure 0
I’d rather not say 0

Total Estimated Financial Impact (Privately Funded): $50,000

Personal Evaluation

 

OVERALL FEELING ABOUT ONGOING JOURNEY:

Optimistic: 11
Pessimistic: 5
Not Sure: 6
Too Early to Tell: 3
Not Answered 0

Your expectations following treatment

Much Better 5
Somewhat Better 6
Somewhat Worse 5
Too Early to Tell 0
Much Worse 1
Not Answered 5

PERSONAL HEALTH RATING (out of 10):

10/10: 0 5/10: 0
9/10: 0 4/10: 0
8/10: 0 3/10: 0
7/10: 0 2/10: 0
6/10: 0 1/10: 0
    None 25

OVERALL FEELING ABOUT ONGOING JOURNEY (grouped by Tumour Profile):

No Answer Provided: 0

Malignant Tumour

Total: 8

Optimistic 4
Pessimistic 2
Too Early to Tell 1
Not Sure 1

Benign Tumour

Total: 14

Optimistic 7
Pessimistic 3
Too Early to Tell 1
Not Sure 3

To be determined

Total: 2

Optimistic 0
Pessimistic 0
Too Early to Tell 1
Not Sure 1

Don’t Know

Total: 1

Optimistic 0
Pessimistic 0
Too Early to Tell 0
Not Sure 1

OVERALL FEELING ABOUT ONGOING JOURNEY (grouped by Feeling of Isolation):

No Answer Provided: 10

Not Feeling Isolated

Total: 4

Optimistic 3
Pessimistic 0
Too Early to Tell 0
Not Sure 1

Feeling Isolated

Total: 6

Optimistic 1
Pessimistic 0
Too Early to Tell 2
Not Sure 3

Not Sure

Total: 5

Optimistic 0
Pessimistic 1
Too Early to Tell 1
Not Sure 1

Patient Perspective User Feedback  

 

RELEVANCY

Very Relevant 14
Mostly Relevant 6
Partly Relevant 4
Not Really Relevant 0
Not Relevant at All 0
Don’t Know 0
Not answered 1

OVERALL IMPRESSIONS (LENGTH)

It’s too long 1
It’s not long enough 0
It’s about the right length 20
I don’t know 3

OVERALL IMPRESSIONS (DETAIL)

It’s too detailed 1
It’s not detailed enough 3
It has about the right amount of detail 16
I don’t know 4

LIKELIHOOD TO PARTICIPATE

Definitely 16
Probably 8
Not Sure 0
Probably Not 0
Definitely Not 0
Not answered 1

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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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