Patient Perspective Responses (Charts & Numbers)
These statistics represent a summary of contributions from the brain tumour community. They provide a breakdown of responses. The charts display percentage responses for key survey questions. We have attempted to capture every aspect of the brain tumour journey. We hope this information provides some insight.
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.
The most relevant responses have been colour coded.
Were you aware that you were able to ask for a second opinion? *
| Yes | 0 |
| No | 0 |
| Not Applicable | 0 |
| Not answered | 0 |
Satisfaction with Oncologist:
| Satisfied: | 0 |
| Neutral: | 0 |
| Dissatisfied: | 0 |
| Not Applicable | 0 |
| Not Answered | 0 |
Number of Surgeries
| One | 0 |
| Two | 0 |
| More than two | 0 |
| Not answered | 0 |
Satisfaction with General Practitioner:
| Satisfied: | 0 |
| Neutral: | 0 |
| Dissatisfied: | 0 |
| Not Applicable | 0 |
| Not Answered | 0 |
Continuity of Care (Overall Rating) *
| Excellent | 0 |
| Satisfactory | 0 |
| Unsatisfactory | 0 |
| I don’t know | 0 |
| Not answered | 0 |
SATISFACTION WITH MEDICAL TEAM
Surgeons Quality of Care
| My/Our surgeon communicated clearly with me/us | 0 |
| My/Our surgeon ensured that I was aware of my/our options | 0 |
| My/Our surgeon was thorough in examining me/us | 0 |
| My/Our surgeon talked through the diagnosis with me/us | 0 |
| My/Our surgeon was honest with me/us when talking about my/our prognosis | 0 |
| My/Our surgeon empathised with my/our concerns | 0 |
| My/Our surgeon gave me/us confidence | 0 |
| My/Our surgeon followed through with me/us post-surgery | 0 |
| My/Our surgeon liaised constantly with my/our G.P. | 0 |
| My/Our surgeon completed the planned surgery | 0 |
| Other * | 0 |
Improvements in Surgeon’s Quality of Care
| Better communication as to available options | 0 |
| My/our surgeon could have listened to my/our concerns more | 0 |
| My/our surgeon didn’t seem to empathise with me/us | 0 |
| My/our surgeon was very expensive | 0 |
| My/our surgeon was aggressive in approach | 0 |
| Other * | 0 |
Grade of Tumour
| Grade 1 | 0 |
| Grade 2 | 0 |
| Grade 3 | 0 |
| Grade 4 | 0 |
| Not Applicable | 0 |
| Not Sure | 0 |
| Not answered | 0 |
Was a correct diagnosis made in the initial doctors examination? *
| Yes | 0 |
| No | 0 |
| Not Applicable | 0 |
| Not answered | 0 |
Length of time between Incorrect & Correct Diagnosis *
| Less than 1 Month | 0 |
| 1-3 Months | 0 |
| 3-6 Months | 0 |
| 6-12 Months | 0 |
| 1-2 Years | 0 |
| More than 2 Years | 0 |
| I Don’t Know | 0 |
| Not answered | 0 |
Nature of Incorrect Diagnosis
| Migraines | 0 |
| Parkinsons Disease | 0 |
| Depression | 0 |
| Stress | 0 |
| Bells Palsy | 0 |
| Thrombosis | 0 |
| Hydrocephalus | 0 |
| Middle Ear Infection | 0 |
| Sinus Problem | 0 |
| Stroke | 0 |
| Eye Allergy | 0 |
| Other | 0 |
Satisfaction with Hospital Quality of Care:
| Satisfied: | 0 |
| Neutral: | 0 |
| Dissatisfied | 0 |
| Not answered | 0 |
HOW WAS TREATMENT PAID FOR
| Public Patient | 0 |
| Private Health Insurance | 0 |
| Privately Funded | 0 |
| Not Answered | 0 |
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 |
| Other * | 0 |
ISSUES OF TRAVEL TO HOSPITAL (for regionally domiciled patients)
| Respondents to this question: | 0 |
| Obtaining accommodation near the hospital | 0 |
| The cost of travel and accommodation | 0 |
| Organising transport to and from hospital | 0 |
| Not having support networks nearby | 0 |
| Leaving family members behind in my home town | 0 |
| Communications difficulties | 0 |
| Other * | 0 |
Type of Ongoing Post Hospital Treatment
| Radiotherapy | 0 |
| Stereotactic Radiosurgery | 0 |
| Chemotherapy | 0 |
| Proton Beam Therapy | 0 |
| Immunotherapy | 0 |
| No post surgical therapy | 0 |
| Other * | 0 |
Satisfaction with Post Hospital Treatment:
| Satisfied: | 0 |
| Neutral: | 0 |
| Dissatisfied: | 0 |
| Not answered | 0 |
Which Financial Support Services are needed.
| Assistance in dealing with Financial Institutions | 0 |
| Assistance in dealing with Utility Providers | 0 |
| Information about Hardship Grants | 0 |
| Information about Emergency Relief Services | 0 |
| Information about where to get financial help | 0 |
| Assistance with accessing Superannuation | 0 |
| Assistance with Child Care Subsidies or Grants | 0 |
What sort of support services do you feel could be made more available in your ongoing brain tumour journey?
| Better counselling services | 0 |
| More accessible support groups | 0 |
| Better information from government agencies | 0 |
| Availability of a Care Coordinator | 0 |
| Better information about obtaining financial support | 0 |
| Not Applicable | 0 |
| Other * | 0 |
When did you reach out for support? *
| When I was first diagnosed | 0 |
| Just before surgery | 0 |
| Just after surgery | 0 |
| During my stay in hospital | 0 |
| Soon after I left hospital | 0 |
| Weeks after leaving hospital | 0 |
| Months after leaving hospital | 0 |
| I didn’t reach out for support | 0 |
| I don’t know | 0 |
| Not answered | 0 |
INITIAL FAMILY/FRIENDS SUPPORT
| My partner or spouse accompanied me to all of my appointments | 0 |
| I was on my own | 0 |
| A friend accompanied me to most or some of my appointments | 0 |
| My late husband attended the initial consultation and then after his passing my two sons accompanied me | 0 |
| A friend accompanied me to all of my appointments | 0 |
| 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 | 0 |
| Not answered | 0 |
What support services (if any) did health care professionals inform you of?
| Brain Tumour Alliance Australia | 0 |
| Cure Brain Cancer Foundation | 0 |
| Local Rehabilitation Hospital | 0 |
| Local Counselling Service | 0 |
| None | 0 |
| Other * | 0 |
Overall Effect on Family *
| It has brought us closer together | 0 |
| It has adversely affected our family | 0 |
| It hasn’t affected us at all | 0 |
| I don’t know | 0 |
| Not answered | 0 |
Do you feel isolated from your support? *
| NO, I don’t feel isolated | 0 |
| YES, I do feel isolated | 0 |
| I’m not sure | 0 |
| Not answered | 0 |
Areas of Family Support Important to You
| Being able, if required, to advocate on my behalf | 0 |
| Understanding personality changes that may occur | 0 |
| Being able to assist me with various tasks | 0 |
| Being prepared to take up slack at home | 0 |
| Being able to communicate honestly with family and friends | 0 |
| Other * | 0 |
Main responses from Family and Friends
| Making allowances for changes in behaviour | 0 |
| Making allowances for diminished ability to contribute to household | 0 |
| Assisting with tasks that otherwise I would complete | 0 |
| Being able to communicate honestly with family and friends | 0 |
| Recognising that I am not completely recovered | 0 |
| Providing financial support | 0 |
| I have been alienated from my family | 0 |
| Some family members think that I am over-reacting and malingering | 0 |
| Some friends think that I am over-reacting and malingering | 0 |
| Other * | 0 |
Has your Employer/Workplace been supportive of you?
| Yes, they have been supportive | 0 |
| No, they haven’t been supportive | 0 |
| Not Applicable | 0 |
| Not answered | 0 |
Government Support Provided
| Centrelink | 0 |
| Local Council Home Help | 0 |
| Special Child Care Benefit | 0 |
| Office of Housing | 0 |
| Medicare Benefits | 0 |
| NDIS Support | 0 |
| I have not had the energy to enquire with Gov’t agencies | 0 |
| Legal Aid | 0 |
| Carers Allowance | 0 |
| Other * | 0 |
Government Support Roadblocks
| Refused Centrelink support | 0 |
| Centrelink had no idea about my situation | 0 |
| Lack of information or knowledge of support options | 0 |
| No NDIS Support | 0 |
| I was not entitled to assistance as I am not an Australian citizen | 0 |
| No support for someone requiring aged care | 0 |
| Poor Communication between agencies | 0 |
| Other | 0 |
Has Physiotherapy been beneficial? *
| YES | 0 |
| NO | 0 |
| I DON’T KNOW | 0 |
Has Aquatherapy been beneficial? *
| YES | 0 |
| NO | 0 |
| I DON’T KNOW | 0 |
Has Massage Therapy been beneficial? *
| YES | 0 |
| NO | 0 |
| I DON’T KNOW | 0 |
Has Occupational Therapy been beneficial? *
| YES | 0 |
| NO | 0 |
| I DON’T KNOW | 0 |
Has Neuropsychology been beneficial? *
| YES | 0 |
| NO | 0 |
| I DON’T KNOW | 0 |
Has Counselling been beneficial? *
| YES | 0 |
| NO | 0 |
| I DON’T KNOW | 0 |
Has Speech Therapy been beneficial? *
| YES | 0 |
| NO | 0 |
| I DON’T KNOW | 0 |
Has Pilates been beneficial? *
| YES | 0 |
| NO | 0 |
| I DON’T KNOW | 0 |
What benefit has exercise been to your recovery?
| It has been very beneficial | 0 |
| It has been reasonably beneficial | 0 |
| About the same benefit as before the brain tumour | 0 |
| It has not really been beneficial | 0 |
| It has had a detrimental effect on my recovery | 0 |
| Not answered | 0 |
Benefits of Exercise
| It has enabled me to stay fit | 0 |
| It has helped to clear my head of anxieties | 0 |
| Exercise has given me another goal to work towards | 0 |
| It makes me feel better | 0 |
Reasons For Not Exercising
| I would like to exercise but find it physically difficult at the moment | 0 |
| I find it difficult to motivate myself to exercise | 0 |
| I’d rather direct my energies to other aspects of my recovery | 0 |
| Other * | 0 |
Diet
Have you changed your diet since your brain tumour?
| YES | 0 |
| NO | 0 |
| I DON’T KNOW | 0 |
| Not answered | 0 |
Affect of diet on recovery
| It has made no difference | 0 |
| 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 | 0 |
| I don’t know | 0 |
Details of Dietary Changes
| Ketogenic Diet | 0 |
| Reduced sugar consumption | 0 |
| Reduced or Eliminated alcohol consumption | 0 |
| Consumed more Plant based foods | 0 |
| Reduced or eliminated meat intake | 0 |
| Reduced or eliminated coffee consumption | 0 |
| Reduced or eliminated processed foods | 0 |
| Other * | 0 |
Do you need time alone during the day?
| Every day | 0 |
| Frequently (but not every day) | 0 |
| 2-3 times a week | 0 |
| Once a week | 0 |
| Once a month | 0 |
| Never | 0 |
| Not answered | 0 |
How do you take time out?
| Reading a book | 0 |
| Having a meal with friends | 0 |
| Having coffee with friends | 0 |
| Going to the Movies | 0 |
| Sleeping | 0 |
| Meditating | 0 |
| Watching something at home | 0 |
| Exercise | 0 |
| Listening to music | 0 |
| Playing a musical instrument | 0 |
| Writing about my journey | 0 |
How have your fatigue levels changed since your brain tumour? *
| A significant increase in fatigue | 0 |
| A marginal increase in fatigue | 0 |
| No change in fatigue levels | 0 |
| A marginal decrease in fatigue | 0 |
| A significant decrease in fatigue | 0 |
| Not answered | 0 |
Balance Issues
| 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 | 0 |
| Not answered | 0 |
Fatigue (CARER/FAMILY MEMBER)
| My fatigue is debilitating and prevents my ability to function normally | 0 |
| My fatigue does prevent a normal lifestyle but it is not debilitating | 0 |
| My fatigue is moderately debilitating but does not prevent my ability to function normally | 0 |
Quality of Sleep since Surgery or Treatment
| Better | 0 |
| Worse | 0 |
| About the Same | 0 |
| Not Answered | 0 |
Numbness, Hemiplegia or Neuropathy
| Just my head | 0 |
| One of my legs | 0 |
| One of my arms | 0 |
| Both arms | 0 |
| Both legs | 0 |
| Both legs and arms | 0 |
| Head, legs and arms | 0 |
| No numbness, hemeplegia or neuropathy | 0 |
| 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 | 0 |
| Somewhat Considerably | 0 |
| A Mild Impact | 0 |
| Other * | 0 |
Rest during the day
| More than 3 times a day | 0 |
| Everyday | 0 |
| Most days | 0 |
| Some days | 0 |
| None | 0 |
| Not answered | 0 |
Currently Driving a Motor Vehicle
| Yes | 0 |
| No | 0 |
| Not answered | 0 |
Current Work Arrangements
| Employed Full-Time | 0 |
| Employed Part-Time | 0 |
| Self-employed | 0 |
| Not employed but looking for work | 0 |
| Not employed and not looking for work | 0 |
| Homemaker | 0 |
| Doing volunteer work | 0 |
| Retired | 0 |
| Student | 0 |
| Prefer Not to Answer | 0 |
| I have not been able to return to work | 0 |
| Not answered | 0 |
Disorientation
| All the time | 0 |
| Frequently | 0 |
| Sometimes | 0 |
| Never | 0 |
| Not Sure | 0 |
| Not answered | 0 |
Length of Time with Memory Loss
| < 1 Month | 0 |
| 1-6 Months | 0 |
| 6-12 Months | 0 |
| 1-2 Years | 0 |
| > 2 Years | 0 |
| No Memory Loss | 0 |
Impact on Overall Quality of Life
| Loss of Income | 0 |
| Financial Impact (Cost of Surgery/Treatment) | 0 |
| Loss of independence | 0 |
| Alienation from family/friends | 0 |
| Loss of physical mobility | 0 |
| Loss of motivation | 0 |
| Anxiety & Depression | 0 |
| There has been no impact on my quality of life | 0 |
| Other * | 0 |
The most important reasons for contributing to Patient Perspective
| Recording my brain tumour journey | 0 |
| Providing information to help BTAA provide support | 0 |
| Providing feedback to the medical community | 0 |
| Providing data to government agencies | 0 |
| Support Groups | 0 |
| Newsletters or Publications | 0 |
| Up to date information on the BTAA website | 0 |
| Public Forums | 0 |
| Applications like Patient Perspective | 0 |
| e-News Communiques | 0 |
| Social Media Platforms | 0 |
Website Features that assist you most
| Up to date information on brain tumour research | 0 |
| Stories from other people on the brain tumour journey | 0 |
| Support groups close to me | 0 |
| Events that I can support | 0 |
| Frequently Asked Questions (FAQs) | 0 |
| Information on NDIS, Centrelink services | 0 |
| Other * | 0 |
MOST IMPORTANT COMPONENTS OF PATIENT PERSPECTIVE
| Profile of Brain Tumour | 0 | Other Therapies | 0 |
| Quality & Type of Care (Surgeon) | 0 | Quality of Life | 0 |
| Quality & Type of Care (Oncologist) | 0 | Support Network | 0 |
| Quality & Type of Care (G.P) | 0 | Support Services | 0 |
| Quality & Type of Care (Hospital) | 0 | Brain Tumour Awareness | 0 |
| Post Hospital Treatment & Rehabilitation | 0 | Work Situation | 0 |
| Brain Tumour News & Information | 0 |
GENERAL PRACTITIONER AWARENESS
| I was the first brain tumour patient my G.P. came across: | 0 |
| My/Our G.P. was well aware of brain tumours but had never before had a brain tumour patient: | 0 |
| My/Our G.P. had previous experience with brain tumour patients and addressed it straight away: | 0 |
| 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: | 0 |
| My/Our G.P. initially thought the brain tumour was something else but did eventually arrive at a correct diagnosis: | 0 |
| My/Our G.P was not involved in the diagnosis: | 0 |
| My/Our G.P had no brain tumour experience or skills to deal with one: | 0 |
| I do not know: | 0 |
| They just wanted to refer me on as too complicated so again made me feel like I was odd | 0 |
GENERAL AWARENESS ROADBLOCKS
| Lack of knowledge of the therapeutic benefits of chemotherapy | 0 |
| Lack of knowledge of the side effects of chemotherapy | 0 |
| Lack of knowledge about alternative treatment options | 0 |
| Lack of information about financial assistance available | 0 |
| Lack of information about how I go about finding a good surgeon | 0 |
| Lack of information about the availability of clinical trials in Australia | 0 |
| Lack of information about how to get results of clinical trials | 0 |
| Lack of information about where to get support | 0 |
| Other * | 0 |
Discussing my Journey
| I’m comfortable talking about it because it raises awareness | 0 |
| I’m not comfortable talking about it | 0 |
| I would prefer not to talk about it but I’m comfortable talking about it when asked | 0 |
| I am careful about who I talk to about my journey | 0 |
| I’m not sure | 0 |
| Not answered | 0 |
Reason(s) for Support Group Membership
| To get information about services available | 0 |
| To get information about treatment options | 0 |
| To get information about the latest research | 0 |
| To share the story of my own brain tumour journey | 0 |
| To hear about other peoples brain tumour journey | 0 |
| To be involved socially with others on a similar journey | 0 |
| To have someone to talk to | 0 |
| 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 | 0 |
| Other * | 0 |
Success of the Support Group
| Information about services available | 0 |
| Information about treatment options | 0 |
| Information about latest research | 0 |
| Someone to talk to | 0 |
| The opportunity to share my brain tumour journey | 0 |
| The opportunity to hear about other peoples brain tumour journey | 0 |
| It has provided an understanding social setting | 0 |
| 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 | 0 |
| 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 | 0 |
| 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 |
HOW WAS TREATMENT PAID FOR
| Public Patient | 0 |
| Private Health Insurance | 0 |
| Privately Funded | 0 |
| Not Answered | 0 |
Financial Impact – Private Insurance
| Less than $10,000 | 0 |
| $10,000 – $20,000 | 0 |
| $20,000 – $40,000 | 0 |
| $40,000 – $60,000 | 0 |
| $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 (Private Insurance): $0
Financial impact of treatment
| Less than $10,000 | 0 |
| $10,000 – $20,000 | 0 |
| $20,000 – $40,000 | 0 |
| $40,000 – $60,000 | 0 |
| $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 |
| Not answered | 0 |
Total Estimated Financial Impact: $0
Financial Impact – Public Patient
| Less than $10,000 | 0 |
| $10,000 – $20,000 | 0 |
| $20,000 – $40,000 | 0 |
| $40,000 – $60,000 | 0 |
| $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 (Public Patient): $0
Estimated Loss of Income *
| Less than $10,000 | 0 |
| $10,000 – $20,000 | 0 |
| $20,000 – $40,000 | 0 |
| $40,000 – $60,000 | 0 |
| $60,000 – $80,000 | 0 |
| $80,000 – $100,000 | 0 |
| $100,000 – $200,000 | 0 |
| More than $200,000 | 0 |
| I’m not sure | 0 |
| I’d rather not say | 0 |
| Not answered | 0 |
Total Estimated Loss of Income: $0
Financial Impact – Privately Funded
| Less than $10,000 | 0 |
| $10,000 – $20,000 | 0 |
| $20,000 – $40,000 | 0 |
| $40,000 – $60,000 | 0 |
| $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): $0
Your expectations following treatment
| Much Better | 0 |
| Somewhat Better | 0 |
| Somewhat Worse | 0 |
| Too Early to Tell | 0 |
| Much Worse | 0 |
| Not Answered | 0 |
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 | 0 |
OVERALL FEELING ABOUT ONGOING JOURNEY (grouped by Tumour Profile):
No Answer Provided: 0
Malignant Tumour
Total: 0
| Optimistic | 0 |
| Pessimistic | 0 |
| Too Early to Tell | 0 |
| Not Sure | 0 |
Benign Tumour
Total: 0
| Optimistic | 0 |
| Pessimistic | 0 |
| Too Early to Tell | 0 |
| Not Sure | 0 |
To be determined
Total: 0
| Optimistic | 0 |
| Pessimistic | 0 |
| Too Early to Tell | 0 |
| Not Sure | 0 |
Don’t Know
Total: 0
| Optimistic | 0 |
| Pessimistic | 0 |
| Too Early to Tell | 0 |
| Not Sure | 0 |
OVERALL FEELING ABOUT ONGOING JOURNEY (grouped by Feeling of Isolation):
No Answer Provided: 0
Not Feeling Isolated
Total: 0
| Optimistic | 0 |
| Pessimistic | 0 |
| Too Early to Tell | 0 |
| Not Sure | 0 |
Feeling Isolated
Total: 0
| Optimistic | 0 |
| Pessimistic | 0 |
| Too Early to Tell | 0 |
| Not Sure | 0 |
Not Sure
Total: 0
| Optimistic | 0 |
| Pessimistic | 0 |
| Too Early to Tell | 0 |
| Not Sure | 0 |
OVERALL IMPRESSIONS (LENGTH)
| It’s too long | 0 |
| It’s not long enough | 0 |
| It’s about the right length | 0 |
| I don’t know | 0 |
OVERALL IMPRESSIONS (DETAIL)
| It’s too detailed | 0 |
| It’s not detailed enough | 0 |
| It has about the right amount of detail | 0 |
| I don’t know | 0 |
LIKELIHOOD TO PARTICIPATE
| Definitely | 0 |
| Probably | 0 |
| Not Sure | 0 |
| Probably Not | 0 |
| Definitely Not | 0 |
| Not answered | 0 |