Patient Perspective A place for brain tumour patients & carers to create their own journal, tell us about their journey and provide valuable information in the support of the brain tumour community. An ititiative of Brain Tumour Alliance Australia (BTAA) 2018 Step 1 of 9 - Introduction 0% Important InformationThe information you enter into Patient Perspective is not a substitute for your medical records. To access your medical records it's recommended that you consult your doctor. All questions are structured from the patients point of view, however they can equally be answered by a carer or family member. Estimated Completion Times: 10-15 minutes (providing small number of responses) 30-45 minutes (all responses, depending how extensive your responses are) Most fields are optional. You may skip through fields that you do not wish to, or are unable to respond to, or that are not relevant to you. Mandatory fields are marked (*). Use the "Save and Continue Later" button to return to complete Patient Perspective at another time. The last section of the survey provides an opportunity for you to provide us with feedback and suggestions about how we can make Patient Perspective better. Once you have completed the survey a summary report of the information you have provided will be sent to your email address. Patient Perspective also works well on a mobile phone if you want to complete it while away from your computer.Estimated Completion Times: 5-10 minutes (providing small number of responses) 25-30 minutes (all responses, depending how extensive your responses are)You may skip through fields that you do not wish to, or are unable to, respond to. Most fields are optional. Mandatory fields are marked (*).Use the "Save and Continue Later" button to return to complete Patient Perspective at another time.BTAA Obligations & UndertakingsBTAA will not distribute information provided by any individual without the express written permission of that individual but may use aggregated summary information to create summary reports and make decisions as to the feasibility of developing Patient Perspective further. Our privacy provisions regarding the information is provided on our website at https://www.btaa.org.au/page/2/privacy-policy.Terms & Conditions of UseAs part of the Patient Perspective Feasibility User Group you agree that you are providing information about your brain tumour journey as part of a Patient Perspective feasibility study. You also consent to the information, feedback and comments that you provide being used by BTAA in order to determine the feasibility of proceeding with product implementation. Agree to Terms of Use*Please agree to the Terms & Conditions of Use and click on the "Next" button to proceed with Patient Perspective.I AgreeI do not Agree Personal Details* Mandatory FieldName* First Last Gender*MaleFemalePrefer Not to AnswerEmail Address*A Summary of the information you provide will be sent to your email address. PostcodeYour postcode will help us provide you with support group connections?Patient, Carer, Family Member*Are you a patient, carer or family member? PatientCarerFamily Member Profile of your Brain Tumour* Mandatory FieldType of Brain TumourGliomaAstrocytomaGlioblastoma Multiforme (GBM)GlialsarcomaMeningiomaPetroclival MeningiomaOligodendrogliomaNeurofibromatosisPituitary AdenomaAcoustic NeuromaHaemangioblastomaMedulloblastoma(DIPG) - Diffuse Intrinsic Pontine GliomaEpendymomaI Don't KnowProfile of TumourMalignantBenignDon't knowTo be determinedGrade of TumourGrade 1Grade 2Grade 3Grade 4Not ApplicableNot SurePrimary or Secondary TumourIs your tumour a primary or secondary tumour?PrimarySecondaryI Don't KnowSymptomsWhat were the symptoms that led to your brain tumour diagnosis? (You can choose more than one) Seizures Headaches Vertigo Dizziness Nausea Depression Confusion Anxiety Problems with Speech Lack of Sleep Blurred vision Mood swings Memory Loss An accident Other * Other SymptomsList other symptoms leading to your diagnosis. Date of DiagnosisWhen were you first diagnosed with a brain tumour? An approximate date is ok.Day12345678910111213141516171819202122232425262728293031Month123456789101112Year20262025202420232022202120202019201820172016201520142013201220112010200920082007200620052004200320022001200019991998199719961995199419931992199119901989198819871986198519841983198219811980197919781977197619751974197319721971197019691968196719661965196419631962196119601959195819571956195519541953195219511950194919481947194619451944194319421941194019391938193719361935193419331932193119301929192819271926192519241923192219211920Age at DiagnosisAt what age (approx) were you diagnosed?0-1415-1819-2425-3940-64> 64I'd rather not sayPost-Diagnosis Pre-Surgery TreatmentWhat treatments, if any, did you receive between diagnosis and surgery? (You can choose more than one). Radiotherapy Chemotherapy Clinical Trial Alternative Medicine None Other * Name of Clinical TrialList the names of the clinical trials you've taken part in. Name of Alternative MedicinePost Diagnosis Pre Surgery Treatment (Other)List other post diagnosis pre-surgery treatment Surgery*Have you had surgery?YesNoTime between diagnosis and surgeryWhat was the period of time between your brain tumour diagnosis and surgery?Less than 24 hours24-72 hours1-2 weeks3-6 weeks2-6 months6-12 months1-2 Years> 2 YearsNumber of surgeriesHow many surgeries have you had?OneTwoMore than twoDate of most recent surgeryWhen was your most recent brain tumour surgery? An approximate date is ok.Day12345678910111213141516171819202122232425262728293031Month123456789101112Year20262025202420232022202120202019201820172016201520142013201220112010200920082007200620052004200320022001200019991998199719961995199419931992199119901989198819871986198519841983198219811980197919781977197619751974197319721971197019691968196719661965196419631962196119601959195819571956195519541953195219511950194919481947194619451944194319421941194019391938193719361935193419331932193119301929192819271926192519241923192219211920Date of previous surgeryWhen was your most previous brain tumour surgery? An approximate date is ok.Day12345678910111213141516171819202122232425262728293031Month123456789101112Year20262025202420232022202120202019201820172016201520142013201220112010200920082007200620052004200320022001200019991998199719961995199419931992199119901989198819871986198519841983198219811980197919781977197619751974197319721971197019691968196719661965196419631962196119601959195819571956195519541953195219511950194919481947194619451944194319421941194019391938193719361935193419331932193119301929192819271926192519241923192219211920Previous SurgeryType of previous surgery. Reason for not having surgeryThe surgeon wants to monitor the tumour for the momentMy doctor has advised that surgery is not requiredMy surgeon has deemed my tumour inoperableI am scared of surgeryI am seeking alternative treatmentReason for Tumour being deemed InoperableWhat is the reason given for the tumour being deemed inoperable?Danger of central nervous system damageLocation of tumourDanger of hemorrhageOutcome of tumour diagnosisThe patient has diedWe are receiving alternative treatmentWe are seeking other medical opinions Quality & Type of Care* Mandatory FieldSurgeonSurgeon OptionsTell us about the options you pursued in settling on your surgeon.I sought a second opinion but stayed with my initial surgeonI sought a second opinion and went with that opinionI sought more than 2 opinionsI didn't feel the need to ask for a second opinionNot applicableQuality of Care (Surgeon/Surgery)SatisfiedNeutralUnsatisfiedAdd Feedback: Quality of Surgeon CareYesNoSurgeon's Quality of CareWhat areas of your surgeon’s treatment were you happy with? (You can choose more than one). My surgeon communicated clearly with me My surgeon ensured that I was aware of my options My surgeon was thorough in examining me My surgeon talked through the diagnosis with me My surgeon was honest with me when talking about my prognosis My surgeon empathised with my concerns My surgeon gave me confidence My surgeon followed through with me post-surgery My surgeon liaised constantly with my G.P. My surgeon completed the planned surgery Other * Surgeon's Quality of Care (Other)Other areas regarding your surgeon’s care you are happy with. Improvements in Surgeon's Quality of CareIs there any area of concern, or improvement, about your surgeon’s care? Better communication as to available options My surgeon could have listened to my concerns more My surgeon didn't seem to empathise with me My surgeon was very expensive My surgeon was aggressive in approach Other * Improvements in Surgeon's Quality of Care (Other)Any other area of concern, or improvement in your surgeon’s care? OncologistQuality of Care (Oncologist)Are you satisfied with the quality of care from your OncologistSatisfiedNeutralUnsatisfiedAdd Feedback: Quality of Oncologist CareYesNoAreas of Quality of Care (Oncologist)What are the areas of your Oncologist's care were you happy with? (You can choose more than one). My Oncologist communicated honestly with me My Oncologist ensured that I was aware of my options My Oncologist was honest with me about my prognosis My Oncologist empathised with my concerns My Oncologist gave me confidence Other * Areas of Quality of Care (Oncologist) OtherAreas of Improvement in Quality of Care (Oncologist)What are the areas of improvement in quality of care from your Oncologist? (You can choose more than one). Clear communication as to the treatment being undertaken Offering alternatives to current treatment Communicating confidence in the treatment being undertaken The Oncologist did not display the amount of empathy or understanding required Other * Areas of Improvement in Quality of Care (Oncologist) - OtherGeneral PractitionerQuality of Care (General Practitioner)SatisfiedNeutralUnsatisfiedAdd Feedback: Quality of G.P. CareYesNoAreas of satisfaction with Quality of Care (General Practitioner)In what areas did your G.P. meet or exceed your expectations in treating you? (You can choose more than one). My G.P. communicated with me through the whole process My G.P. visited me in hospital My G.P. was familiar with managing brain tumours My G.P. liaised constantly with my surgeon My G.P. was reassuring throughout the process My G.P. gave me confidence in the process Other * Areas of satisfaction in Quality of Care (General Practitioner) - Other Areas of Improvement in Quality of Care (General Practitioner)If you don't feel your G.P offered you the best possible care, what areas of care were lacking or could be improved upon? (You can choose more than one). A lack of information about alternative treatments Little or no knowledge of brain tumours Little or no follow up upon diagnosis My G.P. initially misdiagnosed my brain tumour as something else Slowness to recognise brain tumour symtoms Other * Areas of Improvements in Quality of Care (General Practitioner) - Other HospitalHospitalWhere was your surgery undertaken? (optional)RPARoyal North ShoreNorth Shore PrivateSt. VincentsPrince of WalesRoyal BrisbaneMelbourneCanberraOther *I'd rather not sayHospital (Other)Travel to HospitalDid you have to travel from a regional or remote centre for your surgery?YesNoRegional or Remote Centre Travel IssuesWhat were the issues, or problems, you encountered in travelling from a Regional or Remote centre. Obtaining accommodation near the hospital The cost of travel and accommodation Organising transport to and from hospital Not having support networks nearby Leaving family members behind in my home town Communications difficulties Other * Regional or Remote Centre Travel Issues (Other)List other regional or remote centre travel issues that you encountered. Public or Private HospitalWas your surgery in a public or private hospital?Public HospitalPrivate HospitalI Don't KnowHealth InsuranceWere you in hospital as a public patient or did you use private health insurance?Public PatientPrivate Health InsurancePrivately FundedPublically Funded (eg. GoFundMe)Length of SurgeryHow long was your surgery?< 2 Hours2-4 Hours4-6 Hours6-8 Hours10-12 Hours> 12 HoursNot SurePost Operative ComplicationsDid you have any post operative complications? Stroke Blood Clot Paralysis Infection Other * Post Operative Complications (Other)List any other post operative complications Post Operative ImpairmentDid you have any post operative Impairment? Inability to Speak Inability to Swallow Inability to Walk Hemiplegia Other * Post Operative Impairment (Other)List other post operative impairments. Post Operative Hospital CareWhat form did your post-operative hospital care take? (You can choose more than one). Physiotherapy Occupational Therapy Speech Therapy Neuro-Psychology None Other * Post Operative Hospital Care (Other)List other post operative hospital care. Effectivess of PhysiotherapyWas your hospital physiotherapy effective?SatisfiedNeutralUnsatisfiedEffectiveness of Occupational TherapyWas your hospital occupational therapy effective?SatisfiedNeutralUnsatisfiedEffectiveness of Speech TherapyWas your hospital speech therapy effective?SatisfiedNeutralUnsatisfiedEffectiveness of NeuropsychologyWas your hospital neuropyschology effective?SatisfiedNeutralUnsatisfiedEffectiveness of Other TherapyWas your other hospital therapy effective?SatisfiedNeutralUnsatisfiedStandard of Hospital CareAre you satisfied with the standard of hospital care?SatisfiedNeutralUnsatisfiedAdd Feedback: Quality of Hospital CareYesNoPositive Aspects - Quality of Hospital CareWhat aspects of Hospital Quality of Care were you pleased with? (You can choose more than one). Nursing staff were attentive to my needs Nursing staff were prompt in dealing with me Nursing staff understood my deficits and compensated for them Overall, nursing staff provided adequate care once they understood my situation The therapists were attentive to my requirements Other * Positive Aspects - Quality of Hospital Care (Other) Improvements in Quality of Hospital CareWhat areas of your hospital care could have been better? (You can choose more than one). Nursing staff need to more aware of the debilitating effects of post brain tumour surgery Nursing staff took too long to attend to me when I needed to go to the toilet Nursing staff did not communicate effectively enough with my family Nursing staff needed to contact my family more promptly and with better information when an incident occurred The transition from ICU into the General Ward was not handled well There was very often not enough nursing staff to meet my needs Other * Improvements in Quality of Hospital Care (Other) Duration of HospitalisationOvernight2-3 days3-7 days1-2 weeks3-4 weeks5-6 weeks6-8 weeks9-12 weeks> 12 weeksPost Hospital Treatment & RehabilitationType of Post Hospital TreatmentList your post hospital treatment you had. (You can choose more than one). Radiotherapy Stereotactic Radiotherapy Chemotherapy Proton Beam Therapy No post surgical therapy Other * Type of Post Hospital Treatment (Other)List post other post hospital treatments Radioherapy Side-EffectsList any side effects to your radiotherapy treatment. Chemotherapy Side-EffectsList any side effects to your chemotherapy treatment. Stereotactic Radiotherapy Side-EffectsList any side effects to your Stereotactic Radiotherapy treatment. Proton Beam Therapy Side-EffectsList any side effects to your Proton Beam Therapy treatment. Duration of Post Hospital TreatmentHow long did your post hospital treatment go for?One Treatment1 week2-4 weeks4-6 weeks2-6 months6-12 months1-2 years> 2 yearsNot ApplicableSatisfaction with Post Hospital TreatmentAre you satisfied with your post surgical treatment? SatisfiedNeutralUnsatisfiedPost Hospital Rehabilitation ServicesDescribe the post hospital rehabilitation you received? (You can choose more than one). Physiotherapy Aquatherapy Occupational therapy Speech therapy Massage None Other * Post Hospital Rehabilitation Services (Other)Satisfaction with Post Hospital RehabilitationAre you satisfied with your post hospital rehabilitation?SatisfiedNeutralUnsatisfiedAdd Feedback: Quality of Post Hospitalisation CareYesNoQuality of Post Hospital Rehabilitation - Postive AspectsWhat were the positive aspects of your post hospital care? Clear communication as to the objectives I understood the care objectives The health professionals were patient with me Other * Quality of Post Hospital Rehabilitation - Postive Aspects (Other)Quality of Post Hospital Rehabilitation - Areas for improvement There could be more consultation with me in terms of my concerns Better attention paid to investigating other treatment options rather than going through the motions Other * Quality of Post Hospital Rehabilitation - Areas for improvement (Other)Good Communication of Post Hospital RehabilitationDid the post hospital care practitioner communicate clearly the intention of the rehabilitation?YesNoNot SureRehabilitation Services (Other)Satisfaction with Post Hospital Rehabilitation ServicesSatisfiedNeutralUnsatisfiedImprovements in Standard of Rehabilitation ServicesHow could the rehabilitation services be improved? More attention could have been paid to other aspects of my rehabilitation that needed attention. Not Applicable Other * Improvements in Standard of Rehabilitation Services (Other)Improvements in the Standard of Information ProvidedHow could the standard of information provided be improved? Follow-up procedures and treatments needs to be better communicated Other * Standard of Information (Comments)Any comments about the standard of information provided (optional)ResponsivenessAre you satisfied with the responsiveness of health professionals to questions raised during your treatment?SatisfiedNeutralUnsatisfiedOther Treatments/ServicesTreatments Outside AustraliaList any treatments that you have received outside Australia, and in which country you have received them. CT Scan & MRICan you say how many CT Scans & MRI's (combined) you have had?None1-23-45-6> 6Not SureOther TreatmentsWhat other alternate treatments to surgery have you had? Radiotherapy Stereotactic Radiotherapy Chemotherapy Proton Beam Therapy Other * Satisfaction with Other TreatmentsHave you been satisfied with these alternate treatments?SatisfiedNeutralUnsatisfiedMedicationsWhat medications do you take? (You can choose more than one). Temozolomide Dexemethazone Avastin Warfarin Other * MedicationsList any other medications that you may take. Care Co-OrdinatorDo you think that the provision of a brain tumour care co-ordinator may have helped you in dealing with your brain tumour?YesNoI Don't KnowInformation about Clinical TrialsDid you qualify or were you informed of the possibility of being involved in a clinical trial?Yes, I participated in a clinical trialYes, I was informed about clinical trials but did not participateNo, I was not informed of clinical trialsI didn't qualify for clinical trialsI had no knowledge of clinical trialsI had no need of a clinical trialName of Clinical TrialList the names of the clinical trials you've taken part in. Notification of Clinical TrialsWould you like to be informed about clinical trials that may be relevant to you?YesNoImmunotherapyHave you had any immunotherapy treatment?YesNoList of Immunotherapy TreatmentsList the immunotherapy treatments you've had. Complementary TherapiesList any complimentary therapies that you have used. Complementary Therapies EffectivenessDo you feel these therapies have been helpful?YesNoDon't knowNot Applicable Quality of Life* Mandatory FieldFatigue, Sleep, Rest, ConcentrationFatigueDo you suffer from chronic fatigue or are you fatigued more since your brain tumour? Yes, I do suffer chronic fatigueYes, I do suffer increased fatigue but I am not chronically fatiguedNo, I do not suffer increased fatigueSleepAre you satisfied with the amount of sleep (rest) you get each day?YesNoAmount of SleepHow much sleep do you usually get each day?< 2 hrs per day2-4 hrs per day4-6 hrs per day6-7 hrs per day7-8 hrs per day> 8 hrs per dayQuality of SleepHow is the quality of your sleep since being treated for your brain tumour?BetterWorseAbout the SameResting during the DayHow many times a day do you need to stop what you're doing and rest, to allow your brain to recover?NoneSome days (not every day)Once a day2-3 times a dayMore than 3 times a dayEffect of FatigueIs your fatigue debilitating, or does it affect your ability to function normally? My fatigue is debilitating and prevents my ability to function normallyMy fatigue does prevent a normal lifestyle but it is not debilitatingMy fatigue is moderately debilitating but does not prevent my ability to function normallyNot ApplicableOther *Effect of Fatigue (Other)List the other effects that fatigue has on you. Concentration Level of ConcentrationTell us about your levels of concentration (You can choose more than one). I am unable to read for the length of time that I used to I have to study in smaller chunks of time I often need to excuse myself from conversations My concentration has not been affected Other * Level of Concentration (Other)BalanceBalance IssuesDo you have balance issues?Constant Balance ProblemsEvery now and thenReturned to normalI have never had balance issuesBalance Returning to NormalIf your balance has returned to normal, how long after surgery did that occur?< 1 Month1-3 Months3-6 Months6-12 Months1-2 Years> 2 YearsNot ApplicableLength of Time with Balance IssuesFor how long have had balance issues?NeverLess than a month1-6 months6-12 months1-2 yearsMore than 2 yearsNature of Balance IssuesWhat is the nature of your balance issues? (You can choose more than one). I have difficulty walking down stairs I need to stop every now and then to regain my balance I have difficulty carrying things I have difficulty getting dressed I have difficulty maintaining balance when walking I have trouble standing for long periods Other * Nature of Balance Issues (Other)List the ways your balance issues affect you. VisionDouble VisionHow often do you have double vision?I have constant double visionIt comes and goesI had double vision but it has since returned to normalI have never had double visionLength of Time with Double VisionFor how long have you had, or did you have, double vision?< Month1-6 Months6-12 Months1-2 Years> 2 YearsField of VisionTell us about other vision issues that you may have or have had. Difficulty seeing all objects in field of vision Loss of peripheral vision Images are hazy No other vision issues Other * Field of Vision (Other)SeizuresSeizuresDo you have seizures and if so, how often? Every day2 or 3 times a weekOnce a week2 or 3 times a monthOnce a monthLess than once a monthI did have them but no moreNever had seizuresLength of Time with SeizuresFor how long have you had, or did you have, seizures?< 1 Month1-6 Months6-12 Months1-2 Years> 2 YearsType of SeizuresDescribe the type of seizures you have/had. (You can choose more than one). Blacking out Spasms Involuntary movements Numbness Dilation of pupils Ringing in the ears Confusion Hallucinations Unconsciousness Staring Jerking movements Twitching Other * Type of Seizures (Other)List other types of seizues. Duration of SeizuresIf you are/were having seizures, how long do/did the seizures typically last?Less than 10 seconds10-20 seconds20-30 secondsMore than 30 secondsEffect of SeizuresAre/were your seizures debilitating, or do/did they affect your ability to function normally? They are/were debilitating and prevent(ed) my ability to function normallyThey are/were momentariy debilitating but do/did not prevent my ability to function normallyMemory LossType of Memory LossDescribe your memory loss issues resulting from your brain tumour (if any).Short Term memory lossLong Term memory lossBoth Short & Long Term memory lossNo memory loss issuesMemory Loss IssuesDescribe any memory loss issues that you may have suffered as a result of your brain tumour? (You can choose more than one). Forgetting peoples names Forgetting to do chores around the house Forgetting appointments Not remembering what day of the week it is Not remembering friends, and/or family members Other * Memory Loss Issues (Other)Length of Time with Memory LossFor how long have you been living with these memory loss issues?< 1 Month1-6 Months6-12 Months1-2 Years> 2 YearsNumbness, HemiplegiaNumbness or HemiplegiaJust my headOne of my legsOne of my armsBoth armsBoth legsBoth legs and armsHead, legs and armsNo numbnessLength of Time with Numbness or HemiplegiaFor how long have you experienced this numbess?< 1 Month1-6 Months6-12 Months1-2 Years> 2 YearsSide Effects of HemiplegiaWhat debilitating, or limiting, effects does your hemiplegia have on your quality of life? (You can choose more than one). I am unable to do as much around the house I cannot carry heavy weights I appear clumsy to other people I do not have the feel of things that I used to I have difficulty sleeping Other * Side Effects of Hemiplegia (Other)List the other side effects of your hemiplegia. Overall Effect of HemiplegiaRate the overall effect of your hemiplegia.It is debilitating and prevents my ability to function normallyIt is irritating and mildly debilitating but it does not prevent my ability to function normallyDrivingCurrently Driving a Motor VehicleAre you currently driving a motor vehicle?YesNoReturn to DrivingHave you been able to drive since surgery?Yes, I returned straight away to drivingI had to undergo a driving test prior to returning to drivingI am driving (no test required) but with conditions attachedI had to undergo a driving test but failed the testHave not driven since surgeryI do not have a driving licenseDriving RestrictionsWhat are the restrictions, or conditions on your driver's licence?No restrictionsI need to wear spectacles due to changed visionTime of day restrictionDistance restrictionReason for Failed Driving TestWhat was the reason given for your failing your driving test? (You can choose more than one). Seizures Double vision Poor peripheral vision Slow reaction time I Don't Know Reason for not DrivingI don't consider it safe at the momentI failed a driving testI don't have a driving licenseLength of Time Not DrivingFor how long were you, or have you been, not driving?< 1 Month1-6 Months6-12 Months1-2 Years> 2 YearsEffect of Not DrivingIf you are not currently driving, what effect has that had on your quality of life? (You can choose more than one). My spouse or partner has the burden of driving me around I have lost a significant degree of independence It's more difficult to get to work It's sometimes embarrassing telling people I can't drive Other * Effect of Not Driving (Other)List the other effects of not driving. ExerciseExercise FrequencyHow often are you able to exercise?Every dayOnce a week2 to 3 times a week4 to 5 times a weekOnce a month2 to 3 times a monthLess than once a monthI have chosen not to exerciseI am unable to exerciseType of ExerciseCan you tell us what type of exercise you do? (You can choose more than one). Walking Swimming Cycling Running Tennis Yoga Pilates Bowls Gardening Golf Gym Sessions Kayaking/Rowing Weight Training Other * Type of Exercise (Other)List other forms of exercise that you do. Effect of ExerciseMuch BetterSomewhat BetterAbout the SameSomewhat WorseMuch WorseNot ApplicableBenefits of ExerciseIn what areas has exercise helped, or hindered, your recovery? (You can choose more than one). It has enabled me to stay fit It has helped to clear my head of anxieties Exercise has given me another goal to work towards Other * Benefits of Exercise (Other)List the other benefits of exercise. Reasons For Not ExercisingIf you choose not to, or are unable, to exercise, can you say why that is? I would like to exercise but find it physically difficult at the moment I find it difficult to motivate myself to exercise I'd rather direct my energies to other aspects of my recovery Other * Reasons For Not Exercising (Other)Information on ExerciseWould receiving information about the benefits of exercise be useful for you in your recovery?YesNoNot SureOther Physical & Emotional ImpactsDisorientationDo you sometimes feel disoriented when in public places, or in crowds of people?YesNoNot sureTime AloneDo you sometimes feel the need to be on your own to rest and re-calibrate your brain?Every day2-3 times a weekOnce a weekOnce a monthNoMost Profound Impact (Physical and Mental Wellbeing)What has been the most profound impact to your physical and mental well being since your brain tumour surgery? (You can choose more than one.) Chronic Fatigue Seizures Loss of Balance Double Vision Memory Loss Depression Headaches Stress Other * Most Profound Impact (Physical and Mental Wellbeing - Other)List other profound impacts on your physical & mental well being. Most Profound Impact (Overall Quality of Life)What has been the most profound impact to your quality of life since your brain tumour surgery? (You can choose more than one.) Loss of Income (ability to work) Loss of independence Alienation from family/friends Loss of physical mobility Loss of motivation There has been no impact on my quality of life Other * Most Profound Impact (Overall Quality of Life - Other)List other profound impacts on your quality of life. Impact on Social LifeDescribe the impact your brain tumour journey has had on your social engagement. (You can choose more than one). I have become more socially isolated I have narrowed my range of friendships Some friends have distanced themselves from me Some friends have become closer to me I have become more socially outgoing My social engagement has remained much the same Other * Impact on Social Life (Other)List other impacts on your social life Discussing my JourneyDo you feel comfortable talking about your brain tumour journey or do you prefer to keep things to yourself?I'm comfortable talking about it because it raises awarenessI'm not comfortable talking about itI would prefer not to talk about it but I'm comfortable talking about it when askedI am careful about who I talk to about my journeyI'm not sureDiscussing my Journey (Other)List other aspects of discussing your journey. Complimentary TherapiesTell us what complimentary therapies have assisted you to improve your quality of life. (You can choose more than one) Exercise Meditation Yoga Pilates Diet/Nutrition Accupuncture Massage Physiotherapy Reflexology Hypnotherapy Counselling Other * Complimentary Therapies (Other)List other complimentary therapies that you use. Financial ImpactFinancial ImpactCan you tell us what sort of financial impact your brain tumour has had on you?A very significant impactA somewhat significant impactA minor impactI'm not sureNo impactI'd rather not sayExtent of Financial ImpactAre you able to say how much your brain tumour treatment has cost you to this point?Less than $10,000$10,000 - $20,000$20,000 - $40,000$40-000 - $60,000$60,000 - $80,000$80,000 - $100,000More than $100,000I'm not sureI'd rather not sayCost Breakdown of Financial ImpactCan you provide a cost breakdown of your treatments? Surgeon Hosptial Rehab Other * Surgeon AmountHospital AmountRehab AmountOther Expense AmountTotal AmountExpectationsExpectationsDo you feel you are better for having had your surgery?Much BetterSomewhat BetterAbout the SameSomewhat WorseMuch WorseNot ApplicableOverall Feeling about Recovery, Treatment and Ongoing JourneyOn the whole, are you optimistic about your brain tumour journey?OptimisticPessimisticNot SureToo Early to TellState of Health/Recovery Rating (out of 10)What rating would you give your overall state of health and recovery from your brain tumour so far?12345678910 Support Network* Mandatory FieldCarer ProfileInitial Family/Friends SupportWho provided the initial support when you were initially diagnosed?I was on my ownMy partner or spouse accompanied me to all of my appointmentsA parent or guardian accompanied me to all of my appointmentsMy partner or spouse accompanied me to most or some of my appointmentsA friend accompanied me to all of my appointmentsA friend accompanied me to most or some of my appointmentsCarer InformationTell us about your Carer(s)I have a Full-Time paid CarerMy partner or spouse is my CarerA parent is my primary carerA sibling is my primary carerI have no CarerMultiple friends or family fulfill Carer responsiblitiesI had a carer but no longer need oneI do not need a CarerWho was your Carer?ParentPartner/SpouseSiblingGuardianCarer WorkloadThe number of hours per week that you need, or needed, a Carer.1-2 hrs per week2-5 hrs per week6-10 hrs per week10-20 hrs per week> 20 hrs per weekNot applicableCarer ActivitesTell us the activities your Carer helps, or helped, you with. (You can choose more than one option.) Transport Shopping Dressing Assisting with Financial Transactions House Cleaning Cooking Attending Medical Appointments Other * Carer Activities (Other)List other Carer activities Carer ImpactWhat have been the biggest areas of impact on your carer? Inability to cope with diagnosis Increased domestic workload Loss of income Stress of the financial impact Having to give up some, or all, work to care for me Stress of the uncertainty about my prognosis Stress of dealing with family from the patient becoming priority Periods of depression and/or isolation Other * Carer Impact (Other)List the other areas of carer impact. Family & FriendsFamily & Friends SupportAre you satisfied with the level of support you have received from family and friends?SatisfiedNeutralUnsatisfiedAdd Feedback: Family/Friends SupportYesNoMain areas of Family/Friends Support Provided (or not provided))What are the main areas of support that family and friends have provided? (You can choose more than one). Making allowances for changes in behaviour Making allowances for diminished ability to contribute to household Assisting with tasks that otherwise I would complete Being able to communicate honestly with family and friends Recognising that I am not completely recovered Providing financial support I have been alienated from my family Some family members think that I am over-reacting and malingering Some friends think that I am over-reacting and malingering Other * Main areas of Family/Friends Support Provided or not Provided(Other)List other areas of family & friend support Areas of Family Support Important to YouWhat are the areas of family support that are important to you? (You can choose more than one). Being able, if required, to advocate on my behalf Understanding personality changes that may occur Being able to assist me with various tasks Being prepared to take up slack at home Being able to communicate honestly with family and friends Other * Areas of Family Support Important to You (Other)List other areas of family & friends support important to you. Support ServicesGovernment Support ServicesHave you been satisfied with the level and responsiveness of government support services?SatisfiedNeutralUnsatisfiedGovernment Support AssistanceList government support services that have assisted you during your journey. Government Support RoadblocksList the government support roadblocks that you have encountered during your brain tumour journey. Click on the + symbol to add to your list. Ongoing SupportWhat sort of support services do you feel could be made more available in your ongoing brain tumour journey? (You can choose more than one) Better counselling services More accessible support groups Better information from government agencies Availability of a Care Coordinator Not Applicable Other * Ongoing Support (Other)List other ongoing support you would like to have. Support ServicesWhat support services (if any) did health care professionals provide? (You can choose more than one). Brain Tumour Alliance Australia Cure Brain Cancer Foundation Local Rehabilitation Hospital Local Counselling Service None Other * Support Services (Other)List other support services provided Support Group MembershipMembership of a Support GroupAre you currently a member of a support group?YesNoNot SureAdd Feedback: Support Group MembershipYesNoReason(s) for Support Group MembershipWhat are the main reasons for attending a support group? (You can choose more than one) To get information about services available To get information about treatment options To get information about the latest research To share the story of my own brain tumour journey To be involved socially with others on a similar journey To have someone to talk to To have someone to help with some day to day living tasks eg. transport To offer my support to other brain tumour patients and carers Other * Reason(s) for Support Group Membership (Other)List the other reasons for your support group membership. Support Group Success or FailureIn which areas has the support group been helpful to you in your brain tumour journey? (You can choose more than one). Information about services available Information about treatment options Information about latest research Someone to talk to The opportunity to share my brain tumour journey It has provided an understanding social setting Someone to help with some day to day living tasks eg. transport I have been able to offer support to other brain tumour patients and carers It has not really helped at all Other * Support Group Success or Failure (Other)List the other reasons for your support group success or failure. Support Group Membership InformationIf you are currently not part of a support group would you like to receive information about support groups near you?YesNoNot Applicable Brain Tumour Awareness* Mandatory FieldAwareness Prior to DiagnosisHow aware of brain tumours prior to your diagnosis?I was very aware of brain tumoursI was aware (I have a family member with a brain tumour)I was aware but had no informationI was not aware at all of brain tumoursInitial Diagnosis & ResearchTell us what you did to research your brain tumour upon initial diagnosis. (You can choose more than one). I consulted my G.P I contacted BTAA I Googled "brain tumours" I spoke to other health professionals I discussed it with my family Other * Initial diagnosis & research (Other)Your G.P's Awareness of Brain TumoursHow knowledgeable was your G.P. about brain tumours when you were diagnosed.My G.P. was well aware of brain tumours but had never before had a brain tumour patientMy G.P. had previous experience with brain tumour patients and addressed it straight awayI was the first brain tumour patient my G.P. came acrossMy G.P. initially thought my brain tumour was something else but did eventually arrive at a correct diagnosisI do not knowEngagement with the Brain Tumour CommunityYes, I am actively involved with a brain tumour support groupNo, I have not joined a brain tumour support groupI have attended a support group but I am not currently involved Work Situation* Mandatory FieldPrevious Hours Work per WeekHow many hours per week did you work prior to your brain tumour?Less than 1010-2020-40> 40StudentI did not workRetiredWork SituationHave you been able to return to work?YesNoNot ApplicableLength of Time Off WorkIf you have had time off work, for how long were you/have you been off work?Less than a Month1-3 Months3-6 Months6-12 Months12-18 Months18 Months - 2 YearsMore than 2 YearsCurrent Work ArrangementsEmployed Full-TimeEmployed Part-TimeSelf-employedNot employed but looking for workNot employed and not looking for workHomemakerDoing volunteer workRetiredStudentPrefer Not to AnswerI have not been able to return to workVoluntary & Unpaid WorkList any volunteer or unpaid work that you do. Current Hours Work Per WeekHow many hours per week do you currently work?Less than 1010-2020-40> 40StudentI do not workRetiredEmployer RelationshipHas your employer been supportive of your situation by providing assistance during your brain tumour journey?YesNoNot ApplicableEmployer SupportList employer support that you have received during your journey. Employer RoadblocksList employer roadblocks that you have experienced during your journey. Brain Tumour News & InformationBrain Tumour News & InformationWhat resources could BTAA provide so that you can stay informed about your brain tumour journey? (You can choose more than one). Support Groups Newsletters or Publications Up to date information on the BTAA website Public Forums Applications like Patient Perspective Other * Brain Tumour News & Information (Other)List other resources that are important to you. Website FeaturesWhat are some important items that could be featured on the BTAA website that would assist you on your brain tumour journey? Up to date information on brain tumour research Stories from other people on the brain tumour journey Support groups close to me Events that I can support Other * Website features (Other)List other features of our website that might assist you. User Group Feedback & CommentsThe Most Important Patient Perspective Components to YouList the most important components for you to include in Patient Perspective. (You can add up to to 10 suggestions by clicking on the + sign.) RelevancyCan you tell us how relevant you found Patient Perspective?Very RelevantMostly RelevantPartly RelevantNot Really RelevantNot Relevant at AllDon't KnowMaking Patient Perspective more relevantHow might we make Patient Perspective more relevant? (Optional) Overall Impressions (Length)We are interested in your overall impression of Patient Perspective's length.It's too longIt's not long enoughIt's about the right lengthI don't knowOverall Impressions (Detail)We are interested in your overall impression of Patient Perspective's detail.It's too detailedIt's not detailed enoughIt has about the right amount of detailI don't knowLiklehood to ParticipateHow likely are you to participate in Patient Perspective if we make it available across the broader brain tumour community?DefinitelyProbablyNot SureProbably NotDefinitely NotComments about the presentation of Patient PerspectiveAdd comments and suggestions about how you would like to see Patient Perspective presented, what we could put in or what we should take out, or how it could be improved. NameThis field is for validation purposes and should be left unchanged.
