This is the place for BTAA Committee members to provide feedback, post ideas, and make comments about the Patient Perspective Form, layout, content and order. Comments are in descending date order.
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. What could be better, other than good coffee in the morning, comfortable non-slip gumboots, peace in the Middle East, 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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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.
Give options for longer time between diagnosis and surgery or an other field you can fill in. For some it is years.
Good idea. There is now a > 2 years option
Do not need so many questions on GPs.
There is just the one question pertaining to GPs that I can see and the user has the option of adding comments on their GP.
Ask about whether public or private patient.
Good point. Any expansion on that? Although if they tell us at which hospital they had surgery that would tell us. But good to deliniate with a Public/Private option.
Peope can be public patients in a private hospital. I think we could ask if they held private insurance. Ask also if they elected to be treated as a private patient. And also allow a comments field on the pilot test for this any perhaps. I am interested in those that do Go Fund me for treatment with Charlie or in Mexico etc
Excellent point, if we can convince people to provide that information.
Post op care needs a none category.
Done
Age and hours per week scale needs to be fixed, ie 0-10, 10-20 won’t work. 0-10, 11-20 etc. but even better go with the same age scale as the AIHW use.
Life stage
Children are 0-14.
adolescents are 15-18
Young adults 19-24
Adults 25-64
Older adults 65 and over.
Up to Young Adults the grouping is good – 25-65 should be into more groups eg. 25-35, 36-50,51-60,61-70 >70
Just use a standard age breakdown for this too. Suggest one 25- 64 and one over 65 as they are in the aged care system and not eligible for NDIS. Or if you go finer 25-39 and one 40-64.
Changed as per your suggestion. 0-14, 15-18, 19-24, 25-39, 40-64, >64
Do we want gender? AIHW report gender in their report.
Good idea
Need to prove more about how they made decisions about treatment.
Not sure of the question.
What info do they need on diagnosis. Sorry, need to PROBE not PROVE more about how they made decisions about treatment. Not sure of the question or category but interested in what factors led to them deciding on their treatment. Maybe it links to the second and subsequent opinion question.
Financial questions, cost you or your family…
Ask for some breakdown on financial – for surgery or loss of work income?
Worth some thought but the question is: are people prepared to provide this information, or even know it. Are we breaking it down by surgeon, hospital, anesthetist, rehab?
I’ve added a cost breakdown – optional of course.
Carer, is or was. It will have changed over time.
Employer needs to specify whether employer at the time, or current employer. Some have had some supportive and some not.
Could you help me with how that might be laid out?
Maybe an have you Ever or Overall
HISTOLOGY. At least by brain, meninges, spinal cord, cranial nerves and other part of cans and endocrine glands of the cranial cavity. see fig 2.4
Do we want site of tumour? AIHW report this on page 9’and 10 of their report to the Senate.
Suggestions?
cerebrum, except lobes and ventricles (ICD-10 code C71.0)—processes sensory and
motor information
frontal lobe (C71.1)—controls decision-making, planning, and movement
temporal lobe (C71.2)—controls memory, hearing and language
parietal lobe (C71.3)—processes sensory information
occipital lobe (C71.4)—processes visual information
cerebral ventricle (C71.5)—cavities filled with cerebrospinal fluid, the liquid that bathes
and protects the brain and CNS
cerebellum (C71.6)—processes multiple types of sensory information to allow skilled and
coordinated movement
brain stem (C71.7)—controls the basic functions necessary for survival, breathing,
eating, and movement (Porth 2007)
overlapping lesion of brain (used when the tumour overlaps two or more of the above
sub-sites and the point of origin cannot be determined) (C71.8)
brain, sub-site unspecified (used when information about the tumour is unavailable)
Some get more than second opinions, get more.
I’ve updated it.
Put the support stuff earlier.
Valid point. Where might be a good place to put it?
Do we really need their name and email? Will mean their answers are more guarded.
We do need the email address if the member is going to be able to interrogate the app at a later date because they will need an email address and password to log in.
Could we have them create an 8 character unique identifier which they create at the beginning of the survey (which could be emailed to them with their response they don’t need to memorise it)
eg –
Example: Your father’s first name is John. Your mother’s name is Karen. Your mother was born on the 21 st of April. Your age is 25. Your code identifier would be.
J O (a) What are the first 2 letters of your father’s first name?
E N (b) What are the last 2 letters of your mother’s first name?
2 1 (c) What is the day (of the month) your mother born on?
2 5 (d) What is your age
Resulting unique identifier = JONE2125
With a notice similar to this?
You are reminded that your details
i) will NOT be used for any other purpose,
ii) will be recorded in a data file separate to that in which your responses are stored to protect your anonymity,
iii) will NOT be retained by the researchers once the study is complete.which would not be recorded with their
to reassure people of the security of their data?
I think, whilst this is a great idea for say, corporate types, for brain tumour patients it might be a step too far. A password and email I think would be fine. Most people are used to that format, it’s secure enough. My theory is that they would not bother if they had to go through this sort of process. That’s not to say it’s not an option down the road.
If Patient Perspective is considered too long can we get suggestions as to which elements are taken out
Piping questions may help reduce the length of time to fill in the survey.
Ie Selecting no carer required skips all further questions about carers…
That’s a good suggestion although I think we’ll wait till we get feedback from our User Group #1. At the moment it’s simple enough, you can just skip the question(s).
I’ll muck around with that idea Julia and see if it improves things. It’s a great idea. Leave it with me.
I had already applied conditional logic to Complimentary Therapies, Seizures, Hemiplegia and Financial Impact and have since applied the same conditional logic to the Balance & Carer section, as per your suggestion. Top shelf observations.
Going backwards mean you lose your info I found.,make it clear how to move back and forward. I lost my content cause I did not use Previous and Next.
You’re right, going backwards or forwards using your browser buttons won’t save the work. The Previous & Next buttons do that though. Much better to use the Previous/Next buttons, no difference in speed.
It took me 35 minutes to fill it out with basic details using my phone (Great phone compatibility Steve!) on the bus.
WordPress works brilliantly on mobile. It’s definitely designed with mobile in mind because there will be many people who will be sitting in doctors waiting rooms, for example, who might think it’s a good opportunity to go in and edit or add info.
Will it be possible to log back in and change responses once they have been submitted?
Not at the moment but once we go live definitely. The idea is that each user has their own login details that will enable them to go in and edit, update and add. They’ll also be able to view aggregated data that summarises the data already on there, hopefully converted into meaningful information that helps them in their journey, and helps us communicate with the patient, with the medical community, with government, with the general community.
Oncologist question not relevant to benign tumour patients (previously noted) possibly add a ‘not applicable’ radio button?
point taken however my tumour was benign but I still had an oncologist because I had to have radiotherapy.
Understood!
Provide a hot link to our privacy policy, not just url.
I’m trying to avoid hot links with this just at the moment because whilst it’s easy to provide one [a] most people won’t be interested in reading our privacy policy and [b] hot links are a favourite target of machines wanting to hack into websites, no matter how secure they are, so I avoid them wherever possible. The fact that we’ve provided it is the important issue for me.
I would remove reference to distrusting any information about an individual. We should not use it under any circumstance.
I take your point absolutely but I’m a bit unclear what you’re referring to. I can’t find a reference to distrusting an individual at the moment, if you let me know where it is I’ll remove it.