Aussies and Kiwis with CLL - Your invitation to help researchers investigate what you value with respect to your care and management

[AussieNeil]

Community and Patient Preference Research (CAPPRE), on behalf of a pharmaceutical company, is conducting research with people living with CLL in Australia and New Zealand to explore their experiences with the healthcare system. CaPPRe is an independent research company based in Sydney which works closely with industry, academia, and government to encourage patient involvement and choice in healthcare decision making.

Your participation is valuable in understanding the impact of CLL on people’s lives. This information helps improve the understanding of what your treatment goals are and what is important to you with treatment for this condition.

Visit survey.confirmit.com.au/wix... to check if you are eligible to participate in the 30-40 minute on-line survey. Please use a laptop, desktop computer, or large tablet (>10"/250mm) to complete the survey. Mobile phones and mini tablets will not be suitable.

In appreciation for your time and contribution to the research, you will receive a payment of A$75 or NZ$75 respectively for completion of the full survey. You will have the option of receiving a report of the findings. Participation is voluntary and you are free to withdraw at any time.

Need more information? Contact Rose Wilson at [e-mail] or call [phone]. A reminder, this survey is open to those with a CLL diagnosis living in New Zealand and Australia only. Carers can assist you with the survey response. You might be surprised how much your carer is aware of ways that you minimise the impact of CLL on your life, so I'd recommend welcoming their assistance.

Note that CLL Support UK will receive referral fees for completed surveys. Any fees received will go towards the charity's project to help people with CLL/SLL in their emotional/mental problems - particularly at diagnosis and Watch and Wait. I've seen how learning that we have CLL and that nothing will be done (watch and worry ) can sometimes have a greater impact on our mental and physical health than the actual CLL does, so it's a great initiative.

This is an open, unlocked post, so that it will reach more Australians and New Zealanders.

Neil

19 September 2022 Updated to include New Zealand residents

21 September 2022 Updated to note survey device requirements

[AussieNeil Partner Administrator]

A reminder that this survey is available to those living with CLL in New Zealand and Australia only. Visit survey.confirmit.com.au/wix... to check if you are eligible to participate in the 30-40 minute on-line survey.

In appreciation for your time and contribution to the research, you will receive a payment of A$75 or NZ$75 respectively for completion of the full survey. You will also have the option of receiving a report of the findings. Participation is voluntary and you are free to withdraw at any time.

Neil

[morepork in reply to AussieNeil]

I would have loved to take part from NZ for no charge, but on attempting to register the system refuses to recognise my valid email address or maybe it's my valid phone number - so after 4 attempts I have given up. Maybe I should email Rose Wilson directly?

Kia ora, Stephanie

[AussieNeil Partner Administrator in reply to morepork]

Hi Stephanie,

Please do so and if you have any difficulties, please let me know. Your country was a late edition, so I expect it's just a simple adjustment to allow for country differences.

There is a huge need for input from your country to improve your situation. If you can let other Kiwis know, that would be great!

Neil

[Kiwidi]

I have had the same problem! Tried twice and gave up😢

[wellbeingwarrior]

Kia ora Neil, I had received this via my NZ networks I belong to, and found I was unable to complete it initially. It cannot be completed on a mobile device and my work computer (the only large device I have) blocked the site the survey is hosted on as a security risk and disallowed me access. I let the researchers admin know that had been an issue and then completed it on somebody else's personal computer.

Sue

[AussieNeil Partner Administrator in reply to wellbeingwarrior]

Thanks Sue, I admire your initiative. Thanks for persisting until you achieved success!

Neil

[AussieNeil Partner Administrator]

Those interested in completing the survey, please do so on a laptop or computer desktop unless I can advise that it can be done on a tablet.

New Zealand residents including morepork and Kiwidi , I've escalated your survey access issues. When they are resolved, don't forget to mention the treatment and other gaps you experience compared to elsewhere.

Neil

[AussieNeil Partner Administrator in reply to AussieNeil]

Updates:

1) Please use a laptop, desktop computer, or large tablet to complete the survey. Mobile phones and mini tablets will not be suitable.

2) New Zealand member access difficulties have been referred to tech support for attention.

Neil

[AussieNeil Partner Administrator in reply to AussieNeil]

Would our Kiwi members Kiwidi and morepork now retry their survey please? IT support has looked into your reported problems.

Thanks,

Neil

[Kiwidi in reply to AussieNeil]

I have completed and returned

[AussieNeil Partner Administrator]

More survey responses welcomed!

Thank you to the 4 Australians and 3 KiWis who have completed this survey on what is important to you in the care and management of your CLL.

CAPPRE have advised that they will soon be wrapping up this survey, so please respond soon if you'd like to add your say. Enjoy something special with the $75 payment for your participation. Referral payments are going towards helping newly diagnosed through a planned CLL Support UK program.

Thanks!

Neil