Help Patients by Sharing Your Voice!

[Bestbird]

Greetings,

Please help us gather data on your MBC treatment experience by taking a short survey.

I am involved with the Patient-Centered Dosing Initiative (PCDI) consisting of patient advocates and Medical Oncologists dedicated to improving the lives of individuals with MBC.

People with MBC differ from those with early stage breast cancer in that our disease isn't curable - although it's treatable - and we will usually remain on therapy for the rest of our lives. As a result, many of us may experience treatment-related side effects that can impact our quality of life.

Understanding the current landscape of patients’ treatment-related experiences is a vital step towards advancing the PCDI’s efforts. Rather than making assumptions, our members believe that obtaining reliable information directly from patients is a key factor for effectively making improvements. We hope that you’ll share your experience and enable us to gather data by taking this survey.

docs.google.com/forms/d/e/1...

Thank you!

Anne

[Hidden]

Done ✅

[Hidden]

Sorry it’s for people in USA only.

Clare

[Bestbird in reply to Hidden]

BellaE, Thank you for your interest in the survey. We ask only those in the US to complete the survey because the survey's IRB (Institutional Review Board) exempt determination covers individuals solely in the US. (That said, if someone elsewhere happened to fill it out without realizing it's US-based, there's no harm done).

We are very excited about the survey! The results will be posted in Sept. and if our abstract is accepted, they'll be presented at a Poster at SABCS 2020!

With good wishes,

Anne

[Hidden in reply to Bestbird]

Thank you Anne

It does look very interesting. I will do it just to see the questions!

Clare

[Bestbird in reply to Hidden]

BellaE, our team of 10 MBC patient advocates spent months compiling the survey, and our Advisory Board of medical oncologists reviewed it prior to finalization. I'd love to hear any thoughts or feedback!

Best wishes!

[Hidden in reply to Bestbird]

Well done on all the hard work.

Clare

[Bestbird in reply to Hidden]

Thank you! Can't wait to share the results next month!

[misshope in reply to Hidden]

I would like to fill out the survey.

[Bestbird in reply to misshope]

misshope, Thank you! Here is the link to the survey: docs.google.com/forms/d/e/1...

[Hidden]

Sorry I’m in Ireland 🇮🇪 I did the survey but only realising now it will not be counted !

[Bestbird]

Bren1956, no worries! I wish we could invite individuals from all countries!

[Zebra2018]

Done

[Bestbird in reply to Zebra2018]

Thank you!

[bankusboysmom]

Done

[jantexred in reply to bankusboysmom]

Done

[Hidden]

Hi Anne,

I'm in the UK, but still completed the survey. It's a shame our results won't get counted, but it was still interesting to take part. I completed a metastatic breast cancer survey before. It had some questions that I found hard to answer such as "How did you and your family feel when you were diagnosed?" These questions were not quite so personal and didn't upset me.

Sophie

[Bestbird in reply to Hidden]

SophSP, I truly wish the survey cold have been international! Each country or area (such as the EU) has its own data and research participant privacy and protection guidelines, and we didn't have the wherewithal to work with and receive clearance from them (as we did with the US IRB process). I am glad these survey questions were clear and easy to answer.

With best wishes!

[Hidden in reply to Bestbird]

That's OK, Anne. Thanks for mentioning the survey.

Sophie

[Hidden]

I filled it in but I love in Canada

[Aquadog]

Done! But my clicker finger was too fast - I'd like to be part of the survey for patients with lowered dosage.

Very eager to see the results. You do incredible work, Anne. Thank you.

[Bestbird in reply to Aquadog]

Auadog, thank you for completing the survey! If you'd like to be part of an observational study (which is thus far only a gleam in our eye) about lower dosages, please email [e-mail] with Future Study in the subject line.

Many thanks!

[Jeremiah2911]

Done! Thank you for all the work y’all are doing! More voices to what we’re experiencing will hopefully help future treatment choices.

[Bestbird in reply to Jeremiah2911]

Jeremiah2911, thank you for completing the survey, which will help us to work with oncologists and other health care providers to effectively treat individuals with MBC while doing a better job of mitigating side effects!

[Jeremiah2911]

You’re welcome! It’s important for oncologists to understand how VERY real these side effects can be & offer support in whatever form they can. Knowing we have possible options can help emotionally just as much as physically

[Bestbird in reply to Jeremiah2911]

So true!

[lynnhbtb]

done

[Bestbird in reply to lynnhbtb]

lynnhbtb, thank you!

[Staysha]

Done

[Bestbird in reply to Staysha]

Thank you! : )

[MyMiracle13]

Done. Thanks Anne for being so proactive and helping us in this forum❤️

[Bestbird in reply to MyMiracle13]

Thank you!

[MyMiracle13]

Oh no. I’ve only just realized that it’s for people living in the USA only. It’s strange though that the instructions for “next” or “go back” page was in Filipino that is why I thought it was international. Anybody else have those instructions in their native language? I live in the Philippines.

[Bestbird in reply to MyMiracle13]

Interesting! Since the survey uses Google Forms as a platform, it's possible that the Google software recognizes local language. Just a guess!

[Sunnydrinking]

Completed - thanks for everything you do helping us to live a quality life as long as possible with MBC

[Bestbird in reply to Sunnydrinking]

Thank you!

[Sunnydrinking]

Oops I live in uk too ...

[Bestbird in reply to Sunnydrinking]

Sunnydrinking, it is what it is! No worries.