Help Patients by Sharing Your Voice! - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

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Help Patients by Sharing Your Voice!

Bestbird profile image
37 Replies

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

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Bestbird profile image
Bestbird
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37 Replies

Done ✅

Sorry it’s for people in USA only.

Clare

Bestbird profile image
Bestbird in reply to

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

in reply toBestbird

Thank you Anne

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

Clare

Bestbird profile image
Bestbird in reply to

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!

in reply toBestbird

Well done on all the hard work.

Clare

Bestbird profile image
Bestbird in reply to

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

misshope profile image
misshope in reply to

I would like to fill out the survey.

Bestbird profile image
Bestbird in reply tomisshope

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

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

Bestbird profile image
Bestbird

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

Zebra2018 profile image
Zebra2018

Done

Bestbird profile image
Bestbird in reply toZebra2018

Thank you!

bankusboysmom profile image
bankusboysmom

Done

jantexred profile image
jantexred in reply tobankusboysmom

Done

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 profile image
Bestbird in reply to

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!

in reply toBestbird

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

Sophie

I filled it in but I love in Canada

Aquadog profile image
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 profile image
Bestbird in reply toAquadog

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 info@therightdose.org with Future Study in the subject line.

Many thanks!

Jeremiah2911 profile image
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 profile image
Bestbird in reply toJeremiah2911

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 profile image
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 profile image
Bestbird in reply toJeremiah2911

So true!

lynnhbtb profile image
lynnhbtb

done

Bestbird profile image
Bestbird in reply tolynnhbtb

lynnhbtb, thank you!

Staysha profile image
Staysha

Done

Bestbird profile image
Bestbird in reply toStaysha

Thank you! : )

MyMiracle13 profile image
MyMiracle13

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

Bestbird profile image
Bestbird in reply toMyMiracle13

Thank you!

MyMiracle13 profile image
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 profile image
Bestbird in reply toMyMiracle13

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

Sunnydrinking profile image
Sunnydrinking

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

Bestbird profile image
Bestbird in reply toSunnydrinking

Thank you!

Sunnydrinking profile image
Sunnydrinking

Oops I live in uk too ...

Bestbird profile image
Bestbird in reply toSunnydrinking

Sunnydrinking, it is what it is! No worries.

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