To Oral Cancer Patients, Survivors and Caregivers,

I am a psychologist at the Moffitt Cancer Center in Tampa, FL. My colleagues and I want to learn more about the supportive care needs of persons who have ever been been diagnosed with oral cancer and oral cancer caregivers.

To this end, we are conducting a web-based survey of supportive care needs in oral cancer. The survey has the full support of the Oral Cancer Foundation. Several members of the online forum have been instrumental in the survey's creation.

To access the confidential survey, please follow the link below (or, if necessary, copy and paste the link into your web browser):

https://mysurvey.moffitt.org/Checkbox/SupportiveCareNeedsinOralCancer.aspx



If you'd like more information before you access the survey:

Why are we conducting this survey? Understanding supportive care needs is a necessary first step toward providing effective psychosocial care in active oral cancer treatment and survivorship.

Who may participate? Persons who have ever been diagnosed with oral cancer and/or persons who have cared for someone with oral cancer.

In order to participate, you must:
• be greater than 18 years of age;
• be able to speak and read standard English;
• have a history of oral cancer or have cared for someone with oral cancer;
• have use of a computer; and
• be willing to provide informed consent.

How long will the survey take to complete? About 15 minutes.

Who is conducting this study? This study is being conducted by psychosocial researchers at the Moffitt Cancer Center in Tampa, Florida with the support of the Oral Cancer Foundation. This is a non-funded study.

How do I access the survey? To access the survey, click on the link below or copy and paste the link into your web brower:

https://mysurvey.moffitt.org/Checkbox/SupportiveCareNeedsinOralCancer.aspx

Who should I contact if I have questions about the survey? If you have questions about the study, please call Dr. Kristine Donovan at (813) 745-1818 or send an email to Dr. Donovan at oral.cancer@moffitt.org

If you have ever been diagnosed with oral cancer or provided care for someone with oral cancer, please consider taking this survey. All of the information you provide is confidential. Thank you in advance for your time and effort.

I hope everyone will take a couple minutes and help Dr Donovan with the survey. It is confidential and will give much needed feedback about what can be fixed regarding our treatment and after care. This is very important to help future oral cancer patients! Lets all pitch in and show them how supportive OCF members can be.

Please help!!!!

Hey Hey Caregivers. Here is your chance to document what works and what didn't. My wife just took this survey. It brought back lots of memories of times better forgotten but it's important to get academic credentials of the existential tribulations caregivers endure. Plus Dr. Kris has a great sense of humor and my personal endorsement. So take the survey
oh; WARNING; Take a minute to write out the definitions of the choices before taking the multiple choices since they make sense but not quite common parlance. My wife winged it with my cynical translation of Low Need as: Concerned/ difficult, I needed Help but never got it so did it Myself.
Because Satisfied did not quite get it

Charm

I just took it. Thank you for thinking of us caregivers!

Done!!!

Caregivers are in for the ride right along with the patient. How could they be left out of this survey? So glad that its off to a good start!!!

Just did it! How great that caregivers are included in this.

Done!

Done!

Way to go!!!!

Keep up the great teamwork with this survey!!!!

I completed it as well.

Thanks so much for the response thus far. I hope that everyone who participates - patients, survivors, and caregivers - finds the survey to be a productive use of both their time and energy. Your effort is much, much appreciated. So, please, do continue to encourage others to participate.

Kris

Done!!

Hey Fellow Patients/Survivors:

I did not mean to give the impression that this survey is just for caregivers. It is also for patients. So take it.

Caregivers
This could be an interesting discussion starter or just informational if you have your patient also take this survey. The questions are a little bit different but it does let an impartial third party ask all those questions of the patient that you suspect the answers to. Plus it's a rare chance for your patient to do a survey that actually cares about what they are feeling and undergoing.

Charm

just finished.

Did mine - will have my husband do one tonight. Kris, you may have already mentioned - but will the result / summary of the survey be available?

Ive been assisting Dr. Donovan for several months with the survey. She said it will be published in peer-reviewed academic medical journal which is very exciting! The results will also be made available to OCF and its members.

Way to go with stepping up, everyone! Lets make our voices heard!!!! Both patients and their caregivers too. Even if the patient is not part of the forum I hope they will help future oral cancer patients by giving their input.

Thanks everyone!!!!!

Did the survey, too.

I did just completed the survey.
Ginny

Completed survey. Glad clinicians are going to the source for research information. Encouraging.

Ken

Thanks to everyone who has participated in this very important survey!!! I am hoping that every single active member will take just a couple minutes to fill out this survey. Any member who is a caregiver should also ask the patient to help by filling it out too. Even if they are not active on the forum, they can still be part of this survey. Any patients who have already filled out the survey, please ask your caregiver to take a couple minutes to also fill this out.

The results will help the future oral cancer patients. I hope everyone can work together to help make a difference!


THANKS!!!!

Thanks to all of you who have participated thus far in the Survey of Supportive Care Needs in Oral Cancer.

To date, 42 individuals have completed the survey. The majority of these individuals are caregivers. This is a great thing - the needs of caregivers often go unheard.

We need to hear from patients too!

There is a real lack of research available about oral cancer patients and survivors and the psychosocial / psychological aspects of oral cancer.

Please take a few minutes to complete the confidential survey. Your responses are anonymous; there is no way for us to identify you by your responses.


https://mysurvey.moffitt.org/Checkbox/SupportiveCareNeedsinOralCancer.aspx


Thank you in advance for your time and effort.

If you have questions about the study, please call Kristine Donovan, PhD at (813) 745-1818 or send an email to oral.cancer@moffitt.org

So far 42 is very good!

I hope more patients will participate. This is our chance to get heard!!!! The study is so important to how future oral cancer patients will be treated and what services will automatically be offered to them.

Come on patients from anywhere in the world, lets all take a few minutes and get noticed!

Done by an "OCF Down Under" member

I too, down under, have done this.
Tammy

Excellent! Thank you very much!!!

To any caregivers.... PLEASE ask your patient to help by taking the survey too. They do not have to join OCF or even come onto the forum to do the survey. This survey will impact the future of treatment protocols for oral cancer patients.

Please help participate!!!

With so many newer members recently, I am hoping they will help OCF and Moffitt CCC by taking this important survey. It only take a couple minutes. Its open to oral cancer patients/survivors and also their caregivers from any location. Its our chance to give oral cancer patients a voice and change how future patients are treated. We need to get a minimum of 150 patient responses and another 150 from the caregivers. When you complete the survey also ask your caregiver to help out or the oral cancer patient.

Moffitt Oral Cancer Survey

Just completed the survey, very easy. Also, gave me some things to think about, A

Thank you to everyone who has participated in the Supportive Care Needs Survey. Please, encourage those you know who have not yet completed the survey to do so. Your participation is very important to us!

Kris

The survey is still going on and needs ALOT more participants. PLEASE take a couple minutes and take the survey. So far there are only 75 patients out of 150 minimum participants and 40 caregivers out of 150 needed. We really need to pitch in and work together to help other future oral cancer patients.

Please address any questions or concerns to me or Dr Donovan (kaddie screen name).

Thanks!!!

Thanks Ray, and everyone else who has already participated!

This survey is very important and is backed by OCF. Location does not exclude anyone, its open to all OC patients and their caregivers.

Moffitt OCF Survey

Done!

Cathi

Christine:

I completed the survey a few weeks ago from a link on the OCF Facebook page. It was very comprehensive and had some good information.

The Moffitt survey is still going strong, There are several newer members here who may not be aware of this important project. Please take a few minutes and give your thoughts and opinions on this confidential survey. It has the potential to help future OC patients with offering more necessary services instead of the patient always pushing to be their own advocate.

https://mysurvey.moffitt.org/Checkbox/SupportiveCareNeedsinOralCancer.aspx

Completed it tonight and shared it with my wife to complete as well.
Steve

Thanks Steve! Feel free to pass it along to any other oral cancer survivor or caregiver you know.

This is for oral Cancer. I have Oropharyngeal cancer. Should I take the survey?

Paul

Yes. You have one type of oral cancer. In the head and neck region, two of the most common types of cancer are cancer of the oral cavity (mouth and tongue) and cancer of the oropharynx (the middle of the throat from the tonsils to the tip of the voice box). Both are oral cancer and describe the location..
That's general. Here is a more specific breakdown
Oral cancer is classified according to two criteria:

1. The cancer location. According to this criterion, there are two types of oral cancer:

1) Oral cavity cancer - the cancer that starts in the mouth, which includes the tongue, lining of the cheeks, gums and teeth, upper or lower jaw, the hard palate (the mouth’s roof), the mouth’s floor (the area beneath the tongue), and salivary glands.

2) Oropharyngeal cancer - the cancer that starts in the oropharynx, which includes the soft palates (the back of the mouth), the base of the tongue, uvula, and tonsils (one of two small masses of lymphoid tissue located on either side of the throat). Around two-thirds of the oral cancers are found in the mouth, while one-third are found in the pharynx.


Charm

I just finished this and enjoyed it. I like the questions that I was aked . Very easy . Now it's Isosource time. Gotta fire up that tube to keep this kinny body happy.

Done! It's nice to be able to do even the smallest of things that might help people deal with this dis-ease.

Last call to take part in the Moffitt study. Any oral cancer caregiver or patient (current or former) is eligible to participate.

This is very important as it will directly affect how future oral cancer patients are treated. By spending a few minutes to complete the survey it can benefit hundreds later. Please help OCF to help other oral cancer patients.

The survey is completely confidential. You do not give your name. If you have any questions please ask me or email directly to the person running the survey.

If you'd like more information before you access the survey here are a few FAQ:

Why are we conducting this survey? Understanding supportive care needs is a necessary first step toward providing effective psychosocial care in active oral cancer treatment and survivorship.

Who may participate? Persons who have ever been diagnosed with oral cancer and/or persons who have cared for someone with oral cancer.

In order to participate, you must:
• be greater than 18 years of age;
• be able to speak and read standard English;
• have a history of oral cancer or have cared for someone with oral cancer;
• have use of a computer; and
• be willing to provide informed consent.

How long will the survey take to complete? About 15 minutes.

Who is conducting this study? This study is being conducted by psychosocial researchers at the Moffitt Cancer Center in Tampa, Florida with the support of the Oral Cancer Foundation. This is a non-funded study.

How do I access the survey? To access the survey, click on the link below or copy and paste the link into your web brower:

https://mysurvey.moffitt.org/Checkbox/SupportiveCareNeedsinOralCancer.aspx

Who should I contact if I have questions about the survey? If you have questions about the study, please call Dr. Kristine Donovan at (813) 745-1818 or send an email to Dr. Donovan at oral.cancer@moffitt.org

If you have ever been diagnosed with oral cancer or provided care for someone with oral cancer, please consider taking this survey. All of the information you provide is confidential. Thank you in advance for your time and effort.

PS, anyone who has already completed the survey, thank you! Only one survey per patient.

To the caregivers reading this, please feel free to participate. Your opinions are also wanted in this survey. If you are a caregiver please pass the survey along to your oral cancer patient. To any oral cancer survivor who has completed the survey, please also give this to your caregiver to complete. The more who participate, the better Moffitt will understand what us oral cancer patients go thru.

Last call for our OCF members to have their say. The survey is coming to a close very soon.

While it is still open, any patients or caregivers who have not yet taken the survey, PLEASE do it now. It only takes a few minutes, is completely confidential and will help provide a more well rounded approach to future oral cancer patients. The survey is to help understand what we as patients (or caregivers) go thru so additional services can automatically be offered to help us. More detailed info is in a couple posts above.

Any patient that has done the survey, please ask your caregiver to also take it. The same goes for our wonderful caregivers, please ask your patient for their help, their input is very important.

Thanks to everyone who has given their support already!

Moffitt Supportive Care Survey