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#196252 - 04/24/18 06:40 PM Survey from the American Head and Neck Society  
Joined: Mar 2002
Posts: 4,743
Brian Hill Offline
OCF Founder
Brian Hill  Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,743
Boise, ID and Portland, OR
The OCF forum has been used as a source of data for peer reviewed, published studies in the past. The members of this forum have been queried on many things from the intimacy with their partners after an HPV diagnosis and treatment, to immuno therapeutic trials and their understanding of them or willingness to participate in them. We are a resource to understanding ideas that cannot be easily quantified through conventional research channels and patient populations. We are not limited to one institution, nor even one country. We have patients in progress at varying stages of treatments and we have survivors at both short and very long survival stages. We have caregivers who have an amazing amount of information about patient behaviors from eating to depression. It would be very hard at one or two institutions to find a body of individuals like those that make up this wonderful group at the OCF support forum.

Once again an important group is reaching out to us to help them understand better the patient perspective on the process we all endure. This is a group which are the primary surgical team doctors in our treatment. In an endeavor to help them better interact with their patient populations and improve patient issues that may be discovered in a survey, they are asking members of our forum and also in the OCF social media circles, to take a survey to that end. I personally know many, and have worked with several H&N surgeons, and as some of you know a short while ago traveled to Africa with one to be his surgical assistant in a remote village there for a couple of weeks. While most do not get to see the work they do from the perspective that I have had standing across the surgical table from them, I think we can all agree that unlike other oncology disciplines, theirs is unique in a very significant way. Everything that they do, is a human mind and training guiding a human hand to a particular action often deep within us. Unlike radiation in which the oncologist is separated from the patient via machines, technicians and others, or chemotherapy doctors that are equally distant from us via the chemicals they prescribe to be given to us, surgeons are intimately involved with us physically. It is a profession very unforgiving of any miscalculation, and requires an amazing degree of knowledge and skill.

While they have my utmost respect for the knowledge and experience that they bring to their specialty, I have often thought of them as rather cavalier. Perhaps this is just my own prejudices coming into play, and probably something that I should expect from someone whose trade is what it is; one with every move of a scalpel, its pressure and direction, an opportunity for so much to go wrong, when so little actually does; and of course the focus that all requires. But I think that anytime we have a chance to influence the thinking of a specialty, and drive their skills to include things that are more patient centric than just the knowledge and skill set they bring to the problem, it is a good opportunity to lend our voices to doing so. I have looked at the survey they are asking us to fill out. If you volunteer to request it through the provided email address, know that your patient information is covered by the existing patient privacy laws that are in place. Just as OCF does not share or sell information about you, what you say on the survey will be equally protected. Note: The AHNS will not be sharing your name, information or the survey results with the Oral Cancer Foundation.

I urge as many of OCF's members as possible to take part in this survey. This time it will not be for a published research article, but to internally, within their organization, evaluate the positives and negatives about their interactions with patients, and perhaps improve communications and interactions with us as patients as a result. Let's tell them about our experiences. I appreciate the effort by those of you who take the time to be part of this survey.

****The following is from the American Head and Neck Survivorship Committee...****

Dear Oral Cancer Foundation Member:

As a head and neck cancer survivor, you are an inspiration to patients, family, friends, physicians, nurses, and other cancer survivors. You also are uniquely positioned to help improve cancer care for yourself and others. Why? Because you have knowledge, experience, and wisdom that no one else has: the lived experience of head and neck cancer treatment and survivorship.

We are continually trying to improve the quality of survivorship care by making it more patient-centered. What issues do you wish your provider would focus on with you? Checking for cancer recurrence? Swallowing? Being out in public? The cost of cancer care? To help make sure that head and neck cancer providers across the country deliver care that puts you, the survivor, at the center of the treatment strategy, we have designed a brief survey. By answering these questions, you will help guide clinical care and research projects to focus on the areas that matter most to you.

Thank you in advance for partnering with us to help improve the quality of care for head and neck cancer survivors.

The American Head and Neck Society Survivorship Committee
ahns.survivorship@gmail.com

***Please send a short email to the email address above to request a copy of the survey be emailed to you***

Last edited by ChristineB; 04/30/18 03:11 PM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#196267 - 04/25/18 07:36 PM Re: Survey from the American Head and Neck Society [Re: Brian Hill]  
Joined: Jul 2009
Posts: 1,381
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,381
Los Angeles
Sounds like a postive idea, Brian. I've sent away for the survey.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 9 years all clear in 6/18
#196460 - 05/17/18 07:24 PM Re: Survey from the American Head and Neck Society [Re: Brian Hill]  
Joined: Jul 2009
Posts: 1,381
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,381
Los Angeles
Everyone: the survey is easy and quick. I recommend we all participate in this good cause!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 9 years all clear in 6/18
#196707 - 07/06/18 08:22 PM Re: Survey from the American Head and Neck Society [Re: Brian Hill]  
Joined: Jun 2007
Posts: 10,051
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,051
PA
I also have taken the survey. Its very simple and will only take a few minutes. Caregivers are able to participate as well. This survey is not limited to US residents. Anyone in any other country is able to take part in this survey. The only limitation is they must speak, read and write in English.

If you have not yet taken the survey, please help future oral cancer patients by giving your input.

Thank you!!!


PS...

*** To participate, please send a short email to the following email address asking for a copy of the survey be emailed to you***


ahns.survivorship@gmail.com


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#196780 - 07/16/18 04:34 PM Re: Survey from the American Head and Neck Society [Re: Brian Hill]  
Joined: Oct 2008
Posts: 224
travelottie Offline
Gold Member (200+ posts)
travelottie  Offline
Gold Member (200+ posts)

Joined: Oct 2008
Posts: 224
NY state
I was not able to complete this survey online due to technical difficulties with the survey format. I have explained the problems to a representative.
Lottie


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
#196781 - 07/16/18 09:03 PM Re: Survey from the American Head and Neck Society [Re: Brian Hill]  
Joined: Jun 2007
Posts: 10,051
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,051
PA
Oh no! Thanks for letting me know. I will check in with them as well.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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