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ThyCa News

ThyCa NEWS NOTES - Survey Issue

12/2013

Contents

Why Should I Participate in Medical Surveys?

Our answers help medical professionals, patients, and caregivers better understand the experiences of people coping with thyroid cancer. 

Each survey collects useful information on aspects of coping with thyroid cancer.

In his report on the Voice Issues survey, Dr. David Myssiorek, one of ThyCa’s medical advisors, noted that these surveys contribute to physician knowledge, patient care, and doctor-patient relationships.

Dr. Myssiorek also wrote, “The importance of these surveys is manifold. First, the surveys can supply medical researchers with normalized data from patients across small and large centers, not simply patients from individual large academic centers. Second, if the medical literature states that there is a low percentage of dry mouth after RAI, but ‘our constituency claims otherwise, by using our questionnaire,’ ThyCa constituents could change the way in which patients and doctors interact in the future. Third, if vocal issues are more prevalent than currently suspected, then patients with weak indications for thyroid surgery could include the potential for vocal change in their decision-making. Similarly, if our membership determined by survey that vocal therapy was helpful; wouldn’t more physicians tell their patients with vocal changes about it?”

“The point is that ThyCa-endorsed surveys give power to us as the people who answer them. These surveys potentially could change doctor/patient relationships, improve the exchange of information, and better prepare patients for thyroid surgery, and they could help eliminate non-effective practices or add therapies to enhance post treatment quality of life. The more people participate in these surveys, the louder our collective voice will be heard.”

Thank you very much to everyone who has already participated in a survey.

Whether you’re new to thyroid cancer, or a survivor of many years, you can help by visiting www.thyca.org and taking the surveys posted there. Thank you!

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3 New Surveys: How To Take Part

We’re excited to announce 3 important new Thyroid Cancer Patient Experience Surveys.  Each survey takes just a few minutes to complete 

Please take part. Help advance knowledge about how we live with our cancer. You can participate from your own computer, and your responses are anonymous and confidential 

These new surveys bring to 15 the total number of surveys in which ThyCa has collaborated since 2001. We are proud to be part of these efforts.

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Thyroid Cancer & Quality of Life: University of Chicago Survey

Click here to participate.

Researchers at the University of Chicago are conducting a multi-institutional study on how the diagnosis and treatment of thyroid cancer affects people’s quality of life in both the short term and the long-term.

If you have had thyroid cancer, your participation in this short survey will be greatly appreciated.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is pleased to cooperate with the University of Chicago in this study.

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Detection of Radioactive Iodine (I-131) in Public Places

A Survey for People Living In or Traveling from US States and Territories

Click here to participate.

The purpose of this study is to evaluate aspects of the experience of patients who have been treated with I-131 and if they were detected and/or detained by various security systems at locations such as airports, border crossings, and governmental buildings.

The results of this survey may be very valuable in the future management of I-131 therapies.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is pleased to cooperate with Medstar Washington Hospital Center in this study.

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Thyroid Cancer Quality of Life Survey:USC/UCLA

Click here to participate.

We are physicians from the University of California Los Angeles (UCLA) and the University of Southern California (USC) who would like to learn about quality of life in thyroid cancer survivors.

We will use this anonymous data to develop a program in partnership with oncologists, endocrinologists, and surgeons to better serve thyroid cancer patients and survivors. We appreciate your time and input.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is pleased to cooperate with USC and UCLA in this study.

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Meet the Researchers

Melanie Goldfarb, M.D., Surgeon, is Assistant Professor at the University of Southern California Norris Cancer Hospital, Los Angeles, California, where she specializes in Surgical Oncology. Her subspecialties and clinical interests are minimally invasive thyroid, parathyroid, adrenal surgery; Pediatric Endocrine Surgery, non-pancreatic neuroendocrine tumors, and ultrasound. She received her education at University of Illinois College of Medicine, Chicago, Illinois, and Brown University, Providence, Rhode Island, with residency at Beth Israel Deaconess/Harvard Medical School in Boston, Massachusetts, and Clinical Fellowship in endocrine surgery at Jackson Memorial Hospital University of Miami Health System in Miami, Florida. She also co-edited The Pocket Surgery Notebook. In addition, she has been a ThyCa Conference speaker.





Raymon H. Grogan, M.D., is a specialist in the surgical management of thyroid, parathyroid and adrenal gland diseases. He is an assistant professor of surgery at the University of Chicago, Chicago, Illinois, as well as the director of the endocrine surgery research program.  He studies the underlying causes as well as surgical and oncologic outcomes of endocrine cancers, with a particular focus on thyroid cancer. Dr. Grogan is also a junior faculty Bucksbaum scholar at the University of Chicago. As such he also has an interest in studying the doctor-patient relationship. As a surgeon, one aspect of this relationship that Dr. Grogan is particularly interested in is understanding how surgeons can better communicate and care for patients after they have had their surgery.  Prior to coming to the University of Chicago, he completed his general surgery residency training at Stanford University in California, followed by two years of fellowship training in endocrine surgery at the University of California San Francisco.  Dr. Grogan also completed three years of basic science and outcomes-based research during his training years in California. He has been a ThyCa conference speaker. 

Douglas Van Nostrand, M.D., Nuclear Medicine Physician, is Director of Nuclear Medicine of the Division of Medicine at Washington Hospital Center in Washington, DC. He is also Professor of Medicine at Georgetown University Hospital and Director of the Washington Hospital Center’s nuclear medicine residency program. Prior to joining the Hospital Center, Dr. Van Nostrand was director of nuclear medicine at Good Samaritan Hospital in Baltimore, Maryland, after serving in the United States Army as director of nuclear medicine at Walter Reed Army Medical Center and in the US Air Force as director of nuclear medicine at Malcolm Grow Medical Center in Washington, D.C. Dr. Van Nostrand completed his postgraduate training in internal medicine at Wilford Hall Medical Center in San Antonio, Texas, and his nuclear medicine training at the National Naval Medical Center in Bethesda, Maryland. He has an M.D. degree from Emory University School of Medicine and a B.S. from Duke University. He has edited and co-edited seven medical books for professionals and patients including the patients’ reference Thyroid Cancer: A Guide for Patients, and the medical textbook co-authored with Dr. Leonard Wartofsky, Thyroid Cancer: A Comprehensive Guide to Clinical Management. He is a member of ThyCa’s Medical Advisory Council and has spoken at many ThyCa support group meetings, regional workshops, and conferences.

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Surveys: From 2002 to Today

ThyCa has collaborated in 15 thyroid cancer patient experiences surveys, starting in 2002.

Individual surveys have received responses ranging from 518 to more than 5,800 thyroid cancer patients.

  • 2002. Survey of health profiles and quality of life of thyroid cancer survivors. Pamela Schultz, Ph.D.,
    R.N., M.S., developed this survey. This was the first survey of patients’ experiences. ThyCa helped Dr.Schultz refine and finalize her survey questionnaire, made the target audience aware of the survey, and ensured participation. Responses came from 518 thyroid cancer survivors. Results were published in the journal Head and Neck in May 2003. The study concluded that participants “generally report good health long term but describe distinct, lasting medical problems including symptoms of thyroid dysregulation. The extent and manner in which cancer therapy contributes to the health profile of the group merits further inquiry.”




  • December 2003-early 2004. ThyCa’s Thyroid Cancer Patient Experiences Survey. This international survey was developed by ThyCa volunteers, with funding from Genzyme, Advisory Board Foundation, and ThyCa: Thyroid Cancer Survivors’ Association, Inc. A total of 2,149 patients answered questions about their sources of information about thyroid cancer, support services received, the types of physicians from whom they received their thyroid cancer care, and testing, treatments, and side effects, Most participants were from the United States, Canada, United Kingdom, and Australia; people from many additional countries also responded. They had all types of thyroid cancer, ranged from teenagers to people more than 80 years old, and had been diagnosed at varied time periods from recently to more than 40 years prior.

  • 2007. USA Today Survey of Radioactive Iodine Treatment. This survey, developed by the newspaper USA Today, was posted on ThyCa’s web site for one week and received 900 responses. In a series of articles, USA Today reported that “more than half were treated and released rather than kept in hospitals…. and that 85% of outpatients worried about exposing their family members to radiation.”

  • 2009. Patients Use of Complementary and Alternative Medicine (CAM).  This survey was developed by Stephanie Lee, M.D., Ph.D., Endocrinologist, Boston University Medical Center, ThyCa Medical Advisor, and Jennifer Rosen, M.D., Boston University Medical Center. Responses came from 1,326 participants. Over 80% of the thyroid cancer patients reported using some form of CAM, the researchers reported at the 14th International Thyroid Congress in September 2010. This use of CAM is about double that of the general population in the United States. Results also showed that 18% of the study participants reported that their physician did not know about, ask about, or prescribe their CAM use. A total of 83% of the patients in the study had papillary thyroid cancer. The participants averaged 46 years old; 84% were women and 90% were white. The most common forms of CAM were multivitamins and prayer. Apart from these two approaches, the five most common CAM mind-body approaches were massage, chiropractic, yoga, meditation, and acupuncture. The five most common CAM biologic approaches were herbal tea, special diets, herbal supplements, homeopathy, and ginger. About 7% of the survey respondents reported using no form of CAM.

  • 2009. Radioactive Iodine Treatment. The survey team was led by Douglas Van Nostrand, M.D., Nuclear Medicine Physician, and Matthew D. Ringel, M.D., Endocrinologist, both ThyCa medical advisors. Responses helped determine information such as the frequency of radioiodine outpatient and inpatient treatments, the adequacy of the radiation safety instructions that patients received, and areas involving I-131 treatments that may be improved.





  • 2009. Voice Following Thyroid Surgery. This is the largest survey to date, receiving responses from more than 5,800 people. This survey collected information about voice disorders following thyroid surgery, how frequently these issues occur, and whether vocal change affected the patient’s life. Results revealed a significant rate of voice issues and impacts.  The survey was developed by David Myssiorek, M.D., ThyCa Medical Advisor, Professor of Otolaryngology, New York University Langone Medical Center, New York, NY. Dr. Myssiorek has presented the findings at medical meetings and ThyCa conferences.







  • 2010. Radioactive Iodine Treatment Survey. This survey was developed by the U.S. House of Representatives Subcommittee on Energy and Environment of the Committee on Energy and Commerce to gather information about patients’ experiences with receiving radioactive Iodine (I-131) as part of their thyroid cancer care. The questionnaire received more than 1,000 responses during the one week that it was posted on ThyCa’s site.

  • 2010. Patients Experiences Survey. This international survey was developed by volunteers from organizations in seven countries and received 2,398 responses, nearly half from the United States and most of the rest from Germany, Canada, France, United Kingdom, Argentina, and Italy.  Kate Farnell, director of the UK’s Butterfly Thyroid Cancer Trust, presented results at the International Thyroid Congress. Patients reported varied experiences. More than 80% received radioactive iodine. Most said that they needed better information and psychological support at the time of diagnosis.

  • 2011. Radioactive Iodine and the Salivary Glands. ThyCa Medical Advisors Douglas Van Nostrand, M.D., and Brian McIver, M.D., Ph.D., and other researchers led this study. Its goal was to identify whether or not patients had any of several side effects from their last I-131 therapy and to help identify factors that may have increased, decreased, or prevented these side effects.

  • 2012. Pain Survey. The goal was to understand the challenges that patients experience in experiencing and managing cancer pain, as well as in communicating with their health professionals about it. ThyCa and other cancer advocacy organizations participated in this survey.

  • 2013. AYA Patients Experiences Survey. This survey was developed by physicians from the University of California Los Angeles and the University of Southern California, to learn about informational and support needs of thyroid cancer survivors at the time of diagnosis, during treatment, and after cancer care. The goal was to use the findings to improve patient services and programs.

  • 2013. RAI After-Effect. This survey is currently open to your participation. It is gathering information about an after-effect of radioactive iodine. David Myssiorek, M.D., ThyCa Medical Advisor and Professor of Otolaryngology, Head and Neck Surgery, at New York University School of Medicine, and Steven Scharf, M.D., Chief of Nuclear Medicine, Lenox Hill Hospital, New York, NY, are the lead researchers.

  • 2013. See the article above for details. The surveys listed below were recently posted on on our website. You’re invited to take part.
    • University of Chicago Quality of Life Survey.
    • RAI Detection in Public Places Survey.
    • USC /UCLA Quality of Life Survey.

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Follow Us on Social Media

We're now over 8,800 strong on the ThyCa Facebook page and over 1,600 on Twitter 

Our support of each other--whether giving or receiving--is an incredible gift. Thank you for joining us.

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Proposals for ThyCa’s 2014 Research Grants Due by January 31, 2014.

These grants are open to researchers worldwide, and are for all types of thyroid cancer: papillary, follicular, medullary, anaplastic, and variants. We’re proud to have awarded grants to researchers in 5 countries since 2003. Get the details here: www.thyroid.org/thyroid-physicians-professionals/research-grants-thyroidology/ For information about past recipients and their research projects, visit our Rally for Research page.

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Every Day

Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors' Association, Inc. Your generous support is what makes it possible to sustain, strengthen, and expand our services and outreach.

It only takes a minute to make a donation online in support of ThyCa's work (or you are welcome to donate by mail to ThyCa, P.O. Box 964, Chesterfield, MO 63006-0964).

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About ThyCa NEWS NOTES and ThyCa
Copyright (c) 2013 ThyCa: Thyroid Cancer Survivors' Association, Inc.

Please share ThyCa News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at publications@thyca.org.

The information in this newsletter is intended for educational purposes only. It is not intended, nor should it be interpreted, as medical advice or directions of any kind. Readers are advised to consult their own medical doctor(s) for all matters involving their health and medical care.

ThyCa: Thyroid Cancer Survivors' Association, Inc. is a non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals serving people worldwide and dedicated to education, support, communication, and fundraising for thyroid cancer research.

ThyCa sponsors the annual International Thyroid Cancer Survivors’ Conference, as well as Thyroid Cancer Awareness Month, a worldwide observance each September, plus year-round awareness campaigns, research funding, and thyroid cancer research grants. 

Contact us for free materials and information. E-mail to thyca@thyca.org call toll-free at 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our website.