NEWSLETTER. ISOO Board SEPTEMBER, President: Debbie McGuire, USA

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1 NEWSLETTER ISOO Board ISOO is very thankful to Andrei Barasch who did such a great job as our Newsletter Editor for so many years! Many thanks, also to co-editor Raj Lalla. The Board feels it is important to continue the ISOO Newsletter tradition. It plans to publish a rather short newsletter at least bi-annually. The aim is to promote unity within the Society by constituting a means of communication between the Board and the members, and even more importantly among members. There is so much activity and information in the field of Oral Oncology that members may want to share. The Newsletter also helps to increase ISOO s visibility within MASCC and to colleagues not (yet) belonging to ISOO. Topics can be administrative, educational, may include clinical questions or case reports, or briefly summarize scientific research. We also welcome contributions from patients on their experiences with oral complications of cancer and cancer therapies. In order not to lose time, we have offered to act as Editors during a transition period. We invite you to send us (short) contributions, and please let us know when you are willing to strengthen the editorial team or have other ideas. We hope to get a lot of your input! President: Debbie McGuire, USA Vice President: Inger von Bültzingslöwen, Sweden Secretary: Sharon Elad, Israel Treasurer: Michael Brennan, USA Vice President of Communications: Ourania Nicolatou-Galatis, Greece Immediate Past President: Judith Raber-Durlacher, the Netherlands MASCC liaison: Joel Epstein, USA ISOO has a strong alliance with: The Interim-Editors: Inger von Bültzingslöwen (ingervonb@hotmail.com) Judith Raber-Durlacher (jraber@worldonline.nl) The purpose of ISOO is to promote scientific exchange among health care professionals in oncology related to cytotoxic therapy and its impact on the oral environment. 1

2 REPORT FROM THE MASCC/ISOO MUCOSITIS STUDY GROUP If you want to participate in the update of the MASCC/ISOO Mucositis Guidelines Please contact: Raj Lalla The 4 th Mucositis Research Workshop was held 22 June at Vancouver Cancer Centre, British Columbia Cancer Agency. This was a full-day workshop with 75 persons from 14 countries, representing both academia and industry. The workshop agenda included 13 proffered papers, 2 invited speakers and an expert panel. Informal discussions have always been a highlight of the mucositis workshop, but a new feature this year was a presentation by Dr. Joanne Bowen summarizing selected recently published literature on mucositis. Many people contributed to the success of the mucositis workshop, including: The invited speakers: Drs. David Nowotnik and Joanne Bowen Session Chairs and Expert Panel Members: Drs. Dorothy Keefe, Douglas Peterson, and Sol Silverman, Jr Moderator for the panel discussion: Dr. Sharon Elad Local hosts Drs. Allan Hovan and Peter Stevenson-Moore, who organized the excellent local facilities. Volunteers to direct attendees and staffed the registration desk Cindy Rittenberg and Judi Johnson in the MASCC office Workshop sponsors Access Phar maceuticals, Inc. and Helsinn Healthcare, S.A. Workshop presenters & attendees The Mucositis Study Group will now update the mucositis guidelines. Colleagues are invited to volunteer as a scientific reviewer. We will review the literature over the next several months. The updated guidelines will be finalized at a guidelines update meeting to be held on the Tuesday preceding the main MASCC/ISOO meeting in Athens There will be no registration charge for this meeting, which will be open only to persons involved in the guidelines update effort. We expect that each person involved will be a co-author on at least one of the manuscripts resulting from the guidelines update process. If you would like to be involved with the guidelines update, please let me know by (lalla@uchc.edu) Raj Lalla, Chair, Mucositis Study Group Many thanks to all! The expert panel: Douglas Peterson, Dorothy Keefe, and Sol Silverman DONATIONS Contribute to the growth and expansion of MASCC/ISOO's programs and outreach. Give a tax-free donation to a designated fund that will be used to support important programs. Study group projects, web site initiatives, Travel Scholarships, Young Investigator Awards, and Scholarship Memberships are examples of how the fund will be used. For more information visit: 2

3 EXCURSION TO THE ORCA WHALES The word spread who wanted to go for a halfday tour to explore the archipelago of Vancouver for Orca whales. As many as 14 of us joined on this spontaneous trip. We experienced the spectacular scenery of Canadian nature and were there ever Orca whales! ISOO PRESIDENT S MESSAGE I am pleased to provide an update from the ISOO Board, which has been busy on several fronts. We recently completed a thorough analysis of the fiscal and tax status of our Society and are delighted to report that we are on sound footing in all areas. ISOO is currently incorporated in the state of Washington (U.S.A.) and is registered as a nonprofit 501(c)3 organization with the United States Internal Revenue Service. Although we contemplated moving the incorporation of ISOO to the state of Louisiana (where MASCC is incorporated), we decided against it because of cost and inconvenience. Thanks to the leadership of Dianna Weikel, Chair of the Bylaws and Articles Review Committee, and her Committee members, we have revised ISOO s bylaws to be more congruent with those of MASCC. A key feature of the bylaws is the expansion of our Board to seven elected positions (including the new positions of President-elect and two Directors-at-large) and two non-elected positions (Past President and MASCC Liaison). This expanded Board will allow for more ISOO membership participation in the leadership of the Society and also enable continuity over time as Board members come and go. We will be holding the election for a new Board in the coming months, to be installed at the Athens meeting in June We encourage each of you to consider running for the Board look for the call for nominations coming soon in your . The Oral Care Study Group has done a spectacular job with its comprehensive systematic review project. The papers resulting from the Group s work have just been published in Supportive Care in Cancer and we expect they will be helpful for your practice, research, and teaching activities. Finally, we are looking forward to the 2011 Athens scientific meeting which will feature ISOO s usual state-ofthe-science continuing education workshop and several other parallel sessions with content related to exciting developments in oral oncology. We hope to see you there! Sincerely, Deborah B. McGuire, PhD, RN, FAAN President, ISOO 3

4 CONTRIBUTION FROM IRMA VERDONCK-DE LEEUW ONCOQUEST: A tool to improve quality of life and supportive care in cancer patients There is growing interest in using patient-reported outcomes (PROs) to screen for physical and psychosocial problems and the need for supportive care in routine clinical practice. At the Department of Otolaryngology / Head & Neck Surgery of the University Medical Center in Amsterdam, The Netherlands, efficient structured monitoring of quality of life has become available in 2006 by a newly developed touch-screen computer-based data collection system OncoQuest (figure) that is now implemented in routine clinical practice (de Bree 2008; Verdonck-de Leeuw 2009). Patients can independently fill out the EORTC QLQ-C30, and tumor specific modules, and the Hospital Anxiety and Depression Scale (HADS) on a touch screen. It takes on average 9 minutes to complete the questionnaires. Onco- Quest is linked to the hospital patient information system. Data are processed in real-time and care providers can view the results by clear graphics (the well-being profile) on a computer in their consulting rooms and, if indicated, set up an individual supportive care plan. More information: contact Irma Verdonck-de Leeuw i.m.verdonck@vumc.nl OncoQuest: Example of the user interface, and graphic representation. Oral Healthcare for People Living with Cancer MASCC/ISOO contributed to a continuing education course Oral Health Care for People living with Cancer held in London, June 11, The course, organized by Professor Scully was very well-attended with delegates from many different countries. You can find mini-reviews of the different topics included in this course in a special issue of Oral Oncology 46(6), 2010 and in upcoming issues of Dental Update. 4

5 CINDY RITTENBERG LOOKING BACK... What an honor and privilege I have experienced as the first Executive Director of the Multinational Association of Supportive Care in Cancer. Challenged by then President Dr. Richard Gralla in 2001 to take steps to ensure the viability and stability of a great organization known then to a few leaders in supportive care, we first took steps to obtain 501 (c )3 status making MASCC a tax-exempt corporation attractive to donors, grantors, and institutions supporting members. The office was centralized; four data bases converted to one; active membership was required in order to receive member privileges; and policies were codified. A Strategic Planning meeting in 2002 set the tone for the future; MASCC s definition of supportive care came from this session. As we grew, we found Beth Hollen as Web Managing Editor, Judi Johnson as Associate Director in charge of the web site and study groups, and eventually Anne Young as Development Director. Although I worked with seven different meeting planners, Debbie Kurth of BSI served for 5 symposia. Multiple programs and projects grew out of active study groups: antiemetic and mucositis guidelines, the MASCC Antiemesis Tool; The MASCC Oral Agent Teaching Tool; the MASCC Epidermal Growth Factor Skin Toxicity Grading Scale; white paper from the Psychosocial study group just to name a few. A new contract was negotiated with our publisher Springer and a successful transition of Editor-in-Chief of the journal took place. This year a MASCC textbook of supportive cancer care will be published. The International Symposia have been hallmarks of scientific presentations Dear Cindy, Congratulations with the MASCC Distinguished Service Award! ISOO is very thankful for all your help and friendship and wishes you all the best for the future. and networking. A healthy scholarship program is established including scholarship memberships for up to 50 and annual Travel Scholarships for health care providers from low-resources countries; study group chair scholarships for the symposia; and Young Investigator Awards. MASCC members have participated in planning and presenting meetings with supportive care components from the Far East (Thailand and India) to South America (Brazil and Argentina) to the Mid East (Turkey and Israel) to Africa (Kenya) to Eastern Europe (Serbia), not to mention the United States and Europe. The relationship with the International Society of Oral Oncology grew: a MASCC membership confers ISOO membership if desired; ISOO s once separate sessions are now incorporated into the annual meeting; ISOO has board representation and MASCC administrative support. And about the relationship with ISOO What a wonderful group this is! Many may not know that my father was a dentist and I often spent weekends and summers working in his office. This awareness of mouth care transferred into professional practice when, as a clinical nurse specialist, I started a shortlived program of Louisiana State University dental students visiting the oncology unit at the hospital where I worked, and mentored a graduate nursing student to develop an easy oral assessment tool for nurses on the unit (also not around long). How times have changed. With the extraordinary work of ISOO, the importance of pristine research, education, and practice of oral oncology has grown, is recognized as crucial, and now is included in everyday planning for patients with cancer. So I thank you, ISOO members, for your dedication and professional expertise. I have been fortunate to work with dedicated presidents, wonderful MASCC and ISOO board members, study group chairs and talented study group members. I have met, in person or electronically, a few thousand once and present MASCC members from all over the world. And of course, this is the joy of MASCC to meet and learn from your colleagues from all types of backgrounds: different professions, different cultures, different approaches to figure out how to handle cancer and all that the disease encompasses and yet, despite all the differences, my wonderful international colleagues and friends are dedicated to improving the lives of patients, families, and friends affected by cancer. 5

6 KEY COMMENTS FROM ÅGE SCHULTZ, MASCC S NEW EXECUTIVE DIRECTOR I have a keen interest in association management, and after I spent 7 years with the European Society for Medical Oncology (ESMO) as Executive Director, I see a stimulating challenge working for MASCC/ISOO. I fully support the mission of MASCC/ISOO: It s noble and it s right, and I find it attractive to work with and for so many caregiver categories. My vision for MASCC is to expand membership, consolidate its financial platform, increase science and participation in the MASCC/ISOO annual meeting, and to work closely and productively with MASCC study groups, the MASCC and ISOO Boards, and all staff members. For ISOO, it is my intention to promote further integration of oral oncology into the annual meeting. Åge Schultz, DVM PhD Executive Director MASCC aschultz@mascc.org ORAL SUPPORTIVE ONCOLOGY EDUCATION AND SCIENTIFIC ACTIVITIES IN GREECE HASCOCC, The Hellenic HASCOCC, in collaboration Association of Supportive Care of with the local organiz- the Oral Cavity in Cancer ers, co-chairs the MASCC/ ( was founded ISOO Continuing Education in 2005, with members mainly from Workshop at the 2011 the dental and medical field. The Annual Symposium in Athens. Dental Oncology Unit of the Dental More detailed informa- School, University of Athens and tion will follow soon! HASCOCC organize joint educational seminars aimed at dentists, and health Ourania Nicolatou-Galitis, care professionals from other disciplines DDS, MsC, Dr Dent including medical oncology, hematology, radiotherapy, and oncology nicolatou.galitis@lycos.com nursing. Over the past years, several MASCC/ ISOO members have been invited during the biannual scientific symposia to lecture and highlight topics related to oral supportive care in cancer. The Dental Oncology Unit participates in the Committee of Oral Health, Ministry of Health and Social Solidarity, to develop the goals of Hospital Dentistry with special reference to oral health of oncology patients. Upper picture: Dr Doug Peterson introducing Eva Grayzel To the right: Dr Mark Schubert presenting at a recent HASCOCC meeting Save the date! S International MASCC/ISOO Symposium June 23-25, 2011 Athens, Greece ( 6