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Support Care Cancer (2010) 18: DOI /s SPECIAL ARTICLE An oral history of MASCC, its origin and development from MASCC's beginnings to 2009 Cynthia N. Rittenberg & Judith L.
Support Care Cancer (2010) 18: DOI /s SPECIAL ARTICLE An oral history of MASCC, its origin and development from MASCC's beginnings to 2009 Cynthia N. Rittenberg & Judith L. Johnson & Gerald M. Kuncio Received: 8 December 2009 / Accepted: 25 January 2010 / Published online: 10 March 2010 # Springer-Verlag 2010 Abstract Introduction This paper presents an oral history from the mid-1980s to 2009 of the start and evolution of the Multinational Association of Supportive Care in Cancer (MASCC) as seen through the recollections of the founders and early leaders. The growth of the supportive cancer care movement and MASCC s contribution to oncology supportive care is described. Discussion As science was making progress towards better cancer treatment, a group of professionals began to research ways to prevent or mitigate the symptoms and side effects that accompany the disease and its treatments. Joining forces, they created an international, multidisciplinary organization to address and promulgate evidence-based practices of cancer supportive care. Through annual international scientific symposia, a peer-reviewed journal, an accessible website, and study group projects such as guidelines and tools, MASCC is accomplishing its mission. This history was compiled based on interviews by Gerry Kuncio with MASCC's founding members and past presidents as noted in Appendix 1. The manuscript was written and edited by Cynthia N. Rittenberg, RN, MN, AOCN, FAAN, Executive Director MASCC and Judith L. Johnson, RN, PhD, FAAN, Associate Director MASCC. MASCC thanks Jørn Herrstedt for his thorough review and contribution to the history. The document will be updated every 5 years. C. N. Rittenberg (*) MASCC, Metairie, LA, USA J. L. Johnson MASCC, Richfield, MN, USA G. M. Kuncio Pittsburgh, PA, USA Keywords MASCC. Oral history. Oncology supportive care. Evidenced based practice. Symptom management Introduction By the 1960s and 1970s, new drugs and treatments were making tremendous strides in the battle against cancer. Following the successes of the 1960s and 1970s, the field of oncology experienced fewer dramatic gains in therapeutic advances. Drug treatments for solid tumors peaked in terms of overall therapeutic response. Surgery continued to be an often-used intervention for most cancers. Radiation therapy helped many patients live longer, and improvements in technologies ameliorated many of the side effects of this form of treatment. Cancer was no longer a death sentence, but was becoming treatable and, in some cases, even curable. This therapeutic plateau provoked a number of responses. Attention shifted to symptoms and side effects of cancers and their therapies. Quality of life became a key issue as cancer patients found themselves living beyond their cancer diagnosis. Major strides were made in the tools to assess patients' well-being. In nonmedical circles, there was a strong wave of hospice and palliative care movements outside of cancer centers in response to a perceived gap in terminal patients' care and the demand by patients and their loved ones for something better. The palliative care movement initially focused on end-of-life care and the terminal nature of cancer rather than its cure. This movement emphasized pain management, psychological well-being, and end-of-life care. Oncology professionals increasingly recognized that there was a need to design and implement strategies that would provide support throughout all phases of the cancer experience (diagnosis, treatment, posttreatment rehabilitation, and end of life). Many began envisioning a 776 Support Care Cancer (2010) 18: broader approach to cancer care that included both treatment and supportive care. Gradually, the concept of supportive care began to gather momentum at clinical and health-related conferences and professional meetings. These hallmarks in cancer care marked the beginning of what became known as the supportive care in cancer movement and of the beginning of the Multinational Association of Supportive Care in Cancer (MASCC), an interdisciplinary association dedicated to research, policy, and programs to improve the lives of patients and caregivers touched by cancer. This paper presents a history of the supportive care movement in oncology as seen through the eyes of MASCC's founders and early leaders of the MASCC board and committees (Appendix 1). It is not intended to be a complete documented historical account of the organization but rather is an oral interpretive recall by those who were involved in MASCC at that point in time. Described here are the recollections of those interviewed regarding the evolution of supportive care and MASCC's inception and response to this important dimension of the cancer experience. The beginnings of MASCC In Brussels in the mid-1980s, at the Institut Jules Bordet, infectious disease specialist Professor Jean Klastersky questioned how to manage and successfully treat secondary infections experienced by cancer patients. Dr. Stephen Schimpff, who was the Director of the University of Maryland Cancer Center in Baltimore, joined him in this quest. At the same time, at the Tumor Detection and Prevention Centre in St. Gallen, Switzerland, Professor, Dr. Med. Hans-Jorg Senn and chief nurse Agnes Glaus began asking whether cancer patients' care should not be put on equal footing with patient treatment and cure. In New York City, Dr. Richard Gralla, a lung cancer specialist at Memorial Sloan Kettering, observed the dramatic impact that cisplatin had in shrinking tumors, but he also saw patients refuse the treatment rather than face the debilitating emesis and fatigue. Initially, these professionals worked on separate tracks and their field of study was so new it did not even have a name. With a greater number of medical and other professionals in Europe and North America focusing on the overall needs of cancer patients, Senn and Glaus thought it a propitious time to bring people together. In February 1987, they convened the First International Symposium on Supportive Care in Cancer at St. Gallen, Switzerland. Senn chaired the conference and medical sessions while Agnes Glaus, RN and Judi Johnson, PhD, RN, then the President of the (American) Oncology Nursing Society, chaired the nursing sessions. The term Supportive Care, coined by Professor Senn, gave the movement a name and later a journal [1, 2]. This very first meeting drew 700 professionals from 29 different countries. The program was presented in four different languages with simultaneous translations, and the proceedings were published 8 months later [3]. The symposium was a definite success and gave rise to annual meetings that focused on supportive care research, policy, and educational needs. The St. Gallen symposium included features that later would become hallmarks of MASCC. Glaus and Senn organized the meeting with some sessions multidisciplinary and interprofessional. Most sessions were designed to include all professionals, rather than being restricted to one profession, such as sessions just for doctors or just for nurses or social workers. Attendees included representatives of all professions who played a major role in managing the care and well-being of cancer patients doctors of various oncological disciplines (medical, radiotherapeutic, surgical), nurses, social workers, psychologists, pharmacists, and chaplains. Although interprofessional sessions are common today, Glaus and Senn received some criticism at that time. But they insisted that cancer care would be addressed best by using a problem-oriented, rather than a degree-oriented, approach. Sessions would include all people who could bring something to the table. The practice continues in MASCC today. Nine months after the first St. Gallen meeting, Schimpff and Klastersky organized their own symposium on supportive care in cancer in Baltimore in November This symposium, smaller in scope and attendance, focused on medical oncology and less on nursing and palliative issues than had the conference in St. Gallen. In particular, the conference emphasized reducing and managing side effects such as nausea and vomiting, fatigue, and secondary infections. Klastersky and Schimpff organized and held a second conference in June 1988 in Brussels. By alternating their meetings between North America and Europe, they introduced another hallmark that later would be adopted by MASCC. Klastersky and Senn quickly recognized they were working toward a common purpose and that collaboration between them would advance the cause of supportive care in cancer far more than competition. Working together, in 1990, they organized the Second International Symposium on Supportive Care in Cancer that again was held in St. Gallen. That meeting eliminated separate tracks for doctors and nurses, opening sessions to all professions interested in a topic. Klastersky proposed incorporating a society dedicated to supportive care, to be called the International Conference for Supportive Care in Cancer (renamed Multinational Association of Supportive Care in Cancer at incorporation) and headquartered in Belgium. Senn agreed and offered to create and edit a journal for the society (Journal of Supportive Care in Cancer, by Springer Publishers, Heidelberg, Germany, and New York/USA). Thus was born the MASCC in 1990. Support Care Cancer (2010) 18: Growth and development of MASCC in the 1990s Dr. Klastersky assumed the presidency of MASCC, a position he would hold for 10 years, while Dr. Senn served as treasurer and journal editor. Dr. Mario Dicato of Luxembourg completed the group of officers as secretary. They and an informally selected Board of Directors would shape the policies and practices of the new organization and with it the direction of the supportive care in cancer movement internationally. As had been the case with the symposia preceding the formal organization of the society, the newly formed organization emphasized a collegial, multinational, multicultural, multidisciplinary approach. MASCC opened membership broadly to all professionals working in supportive care, and this was reflected in the composition of its initial membership. While the majority of members were physicians, other professionals were well-represented, especially oncology nurses. MASCC's governors saw its initial mission, most profoundly and most fundamentally, as defining, shaping, and advancing the concept of supportive care in cancer. The field of supportive care was still relatively new and loosely defined when the organization was formally incorporated in To put supportive care on the most solid footing possible, MASCC's founders from inception insisted that the society would emphasize evidence-based practice. Advancing the field of supportive care as a discipline in oncology, they believe, could only be achieved through strong, reliable, and valid science. This evidence-based approach reflects two fundamental features that define MASCC: its journal and its study groups. The first Supportive Care in Cancer, MASCC's official journal, was published in January 1993 by Springer with Prof. Senn as the editor-in-chief. Senn envisioned and developed the journal as an academic publication, with high intellectual integrity and independence from outside interests. This would be a journal dedicated to publishing evidence-based articles on supportive care. The table of contents of the initial issue reflects the quality of articles presented (Appendix 2). In his opening editorial, Senn noted: The new journal will try to serve as a forum for rapid communication and excellence in supportive care in cancer [1]. President Klastersky, in an accompanying editorial, wrote: the structures are now available for further interaction and cooperation in a field that is becoming essential in cancer medicine [2]. The journal was accepted into medical libraries on its first year of publication and had an impact factor in its second year, both rarities for a newly established medical journal. The study groups had similar successes, with a number of groups becoming known throughout the oncological community for published guidelines and other scientific studies. MASCC study groups were formed as working groups of peers in order to conduct research or to develop educational programs in specialized fields of supportive care. This was a unique opportunity for young members to join forces with opinion leaders in the interest of supportive care and MASCC. The earliest study groups were organized around the issues championed by the founders of MASCC where scientific and medical studies were already underway infection, antiemetics, pain, and patient education. Study group membership was opened to any MASCC member with an interest in a particular area. MASCC and its study groups considered the purposeful uniting of professionals with differing backgrounds from all parts of the world as a strength that would provide the best approach to advance supportive care. In 2000, the Infection Study Group first published guidelines on assessing the risk of febrile neutropenia in cancer patients undergoing chemotherapy or other cytostatic treatments [4]. What is now referred to as the MASCC Score can be used to identify patients at low risk for serious complications of febrile neutropenia. The Antiemetic Study Group was not far behind the Infection Study Group in developing guidelines. When the first successful antiemetic drugs were introduced in the early 1990s, MASCC's Antiemetics Study Group, chaired by Dr. Richard Gralla, developed guidelines for their use and for measuring success [5, 6]. Gralla and his colleagues had been working on the issue since before MASCC was formed and used the study group as a vehicle to draw together people with the best scientific knowledge to researching prevention of nausea and vomiting associated with chemotherapy. As MASCC grew, not only were more study groups formed, but MASCC also developed a unique liaison with the International Society for Oral Oncology. Scientific studies into oral complications from cancer treatments generated a valuable new partner for MASCC in the 1990s and helped expand the scope and influence of each organization. Through the 1970s and early 1980s, dentists and dental hygienists providing clinical care and conducting research predominantly at cancer centers in the United States had examined the complications cancer treatments caused to the oral cavity and digestive tract. The first meeting of some of these individuals was conducted in Baltimore, Maryland in 1981, chaired by Drs. Douglas Peterson and Stephen Sonis. A second meeting was held in Boston, Massachusetts in 1983, chaired by Drs. Sonis and Peterson as well as Dr. Mark Schubert. The group organized as the Society of Oral Oncology in 1986, and annual meetings were subsequently held each year through Global expansion occurred when this group reorganized as the International Society for Oral Oncology (ISOO) and held its first meeting as the newly constituted group in 778 Support Care Cancer (2010) 18: Concurrently, Dr. Peterson had recently become a MASCC member; this in turn led to discussions within ISOO directed to potentially joining in partnership with MASCC. After careful consideration, ISOO concluded that the best way to grow the science of treating mucositis and other oral complications from cancer and cancer treatment was to join forces with MASCC. Attracted by MASCC's study groups, complimentary mission, holistic approach to cancer care, emphasis on evidence-based findings, and commitment to excellence, ISOO concurred that Dr. Peterson should contact MASCC leadership in 1997 about aligning the two groups. This led to a joint meeting between Prof. Klastersky and Dr. Peterson in 1997 in Brussels, at which time the details of the proposed alliance were addressed. In 1998, ISOO and MASCC agreed to create a strategic alliance between the two organizations, signed by Professor Klastersky and Dr. Phil Fox representing MASCC and ISOO, respectively. The cumulative effect of the organization of MASCC, the formation of study groups, the publication of the journal, the continuation of the symposia, and the strategic alliance with ISOO was profound. The first official meeting of MASCC as an organization was held in Bruges in 1992, followed by another conference in St. Gallen in MASCC's first North American symposium was held in New Orleans in 1994, initiating the tradition of alternating the meeting locations between Europe and North America. A list of MASCC/ISOO symposia can be seen in Table 1. Supportive care was a concept without a name until Only 10 years later, it was an established field of oncology with an international following and reputation Finances and reincorporation By the middle 1990s, MASCC established itself as the leading organization in supportive cancer care. MASCC named and defined the field, brought professionals interested in the topic together at annual symposia, created and implemented evidence-based study groups, and launched a widely cited journal on supportive cancer care. However, challenges arose. First, larger professional oncology organizations (e.g. ASCO, ESMO) began to pay serious attention to the concept of supportive care and encouraged presentations at their annual meetings. Secondly, MASCC did not market itself and thus its membership and conference participation did not grow. Thirdly, MASCC's financial position was precarious. MASCC, with its emphasis on evidence-based studies, had largely eschewed advertising and other forms of funding from large pharmaceutical companies, limiting the revenue the journal could produce. For example, its journal, Supportive Care in Cancer, required significant resources to maintain and grow. For a comparatively small professional association with limited money in its treasuries, the burden placed on MASCC to improve its revenue base was significant. The situation was similar with the annual symposia. Table 1 MASCC symposia chairs and locations Year Location Symposium chairs 1992 Brüges; Belgium Jean Klastersky 1993 St. Gallen, Switzerland Hans-Jörg Senn, Agnes Glaus 1994 New Orleans, USA Richard Gralla 1995 Luxembourg, Luxembourg Mario Dicato 1996 Toronto Ronald Feld 1997 St. Gallen Hans-Jörg Senn, Agnes Glaus 1998 San Antonio Edward Rubenstein 1999 Nice Michèle Viot 2000 Washington Stephen Schimpff 2001 Copenhagen Jørn Herrstedt, Dorit Simonsen 2002 Boston Paul J. Hesketh 2003 Berlin Petra Feyer 2004 Miami Declan Walsh 2005 Geneva Matti S. Aapro 2006 Toronto Ronald Feld 2007 St. Gallen Hans-Jörg Senn, Agnes Glaus 2008 Houston Linda Elting, Eduardo Bruera 2009 Rome Fausto Roila, Maurizio Tonato, Sebastiano Mercadante Support Care Cancer (2010) 18: Although successful at bringing supportive care proponents and practitioners together, the ability of the symposia to produce revenue for MASCC was directly dependent on attracting attendees and keeping costs reasonable. With membership at a standstill, this was becoming increasingly difficult. In 2000, MASCC experienced a leadership transition. Jean Klastersky, a founder of MASCC, a visionary in the field of supportive care and the organization's first and only president, announced his intention to retire after a decade as president. MASCC had no succession plan in place or procedures developed for holding elections. The time was ripe for evolutionary changes in the organization and in its approach to governance policy and procedures. As a first step, MASCC's Board of Directors elected Dr. Richard Gralla the organization's second president. Dr. Gralla was a founding member of MASCC and had worked in the field of supportive care since the late 1970s. Under Gralla's leadership, MASCC made a number of changes designed not only to shore up its finances and governance procedures, but also to increase its visibility, programs, and role in the general oncology scene. The first exec
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