The first meeting of the Nurse Leadership Board (NLB) took place November 4th - 5th, in Dallas, Texas. The scope of this project is to develop broad recommendations for nursing care for myeloma patients, and at the initial NLB Retreat the focus was on Novel therapies. The NLB is an exciting new initiative of the International Myeloma Foundation. The first goal for the Board is to develop guidelines for nurses on the management of side effects associated with the novel therapeutic agents used in treating myeloma patients in order to help nurses in the community to optimize care.
Twenty nurses from the leading centers treatment myeloma patients in the US were selected to participate in the NLB, they represent the leading centers treating myeloma patients in the U.S.The NLB will expand to include nurses internationally, to ensure that patients around the world receive the best care possible.
At this inaugural meeting the founding nurse members were:
Beth Faiman, Cleveland Clinic; Stacey Sandifer, Cancer Center of the Carolinas; Bonnie Jenkins, Myeloma Institute/UAMS; Elizabeth Billoti, St. Vincent's Comprehensive Cancer Center; Emily McCullagh, Memorial Sloan Kettering Cancer Center; Ginger Love, H. Lee Moffitt Cancer Center & Research Institute; Jeanne Westphal, Meeker County Memorial Hospital; Joseph Tariman, formerly of Northwestern University (currently a PhD. candidate at University of Washington); Kathleen Curran, University of Pittsburgh; Kathy Lilleby, Fred Hutchinson Cancer Research Center; Katy Rogers, Sidney Kimmel Comprehensive Cancer Center; Kena Miller, Roswell Park Cancer Institute; Maria Gavino, MD Anderson Cancer Center; Patricia Mangan, Hospital of the University of Pennsylvania; Sandra Rome, Cedars-Sinai Medical Center; Teresa Jahns, Mayo Clinic; Page Tertolotti, Samuel Oschin Comprehensive Cancer Institute.
The IMF was honored to have Deborah Doss from Dana-Farber Cancer Institute acting as the Chairperson for the task force committees, along with fellow members of the executive committee Kathleen Colson, also from Dana-Farber, and Lisa Smith, from the Cancer Center of the Carolinas. Special thanks go to Kathleen and Lisa for their participation as faculty facilitators at this inagural meeting.
The weekend began with a welcome from Susie Novis, President of the IMF and Diane Moran, Senior Vice President Strategic Planning of the IMF, who presented the vision, charter, and meeting focus of the NLB.
Dr. Brian Durie provided an excellent review of novel therapies to set the stage for the important work that the outstanding team of nurses had in front of them. He focused on the new agents Revlimid, Thalomid and Velcade, alone and in combination, and in the various indications for their use.
Lisa Smith presented the spectrum of side effects with novel therapies, which opened the discussion among the participants on their experience. This discussion became the framework for developing the management guidelines. The objective of this session was to present an overview of common side effects often associated with novel therapies. The nurses then reviewed the NLB comprehensive needs assessment survey that had been completed by each participant prior to the retreat, for insight into nursing clinical practice experience, and to explore gaps that may exist between protocol and practice-evident side effects.
The needs assessment survey showed that the treatment protocols with which nurses have the most experience are: Revlimid/dex, Velcade, and Thalomid. Of the common side effects observed by the nurses as indicated on the survey, DVT's are the most challenging to manage.
They identified which side effects impact quality of life and which are life threatening. The Board then identified which were the top five side effects and "the survey said..."
- Top five side effects:
- Peripheral Neuropathy
- Steroid related
- GI related
Dr. Durie then led an interactive discussion on enhancing patient quality of life, focusing on current trends in supportive care. The objective of this session was to provide an overview of commonly used methods of supportive care, to describe trends in protocol-based supportive care, to discuss the NLB members' experience, and to identify and explore gaps that may exist between protocol- based supportive care trends and nursing clinical practice.
Lisa Smith followed Dr. Durie with the discussion on Enhancing Patient Quality of Life. This session's objective was to highlight NLB survey-identified treatment protocols, to discuss NLB side effect management approaches identified in the survey, and to enumerate their experience with specific side effects that occur with the Revlimid/dexamethasone, Thalomid/Velcade, and Velcade/Melphalan regimens, respectively. These experiences and those with other commonly used protocols will become the framework for the guidelines.
After lunch Diane Moran led a discussion outlining some of the major consequences associated with side effects. Of major importance were the questions she posed:
- What are the current side effect management consensus and guidelines?
- What are the nursing needs associated with improving the management of side effects?
Diane then discussed how the NLB would develop and define position statements along with strategic recommendations.
Dr. Durie then led the group through a series of interactive questions that focused on needs assessment that posed such questions such as: "What is the primary role of oncology nurses in management of patient side effects during treatment for myeloma?"
The first day of the retreat ended with Dr. Durie leading the last interactive session. In this session he presented three case studies; case one was an older patient on Revlimid who was experiencing neutropenia. Case two was that of a younger patient who had had a transplant. After 2 years of remission he showed increased IgG levels, so he was now being treated with Velcade. This patient also had chromosome 13 deletion. After 4 cycles of Velcade with an excellent response, he experienced thrombocytopenia (low platelet count). Case three was a patient on frontline Thalomid/dex, with multiple risk factors who was experiencing numerous treatment related side effects. Following each case the question was asked, "How would you manage this patient?"
The Board began the Sunday session by identifying those side effects which they felt were most crucial: those that seriously affected patients' quality of life and those that could be life threatening. The NLB identified the following side effects: peripheral neuropathy, thromboembolic events, myelosuppression, steroids related, and GI related problems. The nurses then went into small breakout groups for in-depth discussions, with a directive to develop an issues statement, a corresponding position statement(s) and strategic recommendations for each side effect. They focused on how to treat these side effects, and were asked to begin the process of reaching a consensus and establish guidelines.
The next steps for the Board are to develop a consensus and to write the Management Guidelines for Nurses Treating Myeloma Patients.
The establishment of the Nurse Leadership Board is truly a groundbreaking endeavor, and the consensus of the Board and the IMF is that the work that they will do will change the lives of myeloma patients around the world. Treatment and management of side effects impacts not only a patient's ability to stay on a therapy but also to gain full benefit from the therapy, and to enhance quality of life. The IMF is honored to collaborate with such an esteemed Board and we look forward to the work that lies ahead.
The IMF would also like to thank the inaugural sponsors of the NLB, Celgene Corporation and Millennium Pharmaceuticals.
Footnote: At the Saturday evening dinner, Susie Novis was extremely pleased to make an exciting announcement to the Nurse Leadership Board. She told them that Celgene Corporation will provide a grant to the IMF to be used to enable each member of the Nurse Leadership Board to attend the XIth Myeloma Workshop that will take place in Greece, June 25th – 29th,, 2007. The room went wild! The IMF thanks Celgene for this incredible and unprecedented opportunity to bring the Nurse Leadership Board to this premier meeting - a learning experience until now not offered to nurses.