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www.mcgill.ca/lymphedema-research 2010 ANNUAL REPORT (January -December 2010) Dr. Anna Towers Director McGill Lymphedema Research Program MUHC-Montreal General Hospital, L10-212 1650 Cedar Avenue Montreal, Quebec Canada H3G 1A4 Tel: (514) 934-1934 ext. 43964 Fax: (514) 934-8415 Email: [email protected] Département d’oncologie l’université McGill/McGill Department of Oncology Centre universitaire de santé McGill/McGill University Health Centre Hôpital général juif-Sir Mortimer B. Davis-Jewish General Hospital McGill Lymphedema Research Program (MLRP) Annual Report 2010 TABLE OF CONTENTS Page MESSAGE FROM THE DIRECTOR……………………………………………………... .3 BACKGROUND…………………………………………………………………………....... .6 McGILL LYMPHEDEMA RESEARCH PROGRAM…………………………………… .7 Organogram………………………………………………………………………..... .7 About the Program…………………………………………………………………. .7 Research Team………………………………………………………………………..8 Research Program…………………………………………………………………...12 Current Lymphedema-Related Research Grants………………………………… 16 Publications…………………………………………………………………………. 16 Invited Presentations……………………………………………………………….. 17 Other Presentations………………………………………………………………….19 Abstracts……………………………………………………………………………...19 OVERVIEW OF THE LYMPHEDEMA CLINICS………………………………………. 20 MUHC - Montreal General Hospital………………………………………………20 MUHC- Royal Victoria Hospital – Cedars Breast Centre………………………21 Jewish General Hospital – Segal Cancer Centre…………………………………22 MUHC LYMPHEDEMA EDUCATIONAL INITIATIVES………………………………23 Education for Health Care Professionals…………………………………………...23 Education for Lymphedema Therapists…………………………………………….23 FINANCIAL REPORT……………………………………………………………………… 24 2 McGill Lymphedema Research Program (MLRP) Annual Report 2010 MESSAGE FROM THE DIRECTOR The past several years has seen increasing interest in survivorship programs within cancer services. Although in Quebec and across Canada they are usually charitably funded, there is a movement to offer the best medical and psychosocial support possible to those that suffer the sequelae of cancer treatment. Lymphedema advocacy groups are being listened to, there is a national and international organization to promote best practice guidelines and improved patient care, and educational programs are being drafted. Buoyed by the cancer-related efforts, those with lymphedema from other conditions are also beginning to have their needs discussed. The McGill Lymphedema Research Program (MLRP) has played a leadership role in these efforts. Nevertheless, at the time of this writing, lymphedema treatments are not covered by Medicare in Quebec. Cancer survivors with this condition either must spend thousands of dollars of their own funds yearly or go untreated. Because of lack of awareness amongst health care professionals, diagnoses are often made late, if at all, and patients are not referred for the physical treatments that are recommended for lymphedema and related disorders. Research programs are rudimentary and many of the basic treatments and prevention strategies require further clinical testing in randomized trials. Our research is helping to document how even modern cancer treatments can have long-term, negative effects on general and limb function, including pain, swelling (e.g., lymphedema), heaviness, and reduced range of motion (ROM). Using breast cancer as an example, our CIHRfunded longitudinal research indicates 76% of our participants (n=719) experienced arm morbidity in some form (i.e. pain, ROM restrictions, lymphedema) at 6-12 months post-surgery. Twelve months later (18-24 months post-surgery), 62% (n=476) experienced arm morbidity. Further, our results indicate that, survivors with some arm pain, 2½-3 years post-surgery, are almost 8 times more likely to experience a loss in productivity, compared to those survivors without pain. Women with some range of motion limitations are 4 times more likely to experience productivity loss 2½-3 years post-surgery. The findings point to the importance of rehabilitation services. These problems are not unique to breast cancer but are found with melanoma, sarcoma, gynaecological, head and neck, prostate and colorectal cancer. The McGill Lymphedema Research program is committed to lead in furthering the lymphedema agenda until the injustices and lack of awareness issues are addressed and resolved. We are here because of the lack of services, our passion for patients, and to advocate on their behalf, to act as a team to change things. We are creating opportunities to do our own clinical research, as well as influencing change in medical and allied health undergraduate curricula. We are forming collaborative research partnerships and are accessing masters and doctoral students who may be integrated into research. Our overall long-term purpose is: 1. To advocate on behalf of lymphedema patients to improve clinical care and ensure that lymphedema best practice standards are integrated within health policy 2. To integrate teaching of the lymphatic system, its pathologies and treatment into the undergraduate medical and allied health curricula 3 McGill Lymphedema Research Program (MLRP) Annual Report 2010 3. To undertake interdisciplinary epidemiological and clinical research and to promote the professional credibility of lymphedema therapy through improving the evidence base This year has seen exciting developments for the McGill Lymphedema Research Program. We are Canadian leaders in cancer-related lymphedema. Dr. Anna Towers is co-chair of the Canadian Lymphedema Framework (CLF) with David Keast of the Lawson Research Institute in Ontario, who represents non-cancer programs. The CLF charitable corporation promotes the development of lymphedema research, education and clinical services in Canada and works with the International Lymphoedema Framework (ILF) to promote development internationally. The CLF co-chairs are on the organizing committee for the June 2011 ILF conference in Toronto. Following the successful Canadian stakeholder meeting last year, the CLF has developed a national strategy for the development of lymphedema clinical services and research, created an advisory board and formed three active volunteer working committees in Research, Education and Partnership Development. The McGill program is expanding and is comprised of clinical staff, educators and researchers at three different sites of the McGill University Health Centre (MUHC) and at the Jewish General Hospital (JGH). Natasha Grant, Casi Shay and Dorit TIdhar are three physiotherapists who are part of the program. Marie-Ève Letellier, a lymphedema therapist and McGill PhD candidate, is pursuing her doctoral studies in lymphedema and arm morbidity research. This will make her one of the few PhD lymphedema clinicians in Canada, augmenting research capacity in this area. Pamela Hodgson is a Masters qualified therapist who provides clinical, administrative and research support. The program has strong national and international links that will enable it to pursue research on topics that have been deemed a priority by stakeholders. Research involvement ranges from prevalence studies to studies on prevention and body tissue composition, as well as participatory action research projects to help fuel development in Canada. Our educational involvement continues to be active at the international, national, provincial and local levels. To fill a grossly unmet need training programs for nurses and for physiotherapists have been developed and conducted by Dorit Tidhar PT, MSc, an international lymphedema expert and trainer from Israel who is spending two years working with us in Montreal under MLRP sponsorship. Dr. Anna Towers is a trainer in the Dr. Vodder School International, coleader of the CLF and active with the ILF scientific committee. Throughout the world, lymphedema training programs have tended to develop in isolation and separate from academic research centres. This needs to be corrected by ensuring that major clinical and educational programs are university based. With ILF and CLF committees, we are working to create standards of training and develop university curricula across Canada. On the advocacy front, members of MLRP are very active in a Quebec Ministry of Health committee that is advising on policy regarding reimbursement of compression garments for lymphedema. Securing adequate space for our programs remains an issue in this era of expanding health care and educational activities in the McGill medical system – all within limited premises. Through a 4 McGill Lymphedema Research Program (MLRP) Annual Report 2010 grant that has recently been awarded to the MUHC for lymphedema program infrastructure development by the Fondation Québécoise du Cancer du Sein, we hope to secure adequate therapeutic and research space to expand our interdisciplinary lymphedema services, educational programs and research activities. We are proud to be Canadian and international leaders in the prevention and treatment of lymphedema and related morbidity caused by cancer treatment. We will continue to develop our young academic interdisciplinary programs to support those who suffer from lymphedema and related conditions. I would like to express my thanks to Dr. Gerald Batist for his encouragement and to Pamela Hodgson of the MUHC Lymphedema Program and Dr. Gayle Shinder of the Department of Oncology for their valuable administrative support. We appreciate the support of the McGill teaching hospitals and their Foundations, and the general public in our endeavours. Anna Towers MDCM, FCFP 5 McGill Lymphedema Research Program (MLRP) Annual Report 2010 BACKGROUND Lymphedema and its Treatment Chronic lymphedema, which is swelling caused by the lymphatic system’s failure to adequately drain fluid and proteins from the interstitial space, is usually due to a complication of cancer treatment. The incidence following breast cancer varies widely in different reports depending on the definition used, differences in measurement techniques, extent of surgery, radiotherapy doses and length of follow-up, but averages 15-25%. These problems are not unique to breast cancer but are found with melanoma, sarcoma, gynaecological, head and neck, prostate and colorectal cancer. As a result of swelling, the limb may feel tight and heavy, and pain may be present because of associated nerve injuries, venous obstruction, and ligament strain. If left untreated, loss of limb function and chronic infections may occur. Lymphedema can cause psychological distress that can have a profound effect on quality of life. The current recommended treatment for chronic lymphedema is Complete Decongestive Therapy (CDT) which aims to improve lymph drainage through existing lymphatic vessels and to encourage collateral circulation. It can be subdivided into two treatment phases: 1- an edema reduction phase of approximately 1 month that involves specific massage techniques (manual lymphatic drainage) and application of non-elasticized bandages, for 5 days per week. Electric pneumatic compression machines may also be used in this stage of treatment. 2- a maintenance phase, which is a life-long commitment to wearing a graduated pressure elastic garment during the day and to performing daily specific remedial exercises. Additional manual lymph drainage and bandaging can be performed as needed during the maintenance phase in those with more severe degrees of lymphedema. Drug treatments are not effective for chronic lymphedema. Therefore, research into physical treatments and methods of self-management are of primary importance in this chronic life-long condition. 6 McGill Lymphedema Research Program (MLRP) Annual Report 2010 McGILL LYMPHEDEMA RESEARCH PROGRAM About The Program The mission of the McGill Lymphedema Research Program is to increase the quality of life of individuals suffering from cancer-related lymphedema. The specific goals of the Program are the following: ● Increase awareness of the morbidity associated with cancer treatments and of lymphedema in particular, and advocate for the development of adequate rehabilitation programs to meet the needs of the affected persons. ● Conduct research on cancer-related lymphedema with a multi-disciplinary group of local, national and international researchers. ● Contribute to the development of international best practice guidelines and promote treatment modalities that are based on current pathophysiological understanding of lymphedema. ● Advocacy to obtain coverage of treatments for lymphedema and related conditions under Medicare. A variety of activities have been undertaken in order to achieve the above goals: Organization of educational programs for health care professionals, government agencies and the public at large, in collaboration with the Lymphedema Association of Quebec. Clinical research on lymphedema prevalence, risk factors, morbidity and treatments, in collaboration with Canadian and international colleagues. Provision of clinical and support services for the prevention, assessment and follow-up of patients with cancer-related lymphedema. 7 McGill Lymphedema Research Program (MLRP) Annual Report 2010 The administrative base for these activities is the Vendôme site of the McGill University Health Centre (MUHC), and the research sites are the MUHC, the Jewish General Hospital (Segal Cancer Centre), and the Cedars Breast Clinic. Research Team The McGill Lymphedema Research Program operates within a multidisciplinary team of clinicians and PhD researchers whose areas of expertise include medical, surgical and radiation oncology, palliative care, sociology and physiotherapy. A) McGill Co-Investigators Anna Towers, MD is Associate Professor of Oncology and Director of the McGill Lymphedema Research Program. She is a palliative care physician with a special interest in lymphoedema and cancer rehabilitation. She trained in lymphedema management under Drs John and Judith Casley-Smith in Australia in 1995. She has been co-ordinating the Lymphedema Program at the McGill University Health Centre for the past 16 years. Since 2009 she is Medical Director of the Dr. Vodder School International where she trains four cohorts of therapists per year in Canada and the USA. She is the Founding Co-Chair of the Canadian Lymphedema Framework which aims to improve access to care for lymphedema and related disorders. She was Director of the Palliative Care Division, McGill University from 1999-2009. She is involved in international palliative care development projects and, since 2004, has been chairing the biennial Montrealbased biennial Congress on Palliative Care. She is the author of numerous articles and book chapters on lymphedema and is recognized as an advocate for the development of lymphedema services in Canada. Marie-Ève Letellier, PhD (Candidate) is a doctoral candidate in Rehabilitation Science where the focus of her work is on lymphedema and other arm morbidity following breast cancer treatment. She is supervised by Dr. Nancy Mayo, with Dr. Anna Towers on her thesis committee, and was awarded the Richard and Edith Strauss Fellowship in Rehabilitation Science for 2009 and 2010 ($22 000) and the Recruitment Excellence Fellowship in 2007 ($5000). Ms. Letellier has been trained in Manual Lymphatic Drainage and Combined Decongestive Therapy - Vodder Method, Aqualymphatic Therapy (Tidhar Method) and Dance Exercise for Lymphedema Treatment (Lebed Method). She pioneered the opening of the Cedars Breast Centre clinical lymphedema assessment and treatment program, and is a Lymphedema Therapist at Physio Extra in Montreal where she provides treatment to an at-risk cancer population and to people suffering from lymphedema. Ms. Letellier has lectured on topics such as cancer and exercise (postgraduate students at Université du Québec à Montréal, Agence de santé et services sociaux de l’Estrie), the lymphatic system and lymphedema (postgraduate students at Université de Sherbrooke) and an introduction to the lymphatic system (to undergraduate students at the Université de TroisRivières). She was also invited to present “Aqualymphatic exercises as an alternative therapy for chronic breast cancer related lymphedema, a randomized controlled pilot study”. Mary Ellen MacDonald PhD is a medical anthropologist who heads the MUHC Qualitative Research Group and who is collaborating on projects related to the development of the Canadian Lymphedema Framework. 8 McGill Lymphedema Research Program (MLRP) Annual Report 2010 Robin Cohen, PhD is an Associate Professor in the Department of Oncology at McGill, and the Research Director for the Division of Palliative Care in the Department of Oncology. Her research interests focus on quality of life issues in those with cancer-related problems. She played a role in the design, data analysis and write-up of the study Aqualymphatic exercise as an alternative therapy for lymphedema management following breast cancer: a randomized controlled pilot study. Franco Carnevale, RN, MSc, PhD, is an Associate Professor in the School of Nursing and the Faculty of Medicine (Pediatrics). He is also an Adjunct Professor in Counseling Psychology and an Affiliate Member of the Biomedical Ethics Unit. His research interests include ethics and psychosocial issues in illness as well as qualitative research methodology. He played a role in the design, data analysis and write-up of the study The Psychosocial Effects of Cancer-Related Lymphedema. Antonio Vigano, MD, MSc is Director of the McGill Nutrition and Performance Laboratory. http://mnupal.mcgill.ca/index.php?option=com_content&view=category&layout=blog&id=16&I temid=61&lang=en-GB Leonard Rosenthall, MD is a professor of radiology at McGill University, erstwhile director of Nuclear Medicine at McGill University Health Centre. Throughout his career, Dr. Rosenthall has been involved in many interdisciplinary research projects inovlving the application of nuclear medicine to many other specialities. He is now collaborating on projects involving DEXA and bio-impedance spectroscopy as measurement tools to evaluate breast-cancer related lymphedema. B) Lymphedema Therapists Natasha Grant, Pht is a physiotherapist specialized in cancer rehabilitation and lymphedema management. Ms. Grant worked with the McGill Cancer Nutrition-Rehabilitation (CNR) program from 2004 to 2007. She spearheaded the JGH Segal Cancer Centre Lymphedema Clinic in April 2007, which was the first hospital-based clinic in Montreal to offer both evaluation and treatment for oncology-related lymphedema. She has training in Combined Decongestive Therapy (Vodder) and Aqualymphatic Therapy (Tidhar method). Ms. Grant has given many lectures on cancer rehabilitation and lymphedema management at the JGH Hope & Cope Wellness Centre, McGill University Physiotherapy Cancer Rehabilitation course, and JGH surgical grand rounds and inservices to oncology clinicians. She will be collaborating with Dr. Mark Basik (JGH surgical oncologist), the principal investigator on a project looking at the Axillary Reverse Mapping (ARM) technique to reduce the incidence of breast cancer related lymphedema. Marco Raffis, Pht is a physiotherapist and kinesiologist specializing in lymphedema treatments and oncology rehabilitation since 2000. In 2000 he was trained in the Vodder method in Victoria BC and obtained a diploma in manual therapy from St-Augustine University Florida. He was on the medical review board of the first International Lymphedema Conference in Montreal in 2001 and has given multiple lectures on lymphedema treatments to medical professionals working in hospitals throughout the province of Quebec and for the Lymphedema Association of Quebec. Casi Shay, Pht is a physiotherapist with 37 years’ experience in both inpatient and outpatient physiotherapy and specializing for the past ten years in lymphedema management and outpatient 9 McGill Lymphedema Research Program (MLRP) Annual Report 2010 breast cancer rehabilitation services. She is a member of the team in the MUHC Lymphedema Clinic and has recently become interested in body composition and lymphedema. She is involved in protocol development using dual-energy x-ray absorbimetry (DEXA) to assess fat mass in breast-cancer lymphedema, with Dr Anna Towers and Dr Antonio Vigano as co-investigators. She has training in Combined Decongestive Therapy (Klose Norton) and Aqualymphatic therapy (Tidhar Method) and is certified with the Lymphedema Association of North America (LANA). In addition to giving lectures at the McGill School of Physical and Occupational Therapy as well as at community organizations, she coordinated educational and support group services for the Lymphedema Association of Quebec since 2004. Dorit Tidhar, MPt, Pt, is a physiotherapist and Casley-Smith trained therapist who co-ordinates the lymphedema teaching program at the McGill University Health Centre in Montreal and works in the MUHC Lymphedema Clinic. Her permanent lymphedema practice is in Israel, where she has co-ordinated the lymphedema program for one of the four health networks and been an active advocate for lymphedema development and research. She is the creator of Aqua Lymphatic Therapy –Tidhar method. She teaches courses for therapists and is actively involved in several lymphedema treatment-related research projects. Pamela Hodgson, MSc, RMT is a lymphedema therapist trained in Complex Decongestive Therapy (Dr. Vodder School). She is research assistant to Dr. Anna Towers and assists in the McGill University Health Centre Lymphedema Program. She has designed and delivered educational workshops on lymphedema to healthcare practitioners and to the public. She is currently working with Dr. Towers and others to develop lymphedema-focused research projects and is a founding member of the Canadian Lymphedema Framework. C) Other University Co-investigators and Graduate students Robert D. Kilgour, Ph.D., FACSM is a Professor and the Chair of the Department of Exercise Science at Concordia University and Associate Director of the McGill Nutrition and Performance Laboratory (MNUPAL). His primary research area examines the factors that contribute to cancer-related fatigue. He is currently exploring how the neuromuscular system influences fatigue in cancer. He is also interested in the assessment of breast cancer related lymphedema (BCRL) and describing how specific therapeutic interventions could modify BCRL by reducing swelling, inflammation, and fatigue, and ultimately enhancing the quality of life in cancer patients. Anne Newman, BSc, MSc (c) holds a Bachelor's degree in Exercise Science with a specialization in Clinical Exercise Physiology and is currently enrolled in the Exercise Science Master’s program at Concordia University under the supervision of Dr. Robert Kilgour. Her research interests include segmental body composition assessment and investigating the efficacy of treatments for women with breast cancer-related lymphedema. She works as a research assistant for MNUPAL collecting data on the assessment of BCRL using Dual-energy X-ray Absorptiometry and multi-frequency bioelectric impedence spectrometry. She has presented a research poster of her thesis proposal Comparing the effectiveness of three differerent treatments for women with breast cancer-related lymphedema. at the International Graduate Course sponsored by Concordia University and the University of Copenhagen. Anne’s previous work experience includes seventeen years as a shiatsu practitioner in which time she developed 10 McGill Lymphedema Research Program (MLRP) Annual Report 2010 lectures and taught in the clinic that she co-founded. D) Program Annual Reports and Website Gayle A. Shinder, PhD is the research grants coordinator for the McGill Department of Oncology and also works on a wide range of special projects for the various Programs in the department. She has worked with Dr. Towers on a number of projects since 2001 including the development and management of the McGill Lymphedema Research Program (MLRP) website (www.mcgill.ca/lymphedema-research), and the compilation of the 2005, 2007-2008 and 20082009 MLRP Annual Reports. E) McGill Collaborators Marc David, MD: McGill Department of Oncology, Radiation Oncology, MUHC Marie Duclos, MD: McGill Department of Oncology, Radiation Oncology, MUHC Segio Faria, MD: McGill Department of Oncology, Radiation Oncology, MUHC David Fleiszer, MD: McGill Department of Oncology, Surgical Oncology, MUHC Carolyn Freeman, MB, BS: McGill Department of Oncology, Radiation Oncology, MUHC Christine Lambert, MD: McGill Department of Oncology, Radiation Oncology, MUHC Antoine Loutfi, MD: McGill Department of Oncology, Surgical Oncology, MUHC Catherine Milne, MD: McGill Department of Oncology, Surgical Oncology, MUHC David Roberge, MD: McGIll Department of Oncology, Radiation Oncology, MUHC Francine Tremblay, MD: McGill Department of Surgery, MUHC F) Canadian and International Co-Investigators and Collaborators Christine Moffatt, RN, PhD, University of Glasgow Roanne Thomas-MacLean, PhD, University of Saskatchewan Elizabeth Quinlan, PhD, University of Saskatchewan Thomas Hack PhD, University of Manitoba Winkle Kwan, MD, University of British Columbia Baunkje Miedema, PhD, Dalhousie University Sue Tatemichi MD, Dalhousie University Andrea Tilley PT, Dalhousie University Martina Reddick RN, St. John’s, Newfoundland Research Program Our main research development program initiative focuses on promoting a research strategy for Canada through the Canadian Lymphedema Framework. Ongoing research projects include: 1. Development of a Canada-wide collaboration of lymphedema stakeholders to promote lymphedema awareness through improved education and research. 2. The development and assessment of interdisciplinary programs with educational tools and strategies to prevent lymphedema in women after breast cancer treatment. 3. A pilot study looking at the role of an interdisciplinary lymphedema team in a tertiary referral centre. 4. Assessment of the prevalence of and risk factors for developing lymphedema, pain and functional problems following breast cancer treatment. 11 McGill Lymphedema Research Program (MLRP) Annual Report 2010 5. Research on various exercise treatments for lymphedema. 6. Research on body composition of patients with lymphedema. 7. Comparing three methods for treatment of breast cancer-related lymphedema. At the present time, treatments for lymphedema are not covered under Medicare. The research programs conducted by the McGill Lymphedema Research Program, and its Canadian and international co-investigators and collaborators, will help provide a solid evidence base required to convince policymakers that it is a priority to fund prevention and treatment programs for lymphedema and related conditions. Current Research Studies 1. Development of the Canadian Lymphedema Framework The recently formed Canadian Lymphedema Framework (CLF), co-directed by Dr. Anna Towers of McGill and Dr. David Keast of the Lawson Health Research Institute, London, Ontario, is an academic and patient stakeholder collaboration, part of an international initiative to promote research, best practice guidelines and lymphedema clinical development worldwide. The CLF works closely with the International Lymphedema Framework (ILF) which is based in the UK. The CLF is and incorporated charity, led by academic lymphedema experts and patient advocates from the Lymphedema Association of Ontario and the Lymphedema Association of Quebec. In 2010 the CLF appointed an Advisory Board with representatives from a variety of stakeholders from across Canada and developed a strategic plan to define education, research and awareness development strategy for Canada. Volunteers from across Canada and representing different health care professions, researchers, industry and patient advocates met in November 2010 to organize working groups in Education, Research and Partnership Development to implement the strategic plan with the long term goal of improved management for lymphedema in Canada. 2. Long term disability after breast cancer: building an empirical foundation for education, prevention and rehabilitation CIHR-Funded Study, 2009-2014. This is a renewal of the 2004-2009 study entitled Arm morbidity after breast cancer: Building a foundation for education, prevention and rehabilitation. PI: Roanne Thomas-MacLean, University of Saskatchewan. Co-Investigators: Anna Towers, McGill University; Thomas Hack, University of Manitoba; Winkle Kwan, University of British Columbia; Baukje Miedema and Sue Tatemichi of Dalhousie University; Andrea Tilley, St. Joseph’s Hospital, Atlantic Health Sciences Corporation McGill Collaborators: Marc David, Marie Duclos, Sergio Faria, Carolyn Freeman, Christine Lambert, Antoine Loutfi, Catherine Milne, David Roberge, Francine Tremblay, David Fleiszer We are conducting a prospective cohort study with a sample size of 745 breast cancer patients who are followed for 5 years. The project began in January 2005. Participant accrual concluded in 2008, and data collection will end in September 2013. The purpose of this study is to create interdisciplinary knowledge about the impact of arm morbidity after breast cancer treatment, through the generation and testing of hypotheses about arm morbidity and its relationship to overall health and psychosocial well-being. 12 McGill Lymphedema Research Program (MLRP) Annual Report 2010 Our original study, Charting the course of arm morbidity after breast cancer: A prospective, longitudinal follow up (Phase I; 2005-2008) addressed 3 forms of arm morbidity affecting the upper quadrant: lymphedema, pain, and limited ROM. Phase I data provided insight on the early impact of arm morbidity, however the long-term impacts (i.e., 2-5 years post-surgery) are even more important and understudied. Phase II (2009-2014) will examine women’s experiences of arm morbidity using an interdisciplinary, mixed-methods approach, and will study etiology, impact and disability. Our six objectives in Phase II are: 1. To continue to chart the course of lymphedema, pain, and ROM every 6 months, providing rigorous documentation of the incidence of arm morbidity in breast cancer survivors; 2. To continue to identify possible triggers of arm morbidity; 3. To further document, measure, and analyze psychological and social impacts of arm morbidity; 4. To compare provision of care and access to appropriate treatment across demographic groupings; 5. To qualitatively explore the long-term impact of arm morbidity; and 6. To create a detailed model capturing the impact of arm morbidity. Our study is the first to involve the collection of descriptive, longitudinal data on arm morbidity following breast cancer treatment. Our findings show aspects of arm morbidity require a long study period before the natural history and psychosocial impact can be fully documented and analyzed. Longitudinal data demonstrating incidence rates, etiology, disability, psychosocial impact, and access to treatment will aid policy makers in the development of multidisciplinary rehabilitation programs to address problems in a holistic fashion and in a timely manner. Furthermore, our findings are relevant for the majority of the cancer population, as breast, prostate, gynecological, and head/neck cancer patients may experience treatment effects (from lymph node dissection and radiotherapy) such as lymphedema, pain, and loss of function. 3. The role of an interdisciplinary lymphedema team in a tertiary referral centre: a pilot project Funded by the Lymphedema Association of Quebec Our vision is for adequate and well-timed lymphedema services to be available in Quebec and for these services and rehabilitation aids to be covered by Medicare. This requires the awareness and the support that will lead to the creation of interdisciplinary clinics that provide prevention, assessment and treatment services as outlined in the International Best Practice Guidelines. This present project focuses on: 1. developing appropriate interdisciplinary lymphedema services at the MUHC, with outcomes that are transferable to other cancer centres; 2. developing training programs for health professionals, and in particular for therapists and nurses who will offer prevention information to all cancer patients at risk, and who will provide treatment services to those in the palliative phase and to those who require home care. The eventual outcome would be appropriate and well-timed information and rehabilitation services to the cancer population living with lymphedema and related conditions. 13 McGill Lymphedema Research Program (MLRP) Annual Report 2010 4. Axillary Reverse Mapping in Breast Cancer (ARM) PI: Dr. Mark Basik (Surgical Oncology JGH) Collaborator: Natasha Grant 5. Aqualymphatic exercise as an alternative therapy for lymphedema management following breast cancer: a randomized controlled pilot study Marie-Ève Letellier, Anna Towers and Robin Cohen (This is the research project entitled Evaluation of group remedial exercises for chronic breast cancer related lymphedema. St. Pierre D, Towers A, Cohen R, Collet JP. which was funded by a Canadian Cancer Society Feasibility Grant, 2005-2008.) Background: Cancer rehabilitation is an understudied area in which palliative care programs are taking an interest. Life-long lymphedema is a prevalent complication of breast cancer treatment, producing significant morbidity. Drugs are not effective for lymphedema; therefore, research into physical treatments and methods of self-management are important. Although case series suggest a benefit with daily remedial exercises, and water-based exercises are theoretically superior, no randomized controlled trials (RCTs) have been published in this area. Objectives: To investigate the feasibility of conducting a larger RCT aimed at assessing the effectiveness of water-based group remedial exercises. Methodology: We conducted a randomized controlled single-blind pilot study in which 25 women with breast cancer related lymphedema – 24 mild stage (less than 25% difference) and one moderate stage – from the McGill University Hospital Centre Lymphedema Clinic were allocated into a standard treatment or standard treatment plus water-based exercise group, for 12 weeks. They were evaluated prior to and following a 12 week intervention period, and following a further 12 week follow-up period. We measured changes in arm swelling using waterdisplacement volumetry and limb girth circumference. We assessed pain (SF-MPQ), upper extremity function (DASH), range of motion, grip strength and quality of life (FACT-B). Structured qualitative interviews were conducted regarding the impact of the water exercises. Results: Weekly aqualymphatic exercises were acceptable to patients: of 13 participants, 8 (62%) participated in at least 9 of 12 sessions. The qualitative data suggest that women find valuable support in exercising with other women suffering from lymphedema. Some reported that they experienced the aqualymphatic exercices as the equivalent of receiving manual lymph drainage. The quantitative data suggest that there are no differences between the intervention and the control groups. Further pilot studies, recruiting women with moderate lymphedema, are required in order to justify a full scale RCT to assess the method’s effectiveness. 6. Assessing body composition in arms of women with breast-cancer related lymphedema: a pilot study Anna Towers, Antonio Vigano, Leonard Rosenthall, Anne Newman, Pamela Hodgson, Carol Shay, Robert Kilgour Chronic edema due to lymphatic insufficiency may occur in any body part as a result of different disease states as well as surgical and therapeutic interventions. Breast cancer-related 14 McGill Lymphedema Research Program (MLRP) Annual Report 2010 lymphedema (BCRL) is a common form of swelling that occurs in approximately 25% of women following surgical removal and/or radiation of axillary lymph nodes (Petrek et al., 2001). Initially, the swelling is due primarily to the accumulation of extracellular fluid (ECF); however, over time the composition of the ECF compartment can change and transform into fibrotic lesions and abnormal fat deposition. As a result of this tissue transformation it is often difficult to effectively treat later stages of lymphedema. Although decongestive therapies tend to eliminate excess interstitial water and proteins from the ECF space, they have little impact on the elimination of fat. Measurement devices that are both reliable and precise in assessing tissue composition are urgently needed in order to develop more accurate staging, and effective treatment for lymphedema. Dual-energy X-ray Absorptiometry (DXA) and Multifrequency Bioelectric Impedance Spectroscopy (BIS) are two measurement devices that have been shown to be relatively safe and simple to assess tissue composition during the progressive development stages of lymphedema. This observational pilot study aims to gather preliminary data regarding the feasibility of using DXA and BIS to assess fat composition and fat/fluid ratio between dominant and non-dominant arms of women with unilateral BCRL. Twenty women with BCRL and a clinical diagnosis of stage 1 or stage 2 lymphedema will be recruited from the MGH Lymphedema Clinic. Using DXA and BIS, a trained technician will measure participants in a test retest sequence. Our aim is to use this pilot data to plan future studies to evaluate and predict the effect of different lymphedema treatment modalities. 7. Comparison of the efficacy of three methods of treatment for women with breast cancerrelated lymphedema: a pilot study Anna Towers, Anne Newman, Dorit Tidhar, Leonard Rosenthall, Antonio Vigano, Robert Kilgour, Pamela Hodgson, Carol Shay The incidence of breast cancer related lymphedema (BCRL) is estimated at 6-83% for women who undergo mastectomy, axillary node dissection and/or radiation treatment. The resulting physical (e.g., pain, numbness, and fatigue) and functional (e.g., strength and range of motion) symptoms place a constant and significant burden on the quality of life of cancer survivors. These negative outcomes create the need for effective treatments. The purpose of this pilot study is to compare the efficacy of three treatments for women with breast cancer-related lymphedema using 3 methods of volume measurements. Study Objectives: The study objectives are: 1) To assess the immediate and short-term effects of three different treatments for BCRL (e.g., manual lymphatic drainage (MLD), aqua lymphatic therapy (ALT), and a Casley-Smith based exercise routine (CSER), 2) To determine which of the three treatments is most effective in maintaining or reducing limb volume over a 24 hour period, 3) To record any changes in physical symptoms after each treatment and, 4) To ascertain which of the three modalities the women prefer. Methodology: This is a pilot study (n=15) where we will recruit women between the ages of 35 and 75 with Stage 1 or 2 lymphedema from the McGill University Health Center Lymphedema Clinic. All women will be randomly assigned to complete all three interventions. Each intervention will be completed once and will last approximately 45min. There will be a 2 week “washout” period between interventions to eliminate any carry-over effects of the previous treatment. Procedures: Bilateral limb measurements to estimate changes in limb volume will be 15 McGill Lymphedema Research Program (MLRP) Annual Report 2010 done using Dual-energy X-ray Absorptiometry (DXA), multi-frequency, bio-impedance spectroscopy (MFBIS) and circumferential arm measures (CAM). The Lymphedema Breast Cancer Questionnaire (LBCQ) will be used to subjectively gauge the degree of heaviness, tightness, numbness, and aching experienced by the women. Measurements will be taken pretreatment, and 3-10min, 30min, 60 min and 20-24 hrs following treatment. After completion of the final intervention a three question questionnaire on modality preference will be administered. Current Lymphedema-Related Research Grants Defining Research and Development Priorities for Lymphedema Care in Canada: Launching of the Canadian Lymphedema Framework. Towers A, Keast D, MacDonald ME, Kennedy A, Pritzker R. Canadian Breast Cancer Research Alliance CBCRA KT-link grant no. 020637. $10,353. 2009-2010 Long-term disability after breast cancer: Expanding an empirical foundation for education, prevention and rehabilitation. Thomas-MacLean R, , Kwan W, Hack T, Miedema B, Tatemichi S, Tilley A. Towers A. CBCRA/CIHR operating grant. $587,852. 2009-2014 Evaluation of an interdisciplinary program for lymphedema prevention and treatment. Towers A. Lymphedema Association of Quebec. $40,000. 2008-2010 Publications Peer-Reviewed Journals Thomas F. Hack, Winkle B. Kwan, Roanne L. Thomas-MacLean, Anna Towers, Baukje Miedema, Andrea Tilley, and Dan Chateau. Predictors of arm morbidity following breast cancer surgery Psycho-Oncology (2010) Psycho-Oncology, Psycho-Oncology 19: 1205–1212, Nov 2010. Thomas-MacLean R, Towers A, Quinlan E, Hack T, Kwan W, Baukje Miedema, Andrea Tilley & Paul Graham. “This is a kind of betrayal”: A Qualitative Study of Disability after Breast Cancer. Current Oncology. 16 (3) 26-32, 2010. Roanne Thomas-MacLean, Paul Spriggs, Elizabeth Quinlan, Anna Towers, Thomas F. Hack, Sue Tatemichi, Baukje Miedema,Winkle Kwan, Andrea Tilley. Arm Morbidity and Disability: Reporting the Current Status from Canada. Journal of Lymphoedema, 5(2):33-38, 2010. Tidhar D., Katx-Leurer, M. Aqua lymphatic therapy in women who suffer from breast cancer treatment-related lymphedema: a randomized controlled study. 2010. Support Care Cancer. 18, 383-92. Towers A, Hodgson P, Shay C, Keeley V. Care of the palliative patient with cancer-related lymphedema. Journal of Lymphedema, 5(1), 72-80, 2010 Other Publications Norton S., Towers A. Adapting CDT in palliative patients. International Lymphedema Framework, Palliative Care Template for Practice, March 2010 16 McGill Lymphedema Research Program (MLRP) Annual Report 2010 Kennedy, A and Hodgson, P. Moving towards Canadian standardization for training and are of lymphedema. Rehab and Community Care. 2010. Vol 19. 3. 10-14 Book Chapters Towers A. “Diagnosing dying”, Chapter in Rocker G, Puntillo K, Azoulay E and Judith Nelson J book End of Life Care in the ICU, Oxford, Oxford University Press, 2010, p.1-3, ISBN 978-010-923924 Invited Presentations Anna Towers La compression médicale pour le lymphoedème et les problèmes veineux. Drummondville, Département de médecine génerale CME, Jan 26, 2010 What do I say?: Communication in palliative patients with lymphedema. Plenary presentation. 2nd International Lymphedema Framework Conference, Brighton UK 22-25 Mar 2010 An integrated approach to lymphedema prevention and management, CanSupport, McGill University Health Centre, Montreal, April 13, 2010 New developments on disability, prevention and standards of care, Victoria BC Vodder School Refresher Course, Victoria BC May 9, 2010 Supportive care for cancer patients at the MUHC: fostering interdisciplinary synergies between clinical practice and research. Palliative Care Week presentation, McGill University, Montreal Chair, Session on lymphedema and palliative care. 2nd International Lymphedema Framework Conference Brighton UK 22-25 May 2010 New developments on disability, prevention and standards of care, Victoria BC Vodder School Refresher Course, Stowe, Vermont USA, May 30, 2010 La compression médicale pour le lymphoedème et les problèmes veineux. St-Jean, Quebec, Département de médecine génerale CME, Jun 17, 2010 Nouveaux développements en recherce sur le lymphoedème, Vodder Revision Course, Montréal, Québec Aug 30, 2010 New Developments in Research on Compression and Lymphedema, Conference of the Lymphedema Association of Quebec, Aug 30, 2010 Diagnosis and treatment of chronic edemas: the use of compression therapy. West Island Palliative Care Residence, Quebec. Oct 26, 2010 Best practice guidelines and the role of the Canadian lymphedema Framework. Wound Care Course for Nurses. University of Victoria, British Columbia, Nov 1, 2010 17 McGill Lymphedema Research Program (MLRP) Annual Report 2010 Implementing Best Practice Guideline for Lymphedema. Annual conference of the Lymphedema Association of Ontario. Toronto Nov 20, 2010 Decongestive therapies for lymphedema and self-management strategies. Annual conference of the Lym0hedema Association of Ontario. Toronto Nov 20, 2010 Therapy of malignant lymphedema. Annual conference of the Lymphedema Association of Ontario. Toronto Nov 20, 2010 Expert panel on lymphedema management. Annual conference of the Lymphedema Association of Ontario. Toronto Nov 20, 2010 Marie-Ève Letellier Le cancer du sein: lymphoedème et activité physique. Agence de santé et services sociaux – Estrie, April, 2010 Aqualymphatic exercises as an alternative therapy for chronic breast cancer related lymphedema, a randomized controlled pilot study. Training session for lymphedema therapists in Aqualymphatic Therapy, Montreal, October, 2010. Dorit Tidhar Exercise and lymphedema. Lecture at the Lymphedema Association of Quebec conference. Montreal, April 2010 Aqualymphatic Therapy Research, Vodder School recertification, Vermont, USA. May 2010 Hydrotherapy for orthopedic swelling, Vodder School recertification, Montreal, August 2010 Clinical reasoning based on graphs in bandaging therapy for lymphedema, Lymphedema association of Quebec, August 2010 Aqua Lymphatic therapy: Another way of managing your lymphedema. Lymphedema Association of Ontario conference, Toronto, November 2010. Clinical reasoning in the management of lymphedema therapy based on measurements graphs – workshop for health care professionals. Lymphedema Association of Ontario conference, Toronto, November 2010. Aqua Lymphatic Therapy: An overview of the method, principles, examples and suggestions on how to use this medium in lymphedema treatment. Workshop for health care professionals and patients, Lymphedema Association of Ontario conference, Toronto, November 2010. Pamela Hodgson Self-bandaging workshop for Patients. Lecture demonstration. Lymphedema Association of Quebec conference, Montreal, August 2010. 18 McGill Lymphedema Research Program (MLRP) Annual Report 2010 Anne Newman Lymphedema. Third year pathophysiology course, Rehabilitation and Exercise Science Program, Concordia University, October 2010 Other Presentations Newman A, Towers A, Tidhar D, Hodgson P, Shay C, Rosenthall L, Vigano A, Kilgour R. Comparing the effectiveness of three differerent limb volume reduction and maintenance treatments for women with breast cancer-related lymphedema. International Intensive Graduate Course in Exercise and Clinical Physiology, Concordia University, Montreal, Oct 25-29, 2010. Tidhar, D Aqualymphatic therapy training for lymphedema therapists, Training session (7 days) Lymphedema Association of Quebec, Montreal October 2010. Tidhar, D. Rehabilitation after cancer treatments - minimizing the risk of developing lymphedema. McGill University Physiotherapy Program October 2010 Tidhar, D. Measurement lab: Assessing lymphedema, McGill University Physiotherapy Program October 2010 Abstracts Dorit Tidhar. Aqualymphatic therapy in women with breast cancer related lymphedema. Oral presentation at National Lymphedema Network 2010 Conference Orlando USA, September 2010. 19 McGill Lymphedema Research Program (MLRP) Annual Report 2010 OVERVIEW OF THE LYMPHEDEMA CLINICS 1. McGill University Health Centre (MUHC) - Montreal General Hospital: MUHC Lymphedema Clinic The MUHC Lymphedema Clinic, coordinated by Dr. Anna Towers, has been operational since 1994 and was integrated with the Palliative Care Hospital in 1999. In 2009 the clinic moved into the research facility of the McGill Nutrition and Performance Laboratory (MNUPAL), Blvd de Maisoneuve, next to the Vendome Metro station. The MUHC Lymphedema Clinic is the largest medical referral centre for cancer-related lymphedema in Quebec. We help chronic lymphedema patients manage the physical, psychosocial, and financial consequences of their problem on an ongoing basis and facilitate the use of as many proven treatment modalities as possible. Since January 2008, with the assistance of the Lymphedema Association of Quebec, the clinic has expanded to include a varied interdisciplinary team. The team approach offers each patient an opportunity to be seen by different health professionals all trained in lymphedema care. The clinic emphasizes patient education and self-management. Population served Referrals come from throughout Quebec, across the four RUIS territories, and occasionally from Ontario and the Maritimes. There are daily consultations via email and telephone with lymphedema therapists and patients from all over Canada. The full MUHC clinic operates one day per week, with a half day twice a month for follow-up and educational sessions. Over 800 patients with cancer treatment related lymphedema are followed. 50% of patients have lymphedema following breast cancer, 10% melanoma, 8% sarcoma, 7% lung, 4% gynecological, 4% lymphoma and 16% other. This clinic is referred the more complex cases. 10 % of patients have advanced metastatic disease and are seen conjointly with the palliative care staff in the Day Hospital. Many of the patients have concurrent morbidity such as pain and functional problems. Many also need support to be reintegrated into their previous work or they need help to find different work or to get disability benefits. Dr. Towers also offers formal expertise in legal cases involving lymphedema. Staff and volunteers Since January 2008 a team of volunteers, (two are members of the Lymphedema Association of Quebec (LAQ)) and the third is a McGill kinesiology student) offer indispensable services, welcoming patients, offering information, answering questions and providing psycho-social support where necessary. Since April 2008 a physiotherapist trained in lymphedema treatment and an exercise trainer have been funded through a grant from the Lymphedema Association of Quebec. The physiotherapist assists Dr. Towers in evaluating and educating patients, using clinical decision-making based on volumetric measurements. The exercise trainer provides information about safe and effective exercise tailored to the needs of each individual patient. In 2010 a receptionist was a welcome addition to the clinic. Patients can now call a dedicated number to make appointments. Assessment and treatment process The interdisciplinary team assesses and educates patients in self-bandaging, risk reduction, lifestyle change, exercise and other self-care measures. Patients are diagnosed using the 20 McGill Lymphedema Research Program (MLRP) Annual Report 2010 International Society of Lymphology criteria and an individual treatment plan is developed for each patient following international Best Practice Guidelines.1 Patients are referred to community therapists and fitters for treatment and to various movement and exercise classes. Patients are followed in the clinic according to need, usually quarterly in the first year and then yearly, if in remission from their cancer. In 2010 self-bandaging instruction was offered to patients but full lymphedema treatments were not provided at the clinic because of lack of space and staff. Dr. Towers provides medical support to community therapists for follow-up, often via telephone. Lack of resources does mean that patients without financial means and/or private insurance do not receive the care that they require. In 2011 the clinic will be augmented with a newly-trained lymphedema therapist from the MUHC Physiotherapy Department and it is anticipated that some treatment services will be provided to those who can attend three sessions a week and who would be unable to access treatment otherwise. Other services Dr. Towers frequently is called to assess patients for lymphedema within the hospital and since 2008 one of the team has provided lymphedema care to patients and educated nurses in basic lymphedema bandaging techniques and other aspects of lymphedema care. At the MUHC Outpatient Wound Clinic, outpatients with lower extremity lymphedema or mixed edema receive compression therapy from a nurse with a specialty in wound care. An estimated 200 patients are treated annually. Outpatients with post-breast cancer upper extremity lymphedema can be referred for treatment with compression pump therapy. The Royal Victoria Hospital has two pumps in use about 45 weeks of the year while the Montreal General Hospital has one pump that is occasionally used. Pumps are less often used in modern lymphedema therapy and alternative treatments involving compression bandaging are preferred, according to international practice guidelines. 2. McGill University Health Centre (MUHC) - Royal Victoria Hospital-Cedars Breast Centre The Royal Victoria Hospital Lymphedema Clinic, located at the Cedars Breast Centre, began seeing patients in September 2008 thanks to the generous support of the Montreal General Hospital Foundation. The clinic is run by Marie-Ève Letellier, M.Sc. Kinanthropology, a kinesiologist who has training in Combined Decongestive Therapy (Vodder), Aqualymphatic Therapy (Tidhar), and Exercise Therapy following breast cancer (Lebed). The clinic sees predominantly breast cancer patients, although patients with melanoma are also seen. The mandate of this clinic is to see patients before and (if necessary) after surgery for breast cancer and follow them over time, to screen for arm or shoulder problems. The clinic provides Lymphoedema Framework: Best Practice for the Management of Lymphoedema. International Consensus. London MEP Ltd, ISBN 0-9547669-4-6. 2006 (Dr. Towers was a member of the international advisory board that drafted these practice guidelines.) 21 McGill Lymphedema Research Program (MLRP) Annual Report 2010 women with information about the possibility of developing arm morbidity (such as pain, reduction of range of motion, loss of strength, and/or lymphedema) and encourages them to seek treatment early should signs appear. If the patient experiences arm morbidity they are either treated by Marie-Ève Letellier or are referred to a therapist or other health professional depending on the problem. Those who require intensive therapy have access to two to three sessions per week of Combined Decongestive Therapy for approximately two to four weeks. The maintenance phase is then initiated where the patient is encouraged to continue with skin care, an exercise program, and daily use of compression garments. Patients are also referred to the clinic for prevention of arm and shoulder problems, and the appropriate risk-reduction practices are given as well as a prescription for a compression garment for all exercise, repetitive activities and air travel. The clinic sees between 8 and 12 patients per week. More complex lymphedema cases/patients are referred to Dr. Anna Towers at the Montreal General Hospital. Patients are encouraged to participate in exercise groups offered by the community including Tai Chi/Qi Gong, AquaLymphatic Therapy (ALT), and the Lebed method, and can pursue further CDT management in the private sector. The Lymphedema Association of Quebec publishes a list of resources. 3. Jewish General Hospital (JGH) - Segal Cancer Centre The Jewish General Hospital Lymphedema Clinic, which began in April 2007 with funding from the JGH’s Weekend to End Breast Cancer, is the first hospital-based clinic in Montreal to offer both the evaluation and treatment of lymphedema secondary to cancer-related treatments. The clinic is run by Natasha Grant, Pht, a physiotherapist who is specialized in cancer rehabilitation and lymphedema management with training in Combined Decongestive Therapy (Vodder) and Aqualymphatic therapy (Tidhar). Dr. Bertha Fuchsman, a palliative care physician, is available as a consulting physician. The mandate of this program is to serve oncology patients at the JGH. Referrals are made by the patient’s medical, surgical and/or radio-oncologist. The patient population comprises those treated for cancer of the breast (81.7%), gynecological cancer (14%), melanoma (2.6%), and other (1.7%) The physiotherapist is able to consult directly with the treating physician, their primary nurse and/or any health care professional that may be needed, such as a social worker for psycho-social interventions. Each patient undergoes an initial evaluation with the physiotherapist after which they are seen every 3 months for follow-up. Those for whom intensive phase treatment is indicated, based on circumferential measurements and physical impairment, are offered 2 sessions/week of CDT (Combined Decongestive Therapy) for approximately 4-6 weeks. The maintenance phase is then initiated where the patient is encouraged to continue with skin care, an exercise program, and daily use of compression garments. There are a number of patients who are referred to the clinic for prophylaxis and the appropriate risk-reduction practices are given as well as a prescription for a compression garment for all exercise, repetitive activities and air travel. Patients are given a list of resources in the community including the Lymphedema Association of Quebec and the JGH Hope & Cope Wellness Centre. The Wellness Centre is an excellent opportunity for patients to exercise with other oncology patients with adapted programs such as Yoga, Qi-Gong, and supervised gym 22 McGill Lymphedema Research Program (MLRP) Annual Report 2010 programs. Community exercise groups are promoted including Tai Chi/Qi Gong, AquaLymphatic Therapy (ALT), and the Lebed method. Since its inception, the clinic has grown and now follows over 400 patients. It currently functions 3 days per week. MUHC LYMPHEDEMA EDUCATIONAL INITIATIVES Education for Health Care Professionals In 2010, through the financial support of the Lymphedema Association of Quebec we have begun implementation of phase 2 of our strategic plan to improve patient care through wider education of health care professionals on lymphedema recognition, risk reduction, treatment and self-management information. One hundred and four health care professionals (physiotherapists, radiation oncology technicians and doctors) from the Jewish General Hospital, the Royal Victoria Hospital and the Montreal General Hospital and in the McGill Physiotherapy Program attended workshops in Risk Reduction and in Rehabilitation after Cancer. Thirty-two physiotherapists in the private sector attended a rehabilitation workshop. Response to the workshops was extremely positive: evaluations rated the workshops as excellent or very good in relevance of content, quality of sessions, and overall rating. Many participants requested that more time be available in future workshops and requested workshops in wound care and lymphedema, lymphedema therapy and manual lymph drainage, lymphedema in vascular disease, self-management. The aim in the coming year is to develop and train a core team (6-10) of lymphedema specialisteducators who will conduct systematic education programs within the milieux hospitaliers de Québec, the CSSS centres and soins domiciles and appropriate university programs. Workshops will focus on understanding of the lymphatic system, recognition of lymphedema, evidence based prevention education, and resource availability of treatment (referrals). Awareness and education will also be promoted through presentations and workshops at conferences. Education for Lymphedema Therapists Lymphedema treatment continues to be primarily delivered through certified lymphedema therapists in the community. It is important to provide up-to-date evidence-based workshops and seminars for those lymphedema therapists working privately in the community, outside the research and teaching resources of the university and hospital-based system. Our goal over the next few years is to provide high quality continuing education programs for certified lymphedema therapists. In 2010 three workshops were held in English on implementing international best practices, clinical decision-making and minimizing the risk of developing lymphedema, and one in French on implementing international best practices. Fifty certified lymphedema therapists attended the workshops and evaluated them as excellent or very good in terms of relevance of content, quality of sessions and overall rating. Therapists also asked for workshops to be given in the future on wound care, garment fitting, risk reduction, exercise and lymphedema, self-management, measurement and self-bandaging. 23 McGill Lymphedema Research Program (MLRP) Annual Report 2010 FINANCIAL REPORT Funding requirements for MUHC Assessment and Treatment Facilities (2011-2013) The MUHC Clinic, presently housed at the Vendome site and open one day per week, and a half day twice a month, requires permanent premises to house the interdisciplinary team and to expand its services and research activities to five days per week. The Cedars Breast Clinic at the Royal Victoria Hospital presently offers the services of a lymphedema therapist 3 days per week. With funding this program could be expanded to 5 days per week to better serve this population as well as the melanoma and sarcoma patients who develop lymphedema. Staff training and cost of continuing education preparation and dissemination 2011-2012 4 therapists (RN, PT)@ $5000- 2-week $20,000 lymphedema course fee and expenses 2010-2012 Preparation of continuing education $25,000 courses for therapists, community nurses inservice (to be given throughout Quebec) Annual costs Membership fees international societies $2,200 Presentation and participation in $9,500 research conferences $56,700 Total Funding is required to develop pilot project studies in: risk factors for lymphedema development $15,000 assessment of lymphedema therapies $15,000 Facilities for rehabilitation research within the McGill network of hospitals Our program has been advocating for adequate rehabilitation facilities for a number of years. With increasing competition for resources in tertiary-level institutions rehabilitation programs are often not prioritized for funding in spite of the increasing rate of cancer survivorship and treatment-related problems that require research and clinical services. Often, health care research focuses on pharmaceutical treatments. There is no medication that can help lymphedema. Physical treatments tend to be under-investigated and under-funded in our medical culture. One of the aims of our program is to advocate for adequate facilities for research into physical therapies. The following facilities are required: Rehabilitation pool Lymphedema treatments include specific aquatic exercises which require access to a heated rehabilitation pool. This could be shared with other rehabilitation programs. There are no pools in the Montreal area that are available. The Lucie Bruneau Rehabilitation Centre has a pool that they use during the day and rent at night but which is always completely booked. The Lethbridge Centre pool is also fully utilized and not available to us. 24 McGill Lymphedema Research Program (MLRP) Annual Report 2010 The pool that we require for lymphedema therapy and for research into aquatic exercise regimes needs to be kept at a temperature of 31-33 degrees Celsius since the exercise movements are not aerobic. This is considerably warmer than a standard pool. Dimensions of 13 by 8 metres would allow us to run groups of 6-8 patients at a time. The ideal depth is from 1.2 to 1.4 metres. The estimates for building a pool are very variable depending on dimensions, location and existing building structure and range from $100,000 to $180,000 Rehabilitation gyms (MUHC and JGH) There is presently no dedicated gym space for cancer rehabilitation programs. In addition, the following equipment is needed for the research and education programs: 1 Multi-Frequency Bio-Impedance Spectrometer (MFBIS) $18,400 1 Impedimed (impedance tissue measures) $3,500 1 Tissue Tonometer $1,000 3 Computers (with printers) 3 x $2,200 $6,600 Computer software $2,000 Educational materials $3,000 Total $34, 500 This report was written by Pamela Hodgson, MSc, and reviewed and edited by Gayle A. Shinder, PhD, Research Grants and Project Coordinator in the Department of Oncology, McGill University. 25