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    • www.mcgill.ca/lymphedema-research 2005 ANNUAL REPORT 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: anna.towers@muhc.mcgill.ca TABLE OF CONTENTS Page 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 2005 MESSAGE FROM THE DIRECTOR……………………………………………………...3 BACKGROUND…………………………………………………………………………...... 4 ORGANOGRAM……………………………………………………………………………. 5 RESEARCH TEAM………………………………………………………………………….5 CURRENT RESEARCH GRANTS………………………………………………………... 6 NEW RESEARCH PROGRAM……………………………………………………………. 7 PUBLICATIONS……………………………………………………………………………. 7 BOOK CHAPTERS…………………………………………………………………………. 8 PRESENTATIONS………………………………………………………………………….. 8 INVITED SPEAKERS………………………………………………………………………. 9 LOCAL, NATIONAL AND INTERNATIONAL COMMITTEES……………………… 9 JOURNAL EDITOR/REVIEWER………………………………………………………… 10 TEACHING………………………………………………………………………………….. 11 MUHC LYMPHEDEMA CLINIC…………………………………………………………. 14 FINANCIAL REPORT………………………………………………………………………14 APPENDIX (Publications and Abstracts) 2
    • McGill Lymphedema Research Program (MLRP) Annual Report 2005 MESSAGE FROM THE DIRECTOR 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 lymphedema. ● Conduct research on cancer-related lymphedema with a multi-disciplinary group of local, national and international researchers. ● Promotion of treatment modalities that are based on our current pathophysiological understanding of lymphedema. ● Patient advocacy. A variety of activities have been undertaken in order to achieve the above goals:  Organization of educational programs and materials 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 assessment and follow-up of patients with cancer- related lymphedema. The bases for these activities are Pavilion H of the Sir Mortimer B. Davis-Jewish General Hospital (which is also the location of the Lymphedema Association of Quebec), and the Montreal General Hospital site of the McGill University Health Centre (MUHC). The research sites are the MUHC, the Sir Mortimer B. Davis-Jewish General Hospital, Cedars Breast Clinic and Ville Marie Breast Center. The Research Program focuses on the assessment of treatments for lymphedema and the psychological and social effects of the condition on patients. Current research projects include:  Assessment of arm morbidity following breast cancer treatment, including prevalence, risk factors, symptoms  Effects of water-based exercises for lymphedema  Psychological and social effects of cancer-induced lymphedema in men and women who have been treated for various kinds of cancer Other research areas that we are developing include the following:  The development and evaluation of a kineosiology program for lymphedema prevention.  Evaluation of new methods to assess the condition and function of the affected arm in lymphedema patients.  Clinical trials to assess the currently available treatments as well as new treatments. At the present time, treatments for lymphedema are not covered under Medicare. The research programs conducted by the McGill Lymphedema Research Program and Canadian and international co- investigators and collaborators, will provide a solid evidence base required to convince policymakers that it is a priority to fund prevention programs and treatments for lymphedema. Anna Towers, MD, CM, FCFP 3
    • McGill Lymphedema Research Program (MLRP) Annual Report 2005 BACKGROUND Lymphedema is a failure of the lymphatic system whereby inadequate drainage of fluid and proteins results in the swelling of tissues. This swelling is typically in the arms and legs, however, other areas such as the breast, genitals and gut, can be affected as well. Lymphedema is common in patients who have undergone surgical procedures, removal of lymph nodes or radiation therapy for the treatment of various cancers such as breast, ovarian, prostate, testicular, bladder, colon, and head and neck cancer, as well as melanomas. As a result of swelling, the affected limb might feel tight and heavy, and there may be pain due to associated nerve injuries, obstruction of veins, and strain on ligaments from the increased limb weight. If left untreated, there is a risk of loss of limb function as well as chronic infections. In addition to the physical effects, lymphedema also causes psychological distress on the patient, which also has a profound effect on quality of life. Disfigurement, embarrassment and depression may result in the patient minimizing social interactions with others. Moreover, the physical effects of lymphedema may necessitate a change in life style and activities, further affecting the psychological well-being of the patient. Current treatment available for lymphedema is the Complete Decongestive Therapy (CDT), which is a combination of the following: 1) Manual Lymph Drainage (MLD) which was introduced by Dr. Emil Vodder from Denmark and involves gentle massage to improve lymphatic circulation. 2) Compression bandaging of the affected limbs. 3) Orthotic support (compression garments) to reduce swelling, 4) Nutrition-low fat, high fibre diet, 5) Specialized exercises to encourage lymphatic circulation and drainage, 6) Skin care-moisturizing the skin, avoiding cuts and scrapes and making sure there are no rashes. Post-surgery lymphedema is a quality of life issue for cancer survivors. As survival rates for cancer increase, more survivors will be left with therapy-related complications of cancer treatments, lymphedema being the most common. Unfortunately, it is an under-diagnosed and often untreated condition because of lack of research and lack of awareness among health care professionals, perhaps due to the fact that the treatment methods are physical therapies rather than drugs or surgery. Physicians and medical students do not receive specific training in lymphatic diseases and their knowledge of treatment options is poor. Many patients are told to just “live with the condition”. Few treatment programs exist and little research has been done to assess the effectiveness of the physical treatment methods that are currently recommended. Prevention strategies have also not been studied. It was only quite recently that measurement tools to efficiently assess limb volume (Perometer) and fluid compartments in tissues (impedance measures), have become available. With the development of these tools, a new area of therapy evaluation research has been opened. We can now test novel therapies with measurement technology that provides immediate feedback on the effectiveness of various physical treatments. We can also assess cancer patients to try to determine who is at risk for developing lymphedema, and develop and test prevention strategies for these patients. 4
    • McGill Lymphedema Research Program (MLRP) Annual Report 2005 McGILL LYMPHEDEMA RESEARCH PROGRAM Sir Mortimer B. McGill University McGill University Davis- Department of Health Centre Jewish General Oncology (MUHC) Hospital Cedars Breast McGill Lymphedema Clinic Research Program Lymphedema Association Ville-Marie Breast Director: Dr. Anna Towers Of Quebec Center Education Clinical & Research Awareness Support Services Advocacy McGill Researchers Canadian and Co-Investigators Collaborators International Dr. Anna Towers Dr. Marc David Dr. Catherine Milne Co-investigators Dr. Robin Cohen Dr. Marie Duclos Dr. John Keyserlingk and Collaborators Dr. Diane St.-Pierre Dr. Carolyn Freeman Dr. Francine Tremblay Dr. Roanne Thomas-MacLean Dr. Jean Paul Collet Dr. Julio Guerra Dr. Wilson Miller Dr. Thomas Hack Dr. Franco Carnevale Dr. Christine Lambert Dr. Winkle Kwan Mary Ann Dalzell, Pht Dr. Thierry Muanza Dr. Baunkje Miedema Dr. David Fleiszer Dr. Sue Tatemichi Dr. Antoine Loutfi Ms. Andrea Tilly, PT Dr. Richard Margolese Ms. Dorit Tidhar, PT RESEARCH TEAM The McGill Lymphedema Research Program has a multidisciplinary team of clinicians and PhD researchers whose areas of expertise include medical oncology, surgical oncology, radiation oncology, palliative care, psychiatry and physiotherapy. A) McGill Co-Investigators Anna Towers, MD, is an Associate Professor in the Department of Oncology at McGill and is the Director of the Palliative Care Division at McGill University and the McGill University Health Centre (MUHC). She is an Associate Physician of the Palliative Care Service at the MUHC and is also the Coordinator of the Lymphedema Clinic at the MUHC. Dr. Towers is the Director of the McGill Lymphedema Research Program. She is interested in the evaluation of prevention and treatment strategies for Lymphedema. Diane St-Pierre, PhD, is Director of the Graduate Program in the McGill School of Physical and Occupational therapy. Her research interests are related to the effects of exercise in either preventing or restoring loss of function with disuse. Two projects are under way; the first one is a pilot study to investigate the effects of group exercise in the control of lymphedema following breast cancer and the 5
    • McGill Lymphedema Research Program (MLRP) Annual Report 2005 second one is investigating the physical predictors of fatigue in patients suffering from lung cancer. She is also interested in e-learning and is part of a consortium to develop a virtual campus in health. Robin Cohen, PhD, is an Assistant 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. Jean Paul Collet, MD, PhD, is a Professor in the Department of Epidemiology and Biostatistics and the Scientific Director of GEREQ, a Provincial Program which promotes Good Clinical Practice standards in Quebec. Dr. Collet’s research interests include pain management and the evaluation of complementary and alternative therapies. 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. Mary-Ann Dalzell, MSc, Pht, is a Faculty Lecturer in the School of Physical and Occupational Therapy and a Program Coordinator for Rehabilitation Oncology at McGill University. Her research interests include exercise for Lymphedema, exercise in advanced cancer populations and functional profiling of advanced cancer patients. B) McGill Collaborators Marc David, MD: McGill Department of Oncology, Radiation Oncology; MUHC Marie Duclos, MD: McGill Department of Oncology, Radiation Oncology; MUHC Carolyn Freeman, MB, BS, FRCP(C): McGill Department of Oncology, Radiation Oncology; MUHC Julio Guerra, MD: McGill Department of Oncology, Radiation Oncology; SMBD-JGH; MUHC Christine Lambert, MD: McGill Department of Oncology, Radiation Oncology; MUHC Thierry Muanza, MD, MSc, FRCP(C): McGill Department of Oncology, Radiation Oncology; MUHC David Fleiszer, MD: McGill Department of Oncology, Surgical Oncology; MUHC Antoine Loutfi, MD: McGill Department of Oncology, Surgical Oncology; MUHC Richard Margolese, MD: McGill Department of Oncology, Surgical Oncology, SMBD-JGH Catherine Milne, MD: McGill Department of Oncology, Surgical Oncology; MUHC John Keyserlingk, MD: McGill Department of Surgery, St. Mary’s Hospital Francine Tremblay, MD: McGill Department of Surgery, MUHC Wilson Miller, MD, PhD: McGill Department of Oncology, Medical Oncology, SMBD-JGH C) Canadian and International Co-Investigators and Collaborators Roanne Thomas-MacLean, 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 Dorit Tidhar, PT, Israel CURRENT RESEARCH GRANTS 1. St. Pierre D, Towers A, Cohen R, Collet JP. Evaluation of group remedial exercises for chronic breast 6
    • McGill Lymphedema Research Program (MLRP) Annual Report 2005 cancer related lymphedema. Canadian Cancer Society Feasibility Grant. ($34,380). 2005-2006. This study will assess an aquatic exercise program that has been developed in collaboration with colleagues from Israel. Recruiting will start in the Spring and Summer of 2006. 2. Thomas-MacLean R, Kwan W, Hack T, Miedema B, Tatemichi S Towers, A. Charting the course Of arm morbidity following breast cancer treatment: a prospective follow-up study. CIHR Operating Grant. ($438,336). 2004-2007. This is a Canadian-wide study where 1000 women who have been recently diagnosed with breast cancer will be recruited and followed for five years to investigate incidence, risk factors for developing lymphedema as well as quality of life and social factors. 500 out of the 1000 subjects to be recruited for this multisite Canadian study will come from the McGill University Health Centre and the Sir Mortimer B. Davis-Jewish General Hospital. In 2005, 130 patients were recruited at the McGill site. 3. Towers A, Carnevale F. A qualitative study of the psychosocial effects of cancer-lymphedema related to cancer treatment McGill Department of Family Medicine ($6,000) and the Royal Victoria Hospital Foundation ($4,500). 2004-2005. This qualitative study is in the reporting stage. NEW RESEARCH PROGRAM A new study in collaboration with the Cedars Breast Center (MUHC-Royal Victoria Hospital) will assess interventions (group and individual) to prevent arm morbidity following breast cancer surgery. Of specific interest are arm and shoulder mobility problems, lymphedema, and pain syndromes. Recruitment to this Program, which combines both education and therapy, is expected to be 100 women. Funding is currently being sought for a kinesiologist who will set up and administer the program. PUBLICATIONS Xu W, Towers A, Collet JP. Traditional Chinese Medicine in Cancer Care: Perspectives and Experiences of Patients and Professionals in China ECC-2005-0074, submitted to the European Journal of Cancer Care. In Press. *Lee V, Cohen SR, Edgar L, Laizner AM, Gagnon A. Meaning-making and the Psychological Adjustment to cancer: development of an intervention and pilot results. Oncology Nursing Forum. In Press. *Lee V, Cohen SR, Edgar L, Laizner AM, Gagnon AJ. Meaning-making intervention during breast or colorectal cancer treatment improves self-esteem, optimism, and self-efficacy. Social Science & Medicine. In Press. Carnevale, F.A. (2005). Ethical dilemmas in critically ill children: toward a model of ‘rapprochement’. Neonatal, Paediatric and Child Health Nursing Journal, 18(2), 2-3. Carnevale, F.A. (2005). Families are not visitors: Rethinking our relationships in the ICU. Australian Critical Care, 18(2), 48-49. Carnevale, F.A., Troini, R., Rennick, J., Davis, M., & Alexander, E. (2005). To keep alive or let die Parental Experiences with Ventilatory Decisions for their Critically Ill Children. Pediatric Intensive Care 7
    • McGill Lymphedema Research Program (MLRP) Annual Report 2005 Nursing, 6(2), 12-15. Macdonald, M.E., Liben, S., Carnevale, F.A., Rennick, J.E., Wolf, S.L., Meloche, D., & Cohen, S.R. (2005). Parental perspectives on hospital staff acts of kindness and commemoration after a child’s death. Pediatrics, 116, 884-890. Chambers-Evans, J. & Carnevale, F.A. (2005). Dawning of awareness: The experience of surrogate decision-making at the end of life. Journal of Clinical Ethics, 16(1), 28.45. Carnevale, F.A. (2005). The palliation of dying: A Heideggerian analysis of the “technologization” of death. Indo-Pacific Journal of Phenomenology, 5(1), 1-12. Carnevale, F.A. (2005). Ethical care of the critically ill child: A conception of a ‘thick’ bioethics. Nursing Ethics, 12(3), 239-252. Ducharme, C., Carnevale, F.A., Clermont, M.S., & Shea, S. (2005). A prospective study of adverse reactions to the weaning of opioids and benzodiazepines among critically ill children. Intensive and Critical Care Nursing, 21, 179-186. BOOK CHAPTERS Towers A. (2005). Lymphedema, Chapter in MacDonald N, ed. Palliative Care – A Case-Based Manual, 2nd edition, Oxford University Press. Cohen SR. Quality of life assessment in palliative care. In: Palliative Medicine, E. Bruera, I. Higginson, C. von Gunten, and C. Ripamonti eds. Edward Arnold Limited, London, England, In Press. Carnevale, F.A. (2005). Key issues in critical care nursing. In M. Fink, E. Abraham, J-L. Vincent, & P. Kochanek (eds.), Textbook of critical care (5th ed.). Philadelphia: Elsevier. 2217-2223. PRESENTATIONS Thomas-MacLean R, Kwan W, Tilley A, Towers A, Miedema B, Tatemichi S, Hack T, “Establishing Criteria for the Diagnosis of Arm Morbidity after Breast Cancer.“ Poster, Cancer Research Day, December 8, 2005. Saskatoon, SK. Thomas-MacLean R, Hack T, Kwan W, Towers A, Tilley A, Tatemichi S, Miedema B, 2005. “The Puzzle of Arm Problems after Breast Cancer: Putting the Pieces Together ”, Presentation at the Life after Breast Cancer Conference, October 21, 2005. Saskatoon, SK. Thomas-MacLean R, Towers A, Miedema B, Tatemichi S, Hack T, Kwan W, Tilley A, 2005. “Arm Morbidity after Breast Cancer: Implications for Primary Care.” Poster with published abstract, 33 rd Annual Meeting: North American Primary Care Research Group (NAPCRG), October 15-18, 2005. Quebec City, PQ, pp. 153. Thomas-MacLean R, Miedema B, Hack T, Tatemichi S, Towers A, Kwan W, Tilley A, 2005. “Toward Understanding Arm Morbidity after Breast Cancer.” Poster, 4 th World Conference on Breast Cancer, June 8-12, 2005. Halifax, NS. Anna Towers. Lymphedema Research in Canada. Annual Meeting of the Lymphovenous Association of Ontario, Toronto, November 2005. 8
    • McGill Lymphedema Research Program (MLRP) Annual Report 2005 Anna Towers. Progress in Lymphedema Research, Vodder Therapy Refresher Course, Laval, Quebec September, 2005 Anna Towers. Update on lymphedema management and research. Lymphedema Therapy Refresher Course, Dr. Vodder School of North America, Laval, Quebec, September 2005 Towers A, Cohen SR, Gagnon B, Vigano A, Gouttebel M-C. Recherches en soins palliatifs et contrôle des symptoms: tendencies actuelles et défis – Université McGill. 15e Congrês du réseau de soins palliatifs du Québec, 26-27 mai 2005. Anna Towers. Lymphedema related to cancer: who cares? Presentation to Palliative Care McGill Rounds, February 2005 Anna Towers “Coping with lymphedema” Meeting of the Lymphedema Association of Quebec, January 2005 Anna Towers. “Lymphedema related to cancer treatment”. McGill University Radiation Oncology Rounds, January 2005 Cohen SR and *Hamilton W. Self-reported change: correspondence between McGill Quality of Life Questionnaire scores and semi-structured interviews. International Society for Quality of Life Research Annual Meeting, San Francisco, October 19-22, 2005. Robin Cohen. Total Pain: Cancer Pain and Quality of Life. Canadian Pain Society Annual Meeting, Halifax. Abstract in Pain Res Manage 2005; 10:75. May 12, 2005. Robin Cohen. Quality of life in the terminally ill: Relationship between psychological symptoms, physical symptoms, and existential well-being. JGH Psychiatry Research Meetings. February 9, 2005 Franco Carnevale. (With Macdonald, M.E.) Qualitative health research and the “Illumination Test”: Answering the “So What?” with qualitative inquiry. Presented at The First International Congress of Qualitative Inquiry, Urbana, Illinois, May 2005. Mary-Ann Dalzell, Lung Cancer Rehabilitation, Conference: Cancer & Rehabilitation: Evidence-Based Practice, Virginia Commonwealth University, October15, 16, 2005. Swanson T, Dalzell MA, Small D, Kreisman H, MacDonald N, St Pierre D. Physiological correlates of cancer-related fatigue. 11th World Congress on Lung Cancer, Barcelona, Spain, July 2005. INVITED SPEAKERS Dorit Tidhar, PT. Course on Aqualymphatic Therapy. July 8-13, 2005. Sponsored by the Lymphedema Association of Quebec. Trained some of the research assistants and collaborators for the remedial exercise study. LOCAL, NATIONAL AND INTERNATIONAL COMMITTEES Anna Towers ● Executive Committee, Advisory member, Réseau des Soins Palliatifs du Québec ● Scientific and Research Advisory Board, Hope and Cope Wellness Center, JGH ● Scientific Advisory Committee, Canadian Lymphedema Foundation ● Clinical Advisory Council, ProCure Alliance ● Advisory Board, Lymphovenous Association, Canada 9
    • McGill Lymphedema Research Program (MLRP) Annual Report 2005 ● Founder and Chairperson, Réseau Universitaire Québecois des Soins Palliatifs (RUQSP – regrouping palliative care chiefs from the four Quebec medical schools) ● Advisory Board, Lymphedema Association of Quebec ● Advisory Board, Advocacy Section, Canadian Palliative Care Association ● Chair, 16th International Congress for the Care of the Terminally Ill, Montreal. 2005-2006 Diane St-Pierre ● McGill’s representative: Administration Committee of the “Campus Virtuel en Santé” ● School’s representative: Comité de suivi du programme de formation for the driving program. This is with the SAAQ, l’Ordre des ergothérapeutes du Québec and Constance Lethbridge Hospital ● School’s representative : Comité de gestion de l’entente for the driving program, on-going. Same as above for the comité de suivi Robin Cohen ● Canadian Hospice Palliative Care Association, Research Advisor ● Wellness Centre, Jewish General Hospital, Research Advisory Board, Member ● Member of VON Canada-University of Ottawa Bereavement Think Tank ● International Workshop: Recommendations for Assessing the Quality of End-of-Life Care. Invited Workshop Participant (limited to 23 worldwide). March 18-22, Rockefeller Centre Bellagio, Italy ● 16th International Congress on Care of the Terminally Ill, Montreal, September 25-28, 2006. Executive and Organizing Committee:Determining Congress content and schedule, Sole Organizer of Research Program, Chair of Research Abstract Review Committee, Chair Research Workshops and all Research Forums Franco Carnevale ● Founder and moderator of PICU-Nurse-International (an international pediatric critical care nursing egroup). ● Ethics and pediatric home care. Workshop moderator at the Children and Youth Home Care Network Forum, Banff, February 2005. JOURNAL EDITOR/REVIEWER Anna Towers Reviewer McGill-Queen’s University Press Oxford University Press Journal of Palliative Care Canadian Family Physician Robin Cohen Editorial Board Journal of Palliative Care American Journal of Hospice and Palliative Care Reviewer Supportive Care in Oncology Franco Carnevale Editor Pediatric Intensive Care Nursing. 10
    • McGill Lymphedema Research Program (MLRP) Annual Report 2005 Editorial Boards Journal Of Child Health Care (International editorial board) Canadian Journal Of Nursing Research (Ethics, values, & decision-making editor; reviewer) Intensive & Critical Care Nursing (International advisory board) Pediatric Critical Care Medicine (Editorial review board) Dynamics - The Official Journal Of The Canadian Association Of Critical Care Nurses (Editorial review board; Pediatric critiquer) Reviewer Critical Care Medicine Nursing Inquiry Nursing Philosophy American Journal Of Critical Care TEACHING Anna Towers Palliative Care McGill Program a) Undergraduate ● Osler Fellow, McGill University ● Group Leader- Introduction to the Patient Course (140 hours per year) ● ICMB-Seminars on Symptom Control Issues and Ethical Issues in Palliative Care (24 hours per year) ● ICMB- Seminars on communication (12 hours per year) ● ITP- Palliative Care Seminar- Introduction to the Patient Course (15 hours per year) b) Postgraduate ● Supervision of McGill oncology, geriatrics, elective residents and international trainees, MUHC Palliative Care Service. ● Communication course, surgical residents ● Pain and symptom control seminar series, Medical Residency Program ● Instructor, Multidisciplinary Oncology Course for McGill Postgraduate Residents in Medical Oncology, Radiation Oncology and Surgical Oncology ● Presentation: Arm morbidity following breast cancer treatment, Oncology Postgraduate Core Training Program, McGill University, September, 2005 c) Research Trainees ● Supervised Dr. Wanning Xu, 2002-2005 Postdoctoral qualitative research project: Traditional Chinese Medicine in Cancer Care. ● MSc Reviewer, 2005: Tara Swanson, MSc, School of Physical and Occupational Therapy, McGill University Diane St-Pierre a) Undergraduate Courses ● Winter 2005: Movement 1 PHTH-236: 5 hours ● Fall 2005: Movement Science and Practice, PHTH-235: 52 hours b) MSc Students ● Laura Abbatiello: The effects of an antishear bar on isokinetic strength of the knee extensors. ● Tara Swanson. Co-supervisor: Mary-Ann Dalzell. Physiological correlates of cancer-related fatigue in advanced non-small cell lung cancer patients. ● Sarah Marshall. Co-supervisor: Kathy Berg. The effects of exercise cessation on physical and bio-psychosocial factors in an elderly institutionalized population. ● Josiane De Serres. Course-work only. 11
    • McGill Lymphedema Research Program (MLRP) Annual Report 2005 ● Lucy Perreira. New student. Robin Cohen a) Supervision of Student Research Projects ● Annemarie Hoffman. Supervision of research project for NURS 630 course. 2005. The Factors That Contribute to Quality of Life in an End Stage Medical Population. ● Stephanie Carpentier. Summer student research project. 2005. Quality of Life Assessment in Oncology. How Do Patients Interpret the Items? ● Geneviève Taylor. Summer student research project. 2005. Quality of Life Assessment in Oncology: How Do Family Caregivers Interpret the Items? ● Nicolas Thibodeau-Jarry. Summer student research project. 2005. Content Validity and Acceptability of Patient and Family Caregiver Quality of Life Instruments for an End-Stage Medical Population. b) PhD Students ● Anita Mehta, School of Nursing, 2003-Present. Family Caregivers of Palliative Care Patients at Home: The Pain Management Process. ● Marianne Olivier-d’Avignon. Social Work, Université de Laval. (Second mentor for Strategic Training Program, Primary Supervisor: Serge Dumont). 2005-Present. Development of a Needs Assessment Instrument for Siblings of Terminally Ill Children. ● Lisa Chan, School of Nursing. 2005-Present. Nursing Relationships With End-Stage Medical In-patients. ● Pierre Laplante. School of Nursing. 2005-Present. End of Life for Muslims: Culture is not Monolithic. c) Postdoctoral Fellows/Research Fellows ● Dr. Andrée Sevigny, Social Work, Université de Laval. (Second mentor for Strategic Training Program, Primary Supervisor: Serge Dumont). 2003-Present. Palliative Care Volunteers in Canada. ● Dr. Patricia Rose, School of Nursing, April 2004-June 2005. Development of an Instrument to Predict Skin Lesions in the ICU. ● Dr. Mary Ellen MacDonald, Pediatric Palliative Care, MUHC Oncology. 2004-Present. Understanding the Experiences of Families Confronted by a Child’s Life-Threatening Illness. ● Dr. Donald Ginsberg, Dept. of Oncology. 2005. Resident’s Experience of Caring for the Terminally Ill. ● Dr. Andreea Iancu. Dept. of Oncology. November 2005-October 2006. Cancer Pain Classification System. d) Thesis Committee ● Shuling Chen, Faculty of Education, 2002-Present. Spirituality & Palliative Care in Chinese Canadians. Franco Carnevale a) Doctoral Courses ● Qualitative Nursing Research (NUR2-706; 3 credits). Doctoral Program, School of Nursing, McGill University. ● Development of Theory in Nursing: An inquiry concerning nursing knowledge (NUR2 730; 3 credits). Doctoral Program, School of Nursing, McGill University. 12
    • McGill Lymphedema Research Program (MLRP) Annual Report 2005 b) MSc Students ● A. Doussau, La participation des parents lors de la prise de décision des soins de réanimation pour leur enfant gravement malade: le cas de la France - Expériences et vécu des parents et des soignants. Co-supervisor, Master’s Program, Maitrise international en évaluation et gestion des technologies de la santé (Health technology assessment international master), Département administration de la santé, Faculty of Medicine, Université de Montréal. ● L. Murray, Advanced nursing practice: The stakeholders conceptions of the nurse practitioner role in the emergency department. Co-supervisor, master’s thesis, Faculté des sciences infirmières, Université de Montréal. ● M-J. Séguin, The moral experience of families having faced life–support decisions regarding their children. Co-supervisor of mémoire de maîtrise, Faculté des sciences infirmières, Université de Montréal. c) PhD Students ● T. St-Laurent, Les médecins chercheurs et la recherche clinique impliquant des enfants en soins palliatifs: enjeux éthiques. Co-supervisor, doctoral studies, bioethics, Université de Montréal. ● M. Gallant, Nurse-patient partnership in chronic illness. Co-supervisor, doctoral studies, School of Nursing, McGill University. ● D. Aarons, Doctor-patient communication in government hospitals in Jamaica. Member of doctoral thesis committee, Experimental Medicine, McGill University. Mary-Ann Dalzell a) Undergraduate ● Course on Cancer Rehabilitation –Fall 2005. School of Physical & Occupational Therapy McGill University. b) Graduate ● Multidisciplinary Approach to Management of Cancer-Related Dysfunction In: Current Topics in Rehabilitation, School of Physical & Occupational Therapy, McGill University. Graduate Seminar. ● Two Masters students, Rehabilitation Science program, McGill University 13
    • McGill Lymphedema Research Program (MLRP) Annual Report 2005 MUHC LYMPHEDEMA CLINIC The MUHC Lymphedema Clinic presently operates from the Palliative Care Day Hospital space at the Montreal General Hospital. 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. A multidisciplinary approach is used, with an emphasis on patient education. Patient volume Approximately 400 patients with cancer-related lymphedema are followed in this clinic. Occasionally the clinic sees primary lymphedema cases referred by vascular surgeons, since there is no other specialized facility to assess these patients. Referrals come from all over Quebec and Ontario. Many other cases from outside Montreal are treated via telephone or e-mail consultation. There are several such consultations per day. Most of the actual treatment and follow-up in Montreal is done by lymphedema therapists in the community who are affiliated with this clinic and who work closely with Dr. Towers. The medical support to the therapists for the follow-up often occurs via telephone. To support the community work, Dr. Towers and one nurse also see an average of 5 patients per week on Mondays and there is a 2-3 month waiting list. Dr. Towers sees the patients as required – usually 3-4 times in the first year and then yearly, if the patients are in remission from their cancer. Those with recurrent and advanced metastatic cancer are seen more often and are shifted onto the regular MUHC palliative care program as the need arises. Assessment and Treatment Process The lymphedema patients are assessed in the clinic, are provided advice on management and lifestyle change and are then referred for treatment in private physiotherapy or other private lymphatic therapy facilities. We refer privately because there are no treatment resources for combined decongestive therapy within the Medicare-funded network (except for Charles Le Moyne Hospital, which provides a new integrated service as of September 2005 through their physiotherapy department. Charles LeMoyne also has a rehabilitation pool and an aquatic therapy program for these patients.) The initial lymphedema reduction treatment consists of daily visits for 15-20 sessions where the patient receives manual lymph drainage and compression bandaging. This is followed by a maintenance program where the patient wears an elastic garment and is taught to do specific remedial exercises and to follow a modified land-based or aquatic fitness program. Local lymphatic therapists and fitness trainers have been specifically trained to provide this service, again on a private basis by necessity. FINANCIAL REPORT In 2005 a Canadian Cancer Society Feasibility Grant of $34,380 was awarded for the study of group remedial exercises for chronic breast cancer-related lymphedema. In addition, funds were available from the CIHR grant awarded in 2004 to study arm morbidity following breast cancer treatment. In 2006 the McGill Lymphedema Research Program hopes to secure additional funds for the hiring of a kinesiolgist ($15,000) to set up and administer the new study with the Cedars Breast Center. The clinical program requires a physiotherapist (minimum of 4 hours/week) who could provide patient education and training in self-management. Ideally, the therapist would also administer the combined decongestive therapy. At present these treatments are not available except in private physiotherapy centers or private therapists. The estimated staff time requirement to service the MUHC cancer population would be for two half-time therapists who would cover for each other when on holiday or other leave to maintain continuity of treatment for patients undergoing the 3-4 week reduction program. Assessment and Treatment Facilities being explored (2005-06) 14
    • McGill Lymphedema Research Program (MLRP) Annual Report 2005  The Cedars Breast Clinic at the Royal Victoria Hospital, Room S10, could house a 2-3 hr per week lymphedema clinic for their patients. They have private resources to pay for a lymphedema therapist as part of a pilot project.  The Palliative Care Day Hospital, with improved facilities, could continue to be used to see breast cancer patients from the Montreal General Hospital site, and patients with leg lymphedema. Many of the leg lymphedema patients have recurrent or metastatic cancer (gynaecological, colorectal, prostate). They commonly have pain or other symptom issues and it would be appropriate to follow them in the palliative setting. The expected volume would be 6-8 patients per week for basic assessment and follow-up.  The Ville Marie Breast Centre is also interested in housing a clinic for their breast cancer patients. In all, if space, staffing and infrastructure were adequate, 12-15 patients per week could easily be seen for medical assessments and educational interventions. However treatments in the form of combined physical therapy should be offered on site to our cancer patients. Many of these patients have no private insurance and are not undergoing treatment at all. Additional infrastructure and staffing would be required for this. All lymphedema patients need to follow a specific remedial exercise program every day of their life. For this they require 6-12 sessions of training by a specially trained physiotherapist. The following facilities are required:  A rehabilitation gym. This could be shared with the Department of Oncology’s Cancer Nutrition- Rehabilitation Program.  A hydrotherapy pool (special 20 X 20 foot pool adapted for lymphedema therapy) which will be used for research as well as for therapeutic programs. In addition, the following equipment is needed: 1 Juzo Perometer (infrared limb volume measurement apparatus) $31,000 1 Impedimed (impedance tissue measures) $ 3,200 1 Tissue Tonometer (to assess degree of fibrosis) $ 1,200 1 Water displacement tank to measure arm lymphedema $ 1,500 2 Computers (with printer) 2 x $2,400 $ 4,800 Subtotal $41,700 DVD/video equipment $ 2,500 Videotapes/DVDs $ 2,500 Subtotal $ 5,000 This report was written by Gayle A. Shinder, PhD, Research Grants Coordinator in the Department of Oncology, McGill University. 15