Long term disability after breast cancer: building an empirical 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 and David Fleiszer.
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.
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.
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:
- 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;
- To continue to identify possible triggers of arm morbidity;
- To further document, measure, and analyze psychological and social impacts of arm morbidity;
- To compare provision of care and access to appropriate treatment across demographic groupings;
- To qualitatively explore the long-term impact of arm morbidity; and
- 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, gynaecological, and head/neck cancer patients may experience treatment effects (from lymph node dissection and radiotherapy) such as lymphedema, pain, and loss of function.
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.
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
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 water-displacement 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.
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 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.
Comparison of the efficacy of three methods of treatment for women with breast cancer-related 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 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 pre-treatment, 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.