1. PROJECT ACTIVITIES

1.1 Background

Breast Cancer Action (Ottawa)’s Lymphedema: Take Control project was funded by the Canadian Breast Cancer Foundation – Ontario Region with $151,441 from the Community Health Promotion Grant Program.

Goal: to raise awareness about secondary lymphedema related to breast cancer and promote the value of exercise to lymphedema risk reduction and management.

Target audiences:

• Breast cancer patients and survivors at risk of secondary lymphedema or living with it
• Members of the health, wellness and fitness sectors who encounter those at risk of developing or currently living with secondary lymphedema

Objectives:

• Increase the knowledge, ability and confidence of breast cancer patients and survivors to exercise safely and appropriately to reduce their risk of secondary lymphedema or manage the condition
• Increase fitness instructors’ awareness and knowledge of secondary lymphedema and appropriate exercise for its risk reduction and management
• Strengthen linkages with the health, wellness and fitness sectors and community groups The project’s geographical scope was Ottawa, Ontario, Canada. It was implemented by a small team of project staff and consultants, supported by Breast Cancer Action (Ottawa) personnel, and guided by an Advisory Committee made up of volunteer members.

1.2 Evidence Base

The project was informed by current academic evidence and clinical experience. Three key components made up the project’s evidence base:

• Multidisciplinary Advisory Committee with expertise in breast cancer rehabilitation including:
• lymphedema assessment and management, physiotherapy, lymphedema community support services, fitness and the perspectives of cancer survivors living with secondary lymphedema
• Project consultants with expertise in lymphedema assessment and management, physiotherapy,and kinesiology
• Scoping literature review undertaken to consider the role of supervised exercise in secondary lymphedema risk reduction and management

In combination, these components guided project activities and ensured currency with academic knowledge, clinical practice and the lived experience of breast cancer rehabilitation. Read the summary
of research for an overview of the key findings in the literature review.

1.3 Evaluation

A participatory approach was taken to the project’s evaluation. The third party evaluator worked with the project team to develop the evaluation framework, including a logic model that mapped out the goal and objectives along with measurable indicators and evaluation tools. All project activities were evaluated using a range of pre/post evaluation tools. During the project, the evaluator observed representative activities, interviewed key stakeholders, reported to the Advisory Committee, and held review meetings to assess progress with project staff. The participatory approach and interactive review process resulted in improvements being made to the project’s activities on an ongoing basis. (Top)

1.4 Go With The Flow exercise program

Based on current academic knowledge, clinical experience, and fitness practice in breast cancer rehabilitation, the project team designed and developed the eight-week Go With The Flow exercise program for breast cancer patients and survivors.

Goals

• To raise awareness of secondary lymphedema and the positive benefits of exercise
• To increase the breast cancer patients and survivors’ confidence to exercise regularly and to encourage a lifelong habit of regular exercise

To achieve these goals, Go With The Flow combined a supportive environment of safe and appropriate exercise with lymphedema education (Lymphedema 101 brochure, exercise manual, and class visits by the project’s lymphedema consultant, a later programming addition). (Top)

Core components

Progressive aerobic-based program designed to help:

• Improve cardiovascular fitness, joint range of motion and flexibility
• Increase muscle strength and restore or maximize upper body function
• Improve posture, balance and coordination
• Reduce the risk or help to manage secondary lymphedema

Go With The Flow was implemented in seven sessions from April 2008 to July 2009 in eight locations across Ottawa for a total of 27 classes delivered by seven instructors to 278 participants. Participants were required to register for the program by completing a form that gathered health information, primarily to inform instructors of the health needs of their participants. Class sizes were kept to a maximum of 15 participants, with lower average attendance per class. The small class sizes enabled instructors to monitor their participants and provide more individualized attention when needed. During the course of the project, three meetings were held with instructors to evaluate program delivery and the supports provided to instructors, resulting in program improvements. Read Fitness for Breast Cancer Survivors and Exercise Tips for Fitness Instructors for evidence-informed tools developed by the project. (Top)

1.5 Training Workshops

A four-hour training workshop was developed for personal trainers and group fitness instructors, although it was also relevant to and attended by professionals in the health and wellness fields. Its objective was to provide participants with awareness of and sensitivity to the health requirements of breast cancer patients and survivors. This was achieved by providing education on: basic human anatomy and physiology of the lymphatic system and breast, breast cancer and treatment, secondary lymphedema and its risk factors for development. The importance of providing safe and appropriate supervised exercise for lymphedema risk reduction and management in breast cancer rehabilitation was emphasized.

The training workshop was accredited by Can-Fit-Pro, a national provider of certification and continuing education for group fitness instructors, personal trainers and allied health professionals. The training workshop was offered 11 times from July 2008 to June 2009, to 102 participants (mainly fitness instructors). Six Go With The Flow instructors were recruited from the cohort of workshop participants.

1.6 Community Workshops

To raise awareness about secondary lymphedema and the value of exercise to its risk reduction and management, four community workshops were held with the project’s target audiences: fitness, health and wellness leaders (July 2008); oncology nurses (April 2009); breast cancer patients and survivors (June 2009); and community nurses (June 2009). The scope and content of the community workshops varied with the audience: three were held with fitness, health and wellness professionals (approx. 60 participants) and one with breast cancer patients and survivors (approx. 100 participants).

At each community workshop, short and informative presentations were made by the project’s consultants and other respected experts in cancer care and rehabilitation as well as the personal perspective of breast cancer survivors living with secondary lymphedema. The community workshops were opportunities for networking and support as well as information sharing. (Top)

1.7 Educational Materials

Lymphedema educational materials were developed with the expertise and input of the project team:

• Lymphedema 101 brochure: key informational piece to raise awareness about secondary lymphedema (role of lymphatic system, what lymphedema is, risk avoidance strategies, early signs and symptoms, and treatment by certified lymphedema therapists)
• Go With The Flow exercise manual: an accompaniment to the exercise program and support for home-based exercise

The materials were focus-tested with a group of breast cancer survivors and field-tested in the first session of Go With The Flow, before being finalized in English and later translated into French. All of the project materials were branded with a unique look and feel developed by the project’s designer. (Top)

1.8 Information Sharing

Through a variety of means, the project’s activities were promoted and its findings shared with individuals and organizations in Ottawa and beyond: information booths at community events; conference workshops and a poster presentation; newsletter updates and articles; mail-outs to cancer care and lymphedema support organizations and therapists; and online information and tools – a compilation of theproject’s findings in user-friendly materials at www.bcaott.ca/lymphedema/info

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