NATIONAL LYMPHEDEMA NETWORK

Lymphedema – Riding the Wave of Discovery

The NLN International Conference on lymphedema took place in San Diego from August 27 – 31, 2008. This biennial scientific conference keeps growing with approximately 600 delegates from around the world sharing and learning the most current research and practise trends related to lymphedema. Delegates were mainly medical professionals, including physicians, nurses, allied health care professionals and basic scientists interested or involved in the field of lymphology. An encouraging sign was the number of physicians attended the preconference physician intensive seminar on Lymphedema and related disorders.

Canadian Delegates – There were 24 participants from across Canada including therapists and patient advocates. The LAO and Robert Harris of Vodder School International hosted an early morning round table session. Discussion centered on the need for hospital and community based resources to be available for lymphedema patients in all provinces across Canada. It was a step forward in strengthening the Canadian Lymphedema voice.

I was honoured to be one of the seven patient advocates (three from Canada) who participated in the Lymph Science Advocacy Program. The goal of LSAP is to engage and motivate patient advocates and caregivers to action on issues of treatment and research of the lymphatic system through education and a more comprehensive understanding of the scientific and clinical research aspects of primary and secondary lymphedema and related disorders.

Exhibitors - With over 38 exhibitors showcasing their products, it was encouraging to see the profusion of garment choices from colourful, fashionable (not just practical) and new softer fabrics in various degrees of compression garments. There were many compression devices for nighttime wear that either eliminate or aid the need for night time bandaging. Companies showcasing shoes, donning devices, pneumatic pumps, bandaging supplies and devices for measurement such as perometry and bioimpedance were also present.

Sessions – The plenary sessions included Lymphedema Development and Prevention, Measurement and Assessment Techniques, Treatment and Exercise, Population Data Analysis and Healthcare Policy, Imaging and Vascular Systems Considerations, Lymphedema Management, Risk Reduction and Pneumatic Treatment, Psychosocial Aspects, LE Complications and Solutions. There were additional instructional sessions and 20 poster abstract presentations.

Key themes that emerged throughout the 3 day event were:

w the importance of early diagnosis; specifically pre-operative and post surgery base line measurement

w that measurement is extremely important to try to quantify and standardize incidence rates of lymphedema. Objective measurements such as water displacement, sequential tape measurements, perometer and impedance should be supplemented with subjective assessments include changes in fit of jewelry/clothing and skin changes.

w early intervention is important; when lymphedema is still mild and reversible as opposed to when it is chronic with the complications that are at great cost to the patient and the health care system.

w how exercise plays a positive role in the risk and management of lymphedema

w how Body Mass Index influences the risk of lymphedema

Key Note Speaker - The key note speaker was Christine Moffat who introduced the International Framework. This comprehensive document provides best practice guidelines for lymphedema. It originated in the United Kingdom with work underway to implement in the USA and plans to expand to Canada to follow.

Highlights: My knowledge of lymphedema increased significantly after this conference. What follows are simply some of the highlights that are still fresh in my mind:

w An interesting study that is trying to quantify the risks for lymphedema in specific terms such as a 10% risk for every lymph node removed.

w Nicole Stout Gergich’s message about early intervention was impactful: “If we are only recognizing and treating lymphedema once it is visible swelling; we’ve missed the boat that’s already sailed”.

w Tools like the perometer and bioimpedance are key to detecting limb changes before they are visible at the sub clinical stage.

w A preoperative baseline assessment is vital for early detection and treatment and conservative treatment is effective when an early diagnosis is made. Short period of compression garments can effectively treat sub-clinical lymphedema.

w Lymphedema is not exacerbated by participation in exercise. Women with secondary lymphedema should be encouraged to be physically active, optimizing their physical and psychosocial recovery. Sedentary people are more at risk for lymphedema. Our biggest obstacle in education might be to help patients overcome the fear associated with lymphedema that exercise will make it worse.

w Saskia Thiadens provided results from the Lymphedema databank survey that breast cancer patients are more aware of lymphedema education regarding self care and treatment options and that the website seems to be the optional method of disseminating educational materials about lymphedema to patients.

Participation in this program provided me with a better sense of lymphedema as a global problem and the various international perspectives of this condition. It came to light how Canadians need to step up to the plate in lymphedema research and raise the profile of lymphedema in Canada.

By Anna Kennedy, Executive Director of the Lymphovenous Association of Ontario and LSAP graduate