Presentation delivered by Jane Armer at the 2014 International Lymphoedema Framework conference in Glasgow.

1. American Lymphedema
Framework Project:
Aiming to Shape the Future
of Lymphedema Care in the US

2. Greetings from the ALFP
Steering Committee!!

3. This is the Time
A multitude of factors make 2014 the OPPORTUNE TIME for
change in the field of lymphedema
Improvements in cancer detection and treatment → more
survivors at lifetime risk for secondary LE
Economic challenges → need to evaluate health resources
and coverage for extended access to care
Increased emphasis on evidence-based care
Emergence of adjunct therapies
Enhanced collaboration among disciplines and
organizations
Recognition of the need for consensus in measurement
and diagnostic criteria
Improved assessment tools and protocols for
measurement and surveillance

4. • National collaborative initiative developed under
the leadership of recognized clinical experts and
investigators in the field of lymphedema in the
U.S. in 2008.
• In collaboration with healthcare providers,
researchers, patients, educators, advocates,
industry representatives, and the leadership of
the International Lymphoedema Framework.

5. • Update evidence-based clinical guidelines for
lymphedema care in the US
• Develop and implement a lymphedema minimum data
set for clinical and research use nationally and
internationally.
• Serve as a national clearinghouse for lymphedema
research and practice guidelines.
• Design a U.S.-based epidemiology protocol to determine
the size and complexity of lymphedema from all causes.
• Develop methods and tools for evaluating patient-
based measures to improve lymphedema outcomes
• Work with partners to promote health policy initiatives to
improve lymphedema care in the US

6. Goal One:
The Systematic Review
on the Evidence Base
for Lymphedema Practice

7. • Assist with revision and update of
Best Practices Document for LE
care.
• Complete a systematic review of
LE literature from 2004-09 (-2013)
• Produce a series of LE
manuscripts for publication in
2011, 2012, 2013, 2014.

8. • Assessment
• Risk-reduction
• Complete Decongestive Therapy
• Surgical approaches
• Intermittent pressure devices
• Other treatments
• Exercise
• Complex cases
• Wound and skin issues
• Palliative Care
• LE Self-management
• Psychosocial issues in LE
• Economic/health policy issues

9. Janice N. Cormier, MD, MPH1, Loren Rourke, MD1, Melissa
Crosby, MD2, David Chang, MD2, and Jane Armer, RN, PhD3
1. Department of Surgical Oncology, University of Texas MD Anderson Cancer Center,
Houston, TX
2. Department of Plastic Surgery, University of Texas MD Anderson Cancer Center, Houston,
TX
3. Sinclair School of Nursing, University of Missouri, Columbia, MO
Cormier, J. N., Rourke, L., Crosby, M., Chang, D., &
Armer, J. (2012). The surgical treatment of
lymphedema: A systematic review of the
contemporary literature (2004-2010).
Annuals of Surgical Oncology, 19(2), 642-651.

10. Marilyn L. Kwan,1 Joy C. Cohn, 2 Jane M. Armer,3 Bob R.
Stewart,3 & Janice N. Cormier4
1. Division of Research, Kaiser Permanente, Oakland, CA
2. Penn Therapy and Fitness, Good Shepherd Penn Partners, Philadelphia, PA
3. Sinclair School of Nursing, University of Missouri, Columbia, MO
4. Department of Surgical Oncology, University of Texas MD Anderson Cancer Center,
Houston, TX
Kwan, M. L., Cohn, J. C., Armer, J. M., Stewart,
B. R., & Cormier, J. N. (2011). Exercise in
patients with lymphedema: A systematic review
of the contemporary literature. Journal of
Cancer Survivorship, 5(4), 320-336.

11. B. Lasinski,1 K. Thrift,2 D. Squire,3 M. Austin,4 K. Smith,4
A. Wanchai,4 J. Green,4 B. Stewart,4 J. Cormier,5 J. Armer4
1. Lymphedema Therapy and The Boris-Lasinski School, Woodbury, NY
2. The Dr. Vodder Schools, Victoria, British Columbia, Canada/Walchsee, Austria
3. Complex Lymphatic Therapy Courses and Piedmont Hospital Lymphedema Program,
Atlanta, GA
4. University of Missouri Sinclair School of Nursing
5. University of Texas MD Anderson Cancer Center
Lasinski, B. B., Thrift, K. M., Squire, D., Austin, M. K.,
Wanchai, A., Green, J. M., Stewart, B. R., Cormier, J.N.,
& Armer, J. M. (2012). A Systematic Review of
the Evidence for Complete Decongestive Therapy in the
Treatment of Lymphedema From 2004 to 2011.
Physical Medicine & Rehabilitation, 4(8), 580-601.

12. Joseph L. Feldman1, Nicole L. Stout2, Ausanee
Wanchai3, Bob R. Stewart3, Janice N. Cormier4, Jane
M. Armer3
1. NorthShore University HealthSystem, Evanston, IL
2. NLS Consultants, Ltd
3. University of Missouri Sinclair School of Nursing, Columbia, MO
4. University of Texas MD Anderson Cancer Center, Houston, TX
Feldman, J. L., Stout, N. L., Wanchai, A., Stewart,
B. R., Cormier, J. N., & Armer, J. M. (2012).
Intermittent Pneumatic Compression Therapy:
A Systematic Review. Lymphology, 45(1), 13-25.

13. Marcia Beck1, Ausanee Wanchai2, Bob R.
Stewart2, Janice N. Cormier3, & Jane M.
Armer2
1. Truman Medical Center, Kansas City, MO
2. University of Missouri Sinclair School of Nursing, Columbia, MO
3. University of Texas MD Anderson Cancer Center, Houston, TX
Beck, M., Wanchai, A., Stewart, B. R.,
Cormier, J. N.,
& Armer, J. M. (2012). Palliative Care for
Cancer-
Related Lymphedema: A Systematic Review.
Journal of Palliative Medicine, 15(7), 821-7.

14. Sheila H. Ridner1, Mei R. Fu2, Ausanee
Wanchai3, Bob R. Stewart3, Jane M. Armer3,
Janice N. Cormier4
1. Vanderbilt University, Nashville, TN
2. New York University, New York City, NY
3. University of Missouri Sinclair School of Nursing, Columbia, MO
4. University of Texas MD Anderson Cancer Center, Houston, TX
Ridner, S. H., Fu, M. R., Wanchai, A., Stewart, B. R.,
Armer, J. M., & Cormier, J. N. (2012). Self-
management of lymphedema: A systematic review
of literature from 2004 to 2011. Nursing Research,
61(4), 291-299.

15. Mei Fu,1 Sheila Ridner,2 Sophia Hu,1 Bob Stewart,3
Janice Cormier,4 Jane Armer3
1. New York University College of Nursing, New York, NY
2. Vanderbilt University, Nashville, TN
3. University of Missouri Sinclair School of Nursing, Columbia, MO
4. University of Texas MD Anderson Cancer Center, Houston, TX
Fu, M.R., Ridner, S., Hu, S., Stewart, B.R., Cormier, J.N.,
& Armer, J. (2012). Psychosocial impact of
lymphedema: A systematic review of literature from
2004-2011. Psycho-Oncology. Published online ahead
of print DOI: 10.1002/pon.3201

16. Nicole L. Stout,1 Robert Weiss,2 Joseph L.
Feldman,3 Bob R. Stewart,4 Jane M.
Armer,4 Janice N. Cormier,5 & Ya-Chen
Tina Shih6
1. NLS Consultants, Ltd
2. Lymphedema Advocate, Porter Ranch, CA
3. NorthShore University HealthSystem, Evanston, IL
4. University of Missouri Sinclair School of Nursing, Columbia, MO
5. University of Texas MD Anderson Cancer Center, Houston, TX
6. University of Chicago, Chicago, IL
Stout, N., Weiss, R., Feldman, J., Stewart, B.,
Armer, J., Cormier, J. & Shih, Y. (2013).
A systematic review of health care delivery
models for lymphedema. Lymphology.

17. Rodrick, J.R., 4 Poage, E., 4 Wanchai, A.,3
Stewart, B.R., 4 Cormier, J.N., 5 Armer, J.M. 4
1. St. John’s Hospital Rehabilitation South, Springfield, IL.
2. Rehabilitation Associates of Naples, Naples, FL
3. Boromarajonani College of Nursing, Buddhachinaraj, Thailand
4. University of Missouri Sinclair School of Nursing
5. University of Texas MD Anderson Cancer Center
Rodrick, J.R., Poage, E., Wanchai, A., Stewart, B. R.,
Cormier, J.N., & Armer, J. M. (2013). Complementary,
Alternative, and Other Non-CDT Treatment Methods in
the Management of Lymphedema: A Systematic
Review. Physical Medicine & Rehabilitation.

18. Reviews and Manuscripts in Process
(n=5)
Other treatments
(Botanicals) [In revision]
Ellen Poage
Julia Rodrick
Skin and Wounds Wade Farrow
Caroline Fife
Complex cases Boyd Terry
Paula Stewart
Assessment Michael Bernas
Cathy Tuppo
Risk-reduction Electra Paskett
Lisa VanHoose

19. Manuscripts
•Systematic reviews have been published in
indexed, peer-reviewed journals matched to the
focused topics (2011-14).
•Summaries have been written and published in
a special issue of Seminars in Oncology Nursing
in Jan 2013.

20. Introduction (6 pp)
Anatomy and Physiology and LE Causes (6 pp)
Assessment and Risk Reduction (9 pp)
CDT (9 pp)
Non-CDT approaches (9 pp)
Complementary and Alternative Approaches (9 pp)
Self-Management and Psychosocial Aspects (9 pp)
Complex Cases (skin, wounds, palliative care) (9 pp)
Oncology HCP role in Advocacy for patients with LE (6 pp)

21. • The literature reviews revealed
that additional research with
quality methods are needed
regarding lymphedema and its
management.
• Lymphedema research should be
considered as a research priority
by scientists, health policy
experts, and funding sources.

22. We need more well-designed studies
• with precise measurements,
• larger well-defined study cohorts,
• followed over longer time periods,
• with stand-alone and bundled interventions
• incorporating standard of care versus optimal
care guidelines.
Together, these will lead to more definitive
evidence-based recommendations for the optimal
management of
primary and secondary lymphedema.
MedCAC 11/18/2009

23. ALFP Goal 2013-14
Development of a Sustainable
Systematic Review Process for
Lymphedema Studies

24. Purpose
• Purpose: Collecting high-quality and evidence-based
knowledge in lymphedema research.
• Traditional Literature Review Process:
labor intensive, professional staff (librarian,
researchers) required.
• Environment: research resources are digital
(machine-readable), which provides a good
opportunity for “informatics” to kick in.
• What to expect? An automatic tool that learns from
researcher’s reviewing process and smart enough to
automate the reviewing process.

25. • What can be automated?
• Looking for public domain resources: PubMed,
notable websites: NLM E-Utilities, web crawlers.
• Screening: Identify lymphedema-relevant articles.
• Assign each article to the most suitable
lymphedema research topics.
• The computers can learn from the feedback
provided by the experts.

26. Abstracts/
Literature
Screening
Domain
Concepts
Ontologies
……
Classificatio
n and
Ranking
CDT
CDT
CDT
Exercise
Exercise
Exercise
Risk Reduction
Risk Reduction
Risk Reduction
Voting Booth
Expert
Feedback
UMLS,
Wordnet, etc.
Topic specific keywords.
e.g.. “assess”,
“compression bandages”,
“risk factors”, etc.

27. *
*

28. ALFP Goal 2:
Development of a Minimum Data Set
to Assist in International Collaborative
Lymphedema Studies

29. ALFP Policy Initiatives &
Collaborations
Legislative
• Lymphedema Advocacy Group (LAG)
partnership
• Lymphedema Treatment Act
• Introduced in 112th Congress by Rep Kissel (NC)
• 92 Co-sponsors
• 113th Congress- awaiting re-introduction in the
House by Rep Reichart (WA)
• http://lymphedematreatmentact.org/

30. ALFP Policy Initiatives
• ALFP Functional Coding Survey among
lymphedema therapists May-June 2013
• NALEA therapist survey 2012
• ALFP therapist surveys 2009, 2011
 Goals to provide baseline and comparison
data for the lymphedema treatment field in
areas of education/training, practice,
modalities, and perspectives to assess
progress in the field

37. • ALFP organizational support received from LE industry partners:
Tactile Systems Technology, Inc; 3M; SunMED; CircAid Medical
Products, Inc; Farrow Medical Innovations; Bellisse; Solaris, Inc.;
Juzo; Impedimed; and Medi.
• The contribution of the ALFP steering committee in developing the
ALFP mission and strategic plan.
• The ongoing support and motivational energy from our stakeholders.
• Support provided to the ALFP by the American Cancer
Society, through The Longaberger Company, a direct
selling company offering home products including
handcrafted baskets made in Ohio, and the
Longaberger Horizon of Hope Campaign, which
provided a grant to the American Cancer Society for
breast cancer research and education.

38. Gold Sponsor
Tactile Systems Technology, Inc. *
Silver Sponsor
3M
Bronze Sponsor
CircAid Medical Products, Inc.*
Farrow Medical Innovations *
SunMED *
Founding Contributing
Stakeholders
Bellisse *
Solaris, Inc. *
Contributing Stakeholders
Juzo
ImpediMed
Medi
Founding *
Sponsor
*
*
*
*
*

39. www.alfp.org