American Lymphedema Framework Project Annual Report of ...

Annual Report of Activities
2010
American Lymphedema
Framework Project
The ALFP is a partner of the International
Lymphoedema Framework
This report was produced in affiliation with
the University of Missouri

American Lymphedema Framework Project
Table of Contents
Overview
Mission 1
Goals 1
Organizational Tree 2
Steering Committee 3
Activities
Minimum Data Set (MDS) 4
Best Practice Document & Systematic Review 5-6
Outcomes
Publications, Presentations, & Grants 7-8
Acknowledgements 9
Industry Partnerships 10
To reference this document cite the following:
American Lymphedema Framework Project (2011). Annual Report of Activities.
University of Missouri, Columbia, MO: Author.

Mission
The American Lymphedema Framework Project (ALFP) is a national initiative developed under
the leadership of recognized clinical experts and investigators in the field of lymphedema. A
collaboration of healthcare providers, researchers, patients, and industry representatives, the
ALFP will develop and evaluate appropriate health care services for patients with all forms of
lymphedema and advance the quality of lymphedema care both in the United States and
worldwide. To move this charge forward, the ALFP has formed a partnership with the
International Lymphoedema Framework (ILF), a UK-based research partnership founded in
2002, which has made tremendous strides in raising the profile of lymphedema and improving
the standards of care in Great Britain.
The mission of the ALFP is to improve the management of lymphedema and related lymphatic
disorders in the United States while contributing to global international improvement in this
field. This will be achieved by defining best practices and developing a minimum data set to
improve lymphedema outcomes. The ALFP will establish a leadership role in lymphedema risk
reduction, treatment, education, health policy, and research. These outcomes will be achieved
through a partnership among all lymphedema stakeholders.
Goals
Revise and update a Best Practices Document for lymphedema care in the U.S.
Develop and implement a lymphedema minimum data set for clinical and research use
nationally and internationally.
Design a U.S.-based epidemiology protocol to determine the size and complexity of the
problem of lymphedema from all causes (primary and secondary lymphedema).
Develop methods for evaluating patient-based outcome measures and improving
patient outcomes.
Develop and provide appropriate practice-based lymphedema educational programs.
Contribute to the mission and goals of the ILF.
1

Organizational Tree
Director
Co-Director
International
Advisory Board
Executive
Committee
Industry
Consortium
International
Lymphoedema
Framework
Steering
Committee
MU Center for
Lymphedema
Research, Practice,
& Health Policy
Healthcare
Professionals
Researchers
Patient Advocacy
Groups
Stakeholders
Third-Party
Payers
Professional
Organizations
Industry
Representatives
Best Practices
Document
Minimum
Dataset
Health Policy,
Legislation,
Reimbursement
Committee
Research &
Dissemination
Committee
Minimum
Dataset
Committee
Best Practices
Document
Committee
Communication
& Website
Committee
Stakeholder &
Industry
Relations
Committee
2

Jane Armer, RN, PhD, FAAN
University of Missouri
Sinclair School of Nursing
armer@missouri.edu
Joseph Feldman, MD, CLT-LANA
University of Chicago
Pritzker School of Medicine
jlfeldman2@northshore.org
Janice Cormier, MD, MPH
University of Texas
M.D. Anderson Cancer Center
jcormier@mdanderson.org
Kim Andrews
American Cancer Society
kim.andrews@cancer.org
Christine Moffatt, CBE, PhD, MA, RGN, DN, FRCN
International Lymphoedema Framework
christine.moffatt@cricp.org.uk
Marcia Beck, APRN, BC, CLT-LANA
Truman Medical Center
marcia.beck@tmcmed.org
Mike Bernas, MS
University of Arizona
michaelb@u.arizona.edu
Kathleen Francis, MD
Lymphedema Physician Services
KFrancis@barnabashealth.org
Mei Fu, PhD, RN, ACNS-BC
New York University College of Nursing
mf67@nyu.edu
Bonnie Lasinski, MA, PT, CLT-LANA
Borris/Lasinski School
blasins@optonline.net
Electra Paskett, PhD
The Ohio State University
electra.paskett@osumc.edu
Julia Rodrick, OTR, CLT-LANA
St. John's Hospital Rehab
handyotr86@hotmail.com
Chi-Ren Shyu, PhD
University of Missouri Informatics
Institute
shyuc@missouri.edu
Paula Stewart, MD, CLT-LANA
Health South
paula.stewart@healthsouth.com
Nicole Stout, MPT, CLT-LANA
National Navel Medical Center
Breast Care Clinic
nlstout90@gmail.com
Catherine M. Tuppo, PT, MS, CLT-LANA
Stony Brook University Hospital
Catherine.Tuppo@sbumed.org
Robert Smith, PhD
American Cancer Society
robert.smith@cancer.org
Bob Stewart, EdD
University of Missouri
Sinclair School of Nursing
stewartb@missouri.edu
Kathryn Thrift, BS, CLT-LANA
Dr. Vodder School
kmtcltlana@aol.com
Robert “Bob” Weiss, MS
Lymphedema Patient Advocate
lymphactivist@aol.com
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Minimum Data Set (MDS)
A major goal of the ALFP is to collaborate with the ILF and other national frameworks in the
development of the MDS for clinical and research use nationally and internationally. The MDS
will be used to evaluate patient-based outcome measures worldwide. Methods of data collection
have been developed, including the design and testing of an internet-based information
technology system under the oversight of Dr. Chi-Ren Shyu, Director of University of Missouri
Informatics Institute, to serve as a platform for the collection and transfer of data.
The ALFP is moving the international lymphedema MDS forward with development of the data
base architecture and beta testing the integration of de-identified data sets from multiple clinical
and research sites. Progress in the MDS development is being made with support of the recently
funded National Library of Medicine G08 grant on Cyber Informatics Tools for Lymphedema
Stakeholders (2010-2013).
There are eight development modules in this project in a prioritized order:
1. Building a data warehouse for a minimum data set (MDS) and data governance protocols
for cross-institutional studies.
2. Developing survey and analysis tools for each stakeholder group.
3. Computationally collecting high quality and evidence-based knowledge from a selected
set of lymphedema (LE) organizations, journals, and news releases from reputable public
media.
4. Constructing an informatics tools library for mining structured and unstructured
information sources, performing statistical tests, and creating graphics/figures for
information visualization.
5. Building a case-based library for complex case repository and exchange within and
across stakeholder groups.
6. Building a knowledge base for indexing discovered patterns from all information sources
and linking it with the Best Practices guidelines.
7. Developing user-centered query methods dedicated for patients/ families, health
professionals, health educators, and researchers.
8. Monitoring the proposed work by quantitatively and qualitatively measuring the
improvement of research/clinical outcomes and LE awareness.
4

Best Practice Document & Systematic Review
A major goal of the ALFP is to collaborate with the ILF in the development of a second edition
of the ILF Best Practice Document, as well as adapt the document for lymphedema management
specific to the United States. A preliminary review of gaps and updates to the 2006 ILF Best
Practice Document was completed in 2009 by expert clinicians for application to the health care
delivery system in the U.S. and worldwide.
In 2010, as part of this goal the ALFP also completed a systematic review of lymphedema
literature from 2004-2009 under the guidance of an experienced research librarian using the UK
BPD search terms and exploded terms. The systematic review topics can be seen in Table 1.
Databases Searched:
The databases searched were PubMed-Medline,
CINAHL, Cochrane Database of Systematic
Reviews, Cochrane Controlled Trials Register,
PapersFirst, ProceedingsFirst, Worldcat, PEDro,
National Guidelines Clearing House, ACP Journal
Club, and DARE.
Literature Review Methods:
1. Initial screen (2004-2009) by research librarian
that general inclusion criteria were met.
2. Screen 1 – Article titles and abstracts reviewed
by research associate for general applicability to
lymphedema.
3. Screen 2 – Editors sorted literature from Screen
1 into included and excluded articles and topical
areas.
4. Screen 3 – A review of the full text articles from
Screen 2 by the topic experts for inclusion or exclusion.
Table 1. Systematic Review Topics
Assessment
Risk-reduction
Complete Decongestive
Therapy
Exercise
Surgical approaches
Intermittent pressure devices
Other treatments
Complex cases
Wound and skin issues
Palliative Care
Living well with LE
Psychosocial issues in LE
Economic/health policy
issues
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Additional articles were nominated by topic experts for inclusion or exclusion, and articles from
2010 and 2011 were also included, as appropriate. Lymphedema case series were included, if
cases were ≥10. Gray literature, non-refereed articles, abstracts, and dissertations were excluded.
Topic experts categorized evidence using the research grading system from the Oncology
Nursing Society (ONS) Putting Evidence into Practice (PEP) level of evidence guidelines 1 or
alternative rigorous categorization. PEP level of evidence categorization was applied by
consensus among topic authors and confirmed by editors.
The ALFP will produce a series of lymphedema manuscripts for publication in 2011 and 2012
and will provide summaries of the systematic review for incorporation in the update of the Best
Practice Document (second edition).
1 Steelman, V. M., Pape, T. King, C. A., Graling, P, & Gaberson, K. B. (2011). Selection of a method to rate the
strength of scientific evidence for AORN recommendations. AORN Journal, 93(4), 433-44.
Systematic Review
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Publications, Presentations, Posters, & Grants
ALFP Publications
Armer, J. M., Paskett, E. D., Fu, M. R., Feldman, J. L., Shook, R. P., Schneider, M. K., et al.
(2010). A survey of lymphoedema practitioners across the US. Journal of Lymphoedema, 5(2),
95-97.
Cormier, J., Feldman, J., Askew, R., Beck, M., Bernas, M., Francis, K., et al. (2010). ALFP to
update the best practice document. Journal of Lymphoedema, 5(1), 68-71.
Shuyu, X., Green, J., Armer, J., Stewart, B, & Shyu, C. (2010). Matching lymphedema patient
profiles with data mining results using evidence-based information from the minimum data set.
American Medical Informatics Association (AMIA) Annu Symp Proc 2010, Nov 13, 1258.
Xu S, Shyu CR (2010). Efficient selection of association rules from lymphedema symptoms data
using a graph structure. AMIA Annu Symp Proc. 2010, Nov 13, 912-6.
ALFP Presentations
Armer, J., Cormier, J., Feldman, J., Shook, R. & Stewart, B. (2010, March). The American
Lymphedema Framework Project (ALFP) national stakeholders open space meeting: Planning
and results. Paper presented at the 16 th International Conference on Cancer Nursing, Atlanta,
GA.
Armer, J., Feldman, J. Cormier, J. (2010, January). American Lymphedema Framework Project.
Invited presentation at Vodder School of North America. Dallas, TX.
Armer, J., Feldman, J. & Cormier, J. (2010, May). American Lymphedema Framework Project.
Invited presentation at Vodder School of North America. Stowe, VT.
Armer, J., Feldman, J., Cormier, J. Moffat, C., Gonon, P., Brooks, C. & Stewart, B. (2010,
September). The American Lymphedema Framework Project (ALFP) National Stakeholders
Open Space Meeting: Planning and results. Paper presented at the 9 th National Lymphedema
Network Conference, Orlando, FL.
Armer, J., Feldman,, J., Fu, M., Schneider, M., Stewart, B. & Cormier, J. (2010, September).
ALFP Therapist Survey: Patient Characteristics and Treatment Options for Therapists
Managing Lymphedema in the US. Paper presented at the 9 th National Lymphedema Network
Conference, Orlando, FL.
Armer, J., Feldman, J., Fu, M., Schneider, M., Stewart, B. & Cormier, J. (2010, September).
ALFP Therapist Survey: Patient Characteristics and Treatment Options for Therapists
Managing Lymphedema in The US. Paper presented at the 2 nd International Conference on
Prevention & Management of Chronic Conditions, Bangkok, Thailand.
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ALFP Posters
Armer, J., Paskett, E., Fu, M., Feldman, J., Shook, R., Schneider, M., Stewart, B. & Cormier, J.
(2010, June). Practice Characteristics for Therapists Managing Lymphedema in the US. Poster
presented at the 5th Biennial Cancer Survivorship Research Conference, Washington, DC.
Shuyu, X., Green, J., Armer, J., Stewart, B., Shyu, C. (2010, November). Matching
Lymphedema Patient Profiles Data Mining Results Using Evidence-based Information from the
Minimum Data Set. Poster session presented at the American Medical Informatics Association
2010 Annual Symposium, Washington, DC.
ALFP Exhibits
ALFP Exhibit (2010, March). Exhibit at the 2 nd International Lymphedema Framework
Conference, Brighton Centre, UK.
ALFP Exhibit (2010, September). Exhibit at the 9 th National Lymphedema Network Conference,
Orlando, FL.
Grants
Shyu, C-R (PI), Armer, J.M. (Co-PI) (2009). Cyber Informatics Tools for Lymphedema
Stakeholders. National Library of Medicine Knowledge Management & Applied Informatics
Grants (G08). $450,000.00. (funded 2010-2013)
NLN 2010 Conference
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Acknowledgements
On behalf of the American Lymphedema Framework Project team, our Executive and Steering
committees, and all our existing stakeholders, we are deeply grateful for the support provided 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. This support has significantly helped move forward the mission
and goals of the ALFP.
The ALFP Executive Committee: Janice Cormier, Joseph
Feldman, Christine Moffat, and Jane Armer, with the 2009
Longaberger Horizon of Hope Basket, August 2009, Columbia,
MO (basket courtesy of Marcia Beck).
The 2010 Longaberger
Horizon of Hope Basket.
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Industry Partnerships
On behalf of the American Lymphedema Framework Project team, our executive and steering
committees, and all our existing stakeholders, we are deeply grateful for the support received
from our industry partnerships. These supporters are not just financial sponsors, but partners in
helping the ALFP to move toward achieving the mission to improve the awareness and
management of lymphedema in the U.S.
Gold Sponsor
Tactile Systems Technology,
Inc.
Silver Sponsor
3M
Bronze Sponsors
CircAid Medical Products, Inc.
Farrow Medical Innovations
SunMED Medical Solutions, LLC
Founding Contributing
Stakeholders
Bellisse
Solaris, Inc.
Contributing Stakeholders
Juzo
ImpediMed
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