American Lymphedema Framework Project

Annual Report of Activities

2010

This report was produced in affiliation with

the University of Missouri

The ALFP is a partner of the International

Lymphoedema Framework

Table of Contents

American Lymphedema Framework Project

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.

1

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.

2

Organizational Tree

International Lymphoedema

Framework

MU Center for Lymphedema

Research, Practice, & Health Policy

Steering Committee

Minimum Dataset

Committee

Best Practices Document Committee

Research & Dissemination

Committee

Communication & Website Committee

Health Policy, Legislation, Reimburse-

ment Committee

Stakeholder & Industry Relations

Committee

Stakeholders

Best Practices Document

Minimum Dataset

Industry Consortium

Researchers Healthcare

Professionals

Patient Advocacy Groups

Professional Organizations

Third-Party Payers

Industry Representatives

Director Co-Director

Executive Committee

International Advisory Board

3

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

Christine Moffatt, CBE, PhD, MA, RGN, DN, FRCN International Lymphoedema Framework christine.moffatt@cricp.org.uk

Kim Andrews American Cancer Society kim.andrews@cancer.org

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

Robert Smith, PhD American Cancer Society robert.smith@cancer.org

Paula Stewart, MD, CLT-LANA Health South paula.stewart@healthsouth.com

Bob Stewart, EdD University of Missouri Sinclair School of Nursing stewartb@missouri.edu

Nicole Stout, MPT, CLT-LANA National Navel Medical Center Breast Care Clinic nlstout90@gmail.com

Kathryn Thrift, BS, CLT-LANA Dr. Vodder School kmtcltlana@aol.com

Catherine M. Tuppo, PT, MS, CLT-LANA Stony Brook University Hospital Catherine.Tuppo@sbumed.org

Robert “Bob” Weiss, MS Lymphedema Patient Advocate lymphactivist@aol.com

4

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.

5

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

6

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 guidelines1 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).

1Steelman, 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 16th

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 9th

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 9th

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 2nd

International Conference on

Prevention & Management of Chronic Conditions, Bangkok, Thailand.

8

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 2nd

International Lymphedema Framework

Conference, Brighton Centre, UK.

ALFP Exhibit (2010, September). Exhibit at the 9th

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

9

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.

10

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.

Bronze Sponsors

CircAid Medical Products, Inc.

Farrow Medical Innovations

SunMED Medical Solutions, LLC

Founding Contributing Stakeholders

Bellisse

Solaris, Inc.

Contributing Stakeholders

Juzo

ImpediMed

Silver Sponsor

3M