Methods: In 2008, lymphedema clinical experts, researchers, educators, patients, advocates, and other stakeholders began the process of developing the American Lymphedema Framework Project (ALFP) at the invitation of the ILF. At the American Cancer Society-sponsored Stakeholders Conference in 2009, the collaboration of healthcare providers, researchers, patients, educators, advocates, third-party payers, and industry representatives established the mission and initial goals of the ALFP. Using the ‘open-space meeting’ approach, consisting of ‘self-managed work groups where leadership is shared, diversity is encouraged and personal empowerment is achieved,’ the initial group of 72 experts explored the issues involved in the management of lymphedema and lymphatic system disorders in the United States. To ensure that the work of the ALFP remained current, subsequent ‘open-space meetings’ were held in 2011 (Columbus, OH) and 2014 (Columbia, MO, and Atlanta, GA). In 2015, the first international ‘open space’ stakeholder meeting was held in Cape Town, Republic of South Africa, in support of the formation of the Lymphedema Association of South Africa (LAOSA), modeled after the ALFP.
Results: Seven major issues in the management of lymphedema were identified at the first stakeholder meeting: (1) Establish the credibility of the ALFP; (2) Create awareness of lymphedema and related lymphatic system disorders; (3) Develop research to refine diagnostic standards and provide evidence for effective treatments; (4) Enhance patient education, support, and self-management; (5) Establish criteria for health provider education; (6) Promote evidence-based practice for lymphedema management; and (7) Improve reimbursement. The stakeholder meetings in 2011 and 2014 confirmed the same issues as a priority, with awareness/education as the highest priority. International issues in a lower-resource country (2015) mirror those in a higher resource country, such as the U.S.
Two of the established goals of the ALFP are to: (1) Define best practices of lymphedema management; and (2) Develop a minimum data set to support research to improve lymphedema outcomes. Progress in meeting these goals is summarized here.
As part of working toward promotion of evidence-based best practices, teams comprised of ALFP steering committee members and other lymphedema experts conducted systematic reviews of the current literature on management of lymphedema (N=10). A research librarian assisted with searches of 11 major medical databases. From almost 6000 screened articles, articles were selected based on defined eligibility criteria for final review (n=1303) and categorization (n=659) by topic experts. The following reviews have been completed and published in peer-reviewed journals, with complete references and links available at the ALFP website (ALFP.org):
- The surgical treatment of lymphedema: A systematic review of the contemporary literature (2004-2010)
- Exercise in patients with lymphedema: A systematic review of the contemporary literature
- A systematic review of the evidence for complete decongestive therapy in the treatment of lymphedema from 2004 to 2011
- Psychosocial impact of lymphedema: A systematic review of literature from 2004-2011
- Complementary, alternative, and other non-complete decongestive therapy treatment methods in the management of lymphedema: A systematic search and review
- Palliative care for cancer-related lymphedema: A systematic review
- Intermittent pneumatic compression therapy: A systematic review
- Self-management of lymphedema: A systematic review of the literature from 2004-2011
- Exploring the usefulness of botanicals as an adjunctive treatment for lymphedema: A systematic search and review.
- A systematic review of care delivery models and economic analyses in lymphedema: Health policy impact (2004-2011)
Another resource developed to promote best practices in lymphedema management is the ALFP Therapist Directory. Look4LE is a mobile app developed by the ALFP to help find therapists trained to assess and treat lymphedema. Look4LE is a searchable online database with demographic information (geographical location, telephone, email, and geospatial linkages) of certified lymphedema therapists. The app currently features almost 1,200 Lymphology Association of North America (LANA)-certified therapists, with plans to steadily add 135-hour-trained therapists worldwide. Therapists may be found by using the directory, or by accessing the app’s built-in map feature to search by location name, zip code, or current location. Each therapist has a contact page where phone, street, web, and email addresses can be found; a map viewed; directions obtained; and the therapist contact information added to system contacts. An individual (health care professional or patient) seeking a therapist can search by geographical location or discipline with assurance that the therapist is certified as a lymphedema therapist with the required 135 hours of specialized study. There are also a number of resources listed in the app with links to webpages and organizations relevant to lymphedema.
Working toward achievement of the second goal, the lymphedema minimum data set (MDS) has been created by the ALFP to collect and analyze clinical and self-reported data related to lymphedema. The data set contains longitudinal visit information, volume measurements, symptoms, and treatment data. The MDS currently contains approximately 1300 patients across over 8000 clinical visits. The MDS has been tested to ensure the elimination of data duplicates and inconsistency. Each site’s data export into the MDS has been developed and tested. A suite of data mining tools has been developed to identify clinically significant patterns and to support more sophisticated analytic approaches to understanding lymphedema risk, emergence, diagnosis, treatment, management, and long-term impact. The ALFP team has collaborated with experts in engineering to develop a 3D mobile imaging platform for remote measurement of limb volume to be transferred to the MDS for surveillance and clinical management.
Conclusion: Through a continued partnership of patients, healthcare professionals, researchers, industry representatives, third-party payers, and advocates, the ALFP has established a leadership role in risk reduction, treatment, education, and research of lymphedema management. Based on the systematic reviews, it is evident that there is a paucity of rigorously-conducted research studies. There is a critical need for well-designed, randomized trials to examine the available range of treatment modalities to determine which ones may be the best for managing LE. It is imperative that we design and test strategies using relevant patient-reported outcomes and bring the scientific findings to the understanding of and application by therapists, clinicians, patients, families and others involved in the management of lymphedema. Aggregation of clinical and research data through informatics infrastructures such as the ALFP minimum data set support development of practice-based evidence to guide best practices for lymphedema. Innovations such as development and refinement of mobile devices for limb volume measurement and resource retrieval promise to improve management for persons with and at risk of lymphedema. The American Lymphedema Framework Project has made a major contribution toward addressing the prioritized issues identified by stakeholders in 2008 and moving the field forward.