Review of Health-Related Quality of Life Assessments for Patients With Lymphedema

PURPOSE: In collaboration with a certified lymphedema therapist (CLT), we developed the following research question: Which patient-reported outcome assessments are most valid and reliable in measuring health-related quality of life (HRQoL) in patients with lymphedema? Currently, there is a shortage of HRQoL measures specific to patients with lymphedema that demonstrate psychometric rigor. These instruments are particularly critical to occupational therapy practitioners during a time of increased demands by third-party payers to produce Medicare G-codes, which report function-related outcomes.

METHOD: A systematic literature review was completed to appraise the evidence supporting the psychometric properties and clinical utility of 10 HRQoL assessments used for patients with lymphedema. After a search of selected databases, 19 articles were chosen that met the inclusion criteria: peer-reviewed articles published after 1980, participants with lymphedema or cancer, and psychometric data included for one or more of 10 selected assessments. Each article was categorized using American Occupational Therapy Association levels of evidence and the research pyramid described by Tomlin and Borgetto (2011). All articles were considered and reviewed by five researchers for inclusion in this review. Findings were shared with CLTs to inform their practice through an in-service and follow-up with the facility’s rehabilitation director.

RESULTS: The Disability of the Arm, Shoulder and Hand (DASH) and Lymphedema Life Impact Scale (LLIS) demonstrated the strongest evidence for test–retest reliability, internal consistency, and clinical utility for use in lymphedema practice settings in the United States. Strong evidence supports use of the DASH and modest evidence use of the LLIS.

Education was provided to practicing CLTs regarding conversion of assessment data into appropriate G-codes for quantifying patients’ level of impairment in everyday functioning. Results from a posttest given to CLTs after the in-service indicated that they improved their knowledge about the DASH and LLIS. Through follow-up with the facility’s rehabilitation director, work was initiated to modify the facility’s electronic medical records system to better allow the DASH and LLIS to be incorporated into G-code calculation.

CONCLUSION: The findings of this research support use of the DASH with patients with lymphedema secondary to breast cancer. For patients with lymphedema not secondary to breast cancer, the LLIS is the most appropriate assessment at this time.

IMPACT STATEMENT: Psychometrically sound assessments provide practitioners with objective data to quantify function, demonstrate the effects of treatment to third-party payers, provide cohesion across therapists and settings, and communicate outcomes with various disciplines along the continuum of care.

References

Davies, C., Brockopp, D., & Moe, K. (2015). Test–retest and internal consistency of the Disability of Arm, Shoulder and Hand (DASH) outcome measure in assessing functional status among breast cancer survivors with lymphedema. Rehabilitation Oncology, 33, 28–31. https://doi.org/10.1097/01893697-201533010-00005

Davies, C., Ryans, K., Levenhagen, K., & Perdomo, M. (2014). Breast Cancer EDGE Task Force outcomes: Quality of life and functional outcome measures for secondary lymphedema in breast cancer survivors. Rehabilitation Oncology, 32, 7–12.

Tomlin, G., & Borgetto, B. (2011). Research pyramid: A new evidence-based practice model for occupational therapy. American Journal of Occupational Therapy, 65, 189–196. https://doi.org/10.5015/ajot.2011.000828

Weiss, J., & Daniel, T. (2015). Validation of the Lymphedema Life Impact Scale (LLIS): A condition-specific measurement tool for persons with lymphedema. Lymphology, 48, 128–138. https://doi.org/10.1097/01.REO.0000000000000096