Systematic Review of Patient-Reported Outcomes following Surgical Treatment of Lymphedema

Abstract

Introduction: Analysis of quality of life (QOL) outcomes is an important aspect of lymphedema treatment since this disease can substantially impact QOL in affected individuals. There are a growing number of studies reporting patient-reported outcomes (PROMs) for patients with lymphedema. The purpose of this study was to conduct a systematic review of outcomes and utilization of PROMs following surgical treatment of lymphedema. Methods: A literature search of four databases was performed up to and including March, 2019. Studies included reported on QOL outcomes after physiologic procedures, defined as either lymphovenous bypass (LVB) or vascularized lymph node transplant (VLNT), to treat upper and/or lower extremity primary or secondary lymphedema. Results: In total, 850 studies were screened—of which, 32 studies were included in this review. Lymphovenous bypass was the surgical intervention in 16 studies, VLNT in 11 studies, and both in 5 studies. Of the 32 total studies, 16 used validated survey tools. The most commonly used PROM was the lymph quality of life measure for limb lymphedema (LYMQOL) (12 studies). In the remaining four studies, the upper limb lymphedema 27 scale (ULL27), the short form 36 questionnaire (SF-36), the lymphedema functioning, disability and health questionnaire (Lymph-ICF), and lymphedema life impact scale (LLIS) were each used once. QOL improvement following surgical treatment was noted in all studies. Conclusions: Physiologic surgical treatment of lymphedema results in improved QOL outcomes in most patients. The use of validated PROM tools is increasing but there is no current consensus on use. Future research to evaluate the psychometric properties of PROMs in lymphedema is needed to guide the development and use of lymphedema-specific tools.

Outcomes following lymphaticovenous anastomosis (LVA) for 100 cases of lymphedema: results over 24-months follow-up

“…Significant mean QoL improvements after LVA surgery were reported with consistent results in all follow-up periods until mean follow-up of 32 months. A recent systematic review on QoL following surgical treatment of lymphedema revealed that the majority of previous studies report QoL improvement solely based on the patient's feelings [7]. The reported proportions (range 57-100%) are consistent with the 80% of patients experiencing a positive effect in the current study [7].…”

“…A recent systematic review on QoL following surgical treatment of lymphedema revealed that the majority of previous studies report QoL improvement solely based on the patient's feelings [7]. The reported proportions (range 57-100%) are consistent with the 80% of patients experiencing a positive effect in the current study [7]. The other studies did use validated tools to asses QoL.…”

“…It can affect any part of the body but is predominantly observed in the upper and lower extremities [ 5 ]. Lymphedema causes physical morbidity as it can lead to pain, skin tightness, heaviness, recurrent periods of cellulitis, and decreased range of motion [ 3 – 7 ]. Moreover, it affects psychological and emotional well-being instigating body image disturbances, anxiety, and depression [ 5 , 8 ].…”

Patient-Reported Outcome Measures in Lymphedema: A Systematic Review and COSMIN Analysis

“…Lymphedema has a profound negative impact on patients' quality of life, and PROMs provide insight from patients about their quality of life associated with their condition and how this changes with time and the treatment they have received. [2][3][4] It is therefore essential that the development of PROMs involve patients, and as this systematic review highlights, only Upper Limb Lymphedema (ULL)-27 was developed with patient interviews. Six of the tools involved patient surveys during the development phase, which also may provide validity if the surveys were conducted in an open-question format.…”

“…Previous systematic reviews have lacked a consensus regarding the most suitable PROM to use. [2][3][4] Although one review found the ULL-27 to have strong psychometric properties, 3 compared with the Lymphedema Life Impact Scale (LLIS) questionnaire, a clinical study of secondary upper extremity lymphedema found the LLIS to be more sensitive for measuring the degree of physical and functional disability. 5 The authors did not conclude which of questionnaires currently available is the From this study, the authors make the case that a current need exists for a valid and reliable lymphedema-specific PROM that adheres to modern development and validation guidelines, including extensive qualitative input from patients.…”