The lymphedema patient experience within the healthcare system: a cross-sectional epidemiologic assessment.

Lymphedema is a progressive lymphatic disease that potentiates physical and psychosocial distress. Despite its impact, patients reportedly encounter lymphatic ignorance throughout the healthcare system. This cross-sectional study aims to summarize clinical characteristics and interactions of lymphedema patients within the healthcare system. Two lymphedema patient cohorts were included: The Global Registry Analysis Cohort included lymphedema patients who contributed to an international digital lymphatic registry and the Interactions Cohort included patients who initiated a questionnaire about interactions with the medical system. The global registry was used to obtain demographic and clinical characteristics from affiliated lymphedema patients. A 23-item online questionnaire on healthcare experiences and satisfaction with lymphatic healthcare was then distributed to the Interactions Cohort. Complete responses were obtained from 2474 participants. Participants were a mean age of 57.5 ± 16.1 years and 51.4% had a cancer history. Participants reported substantial delays in diagnosis and treatment. Cancer-related and non-cancer-related lymphedema patients reported similar levels of perceived physician disinterest in their lymphedema; however, non-cancer-related lymphedema patients reported more care dissatisfaction. Ultimately, patients continue to face delays in lymphedema diagnosis and treatment. We developed an evidence-based model highlighting areas of reform needed to improve lymphatic education and healthcare.

The Role of Inflammation in Lymphedema: A Narrative Review of Pathogenesis and Opportunities for Therapeutic Intervention.

Lymphedema is a chronic and progressive disease of the lymphatic system characterized by inflammation, increased adipose deposition, and tissue fibrosis. Despite early hypotheses identifying lymphedema as a disease of mechanical lymphatic disruption alone, the progressive inflammatory nature underlying this condition is now well-established. In this review, we provide an overview of the various inflammatory mechanisms that characterize lymphedema development and progression. These mechanisms contribute to the acute and chronic phases of lymphedema, which manifest clinically as inflammation, fibrosis, and adiposity. Furthermore, we highlight the interplay between current therapeutic modalities and the underlying inflammatory microenvironment, as well as opportunities for future therapeutic development.

Genetic causes of lymphatic disorders: recent updates on the clinical and molecular aspects of lymphatic disease.

PURPOSE OF REVIEW: The lymphatic system facilitates several key functions that limit significant morbidity and mortality. Despite the impact and burden of lymphatic disorders, there are many remaining disorders whose genetic substrate remains unknown. The purpose of this review is to provide an update on the genetic causes of lymphatic disorders, while reporting on newly proposed clinical classifications of lymphatic disease. RECENT FINDINGS: We reviewed several new mutations in genes that have been identified as potential causes of lymphatic disorders including: MDFIC, EPHB 4 , and ANGPT2. Furthermore, the traditional St. George's Classification system for primary lymphatic anomalies has been updated to reflect the use of genetic testing, both as a tool for the clinical identification of lymphatic disease and as a method through which new sub-classifications of lymphatic disorders have been established within this framework. Finally, we highlighted recent clinical studies that have explored the impact of therapies such as sirolimus, ketoprofen, and acebilustat on lymphatic disorders. SUMMARY: Despite a growing body of evidence, current literature demonstrates a persistent gap in the number of known genes responsible for lymphatic disease entities. Recent clinical classification tools have been introduced in order to integrate traditional symptom- and time-based diagnostic approaches with modern genetic classifications, as highlighted in the updated St. George's classification system. With the introduction of this novel approach, clinicians may be better equipped to recognize established disease and, potentially, to identify novel causal mutations. Further research is needed to identify additional genetic causes of disease and to optimize current clinical tools for diagnosis and treatment.

Living with leg lymphedema: developing a novel model of quality lymphedema care for cancer survivors.

PURPOSE: Lower-extremity lymphedema (LEL) is a lifelong consequence of cancer therapy and can lead to serious physical and psychosocial complications for many cancer survivors. However, clinical knowledge and treatment of LEL remain minimal. The purpose of this study was to integrate perspectives of lymphedema patients and healthcare providers (HCPs) on LEL to develop a novel model for quality lymphedema care. METHODS: A mixed-methods approach was implemented. Standardized questionnaires and semi-structured interviews were used to assess psychosocial well-being and experiences of LEL patients. Interviews were also used to evaluate the clinical experiences of HCPs working within tumour groups associated with cancer-related LEL. Thematic analysis was used to analyse qualitative data. RESULTS: Twenty-two patients and eleven HCPs participated in this study. Patient QOL, generalized anxiety and depressive symptom scores revealed a complex interplay between psychosocial well-being and supportive LEL care after cancer. Three themes emerged from interviews with patients (n = 19) and HCPs (n = 11): level of lymphedema knowledge, effectiveness of rehabilitation oncology services and barriers to care. IMPLICATIONS FOR CANCER SURVIVORS: We developed a novel model for quality lymphedema care that emphasizes the importance of continued physical and psychosocial support for LEL patients, while illustrating the importance of HCPs in facilitating a smooth transition for patients to LEL care after cancer treatment.

The Quality of Life and Psychosocial Implications of Cancer-Related Lower-Extremity Lymphedema: A Systematic Review of the Literature.

Lower-extremity lymphedema (LEL) is a progressive, lifelong complication of cancer that places a substantial burden upon cancer survivors' quality of life (QOL) and psychosocial well-being. Despite its prevalence, cancer-related LEL is inconsistently diagnosed, treated, and poorly recognized by health care professionals. The purpose of this systematic review was to summarize and appraise the quantitative literature evaluating the impact of cancer-related LEL on patients' psychosocial well-being and QOL. Three databases (PubMed, PROQuest, and Scopus) were searched for observational research articles published before May 1st, 2020. Twenty-one articles were eligible (cross-sectional (n = 16), prospective cohort designs (n = 3), and retrospective cohort designs (n = 2)). The majority of studies reported a negative relationship between cancer-related LEL and global QOL and/or one or more psychosocial domains including (1) physical and functional; (2) psycho-emotional; (3) social, relational and financial. A greater number of LEL symptoms and higher LEL severity were associated with poorer QOL. Although the evidence to date suggests a negative relationship between cancer-related LEL and patients' QOL and psychosocial well-being, there is a substantial need for longitudinal analyses to examine the directionality and temporality of this effect in order to inform cancer survivorship care modelling and improve patient outcomes after cancer.