Lymphedema self-care: economic cost savings and opportunities to improve adherence.

BACKGROUND: Breast cancer-related lymphedema (BCRL) imposes a significant economic burden on patients, providers, and society. There is no curative therapy for BCRL, but management through self-care can reduce symptoms and lower the risk of adverse events. MAIN BODY: The economic burden of BCRL stems from related adverse events, reductions in productivity and employment, and the burden placed on non-medical caregivers. Self-care regimens often include manual lymphatic drainage, compression garments, and meticulous skin care, and may incorporate pneumatic compression devices. These regimens can be effective in managing BCRL, but patients cite inconvenience and interference with daily activities as potential barriers to self-care adherence. As a result, adherence is generally poor and often worsens with time. Because self-care is on-going, poor adherence reduces the effectiveness of regimens and leads to costly treatment of BCRL complications. CONCLUSION: Novel self-care solutions that are more convenient and that interfere less with daily activities could increase self-care adherence and ultimately reduce complication-related costs of BCRL.

Lymphoedema, a significant health problem in Israel: A descriptive community-based study.

Lymphoedema (LE) is recognised as a chronic disabling disease. Knowledge on patient characteristics, treatments, and outcomes in Israel is lacking. The aim of the study was to (a) describe demographic and health characteristics, treatments, utilisation, and functional outcomes of patients receiving physical therapy due to LE in a large nationwide healthcare provider in Israel; and (b) assess the feasibility of conducting a future practice-based evidence (PBE) study. This is a retrospective observational cohort study. Descriptive analyses of an electronic medical record database were performed. Data from 6013 patient episodes were analysed. A high proportion of patients had two or more comorbidities (80%) and chronic medication use (85%) with increasing rates over the 8-year period. The most frequent LE classification was stage 2 (45%). A majority of LE was in the lower limbs (51%) with increasing rates over the years. The most frequent treatment-related activity was measuring limb circumference and the most frequent intervention was educating for self-management. This study provides a first comprehensive description of patient characteristics receiving physical therapy for LE in Israel. The available database offers an opportunity for PBE studies. Recommendations for improvements in specific data collection processes were identified.

Recent progress in the treatment and prevention of cancer-related lymphedema.

This article provides an overview of the recent developments in the diagnosis, treatment, and prevention of cancer-related lymphedema. Lymphedema incidence by tumor site is evaluated. Measurement techniques and trends in patient education and treatment are also summarized to include current trends in therapeutic and surgical treatment options as well as longer-term management. Finally, an overview of the policies related to insurance coverage and reimbursement will give the clinician an overview of important trends in the diagnosis, treatment, and management of cancer-related lymphedema.

A systematic review of m-health apps on managing side effects of breast cancer treatment.

PURPOSE: After breast cancer treatment, women with breast cancer may experience distress caused by treatment side effects, both in physical and psychological aspects. Technology use is increasing in favor among women. Therefore, it is essential to update the scientific evidence regarding mobile and web apps' effectiveness in managing the side effects of breast cancer treatments for breast cancer survivors. The purpose of this systematic review was to investigate the scientific evidence on the effectiveness of mobile and web apps in managing the side effects of breast cancer treatments among this group. METHODS: A literature search was conducted using ScienceDirect, Scopus, PubMed, CINAHL, and Cochrane. Published papers in English focused on mobile and web apps and the side effects of breast cancer treatment in breast cancer survivors were selected. The search reviewed studies from January 2011 to December 2021. From a total of 925 retrieved manuscripts, 11 studies were included for analysis. RESULTS: The findings showed that mobile apps were more frequently used and more likely to be an effective method for managing the side effects of breast cancer treatment among breast cancer survivors. The content in web or mobile apps for breast cancer survivors should include five categories: (1) information about cancer, (2) overview of cancer care, (3) opportunities for interaction with other people, (4) symptom management strategies, and (5) feedback about cancer treatment side effect management. However, a few studies examined the effects of a combination of mobile and web apps in managing breast cancer treatment side effects. Therefore, future research is needed to examine solo and combination use. In addition, more rigorous studies are warranted to examine these interventions. CONCLUSIONS: Nurses may refer survivors to these resources to obtain more information and effectively manage the signs and symptoms of breast cancer and its treatment side effects.

Lymphedema rehabilitation: Provision and practice patterns among service providers: National survey.

Information on the current practices and quantification of lymphedema service may be beneficial to promote and improve the current health care system. Therefore, this study aimed to describe the characteristics of lymphedema practitioners, and lymphedema patients' profiles, and provide a comprehensive picture of lymphedema service provision in Saudi Arabia. A cross-sectional study design used an online survey to gather data. The survey included information about demographic and professional characteristics of lymphedema practitioners, lymphedema profiles, questions on the services provided, and perceived barriers in providing services. Eighteen lymphedema practitioners (38%) responded to the survey. Most of the respondents were physical therapists (94%), who had completed 135 hours of basic training course, and were certified as lymphedema therapists (89%). Most of these practitioners were in Riyadh (58%), Jeddah (25%), and Dammam (17%). About 75% of patients seen by practitioners had secondary lymphedema, predominately breast cancer-related lymphedema (47%). The average number of lymphedema practitioners per service is three. The perceived barriers reported included an inadequate number of certified therapists (100%), difficulties with transportation and lack of financial support (each; 72%), and limited space for lymphedema practice/management (89%). The results suggest lymphedema practitioners provide reasonable services for lymphedema patients; however, services are still limited and needs are unmet. Therefore, more staffing is required to promote awareness of the condition and related services, to develop and implement appropriate educational strategies, and improve geographical and multidisciplinary coordination of the services in Saudi Arabia.

Health-related quality of life outcomes for the LEAP study-CALGB 70305 (Alliance): A lymphedema prevention intervention trial for newly diagnosed breast cancer patients.

BACKGROUND: Lymphedema is an adverse effect of breast cancer treatment that causes swelling and pain in the arm and hand. We tested 2 lymphedema prevention interventions and their impact on health-related quality of life (HRQOL) in a group-randomized trial at 38 cooperative group sites within the United States. METHODS: Patients were recruited before breast surgery. Sites were randomly assigned to education-only (EO) lymphedema prevention or education plus exercise and physical therapy (LEAP). Lymphedema was defined as a ≥10% difference in arm volume at any time from baseline to 18 months postsurgery. HRQOL was assessed using the Functional Assessment of Cancer Therapy-Breast plus 4 lymphedema items (FACT-B+4). Longitudinal mixed model regression analysis, adjusting for key demographic and clinical variables, examined participants' HRQOL by intervention group and lymphedema status. RESULTS: A total of 547 patients (56% LEAP) were enrolled and completed HRQOL assessments. The results revealed no differences between the interventions in preventing lymphedema (P = .37) or HRQOL (FACT-B+4 total score; P = .8777). At 18 months, the presence of lymphedema was associated with HRQOL at borderline significance (P = .0825). However, African American patients reported greater lymphedema symptoms (P = .0002) and better emotional functioning (P = .0335) than patients of other races or ethnicities. Lower HRQOL during the intervention was associated with younger age (P ≤ .0001), Eastern Cooperative Oncology Group performance status >0 (P = .0002), ≥1 positive lymph nodes (P = .0009), having no education beyond high school (P < .0001), having undergone chemotherapy (P = .0242), and having had only axillary node dissection or sentinel node biopsy versus both (P = .0007). CONCLUSION: The tested interventions did not differ in preventing lymphedema or in HRQOL outcomes. African American women reported greater HRQOL impacts due to lymphedema symptoms than women of other races or ethnicities.

A randomized study to prevent lymphedema in women treated for breast cancer: CALGB 70305 (Alliance).

BACKGROUND: Lymphedema affects many women who are treated for breast cancer. We examined the effectiveness of an education-only (EO) versus education plus sleeve compression/exercise intervention (lymphedema education and prevention [LEAP]) on lymphedema incidence and range of motion (ROM) in a group-randomized trial across 38 cooperative group sites. METHODS: The treating institution was randomly assigned to either EO or LEAP by a study statistician. All patients at a treating institution participated in the same intervention (EO or LEAP) to minimize contamination bias. Participants completed surveys, arm volume measurements, and self-reported ROM assessments before surgery and at 12 and 18 months after surgery. Lymphedema was defined as a ≥10% difference in limb volume at any time post-surgery up to 18 months after surgery or diagnosis by a health provider. Cochran-Mantel-Haenszel tests were used to compare lymphedema-free rates between groups, stratified by lymph node surgery type. Self-reported ROM differences were compared between groups. RESULTS: A total of 554 participants (56% LEAP) were included in the analyses. At 18 months, lymphedema-free rates were 58% (EO) versus 55% (LEAP) (P = .37). ROM for both arms was greater in LEAP versus EO at 12 months; by 18 months, most women reported full ROM, regardless of group. In LEAP, only one-third wore a sleeve ≥75% of the time; 50% performed lymphedema exercises at least weekly. CONCLUSION: Lymphedema incidence did not differ by intervention group at 18 months. Poor adherence in the LEAP group may have contributed. However, physical therapy may speed recovery of ROM. Further research is needed to effectively reduce the incidence and severity of lymphedema in patients who have breast cancer.

Standardization of lower extremity quantitative lymphedema measurements and associated patient-reported outcomes in gynecologic cancers.

Practice changing standardization of lower extremity lymphedema quantitative measurements with integrated patient reported outcomes will likely refine and redefine the optimal risk-reduction strategies to diminish the devastating limb-related dysfunction and morbidity associated with treatment of gynecologic cancers. The National Cancer Institute (NCI), Division of Cancer Prevention brought together a diverse group of cancer treatment, therapy and patient reported outcomes experts to discuss the current state-of-the-science in lymphedema evaluation with the potential goal of incorporating new strategies for optimal evaluation of lymphedema in future developing gynecologic clinical trials.

Associations between religious and spiritual variables and neuroimmune activity in survivors of breast cancer: a feasibility study.

PURPOSE: Chronic stress is associated with neuroimmune inflammation and adverse outcomes in breast cancer survivors. Some breast cancer survivors rely on religious and spiritual (R/S) variables to manage stress after breast cancer treatment. A spiritually based psychoneuroimmunological (PNI) model of health suggests that R/S variables influence neuroimmune activity; however, these associations are not well-established. A pilot study was conducted to assess the feasibility of studying associations between R/S variables and neuroimmune biomarkers in breast cancer survivors. METHOD: Salivary alpha-amylase (sAA) and interleukin-6 (IL-6) were sampled among women previously treated for breast cancer. The primary aim was to assess feasibility and acceptability of the sampling protocol. A secondary aim explored associations between sAA, IL-6, R/S variables, and health outcomes. RESULT: Forty-one women completed the study. Biomarker sampling yielded 246 acceptable specimens used for analysis. SAA was detectable in 96% of specimens and IL-6 was detectable in 44% of specimens. The R/S variables with the strongest associations to sAA were spiritual self-rank (rs = .39; p < .05) and forgiveness (rs = .40; p < .05). The R/S variable with the strongest association to salivary IL-6 was positive congregational support (rs = .42; p < .05). CONCLUSION: Feasibility and acceptability of the sampling protocol were confirmed. Reference ranges for sAA and IL-6 for female breast cancer survivors are presented. Results suggest that spiritual beliefs and religious practices are associated with neuroimmune activity, adding credence to a spiritually based PNI model of health. Findings lay the foundations for future R/S-based interventions to promote health and well-being in breast cancer survivors.

Online couples mindfulness-based intervention for young breast cancer survivors and their partners: A randomized-control trial.

PURPOSE: Young breast cancer survivors (YBCS) face unique challenges in coping with disease, distress, and relationship concerns. The purposes of this study were to understand the acceptability and feasibility of an online Mindfulness-Based Intervention (MBI) for YBCS and their partners (i.e., Couples Mindfulness-Based Intervention: C-MBI) and to compare the effectiveness of the C-MBI to a closely-matched control, an online MBI for individuals (I-MBI). METHODS: YBCS and their partners were recruited. Couples were randomly assigned to an 8-week C-MBI (couples = 41) or to I-MBI (couples = 36), which included one-hour video modules, a manual, and guided-meditation audios. Both couple members participated in the C-MBI; only the YBCS participated in the control I-MBI. Participants answered surveys about individual- and couple-level functioning at baseline and post-intervention. RESULTS: Online delivery was shown to be feasible and acceptable. For YBCS and their partners, levels of perceived stress, anxiety, depression, and fatigue were lower after the intervention, in both conditions. Unexpectedly, however, participating in the C-MBI appeared to have detrimental effects on dyadic adjustment and relationship quality. CONCLUSION: Although YBCS and their partners reported online delivery was acceptable and benefited well-being, for couple-based MBIs to have benefits for relationship functioning, it may be necessary for couples to have the support of other couples and an instructor. Online delivery may be particularly acceptable and effective for clinical populations, including YBCS. Medical professionals may be more likely to recommend online-MBI programs to cancer survivors, because the programs are of little or no cost.

Upper extremity disability and quality of life after breast cancer treatment in the Greater Plains Collaborative clinical research network.

PURPOSE: Chronic upper extremity disability (UED) is common after breast cancer treatment but under-identified and under-treated. Although UED has been linked to quality of life (QoL), the role of UED as mediator between contemporary treatment practices and QoL has not been quantified. This investigation describes UED in a contemporary sample of breast cancer patients and examines its relationship with personal and treatment factors and QoL. METHODS: Eight hundred and thirty-three women diagnosed at eight medical institutions during 2013-2014 with microscopically confirmed ductal carcinoma in situ or invasive stage I-III breast cancer were surveyed an average of 22 months after diagnosis. UED was measured with a modified QuickDASH and QoL with the FACT-B. The questionnaire also collected treatments, sociodemographic information, comorbidity, body mass index, and a 3-item health literacy screener. RESULTS: Women who received post-mastectomy radiation and chemotherapy experienced significantly worse UED and QoL. Women who had lower income, lower health literacy and prior diabetes, arthritis or shoulder diagnoses had worse UED. Patients with worse UED reported significantly worse QoL. Income and health literacy were independently associated with QoL after adjustment for UED but treatment and prior conditions were not, indicating mediation by UED. UED mediated 52-79% of the effect of mastectomy-based treatments on QoL as compared with unilateral mastectomy without radiation. UED and QoL did not differ by type of axillary surgery or post-mastectomy reconstruction. CONCLUSIONS: A large portion of treatment effect on QoL is mediated by UED. Rehabilitation practices that prevent and alleviate UED are likely to improve QoL for breast cancer survivors.

Lymphedema symptoms and limb measurement changes in breast cancer survivors treated with neoadjuvant chemotherapy and axillary dissection: results of American College of Surgeons Oncology Group (ACOSOG) Z1071 (Alliance) substudy.

PURPOSE: Lymphedema is a potential complication of breast cancer treatment. This longitudinal substudy aimed to prospectively assess arm measurements and symptoms following neoadjuvant chemotherapy and axillary dissection in the ACOSOG/Alliance Z1071 trial to characterize the optimal approach to define lymphedema. METHODS: Z1071 enrolled patients with cT0-4, N1-2, M0 disease treated with neoadjuvant chemotherapy. All patients underwent axillary dissection. Bilateral limb volumes, circumferences, and related symptoms were assessed pre-surgery, 1-2 weeks post-surgery, and semiannually for 36 months. Lymphedema definitions included volume increase ≥ 10% or limb circumference increase ≥ 2 cm. Symptoms were assessed by the Lymphedema Breast Cancer Questionnaire. RESULTS: In 488 evaluable patients, lymphedema incidence at 3 years by ≥ 10%-volume-increase was 60.3% (95% CI 55.0-66.2%) and by ≥ 2 cm-circumference increase was 75.4% (95% CI 70.8-80.2%). Symptoms of arm swelling and heaviness decreased from post-surgery for the first 18 months and then were relatively stable. The 3-year cumulative incidence of arm swelling and heaviness was 26.0% (95% CI 21.7-31.1%) and 30.9% (95% CI 26.3-36.3%), respectively. There was limited agreement between the two measurements (kappa 0.27) and between symptoms and measurements (kappa coefficients ranging from 0.05-0.09). CONCLUSIONS: Lymphedema incidence by limb volume and circumference gradually increased over 36 months post-surgery, whereas lymphedema symptoms were much lower. These findings underscore the importance of prospective surveillance and evaluation of both limb measurements and symptom assessment. Lymphedema incidence rates varied by definition. We recommend that ≥ 10% volume change criterion be used for lymphedema evaluation for referral for specialist care. TRIAL REGISTRATION: NCT00881361.

Treatment Documentation in Practice-Based Evidence Research for Patients Receiving Physical Therapy Because of Lymphedema.

OBJECTIVES: To describe development and testing of a physical therapy treatment code documentation taxonomy. DESIGN: Clinician survey within a practice-based evidence study framework for patients with lymphedema. SETTING: Outpatient physical therapy clinics within a large public health care service using a central electronic medical record. PARTICIPANTS: Certified lymphedema therapists (CLTs) (N=43). INTERVENTION: Treatment coding of 10 treatment vignettes representing real-life clinical scenarios. The CLTs were asked to accurately select 35 activity-intervention combination codes. MAIN OUTCOME MEASURES: The CLT score represented percentage of treatment codes accurately selected by each therapist. The code score represented percentage of CLTs who accurately selected each treatment code. RESULTS: The mean CLT score was 91%, with 72% of CLTs meeting the 90% criterion. Personal feedback was provided to each CLT. The mean code score was also 91%; with 71% of treatment codes meeting the 90% criterion. We identified 9 low-score codes needing additional education or found to be redundant. These codes were either clarified or removed. CONCLUSIONS: The proposed treatment code documentation system for lymphedema therapy was found to be clear and accurately used by most CLTs. Specific needs for improvement were identified. Follow-up testing is warranted to ensure ongoing accurate implementation of the treatment documentation system.

Decision making in pediatric hematopoietic cell transplantation: Influential factors vary among diseases.

Hematopoietic cell transplantation (HCT) is not a trivial treatment decision in pediatrics. We sought to understand what influences this decision-making process from the perspectives of the pediatric patients, their family, and physicians. Using integrative review methods, we identified 19 relevant studies: six qualitative, ten quantitative, and three mixed methods. Synthesis of the results revealed six themes describing patient, family, and provider decision-making processes with distinct subthemes contrasting influential factors among malignant and nonmalignant diseases. Identification of what influences HCT decision making will aid in development of decision support, education, and communication strategies. The child/adolescent voice and provider perspective warrant more attention.

Return to work among breast cancer survivors: A literature review.

PURPOSE: Breast cancer survivors in their employment years are likely to try to go back to work after the primary treatment. Because the literature on return to work among breast cancer survivors is limited, we have undertaken a review of the literature to summarize what is known, including identifying important contributing variables and outcomes. This knowledge may be used to develop hypotheses and potential interventions to support breast cancer survivors who wish to return to work. METHOD: We searched the following databases: CINAHL, MEDLINE, SCOUP, and PUBMED, within a 10-year timeframe (2004 to 2014). RESULTS: The majority of reviewed articles (N = 25) focused on three outcomes: return-to-work period, work ability, and work performance. The most frequently studied independent variables were collapsed into the following groups: health and well-being, symptoms and functioning, work demands and work environment, individual characteristics, and societal and cultural factors. Gaps in the literature include evidence of effective interventions to support return to work among breast cancer survivors and research to better understand the roles of government and business-related policy. CONCLUSION: All the studies reported a reduced work engagement and work ability. Employment status and work performance is associated with a combination of individual factors, work environment, culture, and resources. IMPLICATIONS: Significant gaps are apparent in the literature addressing breast cancer survivorship and return to work. This is a complex problem and it will likely require interdisciplinary research teams to develop effective and feasible interventions for this population.

The Performance of Alcohol Markers Including Ethyl Glucuronide and Ethyl Sulphate to Detect Alcohol Use in Clients in a Community Alcohol Treatment Programme.

AIMS: The ethanol metabolites ethyl glucuronide (EtG) and ethyl sulphate (EtS) are detectable for longer in urine than breath ethanol or urine ethanol after alcohol intake. This study compared the performance of breath ethanol, urine ethanol, urine EtG and EtS to detect alcohol consumption in clients in community alcohol treatment. METHODS: Clients attending the community alcohol treatment programme were asked to provide an alcohol diary, breathalyser test and urine for ethanol, EtG and EtS measurement (n = 42). Positive results were defined using the detection limits (breath ethanol and urine ethanol) or clinical cut-offs (EtG: 0.26 mg/L and EtS: 0.22 mg/L). The sensitivities and specificities of each marker to detect alcohol intake <24 and 48-72 h prior were calculated. RESULTS: The sensitivities of each alcohol marker to detect alcohol intake <24 h prior were 57, 71, 100 and 100% for breath ethanol, urine ethanol, urine EtG and urine EtS, respectively. The specificity was 100% for urine ethanol and urine EtS. The EtG specificity could be increased to 100% by using a higher cut-off (0.50 mg/L). The sensitivity of all markers (including EtG and EtS) to detect alcohol intake of ≤10 units 48-72 h earlier decreased to 0%. CONCLUSIONS: In community alcohol treatment clients, urine EtG and EtS showed the optimum diagnostic performance to detect alcohol intake in the previous 24 h. We propose a flowchart to routinely use EtG and EtS for clients in community alcohol treatment. SHORT SUMMARY: The ability of breath ethanol, urine ethanol, urine EtG and urine EtS to detect continued alcohol consumption in clients in community alcohol treatment were compared. Urine EtG and EtS showed the optimum diagnostic performance and we propose a flowchart to routinely use EtG and EtS in community alcohol treatment.

Skin and Wound Care in Lymphedema Patients: A Taxonomy, Primer, and Literature Review.

BACKGROUND: Lymphedema is a condition of localized protein-rich swelling from damaged or malfunctioning lymphatics. Because the immune system is compromised, there is a high risk of infection. Infection in patients with lymphedema may present in a variety of ways. OBJECTIVE: The goals of this review were to standardize the terminology of skin breakdown in the context of lymphedema, synthesize the available information to create best practice recommendations in support of the American Lymphedema Framework Project update to its Best Practices document, and create recommendations for further research. DATA SOURCES: Publications on skin care and wounds were retrieved, summarized, and evaluated by a team of investigators and clinical experts. STUDY SELECTION AND DATA EXTRACTION: Terms for lymphedema-associated skin breakdown were compiled and paired with photographs of commonly noted skin changes among patients with lymphedema. A list of standard dermatological terms was created. A more extensive literature search was then conducted by all authors. DATA SYNTHESIS: Skin disorders associated with lymphedema have been classified into 5 categories. Descriptions, photographs, and recommendations for treatment are presented. CONCLUSIONS: Skin care is an important defense against infection. Because of the lack of research, a consensus of thought and content leaders' opinion should guide the best practices for wound care in lymphedema.

The long-term risk of upper-extremity lymphedema is two-fold higher in breast cancer patients than in melanoma patients.

BACKGROUND AND OBJECTIVES: We assessed the cumulative incidence, symptoms, and risk factors for upper-extremity lymphedema in breast cancer and melanoma patients undergoing sentinel lymph node biopsy or axillary lymph node dissection. METHODS: Patients were recruited preoperatively (time 0) and assessed at 6, 12, and 18 months postoperatively. Limb volume change (LVC) was measured by perometry. Lymphedema was categorized as none, mild (LVC 5-9.9%), or moderate/severe (LVC≥10%). Symptoms were assessed with a validated lymphedema instrument. Longitudinal logistic regression analyses were conducted to identify risk factors associated with moderate/severe lymphedema. RESULTS: Among 205 breast cancer and 144 melanoma patients, the cumulative incidence of moderate/severe lymphedema at 18 months was 36.5% and 35.0%, respectively. However, in adjusted analyses, factors associated with moderate/severe lymphedema were breast cancer (OR 2.0, P = 0.03), body mass index ≥ 30 kg/m(2) (OR 1.6, P = 0.04), greater number of lymph nodes removed (OR 1.05, P < 0.01), and longer interval since surgery (OR 2.33 at 18 months, P < 0.01). CONCLUSIONS: Lymphedema incidence increased over time in both cohorts. However, the adjusted risk of moderate/severe lymphedema was two-fold higher in breast cancer patients. These results may be attributed to surgical treatment of the primary tumor in the breast and more frequent use of radiation.

Self-care status, symptom burden, and reported infections in individuals with lower-extremity primary lymphedema.

PURPOSE: The purposes of this study were (a) to evaluate self-care, symptom burden, and reported infections among individuals with lower-extremity primary lymphedema; (b) to examine the differences in self-care, symptom burden, and reported infections between individuals with unilateral and those with bilateral lower-extremity primary lymphedema; and (c) to examine the associations among self-care status, symptom burden, and reported infections in individuals with lower-extremity primary lymphedema. DESIGN: A secondary data analysis was used. Data were collected from a cross-sectional survey study supported by the National Lymphedema Network from March 2006 through January 2010. The surveys were available both online and in hard copy in order to increase accessibility. METHODS: Descriptive statistics were conducted and associations between variables were assessed using Mann-Whitney tests and chi-square tests of independence. Multiple logistic regression was used to test for associations while controlling for potentially confounding variables. FINDINGS: A total of 803 participants reported having lower-extremity primary lymphedema. The majority of the participants were female (82.9%), White (74.2%), and from the United States (90.7%). Approximately two thirds of the respondents conducted some home daily lymphedema self-care. Over half of the respondents reported experiencing symptom burden and 44.8% reported at least one episode of infection. Compared to individuals with unilateral lower-extremity primary lymphedema, individuals with bilateral lower-extremity lymphedema were more likely to conduct skin care (p = .004), use alternative medications (p = .005), more frequently reported symptoms (p < .05), and more likely to report at least one episode of infection (p = .002). Respondents who reported use of compression garments also were less likely to have self-reported pain (p = .002), poor range of motion (p = .026), and numbness (p = .001). Participants who reported exercising also were less likely to have self-reported pain (p = .003). Participants who reported at least one episode of infection also reported experiencing more symptoms (p < .001). CONCLUSIONS: Individuals with lower-extremity primary lymphedema experienced substantial symptom burden and infection episodes. Significant associations were identified among self-care, symptom burden, and reported infections. CLINICAL RELEVANCE: The findings support the need for clinicians to educate patients with lower-extremity primary lymphedema regarding the importance of self-care, symptom management, and infection control. It is critically important for clinicians to evaluate symptom burden and reduce infections in individuals with lower-extremity primary lymphedema.