Lymphedema Symptom Intensity Research Articles

Patient-reported outcome measures and physical function following head and neck lymphedema - a systematic review.

Head and neck cancer (HNC) treatments often lead to significant morbidity, including lymphedema. This systematic review aims to comprehensively explore the prevalence and impact of head and neck lymphedema (HNL) following treatment. A systematic literature search was conducted up to September 2023. Studies evaluating HNL prevalence, associated factors, impact, patient-reported outcomes (PROMs), and physical assessments were included. Methodological quality assessment was performed, and data were synthesised narratively. Twelve studies met the inclusion criteria, with methodological quality ranging from moderate to high. Internal lymphedema prevalence was consistently higher than external lymphedema, with varying rates attributed to treatment modalities and assessment methods. PROMs such as the Lymphedema Symptom Intensity and Distress-Head and Neck and physical assessments including Patterson's Rating Scale were commonly utilised. HNL significantly impacted quality of life and physical function, with reported symptoms including discomfort, tightness, swallowing difficulties, and psychological distress. HNL is a common sequela of HNC treatment with significant implications for individuals' QoL. Standardised assessment protocols and tailored interventions are needed to address the needs of individuals with HNL and improve overall outcomes. This systematic review highlights a significant prevalence of lymphedema, particularly internal lymphedema in the larynx and pharynx, following treatment. Swallowing difficulties, nutritional issues, anxiety, depression, and body image concerns were associated with both internal and external lymphedema. The impact on quality of life is substantial, with survivors experiencing physical symptoms and psychosocial challenges, emphasising the importance of integrated care approaches tailored to both aspects of well-being.

Lymphovenous Anastomosis for the External and Internal Types of Head and Neck Lymphedema: A Case Series and Preliminary Clinical Results.

Head and neck lymphedema (HNL), including external and internal types, could be a possible consequence for patients who have received neck dissection and radiotherapy for head and neck cancer. Initially, the common presentations are heaviness or tightness, followed by swelling in appearance, or difficulty speaking and swallowing in internal edema cases. Lymphovenous anastomosis (LVA) is an established approach to treat extremity lymphedema. We hereby present our preliminary experience in using LVA to treat HNL. Between March 2021 and January 2024, six patients with HNL were treated with LVA via a preauricular or submandibular incision of the obstructed side. Lymphedema Symptom Intensity and Distress Surveys-Head and Neck (LSIDS-H&N) were used for evaluation. In addition, for the external type, MD Anderson Cancer Center Head and Neck Lymphedema (MDACC HNL) rating scale was used for evaluation. For the internal type, Swallowing Quality of Life was used for evaluation. With an average follow-up period of 15.4 ± 15.9 months, LSIDS-H&N improved from 1.11 ± 0.54 to 0.44 ± 0.66 (P = 0.02). For patients with the external type, within an average follow-up period of 15 ± 16.1 months, the MDACC HNL rating scale improved from level 2 to 0 or 1a (P = 0.008). For patients with the internal type, within an average follow-up period of 21 ± 17.3 months, Swallowing Quality of Life improved from 130.5 ± 9.2 to 151 ± 19.8 (P = 0.5). Based on our preliminary results, LVA could be a potential solution to both external and internal HNL.

Association Between Symptom Burden and Early Lymphatic Abnormalities After Regional Nodal Irradiation for Breast Cancer

Background: Dermal backflow visualized on near-infrared fluorescence lymphatic imaging (NIRFLI) signals preclinical lymphedema that precedes the development of volumetrically-defined lymphedema. We sought to evaluate whether dermal backflow correlates with patient-reported lymphedema outcomes (PRLO) surveys in breast cancer patients treated with regional nodal irradiation (RNI). Methods and Materials: Breast cancer patients planned for axillary dissection and RNI prospectively underwent perometry, NIRFLI, and PRLOs (the Lymphedema Symptom Intensity and Distress Survey (LSIDS) and QuickDash) at baseline, after surgery, and at 6, 12, and 18 months following radiation. Clinical lymphedema was defined as an arm volume increase ≥ 5% over baseline. Trends over time were assessed using ANOVA testing. The association between survey responses and both dermal backflow and lymphedema was assessed using a linear mixed-effects model. Results: Sixty participants completed at least two sets of measurements and surveys and were eligible for analysis. Fifty-four percent of patients had cT3-T4 disease, 53% cN3 disease, and 75% had a BMI >25. Dermal backflow and clinical lymphedema increased from 10% to 85% and from 0% to 40%, respectively, from baseline to 18mo. In the adjusted model, soft tissue sensation, neurologic sensation, and functional LSIDS subscale scores were associated with presence of dermal backflow (all p<0.05). Both dermal backflow and lymphedema were associated with Quickdash score (p<0.05). Conclusion: In this high-risk cohort, we found highly prevalent early signs of lymphedema, with increased symptom burden from baseline. Presence of dermal backflow correlated with PRLO measures, highlighting a potential NIRFLI use to identify patients for early intervention trials following RNI.

Body image and sexuality concerns in women with breast cancer-related lymphedema: a cross-sectional study.

(1) To determine, in women with breast cancer-related lymphedema (BCRL), the frequency, intensity and distress of body image and sexuality concerns. (2) To examine relationships between body image and sexuality concerns, and lymphedema, personal and cancer treatment factors. Women with BCRL (n = 64) completed the Lymphedema Symptom Intensity and Distress Scale - Arm (LSIDS-A), which focuses on the intensity and distress of a range of lymphedema symptoms. They also underwent a lymphedema assessment. Responses to eight questions from the LSIDS-A regarding sexuality, body image and intimate relationships were considered. Frequency of responses was tabulated. Multiple linear regressions were used to determine if specific factors were related to higher intensity and distress scores associated with body image and sexuality issues. Body image and sexuality concerns were common (48%, 23% respectively). Participants reported a range (0-10) of intensity and distress related to body image and sexuality symptoms. Univariate linear regression revealed greater intensity of sexuality concerns was associated with younger age, whilst distress related to sexuality concerns was associated with higher inter-arm bioimpedance ratio and shorter duration of lymphedema. Body image concerns were not related to any considered factors. Body image and sexuality concerns are common, intense and distressing for patients with breast cancer lymphedema. Assessment of both the intensity and distressed caused by these symptoms is necessary to understand the impact of lymphedema.

Validity and reliability of the Turkish version of the lymphedema symptom intensity and distress survey.

Objectives This study aims to adapt the Lymphedema Symptom Intensity and Distress Survey- Arm (LSIDS-Arm) into Turkish and to test its validity and reliability. Patients and methods Between September 2017 and July 2018, this descriptive, methodological study included a total of 186 women (mean age: 55.4±10.2 years; range, 20 to 80 years) who were diagnosed with breast cancer-related lymphedema (BCRL) and followed in the lymphedema outpatient clinic. Data were collected using sociodemographic and clinical features form, LSIDS-Arm, and Functional Assessment of Cancer Treatment-Breast Cancer Scale+4 (FACT-B+4). After the linguistic and content validity of the scale was achieved, confirmatory factor analysis and known-groups validation were utilized to test the construct validity. Reliability of the survey was tested using the Cronbach alpha and Spearman Brown coefficient, item analysis, and parallel forms reliability. Results All patients completed the questionnaire. After achievement of linguistic and content validity, confirmatory factor analysis results were found to be higher than the accepted value. Known-groups validation revealed a significant difference in the mean scores for the intensity and distress scales between the patients with and without lymphedema. Cronbach alpha for the subscales ranged from 0.61 to 0.86. Parallel forms reliability showed a moderate, significant correlation between subscales of the intensity and distress scales of the survey and the subscales of FACT-B+4. Conclusion The Turkish version of the survey is valid and reliable and can be used to evaluate symptoms, severity of symptoms, and distress caused by BCRL symptoms in the Turkish women.

Ultrasound: Assessment of breast dermal thickness: Reliability, responsiveness to change, and relationship to patient-reported outcomes.

The current study assessed the level of reliability of ultrasound to assess dermal thickness, a clinical feature of breast lymphedema. Additionally, the relationship of dermal thickness to patient-reported outcomes was investigated. Women (n=82) with unilateral breast edema secondary to treatment of breast cancer were randomized to an exercise or control group. Ultrasound measurements of the unaffected and affected breasts were taken at baseline and 12weeks later at 3-4cm superior, medial, inferior, and lateral to the nipple. Additionally, women completed breast-related questions from the European Organization Research and Treatment Committee Quality of Life breast cancer module (EORTC-BR23) and Lymphedema Symptom Intensity and Distress Questionnaire (LSIDS). Reliability of ultrasound measurements was determined on the unaffected breast. Intraclass correlation coefficients (2,1) ranged from 0.66 (95% CI: 0.52-0.77) for the lateral location to 0.84 (0.77-0.90) for the superior location. Percent close agreement (80%) on the unaffected breast ranged from 0.20 to 0.27mm compared to 0.57 to 0.93mm on the affected breast. The standard error of measurement (%) on the unaffected breast varied from 9% to 13% with smallest real difference 0.34-0.41mm. Dermal thickness of the affected breast was not-to-poorly associated with EORTC BR23 and LSIDS scores. Reliability of dermal thickness measurements of the breast was excellent for the superior, medial, and inferior locations, and fair to good for the lateral location. However, these measurements were not related to the symptom's women perceive and measured with the EORTC BR23 or LSIDS.

Abstract PS14-21: Refining loco-regional therapy for inflammatory breast cancer protocol in progress

Abstract Background: Inflammatory breast cancer (IBC) is the most aggressive locally advanced breast cancer subtype. It is associated with loco-regional recurrence rates of 12-25%, and neoadjuvant chemotherapy (NAC) followed by modified radical mastectomy and comprehensive chest wall and regional nodal radiotherapy remain the standard of care. As has been demonstrated in non-IBC, achievement of pathologic complete response (pCR) has been shown to be associated with improved loco-regional control, recurrence-free and overall survival. Advances in NAC for IBC have resulted in improved pCR rates in both the breast and the axilla, with overall axillary pCR rates of approximately 30%, reaching as high as 67% in patients with HER2-positive disease receiving HER2-directed therapy. Hypothesis: Sentinel lymph node biopsy (SLNB) may be feasible in IBC patients who experience a good clinical and pathologic response in the axilla to NAC. Primary Objective: To evaluate the sentinel lymph node (SLN) identification rate in stage III IBC patients who experience cN0 status at completion of NAC. Secondary Objective: To assess the incidence of lymphedema following standard local-regional therapy for IBC. Methods and Study procedures: In this feasibility study, 50 patients with cT4dN0-2M0 IBC will be enrolled in order to evaluate 40 patients whose axillary nodal status becomes cN0 upon completion of NAC. All patients will undergo a research breast biopsy and lymphoscintigram pre and post NAC to evaluate lymphatic drainage patterns and patency of breast and axillary lymphatics. Post NAC lymphoscintigraphy will be appropriately timed for pre-operative SLN mapping and all patients will undergo SLNB using dual tracers (Tc99 Sulfur colloid and blue dye) with immediate axillary lymph node dissection (ALND), at the time of mastectomy. The patient-reported Lymphedema Symptom Intensity and Distress Survey (LSIDS-A) will be collected at 6 timepoints. Patients will be followed for 2 years post-surgery for oncologic outcomes. Correlatives: We plan to evaluate genetic and phenotypic heterogeneity in IBC and to assess markers of angiogenesis and lymph-angiogenesis associated with IBC, as well as to explore immunologic aspects of the tumor microenvironment and their association with pCR. Statistics: The identification rate will be calculated as number of patients in whom SLNs were successfully identified over the number of patients with cN0 disease after NAC in whom SLN mapping was attempted. Using a Simon two-stage design (α=.10, β=.10), a SLN identification rate of ≥90% would result in considering this procedure feasible whereas an identification rate of ≤75% (null hypothesis) would lead to the conclusion that it is not feasible. In the first stage, if greater than 18 of 25 patients have SLNs identified, then a total of 40 patients will be enrolled. If fewer than 33 of 40 patients have SLN identified, then the null hypothesis is rejected. Citation Format: Faina Nakhlis, Meredith Regan, Heather Jacene, Beth Harrison, Jennifer Bellon, Jean Landry, Eren Yeh, Elizabeth Mittendorf, Beth Overmoyer, Tari King. Refining loco-regional therapy for inflammatory breast cancer protocol in progress [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr PS14-21.

Lymphedema Symptom Intensity and Distress Surveys-Truncal and Head and Neck, Version 2.0.

Background: A comparison of symptom prevalence, intensity, and distress for participants with truncal lymphedema, head and neck lymphedema, and no lymphedema identified a need for a truncal-specific, lymphedema-related symptom assessment tool and a revision of the Lymphedema Symptom Intensity and Distress Survey-Head and Neck (LSIDS-H&N). The purpose of this study was to institute the development of the Lymphedema Symptom Intensity and Distress Survey-Truncal (LSIDS-T) and revise the LSIDS-H&N. Methods and Results: A comprehensive midline measure and subsequent series of analyses were used to develop the LSIDS-T and revise the initial LSIDS-H&N. Participants included 97 without lymphedema, 82 with truncal lymphedema, and 72 with head and neck lymphedema. Cluster analysis for the LSIDS-T resulted in five clusters with a total of 21 items. Cluster analysis for the LSIDS-H&N resulted in seven clusters with a total of 31 items. Key correlations in expected directions were found with the validated measures for both surveys, and correlations with the Marlowe Crown Social Desirability Scale did not indicate issues with social desirability of response. Conclusion: The 24-item LSIDS-T and the 31-item revised LSIDS-H&N v.2 are promising additions to the suite of other LSIDS measures for use in clinical environments.

Refinement and Validation of the Head and Neck Lymphedema and Fibrosis Symptom Inventory

Lymphedema and fibrosis (LEF) are common yet overlooked late effects of head and neck cancer and its therapy. Lack of reliable and valid measures of head and neck LEF is a critical barrier to the timely identification and management of head and neck LEF. To fill this gap, we developed and pilot tested a 64-item patient-reported outcome measure ( Lymphedema Symptom Intensity and Distress Survey-Head and Neck, LSIDS-H&N). This article aims to report the process of further validation and refinement of the tool. A prospective, longitudinal study was conducted, and 120 patients with oral cavity and oropharyngeal cancer were recruited. Participants completed the LSIDS-H&N at pretreatment, end of treatment, and every 3 months up to 12 months after treatment. SAS PROC VARCLUS was used to generate preliminary clusters of item responses. Internal consistency of the item responses within each cluster was assessed using Cronbach's alpha. A total of 117 patients completed the study. The participants reported that the LSIDS-H&N was easy to understand and captured their symptoms and medical conditions. However, >50% of participants indicated that the survey was burdensome due to length. Thus, we proceeded with item reduction, and the shortened tool (33-item) was named Head and Neck Lymphedema and Fibrosis Symptom Inventory (HN-LEF Symptom Inventory). The subsequent exploration of symptom clusters identified 7 symptom domain clusters (eg, soft tissue and neurologic toxicity), all of which demonstrated good internal consistency. The HN-LEF Symptom Inventory has been carefully developed and refined to allow clinicians and researchers to capture LEF-associated symptom burden and function impairments. Additional rigorous psychometric testing of the tool is ongoing to further validate the strength and internal validity of this tool.

Development and Validation of the Lymphedema Symptom Intensity and Distress Survey-Lower Limb.

Lymphedema is a chronic, incurable condition that occurs most commonly in lower limbs (legs and feet). Increased morbidity is seen with this form of lymphedema, but there are few studies and even fewer tools intended to assess symptom burden in patients impacted by this condition. A questionnaire, the Lymphedema Symptom Intensity and Distress Survey-Lower Limb (LSIDS-L), was developed to fill this gap. The measure is composed of several clusters of symptoms thought to characterize lower limb lymphedema. The initial work was conducted to propose and assess the face validity of the clusters. Subsequently, work was undertaken to empirically evaluate the presence of the symptom clusters, assess the reliability of the cluster scores, and evaluate the validity of the scores by studying associations with other valid measures. During the initial work, the LSIDS-L was tested with lower limb lymphedema patients only, and in the subsequent work the LSIDS-L and valid measures were administered to patients with no lymphedema and with lower limb lymphedema. A total of 388 volunteers participated, 111 of whom indicated no diagnosis of lymphedema, and 277 indicated a diagnosis of lower limb lymphedema. Cluster analysis resulted in the exclusion of 5 items, yielding 8 clusters with a total of 31 items. Cluster scores demonstrated acceptable internal consistency, distinguished nonlymphedema patients from lower lymphedema patients, and demonstrated expected convergent and divergent validity with other valid measures. The LSIDS-L is a valid tool for detecting and quantifying symptom burden in patients with lower limb lymphedema.

Symptom Frequency, Intensity, and Distress in Patients with Lower Limb Lymphedema.

Patients with lower limb lymphedema experience symptoms of pain, swelling, tightness, and heaviness in their legs. Less is known of the intensity and distress associated with these symptoms. This study sought to identify and compare the symptoms and the level of intensity and distress associated with symptoms by type of lymphatic disruption. A cross-sectional design was used. Patients completed an online survey that included: a demographic form, the Lymphedema Symptom Intensity and Distress Survey-Leg, and an open-ended question. The most prevalent symptoms were swelling, concerns about looks, heaviness, tightness, fatigue, and reduced physical activity. Statistically significant differences were found among groups in coldness in legs (χ(2) (df=3) = 9.0, p = 0.03), lack of confidence in self (χ(2) (df=3) = 10.6, p = 0.014), and feeling less sexually attractive (χ(2) (df=6) = 12.6, p = 0.049). Group differences were also observed in the intensity of heaviness (χ(2) (df=3) = 9.11, p = 0.03), numbness, (χ(2) (df=3) = 10.66, p = 0.014), achiness (χ(2) (df=3) = 12.40, p = 0.006), skin flakiness (χ(2) (df=3) = 13.22, p = 0.004), and lack of interest in sex (χ(2) (df=3) = 8.95, p = 0.030). Statistically significant group differences were not found in distress related to symptoms. Despite the number of symptoms reported by patients with lower-limb lymphedema, only a few statistically significant differences in symptoms and level of intensity were observed by type of lymphatic disruption. No statistically significant group differences were found in the distress level associated with any of the symptoms.

Differences of symptoms in head and neck cancer patients with and without lymphedema.

Head and neck cancer (HNC) patients are at risk for developing external and internal lymphedema. Currently, no documentation of symptom differences between individuals with and without head and neck lymphedema is available. The purpose of this analysis was to examine symptom differences among HNC patients with and without lymphedema. Data were drawn from three cross-sectional studies of HNC patients >3months post-cancer treatment (total N = 163; 128 patients with lymphedema, 35 without lymphedema). External lymphedema was evaluated via physical examination; internal lymphedema was identified through endoscopic examination. Participant's head and neck lymphedema status was categorized into two groups: no indication of external or internal lymphedema and at least some indication of external or internal lymphedema. Lymphedema Symptom Intensity and Distress Survey-Head and Neck (LSIDS-H&N) was used to assess symptom burden. Descriptive statistics, McNemar, chi-squared, Wilcoxon signed-ranks, and Mann-Whitney tests were used. Twenty-three pairs of patients were identified and matched on the age, primary tumor site, tumor stage, and time since end of cancer treatment. Relative to patients without lymphedema, matched patients with lymphedema reported either increased symptom prevalence or severity or distress level for the following symptoms (prevalence differences of at least 15% between the matched groups and p < 0.05): (1) numbness; (2) tightness; (3) heaviness; (4) warmth; (5) pain without head/neck movement; (6) problems swallowing mashed or pureed foods; (7) trouble breathing; (8) blurred vision; (9) feel worse when flying in an airplane; and (10) swelling. Findings suggest that HNC-related lymphedema may be associated with substantial symptom burden. Studies with larger sample sizes are needed to replicate the findings.

Development and validation of the Lymphedema Symptom and Intensity Survey-Arm.

The purpose of this instrument development project was to create a self-report tool to evaluate arm lymphedema and associated symptoms in breast cancer survivors. The Lymphedema Symptom Intensity and Distress Survey-Arm (LSIDS-A) was developed and tested in three phases: phase 1-literature review and expert panel; phase 2-preliminary validation; and phase 3-final validation. Phase 1: The most common symptoms experienced by breast cancer survivors with lymphedema were identified. A 52-item scale was developed. Phase 2: 128 community-dwelling breast cancer survivors (64 with lymphedema, 64 without lymphedema) completed the LSIDS-A. Feedback from the participants was that the format was "clear" and "made sense"; therefore, the response structure was left intact. Sixteen items were deleted leaving a 36-item revised instrument. Phase 3: Subsequent testing in a total sample of 236 breast cancer survivors with lymphedema was undertaken. The Cronbach's alpha reliability values for the overall intensity and distress scores were 0.93 and 0.94, respectively. The Kuder-Richardson values ranged from 0.66 to 0.92. Divergent validity evaluated against Marlowe-Crowne Social Desirebility Scale overall was acceptable (intensity, r s = 0.08; distress, r s = -0.12). Convergent validity was acceptable as tested with multiple instruments (e.g., Functional Assessment of Cancer Therapy-Breast +4, overall intensity r s = -0.44, overall distress r s = -.48) CONCLUSIONS: The 30-item LSIDS-A is a valid and reliable instrument that can be used to assess arm lymphedema and its associated symptoms.

Comparison of Symptoms in Head-and-Neck Cancer Patients With and Without Lymphedema: A Pilot Data Analysis: Survivorship

Head and neck cancer (HNC) patients are at risk for developing secondary lymphedema due to cancer treatment. Head and neck lymphedema may involve external sites (eg, face) and internal structures (eg, pharynx). Our previous study identified that 75.3% patients had secondary lymphedema post HNC treatment and increased lymphedema severity was associated with substantial symptom burden. Because lymphedema is associated with unique symptoms, a self-reported tool, Lymphedema Symptom Intensity and Distress Survey-Head & Neck (LSIDS-H&N), was developed to study this phenomenon.

Preliminary development of a lymphedema symptom assessment scale for patients with head and neck cancer

Currently, no instruments are available to assess symptoms secondary to lymphedema in patients with head and neck cancer (HNC). The study aim was to develop and conduct preliminary tests of such an instrument. A preliminary item pool was generated from a literature review, previous work in breast cancer-related lymphedema, and an observational study. The item pool was revised based on an expert panel's suggestions and feedback from 18 patients with HNC. The current questionnaire, the Lymphedema Symptom Intensity and Distress Survey-Head and Neck (LSIDS-H&N), was then pilot tested in 30 patients with HNC. Preliminary testing (1) demonstrated feasibility, readability, and ease of use of the LSIDS-H&N and (2) identified that there was a considerable level of symptom burden in the cohort of patients in the piloting sample. Content validity of the LSIDS-H&N was supported by the expert panel during development of the LSIDS-H&N. Further testing is ongoing.