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Background: Lymphoedema is a condition of localised swelling caused by a compromised lymphatic system. The protein-rich fluid accumulating in the interstitial tissue can create inflammation and irreversible changes to the skin and underlying tissue. An array of methods has been used to assess and report these changes. Heterogeneity is evident in the clinic and in the literature for the domains assessed, outcomes and outcome measures selected, measurement protocols followed, methods of analysis, and descriptors used to report change. Objective: This study seeks consensus on the required items for inclusion in a core data set for upper limb lymphoedema to digitise the monitoring and reporting of upper limb lymphoedema. Methods: The breadth of outcomes and descriptors in common use were captured in prior studies by this research group. This list was refined by frequency and proposed to experts in the field (n = 70) through a two-round online modified Delphi study. These participants rated the importance of each item for inclusion in the dataset and identified outcomes or descriptors they felt were missing in Round 1. In Round 2, participants rated any new outcomes or descriptors proposed and preference for how numeric data is displayed. Results: The core dataset was confirmed on completion of Round 2. Interlimb difference as a percentage, and limb volume were preferred for graphed display over time; and descriptors for observed and palpated change narrowed from 42 to 20. Conclusion: This dataset provides the foundation to create a clinical support system for upper limb lymphoedema.

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Background: Clinical management of lymphedema requires assessment, initially for detection, and then for determining treatment response and informing the treatment plan. It is unknown how the components of a lymphedema assessment are used in a clinical environment. Methods and Results: Experienced lymphedema therapists were observed assessing patients presenting with new or existing upper body lymphedema. Occupational and physiotherapists specializing in lymphedema management (n = 14) from public and private, rural and urban settings in Australia were visited at their work sites and observed with a minimum of two patients. In total, 37 upper limb assessments were observed. Reasons for attendance included: initial assessment with new swelling (n = 4); screening/detection for possible lymphedema (n = 3); bandaging as part of an intensive treatment program (n = 2); and review (n = 28). Clinicians were observed, in order of frequency, using (1) patient-reported outcomes, (2) palpation, (3) visual assessment, (4) assessment of limb size using circumference measurements, and (5) assessment of extracellular fluid using bioimpedance spectroscopy. Although clinicians selected similar assessments, differences were observed in the measurement protocols and informed reported. Objective assessment was commonly absent when the time available for an appointment was 30 minutes. Conclusions: While clinicians spent a significant portion of an appointment time assessing the limb, a standardized approach to the assessment of lymphedema was not observed. In the absence of a standardized assessment set, therapists have developed bespoke assessment routines.

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Background: A variety of objective and subjective assessments are available for clinical assessment of lymphedema. The aim of this study was to explore the clinical reasoning underpinning the assessment of upper limb lymphedema by experienced lymphedema clinicians. Methods and Results: Semistructured, individual, interviews were conducted with lymphedema therapists (n = 14) from a variety of treatment settings. These interviews were conducted after observations of these therapists assessing patients with lymphedema and focused on: (1) the therapists' rationale for the assessments selected, (2) how the data were analyzed, and (3) how the information was then used. Assessment selection was guided by the purpose of the visit, patient preference, resources, and time available. Subjective measures of visible and palpated tissue changes were used to target treatment, and objective measures of circumference and bioimpedance spectroscopy and patient report of symptoms informed treatment evaluation and disease progression. Objective data collected were primarily analyzed for interlimb difference and change between appointments. Conclusions: A range of clinical assessments were used in the evaluation of lymphedema to detect the presence of lymphedema, estimate the extent of soft tissue change, understand the patient experience of lymphedema, and evaluate treatment response. A primary determinant for the collection of objective measures was the appointment duration. Current methods of data analysis and reporting do not facilitate the review of change over time.

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PURPOSE: To ascertain how change in upper body lymphedema is assessed and understand how clinically significant change is determined. METHOD: A systematic search of the literature resulted in 55 eligible studies for analysis. RESULTS: A range of assessment methods, measurement protocols, and outcomes were used in the literature. Of the 21 studies in which thresholds for change were set a priori, 20 different thresholds were reported. CONCLUSION: How data was measured, analysed and reported was inconsistent across studies. Consensus on a core outcome set with standardised assessment protocols and reporting; and investigation into empirically based minimum important differences (MID) is needed.

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BACKGROUND: The aim of this study was to describe availability of treatment for lymphoedema in Australia to enable physicians to manage patients with lymphoedema. METHODS: A validated questionnaire was sent to the Review and Survey Group of the Breast Cancer Network of Australia in May 2010 (n = 760) to investigate consumers' perspectives on treatment access. RESULTS: Responses were received from 444 women (58%) of whom 140 had received lymphoedema treatment in the previous 5 years. Barriers were encountered by 33% (n = 46). These barriers included access to a lymphoedema therapist (n = 34), treatment affordability (n = 27), need to travel to access treatment (n = 21) and not knowing where to find help (n = 20). DISCUSSION: One-third of this group of women had difficulty accessing treatment to halt this potentially progressive condition. The general practitioner has an important role in detecting this condition, and advising where treatment can be accessed and which schemes might assist financially.

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Limited high-quality research has focused on the efficacy of lymphedema treatments and symptomatic relief. With that in mind, the authors conducted a cross-sectional survey to describe the presentation of breast cancer-related lymphedema, treatment modalities used, and perceived effectiveness. An electronic validated questionnaire to assess the presentation of lymphedema, severity of swelling and discomfort, number of modalities tried, and the benefits gained from treatment was completed by the Review and Survey Group of the Breast Cancer Network of Australia. Thirty-five percent of participants reported the presence of lymphedema, a majority of which reported it to be mild or moderate for magnitude of swelling and for discomfort. The correlation was weak between magnitude of swelling and discomfort. Compression, massage, and exercise were the most commonly used modalities in these patients. Notably, chest wall or breast lymphedema--about which research is lacking--was as common as hand lymphedema. Women experienced discomfort and physical changes, although the severity of the two was not related. Some benefit was reported for all modalities, but no particular modality was considered extremely helpful. Oncology nurses are ideally positioned to monitor women for early signs of swelling and to advise women on the range of treatments available.

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