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Background: Chronic lymphoedema (CLE) is a burdensome disease of multiple causes leading to significant reductions in health-related quality of life (HRQoL). A specific method to assess HRQoL is the Freiburg Life Quality Assessment for lymphoedema (FLQA-L), which consists of 92 items., Objectives: To develop and validate a short form of the FLQA-L with improved psychometric properties and feasibility., Methods: The FLQA-L validation data were reanalysed by patients and experts. The application of factor analysis enabled the exclusion of lower-load items. An optimized short version of the questionnaire (FLQA-LS) with 33 items was generated and tested in a validation study on patients with different forms of CLE., Results: In total, 348 patients with CLE of the upper or lower extremities were included (mean age 57.3 years, range 24-89; 90.8% female), and data from 301 patients could be analysed. Overall, 42.8% of the patients had secondary lymphoedema, 23.6% had primary lymphoedema, 9.5% had lipoedema and 24.1% had lipolymphoedema. The lower extremities were mostly affected (64.4% of the patients presented with leg involvement and 17.5% with both arm and leg impairment). The FLQA-LS showed good internal consistency, with high Cronbach's alpha in the subscales and in the global scale ranging between 0.79 and 0.94. Regarding convergent validity, a good correlation was found with the general HRQoL questionnaire EQ-5D (r = 0.72, P < 0.001)., Conclusions: FLQA-LS is an improved version of the FLQA-L questionnaire for chronic lymphoedema. It demonstrated validity and feasibility and can be easily used in clinical practice and research studies., (© 2018 British Association of Dermatologists.)

Background: Chronic lymphoedema is characterized by a continuous need for medical treatment, many comorbidities and impaired quality of life. In Germany, about 4.5 million patients are affected by lymphoedema. Thus, lymphoedema causes high direct and indirect costs, even more in case of complications such as erysipelas and ulcers., Objective: The aim of this study was to determine the costs of illness of community lymphoedema patients living in the metropolitan area of Hamburg, Germany., Methods: An observational cross-sectional study in patients with lymphoedema and combined lipolymphoedema of any origin was performed analysing direct and indirect costs for the patients, the statutory health insurance and society., Results: In total, 348 patients (90.8% female) were examined and interviewed. The mean age of the patients was 57.3 ± 14.5 years. On average, the total costs per patient and year were € 5784, of which € 4445 (76.9%) were direct costs and € 1338 indirect costs. Within the direct medical costs, € 3796 were accounted for the statutory health insurances and € 649 for the patient. The main cost drivers were costs for manual decongestive therapy and disability costs., Conclusion: Chronic lymphoedema is associated with high direct and indirect costs. This community-based study is the first cost analysis of chronic lymphoedema and combined lipolymphoedema giving insights to economic impact of lymphoedema treatment. There is a high need for structured disease management programs in order to diagnose and treat lymphoedema early and to avoid complications, thus limiting socio-economic burden., (© 2017 European Academy of Dermatology and Venereology.)

Lymphedema is a complex and burdensome medical problem and requires continuous specific therapy. The aim of this cross-sectional study of community lymphedema care in the metropolitan area of Hamburg, Germany, was to evaluate health-related quality of life (QoL) in lymphedema patients. Generic as well as disease-specific health-related QoL was assessed using EQ-5D and FLQA-LK, respectively. Pain was assessed using a visual analogue scale (VAS). About 301 patients (median age of 60.5 years, 90.8% female) with lymphedema of any origin were included. About 66.4% had lymphedema, 24.1% combined lipolymphedema, and 9.5% lipoedema. Mean disease-specific QoL (FLQA-LK) was 2.4 (range 0 = no to 4 = maximum burden). The highest impairment values were observed in subscales for physical complaints, everyday life, and emotional well-being. Mean EQ-5D VAS was 70.4, mean EQ-5D score 63.3. Lymphedema was associated with major impairments in QoL, which differed for subgroups of pain, clinical severity, and comorbidity. Pain as a common problem for lymphedema patients seemed to be underestimated and undertreated. Early diagnosis and structured treatment strategies are urgently needed., (© 2017 by the Wound Healing Society.)

Objectives: Patient-relevant treatment benefit is traditionally measured with health-related quality of life (HRQoL) instruments. The Patient Benefit Index (PBI) methodology allows for a more direct measurement, with the patients rating both importance and achievement of treatment goals. Here, we developed and validated a PBI version specific for the assessment of benefit in lymphedema and lipedema treatment (PBI-L)., Methods: The development included five steps: (1) open item collection; (2) consensus of items in a multidisciplinary expert panel; (3) application of the German PBI-L in a cross-sectional study (n = 301); (4) translation into English; (5) application of the English PBI-L in a randomized clinical trial (n = 82). Subscales were developed using factor analysis. Construct validity was analyzed by correlating PBI-L and convergent criteria such as HRQoL and quality of care. To test for responsiveness, the association to change in HRQoL measures was computed., Results: Floor and ceiling effects were low. There were few missing values. Two well-interpretable subscales were found with Cronbach's alpha >0.8 each. Global and subscale scores correlated with convergent criteria and with change in disease-specific HRQoL, but not with change in generic HRQoL., Conclusions: The PBI-L is an internally consistent, valid, and responsive instrument for the assessment of patient-relevant benefit of edema treatment., (Copyright © 2013 European Society for Vascular Surgery. Published by Elsevier Ltd. All rights reserved.)

Background: Clinical experience indicates that edema often remain undiagnosed. The aim of this study was to examine how much time passes between important events in the 'patient journey' and what predicts delayed consultation and diagnosis., Patients and Methods: 65 patients with secondary arm lymphedema and 161 patients with primary or secondary leg lymphedema were interviewed. The following latency times were computed: the time between (1) first symptoms and first visit to physician; (2) visit of physician and diagnosis; (3) diagnosis and lymph drainage therapy; (4) diagnosis and compression therapy. Associations of latency times with patient and clinical characteristics were analysed using t tests and multivariate linear regression., Results: All arm edema patients had consulted a physician in the year after first symptoms at the latest, and everyone except two received the diagnosis in the following year at the latest. For secondary leg edema, the average latency until physician consultation was also short with 0.5 ± 1.8 years, and latency until diagnosis was 1.7 ± 3.8 years. In contrast, latencies in primary leg edema were significantly longer: The average time between first symptoms and physician consultation was 5.2 ± 11.0 years, and edema diagnosis was made after further 6.7 ± 11.4 years. On average, it took 13.5 years from first symptoms to lymph drainage therapy in these patients and 13.7 years until compression therapy. Predictors of late consultation and late diagnosis in primary leg edema were age < 40, positive family anamnesis, and female gender., Conclusions: Primary leg lymphedema is diagnosed late in many cases, especially in younger women.

Background: Treatment of lymphoedema is complex and needs specific skills. There are no standards for the evaluation of quality of care., Objective: Development and application of indicators for the measurement of quality of care in lymphoedema., Methods: In a three-step process including a national Delphi expert consensus, quality indicators were derived from national and international guidelines. In a cross-sectional study involving a large spectrum of care providers, the quality of lymphoedema care in the community was assessed by transforming the indicators to one unweighted quality index (QI)., Results: A total of 12 quality indicators were identified and applied to n = 348 patients with lymphoedema and lipolymphoedema of any origin in the metropolitan area of Hamburg (90.8% female, mean age 57, SD 14.5 years). On average, 55% of the quality indicators were met, and 64.8% of the patients were satisfied with lymphoedema care. There was a significant correlation between QI and satisfaction., Conclusions: The quality indicators and the QI are feasible and valid for the evaluation of quality of care. They can support optimizing lymphoedema care., (© 2012 The Authors. Journal of the European Academy of Dermatology and Venereology © 2012 European Academy of Dermatology and Venereology.)

Background: The management of lymphoedema is complex and should be based on guidelines. To date, no data assessing quality of care in lymphoedema in Germany are available., Objective: We aimed at evaluating the quality of care of lymphoedema in the metropolitan area of Hamburg using guideline-based indicators., Methods: Cross-sectional, community-based study including patients with lymphoedema. Assessment included a structured interview, clinical examination and patient-reported outcomes. Quality indicators derived from guidelines by a Delphi consensus were applied., Results: 348 patients (median age 60.5 years) with lymphoedema (66.4%), lipoedema (9.5%) or combined oedema (24.1%) were included. 86.4% performed compression therapy, 85.6% received lymphatic drainage. On average 55.0% of the quality of care criteria were met; 64.8% were satisfied with care. The distribution curve of the health care index was almost normal. Treatment by specialists led to a higher quality of care index., Conclusion: Although overall quality of care in lymphoedema is fair, many patients are not treated properly according to guidelines., (Copyright © 2013 S. Karger AG, Basel.)

Summary: The lymphatic system is a network of small vessels draining clear fluid (lymph) from all bodily tissues. Many different disorders, including birth defect, infection and malignancy (cancer), can cause blockage of the system, resulting in chronic swelling, usually affecting arms or legs. This "lymphoedema" causes considerable discomfort and affects many aspects of the patient's life. Health‐related quality of life (QOL) is an important measure in health care, but to date the only QOL measure for patients with lymphoedema has been the Freiburg Life Quality Assessment for lymphoedema (FLQA‐L) ‐ a reliable measure but just too detailed for regular use in clinical practice, having 92 questions. This study from Germany aimed to create a more user‐friendly version. First, they re‐analysed the original FLQA‐L data and identified 33 questions which appeared most informative, covering 5 domains: physical impairments, daily life, social life, mental health and therapy. This shorter version (FLQA‐LS) was then mailed out to 348 lymphoedema patients at 33 clinics; 91% were women and the average age was 57 years. 295 patients completed the questionnaire. The items scoring highest (meaning having the highest impact) were "anxiety about a possible worsening of the disease", "feeling pain in the arm or leg", "joint pain" and "time‐consuming treatments", while impairment of social life showed the lowest values. Statistical analysis of the results showed good correlations with other general health related QOL scores. The FLQA‐LS appears to be a valuable assessment tool for patients with lymphoedema and now needs to be tested in patients over time. Linked Article: Augustin et al. Br J Dermatol 2018; 179:1329–1333 [ABSTRACT FROM AUTHOR]