title: Quality of life in patients with primary and secondary lymphedema in the community.
abstract: 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.
authors.affiliation: CVderm - German Center for Health Services Research in Dermatology, Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
authors.forename: Katharina
authors.initials: K
authors.lastname: Herberger
authors.affiliation: CVderm - German Center for Health Services Research in Dermatology, Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
authors.forename: Christine
authors.initials: C
authors.lastname: Blome
authors.affiliation: CVderm - German Center for Health Services Research in Dermatology, Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
authors.forename: Kristina
authors.initials: K
authors.lastname: Heyer
authors.affiliation: CVderm - German Center for Health Services Research in Dermatology, Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
authors.forename: Franziska
authors.initials: F
authors.lastname: Ellis
authors.affiliation: Community Practice for Internal and General Medicine, Hamburg, Germany.
authors.forename: Karl-Christian
authors.initials: KC
authors.lastname: Münter
authors.affiliation: CVderm - German Center for Health Services Research in Dermatology, Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
authors.forename: Matthias
authors.initials: M
authors.lastname: Augustin
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology*; D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015897:Comorbidity; D003430:Cross-Sectional Studies; D005260:Female; D005858:Germany / Q000453:epidemiology; D019538:Health Care Surveys; D006801:Humans; D008209:Lymphedema / Q000453:epidemiology / Q000503:physiopathology / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D010146:Pain / Q000503:physiopathology / Q000523:psychology*; D010147:Pain Measurement; D011788:Quality of Life; D018434:Sickness Impact Profile; D014505:Urban Population