Patient-Reported Outcome Measures With Secondary Lower Limb Lymphedemas: A Systematic Review

BACKGROUND: Patient-reported outcome measures are measures of patients' health-related quality of life. They should be added to other lymphedema measurements. With an improved disease-free survival of secondary lower limb lymphedema, attention must focus on such assessments. OBJECTIVE: The objectives of this study were to locate and critically appraise suitable patient-reported outcomes measures for lower limb lymphedemas and search for existing valid translations for native German speakers. METHODS: A systematic literature research was conducted. 20 semantical categories for qualitative analysis were evolved. Six questionnaires available in English and some in validated translations remained for analysis. RESULTS: Lower limb lymphedema patients experience poor quality of life, and one of the most critical denominators is skin quality. To establish skin care and prevent cellulitis, patients must learn about skin problems. Only two tools asked for past infections. This is considered crucial because of knowledge building and prophylactic behavior. Questions on movement restrictions were available in one questionnaire. As these have a close connection to one's ability to perform activities of daily life, they can affect quality of life. Afflicted patients have problems with the choice and availability of clothing. Only three questionnaires asked questions about clothing or shoes. Lymphedema patients are exposed to more psychological stress than healthy subjects, but only three questionnaires covered questions about this burden. There was a lack of reporting on psychometric data (Cronbach's alpha, intraclass correlation), which hinders the external validity. Analyzed questionnaires were available in English but only one in German. CONCLUSIONS: The analyzed questionnaires were in English, and only one was adapted and tested for native German speakers. For clinical practice, Devoogdt's questionnaire is recommended despite some shortcomings. There is a need for validated lymphedema questionnaires in German.