Self-reported questionnaires for lymphoedema: a systematic review of measurement properties using COSMIN framework. 2021

Vincent Singh Paramanandam, and Mi-Joung Lee, and Sharon L Kilbreath, and Elizabeth S Dylke
Faculty of Medicine and Health, Sydney School of Health Sciences, The University of Sydney, Sydney, Australia.

BACKGROUND Lymphoedema may develop as a result of numerous genetic and traumatic causes; however, treatment for cancer is the most common cause of its development in more economically developed nations. This systematic review critically appraised, compared and summarised the measurement properties of lymphoedema-specific self-reported questionnaires (SRQs) measuring various patient-reported outcomes including quality of life (QOL), function, morbidity, and symptoms. METHODS Seven databases were searched to identify studies of the measurement properties of SRQs. Two review teams independently evaluated the quality of the individual studies using the risk of bias tool from the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN). Measurement properties of the SRQs presented in the studies were then rated. Study level ratings were summarised for an SRQ if they were reported in multiple studies, and their overall quality of the evidence were then graded. RESULTS Forty articles, reporting on 19 SRQs were identified from 8615 records. The focus of the 19 SRQs included eight on QOL, four on symptoms, two on function, and two on impairment. The other three SRQs were on illness perception, self-efficacy, and patient-relevant treatment benefit, respectively. Eight and three SRQs were upper limb and lower limb-specific, respectively, whereas seven questionnaires were for both upper and lower limb lymphoedema. One SRQ was developed for head and neck lymphoedema. According to the COSMIN framework, none of the SRQs reviewed had sufficient evidence to support all nine measurement properties. In lower limb questionnaires, the LYMQOL-leg has sufficient content, structural, and construct validity as well as internal consistency and reliability. For upper limb lymphoedema questionnaires, the Lymph-ICF-UL had sufficient content and construct validity as well as reliability. CONCLUSIONS LYMQOL-leg SRQ is recommended with confidence for evaluation of QOL of people with lower limb lymphoedema while the Lymph-ICF-UL is recommended for evaluation of the QOL of the breast cancer-related lymphoedema with some confidence. In view of the high level of the indeterminate ratings of the measurement properties of the existing SRQs, further research is desirable.

UI MeSH Term Description Entries
D008209 Lymphedema Edema due to obstruction of lymph vessels or disorders of the lymph nodes. Milroy's Disease,Congenital Familial Lymphedema,Congenital Hereditary Lymphedema,Early Onset Lymphedema,Hereditary Lymphedema,Hereditary Lymphedema 1,Hereditary Lymphedema Type I,Lymphedema, Early-Onset,Lymphedema, Hereditary, Ia,Milroy Disease,Nonne-Milroy Disease,Nonne-Milroy Lymphedema,Nonne-Milroy-Meige Disease,Primary Congenital Lymphedema,Congenital Hereditary Lymphedemas,Congenital Lymphedema, Primary,Congenital Lymphedemas, Primary,Early Onset Lymphedemas,Early-Onset Lymphedema,Early-Onset Lymphedemas,Hereditary Lymphedema 1s,Hereditary Lymphedema, Congenital,Hereditary Lymphedemas,Hereditary Lymphedemas, Congenital,Lymphedema, Congenital Hereditary,Lymphedema, Early Onset,Lymphedema, Hereditary,Lymphedema, Nonne-Milroy,Lymphedema, Primary Congenital,Lymphedemas,Lymphedemas, Congenital Hereditary,Lymphedemas, Early Onset,Lymphedemas, Early-Onset,Lymphedemas, Hereditary,Lymphedemas, Primary Congenital,Milroys Disease,Nonne Milroy Disease,Nonne Milroy Lymphedema,Nonne Milroy Meige Disease,Primary Congenital Lymphedemas
D011788 Quality of Life A generic concept reflecting concern with the modification and enhancement of life attributes, e.g., physical, political, moral, social environment as well as health and disease. HRQOL,Health-Related Quality Of Life,Life Quality,Health Related Quality Of Life
D011795 Surveys and Questionnaires Collections of data obtained from voluntary subjects. The information usually takes the form of answers to questions, or suggestions. Community Survey,Nonrespondent,Questionnaire,Questionnaires,Respondent,Survey,Survey Method,Survey Methods,Surveys,Baseline Survey,Community Surveys,Methodology, Survey,Nonrespondents,Questionnaire Design,Randomized Response Technique,Repeated Rounds of Survey,Respondents,Survey Methodology,Baseline Surveys,Design, Questionnaire,Designs, Questionnaire,Methods, Survey,Questionnaire Designs,Questionnaires and Surveys,Randomized Response Techniques,Response Technique, Randomized,Response Techniques, Randomized,Survey, Baseline,Survey, Community,Surveys, Baseline,Surveys, Community,Techniques, Randomized Response
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D015203 Reproducibility of Results The statistical reproducibility of measurements (often in a clinical context), including the testing of instrumentation or techniques to obtain reproducible results. The concept includes reproducibility of physiological measurements, which may be used to develop rules to assess probability or prognosis, or response to a stimulus; reproducibility of occurrence of a condition; and reproducibility of experimental results. Reliability and Validity,Reliability of Result,Reproducibility Of Result,Reproducibility of Finding,Validity of Result,Validity of Results,Face Validity,Reliability (Epidemiology),Reliability of Results,Reproducibility of Findings,Test-Retest Reliability,Validity (Epidemiology),Finding Reproducibilities,Finding Reproducibility,Of Result, Reproducibility,Of Results, Reproducibility,Reliabilities, Test-Retest,Reliability, Test-Retest,Result Reliabilities,Result Reliability,Result Validities,Result Validity,Result, Reproducibility Of,Results, Reproducibility Of,Test Retest Reliability,Validity and Reliability,Validity, Face
D057566 Self Report Method for obtaining information through verbal responses, written or oral, from subjects. Report, Self,Reports, Self,Self Reports

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