Peter B. Viehoff

Background: Lymphedema is a common complication of cancer treatment, resulting in swelling and subjective symptoms. Reliable and valid measurement of this side effect of medical treatment is important.Purpose: The purpose of this study was to provide best evidence regarding which measurement instruments are most appropriate in measuring lymphedema in its different stages.Data Sources: The PubMed and Web of Science databases were used, and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed.Study Selection: Clinical studies on measurement instruments assessing lymphedema were reviewed using the Quality Assessment of Diagnostic Accuracy Studies-2 (QUADAS-2) scoring instrument for quality assessment.Data Extraction: Data on reliability, concurrent validity, convergent validity, sensitivity, specificity, applicability, and costs were extracted.Data Synthesis: Pooled data showed good intrarater intraclass correlation coefficients (ICCs) (.89) for bioimpedance spectroscopy (BIS) in the lower extremities and high intrarater and interrater ICCs for water volumetry, tape measurement, and perometry (.98–.99) in the upper extremities. In the upper extremities, the standard error of measurement was 3.6% (σ=0.7%) for water volumetry, 5.6% (σ=2.1%) for perometry, and 6.6% (σ=2.6%) for tape measurement. Sensitivity of tape measurement in the upper extremities, using different cutoff points, varied from 0.73 to 0.90, and specificity values varied from 0.72 to 0.78.Limitations: No uniform definition of lymphedema was available, and a gold standard as a reference test was lacking. Items concerning risk of bias were study design, patient selection, description of lymphedema, blinding of test outcomes, and number of included participants.Conclusions: Measurement instruments with evidence for good reliability and validity were BIS, water volumetry, tape measurement, and perometry, where BIS can detect alterations in extracellular fluid in stage 1 lymphedema and the other measurement instruments can detect alterations in volume starting from stage 2. In research, water volumetry is indicated as a reference test for measuring lymphedema in the upper extremities.

Purpose: To capture the views of different health care providers involved in the treatment of patients with lymphoedema from various countries around the world on the functioning of lymphoedema patients and the factors influencing functioning of these patients using the international classification of functioning, disability and health (ICF). Method: A worldwide e-mail survey with questions based on components of the ICF. Results: In total, 142 health professionals from seven different health professions and 20 different countries answered the questions. The aspects of functioning that were named by the health professionals could be linked to 359 different ICF categories. Of these categories, 109 belonged to body functions (30.4%), 55 to body structures (15.3%), 121 to activities and participation (33.7%) and 74 to environmental factors (20.6%). Overall, the most mentioned items were health services, systems and policies, immunological system functions, looking after one’s health, products and technology for personal use in daily life and dressing. Conclusions: The ICF provided a valuable reference for identifying concepts in statements from international health care professionals experienced in the treatment of lymphoedema patients. The results of this research will be used in the development of ICF core sets for lymphoedema.

To understand the challenges of patients with lymphedema it is important to describe functioning and to measure the effectiveness of treatment in changing functioning. The International Classification of Functioning, Disability and Health (ICF) offers an international framework to classify functioning of persons in their personal environment. ICF Core Sets are lists of selected ICF categories concerning those important aspects of functioning that are most likely to be affected by a specific health problem or disease. These Core Sets make it easier and faster to describe and communicate the patient's problems and to define treatment goals. Furthermore, they are available to health care providers of all professions, researchers, health insurance companies and policy-makers. The objective of this document is to present the outcomes of a consensus conference held to determine the first versions of the ICF Core Sets for lymphedema. Frequency rankings were made of the ICF categories derived from four preparatory studies, being: a) a systematic review; b) a qualitative study; c) an expert survey; and d) a cross-sectional study. By means of working group discussions and plenary sessions, a final consensus on ICF categories was achieved and Comprehensive and Brief Core Sets for lymphedema for the upper limb, lower limb, and midline lymphedema were defined. These ICF Core Sets contain different items in each region. Future validation of these Core Sets for health professions and for countries is needed.

Background. To describe functioning and health of lymphedema patients and to identify their most common problems using the International Classification of Functioning, Disability and Health (ICF) as part of the preparatory studies for the development of ICF Core Sets for lymphedema. Methods. Cross-sectional study in a population of lymphedema patients (n = 200), undergoing treatment in a Dutch lymphedema-specialized hospital. The second-level categories of the ICF were used to collect information on patients’ problems in daily functioning. Results. The mean age of the study group was 56 years (22–84). In total 78.5% of the patients were female. The most frequent mentioned items were: In the Body Functions component: muscle power and mobility of joints, in the Activities and Participation component: doing housework, and changing and maintaining a body position, in the Environmental Factors: Health professionals, who can act as both facilitators and barriers. Interestingly, patients assessed their health more positively than health professionals do. Conclusion. By using the ICF, a considerable part of the broad spectrum of problems in functioning of lymphedema patients was reported.

Purpose. To identify and quantify meaningful concepts in lymphedema from the patients’ perspectives using the International Classification of Functioning, Disability and Health (ICF). Methods. Six focus group interviews in five different centers were organized, audiotaped, transcribed verbatim and analyzed. Results. A total of 2681 relevant ICF linkings were performed with the focus group data, resulting in 130 different second-level categories. Of these 130 second-level categories, 41 (31.5%) categories were categorized as Body Functions, 20 (15.5%) as Body Structures, 41 (31.5%) as Activities and Participation, and 28 (21.5%) as Environmental Factors. Overall, the most important issues according to the patients were the use of hosiery and bandages, support and relationships, and the shape of structures related to movement. Conclusion. Based on their experiences with lymphedema, patients reported activity limitations and participation restrictions combined with impaired body functioning. Anatomical changes (Body Structures) were also often mentioned as a problem in daily life. Environmental factors may act as a barrier or facilitator for patient functioning. The ICF provides a valuable reference to identify concepts in statements from lymphedema patients. The results of this research will be used in the development of ICF Core Sets for lymphedema.

To identify and quantify the meaningful concepts within questionnaires focusing on lymphedema using the International Classification of Functioning, Disability and Health (ICF). Electronic searches of Medline, EMBASE, CINAHL, CENtral and Pedro (2005-2010) were conducted. The concepts in the questionnaires were retrieved from the included studies and linked to the ICF. Of the 2381 abstracts retrieved, 136 studies were included. The study population suffered from lymphedema in the upper limb (65%), in the lower limb (25%), in the midline (3%) and in combinations of these areas (7%). In total, 12 lymphedema-specific questionnaires were found (nine for the upper limb, two for the lower limb and one for lymphedema in general). A total of 301 concepts were extracted from the questionnaires, of which 271 (90%) could be linked to the ICF. There were 45 two-level ICF categories linked to concepts in ≥2 questionnaires; 13 in Body Functions, 6 in Body Structures, 16 in Activities and Participation and 10 in Environmental Factors. The most frequently measured categories were "Structure of upper extremity", "Immunological system functions", "Looking after one's health", "Sensation of pain", "Touch functions", "Dressing" and "Health services, systems and policies". The ICF provides a valuable reference to identify concepts in questionnaires focusing on individuals with lymphedema. Implications for Rehabilitation Lymphedema is a chronic condition and the problems in physical functioning related to lymphedema can result in distress and loss of quality of life. ICF Core Sets for lymphedema consist of a lymphedema-specific selection of ICF categories, which makes it easier to implement the use of the ICF in medical and allied health care. ICF Core Sets for lymphedema can act as a framework for more unity in questionnaires concerning consequences of lymphedema. Part of the development process of ICF Core Sets for lymphedema is the linking of items from lymphedema-specific clinical questionnaires to ICF codes. The ICF codes most frequently used to link the items in the reviewed questionnaires were "Structure of upper extremity", "Immunological system functions", "Looking after one's health", "Sensation of pain", "Touch functions", "Dressing" and "Health services, systems and policies".

The health-related quality of life questionnaire for lymphedema of the upper limb (ULL27) was translated into Dutch according to international guidelines and validated. Eighty-four patients with lymphedema that occurred after axillary surgery for breast cancer and subsequent radiotherapy, chemotherapy, or hormonal therapy, completed the translated version of the ULL27 and the RAND36. Severity of upper limb edema was measured by specialized physiotherapists. The internal consistency of the domains of the questionnaire was good as were the convergent validity and discriminant ability. Upper limb volume and the domains of the ULL27 were not correlated. The Dutch translation of the ULL27 questionnaire has good internal consistency and validity but further research is needed to determine its responsiveness.