Coding of meaningful concepts in lymphedema-specific questionnaires with the ICF

Abstract

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".

Identification of relevant ICF (International Classification of Functioning, Disability and Health) categories in lymphedema patients: A cross-sectional study

“…the immunological system (swelling), pain and touch functions as most measured categories [8]. Furthermore, in another study using focus groups the most frequently mentioned categories were: immunological system functions, emotional functions (emotions such as fear, anger, joy); pain, temperament and personality functions (including psychic stability, confidence and optimism), and sensations related to the skin (including itching and tingling) [9].…”

“…These are also the results of the focus group research [9], whereas in the literature review these items are less prominent [8]. In the lymphedema-specific questionnaires the most occurring item is 'looking after one's health'.…”

“…This emphasizes the importance of patients' social network and the influence of the health professionals. Although no discrimination was made between facilitators and barriers in the literature review as well as the qualitative review with focus groups, the same categories are important with one exception: 'Products and technology for personal use in daily living' was the most mentioned item in these studies [8,9]. This category contains items like bandaging and hosiery; which are important items for lymphedema patients.…”

“…If a patient had a limitation due to comorbidity that was not associated with lymphedema, this did not contribute to the prevalence of the corresponding ICF category and was given the qualifier 'C'. As it was not patientfriendly to question all categories of the ICF only those second-level ICF categories, that came forward from a previous literature study of lymphedemaspecific questionnaires [8] were used for this study (i.e. 102 categories).…”

Development of the Lymphoedema Genito-Urinary Cancer Questionnaire

“…In contrast there are a number of assessment tools for breast cancer related lymphoedema (BCRL) (Viehoff et al 2013). The purpose of the questionnaires varied however with many being for assessing the extent of symptoms in known cases of BCRL or quality of life measures rather than being screening / self-report tools for the condition.…”