An international clinical study of ability and disability in ADHD using the WHO-ICF framework

This is the fourth and final study designed to develop International Classification of Functioning, Disability and Health (ICF, and children and youth version, ICF-CY) core sets for attention-deficit hyperactivity disorder (ADHD). To investigate aspects of functioning and environment of individuals with ADHD as documented by the ICF-CY in clinical practice settings. An international cross-sectional multi-centre study was applied, involving nine units from eight countries: Denmark, Germany, India, Italy, Portugal, Saudi Arabia, Sweden and Taiwan. Clinicians and clinical researchers rated the functioning level of 112 children, adolescents and adults with ADHD using the extended ICF-CY checklist version 2.1a. The ratings were based on a variety of information sources, such as medical records, medical history, clinical observations, clinical questionnaires, psychometric tests and structured interviews with participants and family members. In total, 113 ICF-CY categories were identified, of which 50 were related to the activities and participation, 33 to environmental factors and 30 to body functions. The clinical study also yielded strengths related to ADHD, which included temperament and personality functions and recreation and leisure. The study findings endorse the complex nature of ADHD, as evidenced by the many functional and contextual domains impacted in ADHD. ICF-CY based tools can serve as foundation for capturing various functional profiles and environmental facilitators and barriers. The international nature of the ICF-CY makes it possible to develop user-friendly tools that can be applied globally and in multiple settings, ranging from clinical services and policy-making to education and research

UPPER LIMB LYMPHEDEMA 27 (ULL27): DUTCH TRANSLATION AND VALIDATION OF AN ILLNESS-SPECIFIC HEALTH-RELATED QUALITY OF LIFE QUESTIONNAIRE FOR PATIENTS WITH UPPER LIMB LYMPHEDEMA

The health-related quality of lifequestionnaire for lymphedema of the upperlimb (ULL27) was translated into Dutchaccording to international guidelines andvalidated. Eighty-four patients with lymphedemathat occurred after axillary surgery forbreast cancer and subsequent radiotherapy,chemotherapy, or hormonal therapy, completedthe translated version of the ULL27 and theRAND36. Severity of upper limb edema wasmeasured by specialized physiotherapists. Theinternal consistency of the domains of thequestionnaire was good as were the convergentvalidity and discriminant ability. Upper limbvolume and the domains of the ULL27 werenot correlated. The Dutch translation of theULL27 questionnaire has good internalconsistency and validity but further researchis needed to determine its responsiveness

DEVELOPMENT OF CONSENSUS INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH (ICF) CORE SETS FOR LYMPHEDEMA

To understand the challenges of patientswith lymphedema it is important to describefunctioning and to measure the effectivenessof treatment in changing functioning. TheInternational Classification of Functioning,Disability and Health (ICF) offers an internationalframework to classify functioning ofpersons in their personal environment. ICFCore Sets are lists of selected ICF categoriesconcerning those important aspects offunctioning that are most likely to be affectedby a specific health problem or disease. TheseCore Sets make it easier and faster to describeand communicate the patient’s problems andto define treatment goals. Furthermore, theyare available to health care providers of allprofessions, researchers, health insurancecompanies and policy-makers. The objectiveof this document is to present the outcomesof a consensus conference held to determinethe first versions of the ICF Core Sets forlymphedema. Frequency rankings were madeof the ICF categories derived from fourpreparatory studies, being: a) a systematic review; b) a qualitative study; c) an expertsurvey; and d) a cross-sectional study. Bymeans of working group discussions andplenary sessions, a final consensus on ICFcategories was achieved and Comprehensiveand Brief Core Sets for lymphedema for theupper limb, lower limb, and midline lymphedemawere defined. These ICF Core Setscontain different items in each region. Futurevalidation of these Core Sets for healthprofessions and for countries is needed