Epidermolysis Bullosa (EB) is a rare genodermatosis characterized by skin fragility, blistering, and chronic pruritus. This study evaluated whether existing patient-reported instruments can capture the real-life burden of itch specific to EB. To date, no single instrument considered gold standard for EB-related itch. Using longitudinal data from completed phase 2 trial with 24 participants (NCT...

Health-related quality of life (HRQL) assessment is an important measure of the impact of the disease, effect of treatment and other variables affecting people's lives. The review focused on the assessment of HRQL in patient with coronary heart disease (CHD) by appropriate tools. Although no consensus exists about the precise definition of HRQL, a plethora of instruments have been developed to ...

BACKGROUND Patient-Reported Outcomes (PROs) are considered important outcomes because they reflect the patient's experience in clinical trials. PROs have been included in the field of haemophilia only recently. PURPOSE Comparing the contents of PROs measures used in haemophilia, based on the ICF/ICF-CY as frame of reference. METHODS Haemophilia-specific PROs for adults and children were sel...

Cochlear implantation has a remarkable impact on the social life, activities and self-esteem of each patient. In order to objectify this comprehensive effect the term quality of life has been introduced. Various questionnaires have been developed to assess the quality of life in such patients. In a review of the literature several generic and disease specific quality of life questionnaires were...

Primary brain tumors and their treatment are associated with a significant impact on function and quality of life (QOL). Patient-reported outcomes (PROs) are measures that allow report of the impact directly from the patient. Instruments to measure both QOL and symptom burden have been developed for use in the primary brain tumor patient population. Use of these instruments coupled with tumor r...

BACKGROUND Anxiety is a risk for reduced quality of life in advanced cancer patients. However, it is an overlooked symptom without routine use of instruments to assess anxiety. AIM To gain insight into the use of instruments by nurses to assess anxiety in advanced cancer patients and the rationale behind it. METHODS Data with regard to nurses' use of instruments were collected from medical ...

A presentation, demonstration, and discussion of recently developed adverse event instruments were the topics for the OMERACT 7 Drug Safety Module. The module began with a plenary introducing the needs and challenges of adverse event ascertainment. It was followed by a review of module work from previous OMERACT meetings on a prototype coding instrument (Rheumatology Common Toxicity Criteria), ...

INTRODUCTION Conventional manual laparoscopic instruments for minimally invasive surgery have limited dexterity within the patient, making procedures challenging. Surgical robotic systems offer enhanced articulation, but at substantial financial costs. This has motivated the development of high-dexterity, low-cost laparoscopic instruments. AREAS COVERED This article reviews both commercial an...