Assessing the Impact of Atopic Dermatitis on the Patients' Parents with the Visual Instrument \u2018Caregiver-PRISM'

BACKGROUND: There is a need to improve the quality of communication between clinicians and parents of young patients with atopic eczema (AE). OBJECTIVE: To create a tool to measure the suffering that caregivers experience in association with their child's AE (Caregiver Pictorial Representation of Illness and Self-Measure, Caregiver-PRISM), assess the validity and reliability, and identify factors associated with caregiver suffering. METHODS: Caregiver-PRISM was administered to 45 parents of patients from an AE outpatient service (Padua, Italy). RESULTS: Caregiver-PRISM had a good test-retest reliability (r = 0.85; t7 = 4.13; p < 0.05), content validity and construct validity when used in parents of AE children. Parents with a less positive family affective climate, higher education, or with children following a diet experienced higher suffering associated with their child's AE, demonstrated by lower Caregiver-PRISM scores (p < 0.05). CONCLUSION: Our results support the use of Caregiver-PRISM in parents of AE patients to assess suffering associated with patients' illness. \ua9 2016 S. Karger AG, Basel

Test design – Graz, cable car and Dachstein.

<p>Test design – Graz, cable car and Dachstein.</p

Absolute values of pulse oximetry (Graz vs. Dachstein).

<p>Absolute values of pulse oximetry (Graz vs. Dachstein).</p

Differences of biometrical data (HR, sBP, dBP and BRS) measured during the first period of rest R1.

<p>Differences of biometrical data (HR, sBP, dBP and BRS) measured during the first period of rest R1.</p

Analysis of differences between study locations, kind of stress and the interaction of study location*kind of stress (two factor repeated measurement ANOVA).

<p>Analysis of differences between study locations, kind of stress and the interaction of study location*kind of stress (two factor repeated measurement ANOVA).</p

Biometric data of the participants.

<p>Biometric data of the participants.</p

Aggressive multiple sclerosis (1): Towards a definition of the phenotype.

While the major phenotypes of multiple sclerosis (MS) and relapsing-remitting, primary and secondary progressive MS have been well characterized, a subgroup of patients with an active, aggressive disease course and rapid disability accumulation remains difficult to define and there is no consensus about their management and treatment. The current lack of an accepted definition and treatment guidelines for aggressive MS triggered a 2018 focused workshop of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) on aggressive MS. The aim of the workshop was to discuss approaches on how to describe and define the disease phenotype and its treatments. Unfortunately, it was not possible to come to consensus on a definition because of unavailable data correlating severe disease with imaging and molecular biomarkers. However, the workshop highlighted the need for future research needed to define this disease subtype while also focusing on its treatment and management. Here, we review previous attempts to define aggressive MS and present characteristics that might, with additional research, eventually help characterize it. A companion paper summarizes data regarding treatment and management

Aggressive multiple sclerosis (2): Treatment

International audienceThe natural history of multiple sclerosis (MS) is highly heterogeneous. A subgroup of patients has what might be termed aggressive MS. These patients may have frequent, severe relapses with incomplete recovery and are at risk of developing greater and permanent disability at the earlier stages of the disease. Their therapeutic window of opportunity may be narrow, and while it is generally considered that they will benefit from starting early with a highly efficacious treatment, a unified definition of aggressive MS does not exist and data on its treatment are largely lacking. Based on discussions at an international focused workshop sponsored by the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), we review our current knowledge about treatment of individuals with aggressive MS. We analyse the available evidence, identify gaps in knowledge and suggest future research needed to fill those gaps. A companion paper details the difficulties in developing a consensus about what defines aggressive MS