C. Taieb

The Vitiligo Impact Patient Scale (VIPs): Development and Validation of a Vitiligo Burden Assessment Tool

Vitiligo has a major impact on health-related quality of life. Although a few vitiligo-specific quality of life instruments exist, there is no specific vitiligo burden tool. We developed and validated a specific vitiligo burden tool according to skin phototype. In total, 301 patients completed 35 items of the Vitiligo Impact Patient scale, of whom 235 were of skin phototype I to III and 66 of phototype IV to VI. The dimensionality of the items was evaluated using factor analyses, with results suggesting three factors in fair- and dark-skinned patients (Psychological effects on daily life, Relationships and Sexuality, and Economic Constraints, Care & Management of Disease). Unidimensionality was confirmed by higher order factor analysis. Cronbachs α were high-and intradimensional coherences all demonstrated good reliability (α > 0.8). The final instrument consists of 29 items (19 items common to all patients, 3 specific to fair skin, and 7 to dark skin). The test-retest reliability demonstrated very good reproducibility. The intraclass correlation of each dimension was greater than 0.90 for each population. External validity was confirmed by the correlation coefficients and Bland and Altman plots of the Vitiligo Impact Patient scale-Fair Skin and Vitiligo Impact Patient scale-Dark Skin versus the Short-Form-12, PVC Metra, Body Image States Scale, and Daily Life Quality Index assessment tools.

IQoL-32: A new ichthyosis-specific measure of quality of life

BACKGROUNDnInherited ichthyoses are associated with impaired quality of life (QoL).nnnOBJECTIVESnThe aim of this study was to create and validate a QoL questionnaire specifically dedicated to patients with ichthyosis.nnnMETHODSnA prequestionnaire was drawn after selecting items from a verbatim transcript. It was then subjected to a cognitive debriefing. During the validation step, this questionnaire was sent to patients with the Dermatology Life Quality Index, Short Form-12 health-related questionnaire, and severity scores (global severity: mild/moderate/severe/very severe; clinical severity evaluated by 6 visual analog scales). A shortened version of the questionnaire was designed. The validity of the tool was confirmed: for its structure and 1-dimensional nature (Cronbach α), convergent (Spearman correlation) and discriminating (Tukey test) validity; α risk was fixed at 5%.nnnRESULTSnThe initial questionnaire included 60 items. During the validation phase, 59 subjects were tested. The shortened version included 32 items (IQoL-32) and 7 dimensions (Cronbach α: 0.94). The higher the score, the more impacted the QoL. IQoL-32 was positively correlated to Dermatology Life Quality Index (Pxa0< .0001) and negatively to Short Form-12 health-related questionnaire (P < .0001). IQoL-32 was highly correlated to clinical severity: overall analysis (Spearman ranking: 0.72; P < .0001) or analysis per dimension (highest correlations: discomfort, pain, interpersonal relations). IQoL-32 demonstrated a higher correlation with visual analog scale compared with Dermatology Life Quality Index and Short Form-12 health-related questionnaire. It also showed a good discriminating power (P < .0001) according to overall severity levels.nnnLIMITATIONSnOnly patients residing in France were included.nnnCONCLUSIONnIQoL-32 is a specific and validated questionnaire for inherited ichthyosis. It will be very useful for patient care and research.

Importance of therapeutic patient education in ichthyosis: results of a prospective single reference center study

BackgroundIchthyoses are a heterogeneous group of rare genodermatoses. Patients and their families face difficulties related to daily care and management that may be aggravated by social isolation.ObjectivesTo evaluate the impact of therapeutic educational programs in improving the knowledge of ichthyosis patients, and their relatives, about their disease.Patients and methodsWe organized a two sessions-program of “know-how” dedicated to the overall management of ichthyoses. These sessions were conducted based on a tool specifically designed for the study, which addressed our various areas of expertise through a collective game. The participants (patients and their parents and siblings) were divided into groups, and the questions were tailored according to the participants’ age. The program was conceived as a knowledge reinforcement program that took place during a weekend of education and rest, organized away from healthcare structures. Our aim was to facilitate the program in a neutral place to encourage respite care and to ensure the availability of a multidisciplinary healthcare team.ResultsAfter the reinforcement session, children aged from 6 to 12 years and their families acquired the targeted know-how and social skills.ConclusionBenefits of TPE in the management of ichthyoses are the following: (1) the trust between patients their families and the caregivers was strengthened; (2) the context of the program encouraged self-expression, answered questions and provided mutual aid; and (3) the more self-sufficient families could better manage emergencies.

Burden of albinism: development and validation of a burden assessment tool

BackgroundAlbinism comprises a group of autosomal recessive diseases that are characterized by poor vision and a variable hypopigmentation phenotype. A comprehensive literature review showed that no tool can assess the burden experienced by individuals who present with albinism, although such a tool is needed and would be beneficial for clinicians and patients alike.MethodThe questionnaire was devised using standardized methodology for developing and validating questionnaires on the quality of life of subjects according to the following chronological structure: conceptual phase, development phase, and then validation phase. A multidisciplinary working group was assembled, including experts on questionnaire design and development, dermatologists specializing in care for patients with albinism, and representatives of the Genespoir association.ResultsBased on an initial verbatim report, the workgroup compiled a list of items that were transcribed and reformulated into questions. During the validation phase, principal component analysis (PCA) was conducted on the 24 items, which allowed the questionnaire to be reduced to 20 questions [Q]. The standardized regression coefficients were all greater than 0.5 for their corresponding factors. Based on their normalized regression coefficients, each group of questions was linked to one of the following four dimensions, with each dimension consisting of at least three questions: “Live with” (8 Q), “Daily life” (3 Q), “Resignation” (3 Q), and “Fear of the future” (6 Q). All dimensions correlated well with the overall BoA score. Cronbach’s α was 0.92 for the entire BoA scale, confirming excellent internal coherence. Intradimensional coherences all demonstrated excellent reliability (αu2009>u20090.65). The BoA questionnaire was highly correlated with the SF12, RSES and DLQI validated questionnaires. This outcome confirmed the external validity.ConclusionThis questionnaire represents the first specific assessment tool for evaluating the burden of albinism. It is easy to use and relatively quick to complete, which will allow the burden to be evaluated over time with a reproducible questionnaire. To ensure that this questionnaire can be used by as many people as possible, cultural and linguistic validation in US English was conducted with the original French version.

The impact of atopic dermatitis on sexual health

Sexual health is frequently affected by chronic diseases but has been poorly investigated in patients with atopic dermatitis (AD).

Development and validation of a new tool to assess the Burden of Sensitive Skin (BoSS)

Sensitive skin usually manifests itself as unpleasant sensations and sometimes erythema. There are various triggering factors for this condition. Although sensitive skin may alter quality of life, its burden has not yet been explored.

Sensitive skin in France: a study on prevalence, relationship with age and skin type and impact on quality of life

Many epidemiological studies have been performed, but a potential increase in the prevalence of sensitive skin, its relationship with age and skin type and the impact of sensitive skin on quality of life are still debated.

Association between two painful and poorly understood conditions: Irritable bowel and sensitive skin syndromes

Irritable bowel and sensitive skin syndromes are common painful conditions that are poorly understood, with alterations of the peripheral (and possibly central) nervous system that lead to a lowering of perception thresholds as the main pathophysiological mechanism.