RESUMEN
BACKGROUND: The CARPE registry was set up in 2009 to prospectively investigate the management of patients with chronic hand eczema (CHE). OBJECTIVES: To report comprehensive follow-up data from the CARPE registry. PATIENTS AND METHODS: We investigated sociodemographic and clinical characteristics, provision of medical care, physician-assessed outcomes, and patient-reported outcomes (PROs). Data were collected between 2009 and 2016, with up to 5 years of follow-up, and are reported descriptively. RESULTS: Overall, 1281 patients were included in the registry (53.7% female). Mean age was 47.0 years. Of the patients, 793 and 231 completed the 2-year follow-up and 5-year follow-up, respectively. At baseline, 5.4% had changed or given up their job because of CHE, the average duration of CHE was 6.1 years, and, in 22.4%, the CHE was severe according to physician global assessment. Systemic treatment (alitretinoin, acitretin, and methotrexate) was prescribed at least once to 39.0% of the patients during the course of the follow-up. Disease severity, quality of life and treatment satisfaction improved over time, and the proportion of patients receiving systemic treatments decreased. CONCLUSIONS: Under continued dermatological care, substantial improvements in disease severity and PROs over time was achieved during the course of the CARPE registry, even in patients with long-standing and severe hand eczema.
Asunto(s)
Dermatitis Alérgica por Contacto/fisiopatología , Dermatosis de la Mano/fisiopatología , Sistema de Registros , Acitretina/uso terapéutico , Administración Cutánea , Adolescente , Corticoesteroides/uso terapéutico , Adulto , Anciano , Anciano de 80 o más Años , Alitretinoína/uso terapéutico , Enfermedad Crónica , Dermatitis Alérgica por Contacto/etiología , Dermatitis Alérgica por Contacto/terapia , Fármacos Dermatológicos/uso terapéutico , Eccema/fisiopatología , Femenino , Estudios de Seguimiento , Dermatosis de la Mano/terapia , Humanos , Masculino , Metotrexato/uso terapéutico , Persona de Mediana Edad , Evaluación de Resultado en la Atención de Salud , Terapia PUVA , Medición de Resultados Informados por el Paciente , Terapia Ultravioleta , Urea/uso terapéutico , Adulto JovenRESUMEN
OBJECTIVES: It is not known which of the many asthma-specific quality of life (QoL) questionnaires best capture the lived experience of people with asthma. The objective of this study was to explore patients' views of three commonly used asthma-specific QoL questionnaires. DESIGN: Qualitative study using semistructured interviews. SETTING: Primary and secondary care in Brighton and Hove, UK. PARTICIPANTS: 30 adult people with a physician-diagnosis of asthma who were asked to complete the Juniper Asthma Quality of Life Questionnaire (AQLQ-J), the Sydney Asthma Quality of Life Questionnaire (AQLQ-S) and the Living with Asthma Questionnaire (LWAQ) to elicit their views on the content validity of these. RESULTS: Thematic content analysis revealed a lack of congruence between the concerns of people with asthma and the questionnaire content in terms of missing (eg, allergies) and irrelevant (eg, smoky restaurants) content. The AQLQ-J was perceived as a 'narrow', 'medical' questionnaire focused on symptoms, the environment and functional ability. In contrast, the LWAQ and the AQLQ-S were perceived to be 'non-medical'. The LWAQ was described as a 'test' and as a wide-ranging, embracing and holistic questionnaire. Its strong emotional focus was irritating to some. The AQLQ-S was described as a simple, quick and easy questionnaire, although there was a perception that it was lacking in depth. CONCLUSIONS: Patient interviews highlighted strengths and shortcomings in the content validity of these three asthma-specific questionnaires. For patients, the AQLQ-S content seemed to be the most pertinent in its adequacy of coverage of medical, social and emotional aspects of health-related QoL in asthma.
Asunto(s)
Asma , Calidad de Vida , Encuestas y Cuestionarios , Actividades Cotidianas , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Satisfacción del Paciente , Investigación Cualitativa , Reproducibilidad de los Resultados , Reino Unido , Adulto JovenRESUMEN
INTRODUCTION: Eczema, as defined by the World Allergy Organization (WAO) revised nomenclature in 2003, affects 15% to 20% of school children and 2% to 5% of adults worldwide. About 50% of people with eczema demonstrate atopy, with specific immunoglobulin E responses to allergens. METHODS AND OUTCOMES: We conducted a systematic review and aimed to answer the following clinical questions: What are the effects of topical medical treatments, and dietary interventions in adults and children with established eczema? What are the effects of breastfeeding, reducing allergens, or dietary interventions for primary prevention of eczema in predisposed infants? We searched: Medline, Embase, The Cochrane Library, and other important databases up to May 2009 (Clinical Evidence reviews are updated periodically, please check our website for the most up-to-date version of this review). We included harms alerts from relevant organisations such as the US Food and Drug Administration (FDA) and the UK Medicines and Healthcare products Regulatory Agency (MHRA). RESULTS: We found 54 systematic reviews, RCTs, or observational studies that met our inclusion criteria. We performed a GRADE evaluation of the quality of evidence for interventions. CONCLUSIONS: In this systematic review we present information relating to the effectiveness and safety of the following interventions: breastfeeding, controlling house dust mites, corticosteroids, dietary exclusion of eggs or cow's milk, elementary diets, emollients, essential fatty oils, few-foods diet, multivitamins, pimecrolimus, probiotics, pyridoxine, reducing maternal dietary allergens, tacrolimus, vitamin E, and zinc supplements.