RESUMO
Core outcome sets (COSs) are an agreed standardized collection of outcomes that should be measured and reported in all clinical trials for a specific clinical condition. Tsekhe aim of our position paper by the European Academy of Dermatology and Venereology (EADV) Task Force on Quality of Life and Patient Oriented Outcomes was to identify the challenges and Patient Oriented Outcomes advantages in the development of COSs within dermatological QoL research. Twelve EADV Task Force multidisciplinary team members presented a total of 101 items (51 advantages and 50 disadvantages). All participants considered that COS are beneficial for comparison between different studies, treatments, dermatological diseases, geographical location and ethnicities. In conclusion, the EADV Task Force on Quality of Life and Patient Oriented Outcomes has recognized the primacy of advantages of COS and deliberated that the disadvantages in COS are related to development process and use of COS.
Assuntos
Venereologia , Comitês Consultivos , Humanos , Avaliação de Resultados em Cuidados de Saúde , Qualidade de VidaRESUMO
The aim of this study was to describe the many ways in which quality of life (QoL) measurement may potentially be advantageous in routine clinical dermatology practice. Thirteen members of the EADV Task Force on Quality of Life, eight dermatologists, three health psychologists, one epidemiologist and one pharmacoepidemiologist, independently listed all of the ways they thought this may be advantageous. A total of 108 different ways of using QoL information in clinical practice were suggested (median per participant = 8, range = 4-15), and were classified into 20 descriptive groups. These were sorted into the following five categories: inform clinical decisions, clinician-patient communication, awareness of skin disease burden, informing the consultation and clinical service administration. The wide range of potential benefits identified may not only encourage clinicians to use these measures but also highlights many areas requiring evidence to establish the true value of routine use of QoL measures.
Assuntos
Efeitos Psicossociais da Doença , Dermatologia , Qualidade de Vida , Dermatopatias/complicações , Dermatopatias/psicologia , Tomada de Decisão Clínica , Comunicação , Dermatologia/organização & administração , Humanos , Conforto do Paciente , Relações Médico-Paciente , Prognóstico , Encaminhamento e Consulta , Inquéritos e QuestionáriosRESUMO
Lithuania and Ukraine have different models of national health care. We decided to determine whether difference in health care systems influence quality of life (QoL) of psoriasis patients from Lithuania and Ukraine. Lithuanian and Ukrainian versions of the Dermatology Life Quality Index (DLQI) and Skindex-16 were used. 157 Lithuanian and 136 Ukrainian in-patients with chronic plaque psoriasis were invited to complete questionnaires. The distribution of each separate item according its influence on QoL was the same for Lithuanian and Ukrainian psoriatic patients. Lithuanian patients had higher overall mean score for the DLQI (P<0.05) and Skindex-16 (P<0.001). Significantly higher number of Ukrainian psoriatic patients showed no or small effect on their life (P<0.001) and significantly higher number of Lithuanian psoriatic patients had very large or extremely large effect on their life according to the DLQI (P<0.05). The number of psoriatic patients with a moderate effect on their life according to the DLQI did not differ significantly between patients from both countries. We found almost equal distribution of QoL domains assessed by Lithuanian and Ukrainian psoriatic patients. Differences in QoL assessment by Lithuanian and Ukrainian psoriatic patients may be attributed to peculiarities of health care systems and cross-cultural inequivalence.
Assuntos
Psoríase/psicologia , Qualidade de Vida , Adulto , Comparação Transcultural , Política de Saúde , Humanos , Lituânia/epidemiologia , Pessoa de Meia-Idade , Psoríase/epidemiologia , Inquéritos e Questionários , Ucrânia/epidemiologiaRESUMO
Despite it is well known that atopic dermatitis has severe negative impact on child's and family life there is little information concerning gender influence on health-related quality of life assessment. We did not find any statistically significant gender differences in assessment of the Infant's Dermatitis Quality of Life Index and the Dermatitis Family Impact and its separate items. Our results showed that choice of parent who should fill in the Infant's Dermatitis Quality of Life Index and the Dermatitis Family Impact cannot significantly influence the results of clinical studies, but inside couples spouses could have alternative view, which is not associated with gender.
Assuntos
Atitude Frente a Saúde , Dermatite Atópica/psicologia , Pai/psicologia , Mães/psicologia , Qualidade de Vida , Adulto , Pré-Escolar , Saúde da Família , Feminino , Nível de Saúde , Humanos , Lactente , Masculino , Índice de Gravidade de Doença , Fatores Sexuais , Inquéritos e QuestionáriosRESUMO
Origional versions of the Dermatitis Family Impact, Infant's Dermatitis Quality of Life Index and Children's Dermatology Life Quality Index questionnaires have been translated into Ukrainian independently by two translators and then back- translation was done by other translators. Total number of forward or back-translation was 6. A final back-translation was approved by one of the authors and copyright owner, prof. A.Y. Finlay. The probe technique for pre-testing was used. Retest reliability, discriminant validity and over time sensitivity have been checked. 60 children with atopic dermatitis received Trixera emollient cream for a month that led to decrease of their SCORAD (P<0.01) score and was followed by improvement of both health-related and family quality of life (P<0.01). It was confirmed high sensitivity of the questionnaires to successful therapeutic intervention. Ukrainian versions of the Dermatitis Family Impact, Infant's Dermatitis Quality of Life Index and Children's Dermatology Life Quality Index questionnaires could be used for practical and research reasons as important sources of additional information.