Translation, cross‐cultural adaptation and validation of the Quality of Life Evaluation in Epidermolysis Bullosa instrument in Brazilian Portuguese

Cestari, Tania F.; Prati, Clarissa; Menegon, Dóris Baratz; Oliveira, Zilda Najjar Prado de; Machado, Maria Cecília Rivitti; Dumet, Juliana; Nakano, Juliana; Murrell, Dédée F.

doi:10.1111/ijd.12819

Cited by 27 publications

(35 citation statements)

References 31 publications

(56 reference statements)

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“…The goal of these studies is to develop a personalized treatment, based on the patients' needs. [1][2][3] The aims of our study were to develop a validated and reliable quality of life questionnaire (QOLEB) in Romania, to assess the health-related quality of life (HRQoL) in Romanian EB patients, and to perform an objective evaluation of the clinical features of patients with EB. This study was observational, analytical, prospective, transversal, cohort type.…”

Section: Correlation Between Disease Severity and Quality Of Life In mentioning

confidence: 99%

Correlation between disease severity and quality of life in patients with epidermolysis bullosa

Dănescu

Sălăvăstru

Sendrea

et al. 2019

Acad Dermatol Venereol

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Section: Correlation Between Disease Severity and Quality Of Life In mentioning

confidence: 99%

Correlation between disease severity and quality of life in patients with epidermolysis bullosa

Dănescu

Sălăvăstru

Sendrea

et al. 2019

Acad Dermatol Venereol

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“…In Epidermolysis Bullosa, the QOLEB [ 12 ] is a HR-QoL PROM for individuals, whereas the EB-BoD [ 24 ] is designed to evaluate the burden of disease upon family members. The QOLEB has been utilised in observational [ 33 – 36 ] as well as interventional studies [ 37 – 39 ]. The fabry-specific FPHPQ [ 25 ] BCCNS QoL Questionnaire (aBCCdex) [ 26 , 27 ] and Peutz-Jeagher Syndrome (PJS) Questionnaire [ 28 ] all measure HR-QOL in individuals affected by respective conditions and have not yet been utilised in published interventional studies.…”

Section: Resultsmentioning

confidence: 99%

“…The FBI as well as the EB-BoD was translated and validated from French to English [ 14 , 24 ]. The HAE-PRO was validated for six distinct languages [ 23 ], the QOLEB has been validated in Dutch, Spanish and Portuguese [ 34 – 36 ], with the Fabry Specific Health and Pain Questionnaire validated in 8 languages [ 25 ]. No studies scored an ‘excellent’ rating as all validations included multiple forward translations but only one backward translation.…”

Section: Resultsmentioning

confidence: 99%

Disease-specific health related quality of life patient reported outcome measures in Genodermatoses: a systematic review and critical evaluation

Frew

Davidson

Murrell

2017

Orphanet J Rare Dis

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BackgroundHealth Related Quality of Life (HR-QoL) Patient reported outcome measures (PROMs) have high utility in evaluation of new interventions in genodermatoses, however inconsistent standards of development and validation have hampered widespread acceptance and adoption.ObjectivesTo identify all published HR-QoL PROMs in genodermatoses and critically evaluate their development and measurement properties.MethodsThis systematic review was registered with PROSPERO (CRD42016053301). Ovid Medline, Embase and PsycINFO databases were utilised for literature review using predefined inclusion and exclusion criteria. PROM development was assessed using the COSMIN Checklist and measurement properties were assessed against quality criteria for measurement properties of health standard questionnaires.Results15 HRQoL PROMs in genodermatoses were identified. Major areas of deficiency in development were internal consistency, reliability and structural validity. No PROM satisfied measurement property standards for agreement, responsiveness or floor and ceiling effects. Four PROMs included Minimal Important Change scores for interpretability. Issues regarding the generalisability of the evaluated PROMs in culturally diverse and paediatric populations remain unresolved.ConclusionsThe overall standards of development and measurement properties in PROMs in genodermatoses is fair, despite no single instrument meeting all requirements. None are perfectly validated according to COSMIN criteria but seven of the fifteen PROMs may be appropriate pending further validation. The development of culturally appropriate and child-specific variants of PROMs should be a priority in order to increase the utility of patient based outcome measures in genodermatoses in various patient populations.Electronic supplementary materialThe online version of this article (10.1186/s13023-017-0739-5) contains supplementary material, which is available to authorized users.

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“…For example, some studies applied only exploratory factor analysis, which is a method inferior to CFA, to examine the factor structure of mental health tools in dermatology patients. Other studies have not examined the factorial structure of the tool, but only provided information on different types of external validity . The present study addressed this gap by providing evidence on the factorial structure of a widely used screening tool by employing a state‐of‐the‐art analytical approach.…”

Section: Discussionmentioning

confidence: 98%

Validation and psychometric evaluation of a brief screening questionnaire for psychological distress in patients with psoriasis

Nearchou

D’Alton

Donnelly

et al. 2019

Acad Dermatol Venereol

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Background Patients with psoriasis are at risk of a co‐morbid diagnosis of depression and/or anxiety. It is therefore essential for dermatologists to have valid and effective instruments that can screen and monitor depression and anxiety symptoms in psoriasis patients. Objective The aim of this study was to validate the Mental Health Inventory (MHI‐5) as a brief measure that can be used to evaluate psychological distress related to anxiety and depression in psoriasis patients. Methods The sample included 76 adult dermatological outpatients diagnosed with psoriasis. Participants completed the MHI‐5, the Hospital Anxiety and Depression Scale (HADS) and six subscales of the Self‐Compassion Scale (SCS). Confirmatory factor analysis (CFA) was applied to examine the factor structure of MHI‐5. Convergent validity was examined by applying correlations among all measures. Discriminant validity was examined by applying hierarchical regression models. Reliability was examined by calculating Cronbach's alpha coefficient. Results Confirmatory factor analysis showed that the proposed one‐factor model has a good fit to the data. The MHI‐5 demonstrated satisfactory convergent validity by yielding significant moderate to strong correlations with the HADS and with the positive and negative subscales of the SCS. Discriminant validity was also evident with being at risk of anxiety predicting MHI‐5 scores above and beyond the effect of gender and age. Hierarchical regressions were not performed because a very small number of participants (n = 3) were classified at risk of depression. The MHI‐5 showed high internal consistency (α = 0.84). Conclusion This investigation provided evidence that MHI‐5 is a reliable and valid instrument that can be used to effectively capture psychological distress in psoriasis patients.

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Translation, cross‐cultural adaptation and validation of the Quality of Life Evaluation in Epidermolysis Bullosa instrument in Brazilian Portuguese

Abstract: Epidermolysis bullosa has marked impacts on the lives of EB patients and their families, which are strongly correlated with disease severity. The Brazilian Portuguese version of the QoLEB is validated and can be recommended for use in subsequent studies.

Cited by 27 publications

References 31 publications

Correlation between disease severity and quality of life in patients with epidermolysis bullosa

Correlation between disease severity and quality of life in patients with epidermolysis bullosa

Disease-specific health related quality of life patient reported outcome measures in Genodermatoses: a systematic review and critical evaluation

Validation and psychometric evaluation of a brief screening questionnaire for psychological distress in patients with psoriasis

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