The cross-cultural validation of the Beach Center Family Quality of Life Scale among persons affected by leprosy or podoconiosis in Northwest Ethiopia.

BACKGROUND: The Beach Center Family Quality of Life Scale has been developed and validated in different languages in different countries. However, this scale has not been validated in the Ethiopian Amharic language context. Therefore, this study aimed to investigate the cross-cultural validity of the Beach Center Family Quality of Life Scale, among Ethiopian families of persons affected by leprosy and podoconiosis. METHODOLOGY: We explored the semantic equivalence, internal consistency, reproducibility, floor and ceiling effects, and interpretability of the Beach Center Family Quality of Life Scale in Amharic. A cross-sectional study was conducted after the translation and back-translation of the instrument. A total of 302 adult persons affected by leprosy or podoconiosis was asked about their level of satisfaction with their family life, using the Beach Center Family Quality of Life Scale. In addition, 50 participants were re-interviewed two weeks after the initial assessment to test the reproducibility of the scale. Participants were recruited in the East Gojjam zone of Northwest Ethiopia. RESULTS: The findings of this study showed that the Beach Center Family Quality of Life Scale had high internal consistency (Cronbach's alpha of 0.913) and reproducibility (intra-class correlation coefficient of 0.857). The standard error of measurement was 3.01, which is 2.4% of the total score range. The smallest detectable change was 8.34. Confirmatory factor analysis showed adequate factor loadings and model fit indices like the original scale. The composite reliability and average variance extracted from the scale were acceptable. No floor and ceiling effects were found. CONCLUSIONS: Our findings indicate that the Amharic version of the Beach Center Family Quality of Life Scale has adequate cultural validity to assess the family quality of life in Ethiopian families of persons affected by leprosy and podoconiosis.

Family vitiligo impact scale: A scale to measure the quality-of-life of family members of patients with vitiligo.

BACKGROUND: Vitiligo places a significant psycho-social burden on caregivers and family members. AIMS: The aim of the study was to develop and preliminarily validate a scale to measure the psychosocial impact of vitiligo on adult family members. METHODS: Themes that emerged from qualitative interviews and a focus group discussion with family members were used to generate items for a preliminary scale, followed by pre-testing and scale development. The new scale was then tested with two comparator scales and a global question. RESULTS: A preliminary scale with 32 items was pilot tested on 30 participants. Following this, the scale was condensed to 16 items in 12 domains that were administered to 159 participants. Scale scores ranged from 0 to 48 with a mean of 19.75 ± 12.41. The scale had excellent internal consistency with Cronbach's alpha coefficient of 0.92 (0.70-0.95) and also showed good test-retest reliability at two weeks (r = 0.946). The scale showed criterion, convergent and known group validity. LIMITATIONS: It was conducted in a large teaching hospital which may have resulted in selection of patients with persistent or progressive disease and more worried family members. Vitiligo is highly stigmatized in our country and the performance of the scale may need to be evaluated in other communities and cultures as well where stigma is less oppressive. CONCLUSION: Family Vitiligo Impact Scale appears to be an easy-to-complete, reliable and valid instrument to measure the psychosocial impact of vitiligo in family members of patients. It may be useful as an outcome measure in both clinical and research settings.

Disabilities in leprosy: construction and validation of instrument on knowledge and attitude of professionals.

OBJECTIVE: To develop and test the content validity of the "Knowledge and Attitudes on Assessing Degrees of Physical Disability in Leprosy" instrument. METHODS: Methodological study carried out between January and May 2019 in three stages: item generation, analysis of aggregated redundancy to the composition, and content validation, using the Delphi technique. RESULTS: In the first evaluation, a relevance of ≥ 0.80 stood out for all items, except for 2.8, which was excluded. To make the instrument clearer, the sequence was renumbered from one to 32; 2.6, 3.1, and 15 were reformulated, and the others underwent modifications, except for ten and 13. After the second evaluation, all items obtained Content Validity Index > 0.90 and Kappa = 1.00. CONCLUSION: The instrument has an excellent content validity; it is inferred that it is adequate to measure the knowledge and attitudes of professionals in the assessment of physical disabilities in leprosy.

Psychometric assessment of the EMIC Stigma Scale for Brazilians affected by leprosy.

BACKGROUND: The Stigma Scale of the Explanatory Model Interview Catalogue (EMIC-SS) is a useful option to investigate leprosy-related stigma, but its psychometric qualities are unknown in Brazil. This study investigated the factor structure, the convergent and known-groups validity, and the reliability of the EMIC-SS for Brazilians affected by leprosy. METHODOLOGY: The Brazilian Portuguese version of the EMIC-SS was validated in 180 persons affected by leprosy at a Reference Center in Rio de Janeiro. Confirmatory factorial analysis (CFA) and Cronbach alpha were used to assess the EMIC-SS internal consistency. The Construct validity was tested using Spearman Correlation, Kruskal-Wallis, and Mann-Whitney tests comparing with the Participation Scale, Rosenberg Self-esteem Scale, Beck Depression Inventory, and a Sociodemographic Questionnaire. Test-retest reliability was evaluated with intra-class correlation (ICC). MAIN FINDINGS: CFA confirmed the one- and two-dimensional models of the scale after retaining 12 of the 15 EMIC-SS items. The 12-item EMIC-SS was consistent (α = 0.78) and reproducible (ICC = 0.751, 95% Confidence Interval = 0.657-0.822, p < 0.0001). A significant correlation was observed between the EMIC-SS and the other scales confirming convergent validity. The EMIC-SS and its factors were able to differentiate several hypothesized groups (age, change of occupation, monthly family income, communicating others about the disease, and perception of difficulty to follow treatment) confirming the scale known-groups validity, both in its one and two-dimensional models. CONCLUSIONS/SIGNIFICANCE: Our study found support for the construct validity and reliability of the EMIC-SS as a measure of stigma experienced by people affected by leprosy in Brazil. However, future studies are necessary in other samples and populations with stigmatizing conditions to determine the optimal factor structure and to strengthen the indications of the validated scale.

Validation of a cross-NTD toolkit for assessment of NTD-related morbidity and disability. A cross-cultural qualitative validation of study instruments in Colombia.

BACKGROUND: Many neglected tropical diseases (NTDs) are not fatal, but they are disabling, disfiguring and stigmatizing. More accurate data on these aspects would benefit planning, monitoring and evaluation of interventions, as well as provision of appropriate services for the often life-long consequences. In 2015, a cross-NTD toolkit was developed, consisting of a variety of existing questionnaires to measure morbidity, disability and health-related quality of life. The toolkit covers the domains of the International Classification of Functioning, Disability and Health (ICF) framework. These tools have been developed in a source country, however, it was intended for the cross-NTD toolkit to be applicable across NTDs in many countries with different cultures and languages in order to generate universally comparative data. Therefore; the present study aimed to validate several tools of the toolkit among people affected by leprosy or leishmaniasis in the cultural settings of Cartagena and Cúcuta, Colombia. METHODOLOGY: This study aimed to validate the following tools among 55 participants between 18-85 years old, affected by leprosy and leishmaniasis: (I) Clinical Profile, (II) Self-Reporting Questionnaire (SRQ), (III) WHO Quality of Life assessment-abbreviated version (WHOQOL-BREF), and (IV) WHO Quality of Life assessment-Disability (WHOQOL-DIS). The tools were administered during face-to-face interviews and were followed by open questions about the respondents' thoughts on format of the tool and the understanding, relevance and acceptability of the items. The tools were validated using a qualitative method approach based on the framework for cultural equivalence, measured by the cultural, item, semantic and operational equivalences. RESULTS: The Clinical Profile was seen as acceptable and relevant, only the semantic equivalence was not as satisfying and needs a few adaptations. The SRQ was very well understood and shows to reach the equivalences for the population of Colombia without any additional changes. Several items of the WHOQOL-BREF and the WHOQOL-DIS were not well understood and changes are recommended due to semantic difficulties. Operational equivalence of both questionnaires was not as desired in relation to the used response scales. The participants shared that the tools are relevant and important for their particular situation. CONCLUSIONS/SIGNIFICANCE: The SRQ is found to be a valid tool for Colombia and can be included in the cross-NTD toolkit. The Clinical Profile, WHOQOL-BREF & WHOQOL-DIS need changes and retesting among Colombian people affected by an NTD. The toolkit as a whole is seen as useful to show the effects leprosy and leishmaniasis have on the participants. This cultural validation will contribute to a universally applicable cross-NTD toolkit.

Development and Psychometric Evaluation of the Hansen Research Services Matrix Adaptive Test: A Measure of Nonverbal IQ.

Assessment of individuals on the autism spectrum often includes a measure of nonverbal IQ. One such measure is the Raven's Standard Progressive Matrices (RSPM). For large research studies with participants distributed nationally it is desirable for assessments to be available online. Because time is a premium, it is ideal that the measure produces accurate scores quickly. The Hansen Research Services Matrix Adaptive Test (HRS-MAT) addresses these needs and with similar psychometric properties of the RSPM. Scores based on the HRS-MAT correlated at r = .81 with those of the RSPM. In adult-child pairs, HRS-MAT scores correlated at approximately r = .50. Details from respondents in a national sample and psychometric properties including reliability and validity are discussed.

Family Communication Scale: Validation in Chilean / Escala de Comunicação Familiar: validação em população adulta chilena / Escala de Comunicación Familiar: validación en población adulta chilena

Abstract The earliest socialization in human beings, a process whereby family and society are built, takes place through communication. The aim of this study was to analyze the psychometric properties of the Spanish version of the Family Communication Scale using a random sample of 340 Chilean adults. Exploratory factor analysis (principal axis) and confirmatory factor analysis (free asymptotic distribution) adjusted to data without multivariate normal distribution were applied (Doornik-Hansen test: p<.001). A factorial solution of two constructs was found with x2 test=9.466 (p=.305), CFI=.983, TLI=.968, RMSEA=.023 (p=.781), and SRMR=.104, as well as internal consistencies of .895 and .854 in both constructs. The evidence obtained supports the idea that the scale adequately measures the variable of interest through two constructs and six items. The data confirm the good psychometric indicators that support the use of the scale in the area of research and family intervention.

Resumo A comunicação é o processo pelo qual são produzidas as mais precoces socializações do ser humano, além de se construir a família e a sociedade. O objetivo deste estudo foi analisar as propriedades psicométricas da versão espanhola da Escala de Comunicação Familiar numa amostra aleatória de 340 adultos chilenos. Aplicou-se a análise fatorial exploratória (eixos principais) e confirmatória (livre distribuição assintótica) ajustada a dados sem distribuição normal multivariante (teste de Doornik-Hansen de p < ,001). Encontrou-se uma solução fatorial de dois construtos com teste de x2 = 9,466 (p = ,305), CFI = ,983, TLI = ,968, RMSEA = ,023 (p = ,781) e SRMR = ,104, além de consistencias internas de ,895 e ,854 para cada construto. A evidência obtida nesse tipo de sujeitos apoia a ideia de que a escala mede adequadamente a variável de interesse por meio de dois construtos e seis reativos. Os dados confirmam os bons indicadores psicométricos que apoiam o uso da escala na área da pesquisa e da intervenção familiar.

Resumen Es a través de la comunicación que se producen las más tempranas socializaciones del ser humano, proceso mediante el cual se construye la familia y la sociedad. El objetivo de este estudio fue analizar las propiedades psicométricas de la versión española de la Escala de Comunicación Familiar, en una muestra aleatoria de 340 adultos chilenos. Se aplicó el análisis factorial exploratorio (ejes principales) y confirmatorio (libre distribución asintótica) ajustado a datos sin distribución normal multivariante (test de Doornik-Hansen de p < .001). Se encontró una solución factorial de dos constructos con prueba de χ2 = 9.466 (p = .305), CFI = .983, TLI = .968, RMSEA = .023 (p = .781) y SRMR = .104, además de consistencias internas de .895 y .854 para cada constructo. La evidencia obtenida en este tipo de sujetos apoya la idea de que la escala mide adecuadamente la variable de interés por medio de dos constructos y seis reactivos. Los datos confirman los buenos indicadores psicométricos que apoyan el uso de la escala en el área de la investigación y la intervención familiar.

Evaluation of the Bifactor Nominal Response Model Analysis of a Health Efficacy Measure.

The bifactor nominal response item response theory (IRT) model, proposed by Cai, Yang and Hansen (2011), provides an extension of Bock's (1972, 1997) unidimensional nominal response model to multidimensional IRT. This model has not been utilized in any published studies since its original development. In this study, the model was applied to data from a sample of college students (N = 799) to evaluate the psychometric properties of a health efficacy measure. The nominal response model has the unique capability to estimate the functioning of each single response category, and higher response categories were found to have better functioning in this study. Poor-functioning categories were identified and combined into their adjacent categories. Items with revised response format showed improved functioning. The bifactor nominal response model is a useful tool for evaluation of bifactor scales with ordered while non-equivalently functioning categories.

Measuring medical students' empathy using direct verbal expressions.

PURPOSE: Empathy is an important trait in physicians and a key element in the physician-patient relationship. Accordingly, one of the goals in medical education is developing empathy in students. We attempted to practically assess medical students' empathy through their direct verbal expressions. METHODS: The medical students' empathy was measured using the modified Pencil-and-Paper Empathy Rating Test by Winefield and Chur-Hansen (2001). The students took 15 minutes or so to complete the scale, and it was then scored by one of two trained evaluators (0 to 4 points for each item, for a total score of 40). The subjects were 605 medical students, and the data were analyzed using descriptive analysis, independent t-test, and one-way analysis of variance in SPSS version 21.0. RESULTS: The students' empathy scores were low (mean, 12.13; standard deviation, 2.55); their most common responses (78.6%) registered as non-empathetic. Differences in empathy were observed by gender (female students>male students; t=-5.068, p<0.001), school system (medical school>medical college; t=-1.935, p=0.053), and academic level (pre-medical 1 year < other years; t=-4.050, p<0.001). CONCLUSION: Our findings lead us to the significant conclusion that there is the need for empathy enhancement training programs with practical content.

Evaluation of the Primary Care in leprosy control: proposal of an instrument for users / Evaluación de la atención primaria en el control de la hanseniasis: propuesta de una herramienta destinada a los usuarios / Avaliação da Atenção Primária no controle da hanseníase: proposta de uma ferramenta destinada aos usuários

Objective Developing an instrument to evaluate the performance of primary health care in the leprosy control actions, from the perspective of users and do the face and content validation. Method This is a methodological study carried out in four stages: development of instrument, face and content validation, pre-test, and analysis of test-retest reliability. Results The initial instrument submitted to the judgment of 15 experts was composed of 157 items. The face and content validation and pre-test of instrument were essential for the exclusion of items and adjustment of instrument to evaluate the object under study. In the analysis of test-retest reliability, the instrument proved to be reliable. Conclusion The instrument is considered adequate, but further studies are needed to test the psychometric properties.
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Objetivo Desenvolver um instrumento para avaliação do desempenho da atenção primária à saúde na realização das ações de controle da hanseníase na perspectiva dos usuários e realizar a validação de face e conteúdo. Método Trata-se de um estudo metodológico realizado em quatro etapas: desenvolvimento do instrumento, validação de face e de conteúdo, pré-teste e análise da confiabilidade teste-reteste. Resultados O instrumento inicial, submetido ao julgamento de 15 especialistas, era composto por 157 itens. A validação de face, conteúdo e pré-teste do instrumento foi fundamental para a exclusão de itens e adequação do instrumento para avaliar o objeto em estudo. Na análise de confiabilidade teste-reteste, o instrumento mostrou-se fidedigno. Conclusão O instrumento é considerado adequado, mas são necessários novos estudos para o teste das propriedades psicométricas.



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Objetivo Desarrollar un instrumento para la evaluación del desempeño de la atención primaria a la salud en la puesta en marcha de las acciones de control de la hanseniasis bajo la perspectiva de los usuarios y realizar la validación de cara y contenido. Método Se trata de un estudio metodológico llevado a cabo en cuatro etapas: desarrollo del instrumento, validación de cara y de contenido, pre-prueba y análisis de la confiabilidad de prueba-reprueba. Resultados El instrumento inicial, sometido al juicio de 15 expertos, estaba compuesto de 157 ítems. La validación de cara, contenido y pre-prueba del instrumento fue fundamental para la exclusión de ítems y la adecuación del instrumento para evaluar el objeto de estudio. En el análisis de confiabilidad de prueba-reprueba, el instrumento se mostró fehaciente. Conclusión Se considera el instrumento adecuado, pero son necesarios nuevos estudios para el test de las propiedades psicométricas.
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Psychometric properties of the participation scale among former buruli ulcer patients in Ghana and Benin.

BACKGROUND: Buruli ulcer is a stigmatising disease treated with antibiotics and wound care, and sometimes surgical intervention is necessary. Permanent limitations in daily activities are a common long term consequence. It is unknown to what extent patients perceive problems in participation in social activities. The psychometric properties of the Participation Scale used in other disabling diseases, such as leprosy, was assessed for use in former Buruli ulcer patients. METHODS: Former Buruli ulcer patients in Ghana and Benin, their relatives, and healthy community controls were interviewed using the Participation Scale, Buruli Ulcer Functional Limitation Score, and the Explanatory Model Interview Catalogue to measure stigma. The Participation Scale was tested for the following psychometric properties: discrimination, floor and ceiling effects, internal consistency, inter-item correlation, item-total correlation and construct validity. RESULTS: In total 386 participants (143 former Buruli ulcer patients with their relatives (137) and 106 community controls) were included in the study. The Participation Scale displayed good discrimination between former Buruli ulcer patients and healthy community controls. No floor and ceiling effects were found. Internal consistency (Cronbach's alpha) was 0.88. In Ghana, mean inter-item correlation of 0.29 and item-total correlations ranging from 0.10 to 0.69 were found while in Benin, a mean inter-item correlation of 0.28 was reported with item-total correlations ranging from -0.08 to 0.79. With respect to construct validity, 4 out of 6 hypotheses were not rejected, though correlations between various constructs differed between countries. CONCLUSION: The results indicate the Participation Scale has acceptable psychometric properties and can be used for Buruli ulcer patients in Ghana and Benin. Future studies can use this Participation Scale to evaluate the long term restrictions in participation in daily social activities of former BU patients.

The cultural validation of two scales to assess social stigma in leprosy.

BACKGROUND: Stigma plays in an important role in the lives of persons affected by neglected tropical diseases, and assessment of stigma is important to document this. The aim of this study is to test the cross-cultural validity of the Community Stigma Scale (EMIC-CSS) and the Social Distance Scale (SDS) in the field of leprosy in Cirebon District, Indonesia. METHODOLOGY/PRINCIPLE FINDINGS: Cultural equivalence was tested by assessing the conceptual, item, semantic, operational and measurement equivalence of these instruments. A qualitative exploratory study was conducted to increase our understanding of the concept of stigma in Cirebon District. A process of translation, discussions, trainings and a pilot study followed. A sample of 259 community members was selected through convenience sampling and 67 repeated measures were obtained to assess the psychometric measurement properties. The aspects and items in the SDS and EMIC-CSS seem equally relevant and important in the target culture. The response scales were adapted to ensure that meaning is transferred accurately and no changes to the scale format (e.g. lay out, statements or questions) of both scales were made. A positive correlation was found between the EMIC-CSS and the SDS total scores (r=0.41). Cronbach's alphas of 0.83 and 0.87 were found for the EMIC-CSS and SDS. The exploratory factor analysis indicated for both scales an adequate fit as unidimensional scale. A standard error of measurement of 2.38 was found in the EMIC-CSS and of 1.78 in the SDS. The test-retest reliability coefficient was respectively, 0.84 and 0.75. No floor or ceiling effects were found. CONCLUSIONS/SIGNIFICANCE: According to current international standards, our findings indicate that the EMIC-CSS and the SDS have adequate cultural validity to assess social stigma in leprosy in the Bahasa Indonesia-speaking population of Cirebon District. We believe the scales can be further improved, for instance, by adding, changing and rephrasing certain items. Finally, we provide suggestions for use with other neglected tropical diseases.

[Evaluation of the primary care in leprosy control: proposal of an instrument for users]. / Avaliação da atenção primária no controle da hanseníase: proposta de uma ferramenta desttinada aos usuários.

OBJECTIVE: Developing an instrument to evaluate the performance of primary health care in the leprosy control actions, from the perspective of users and do the face and content validation. METHOD: This is a methodological study carried out in four stages: development of instrument, face and content validation, pre-test, and analysis of test-retest reliability. RESULTS: The initial instrument submitted to the judgment of 15 experts was composed of 157 items. The face and content validation and pre-test of instrument were essential for the exclusion of items and adjustment of instrument to evaluate the object under study. In the analysis of test-retest reliability, the instrument proved to be reliable. CONCLUSION: The instrument is considered adequate, but further studies are needed to test the psychometric properties.


Assessing clinical significance of treatment outcomes using the DASS-21.

Standard clinical significance classifications are based on movement between the "dysfunctional" and "functional" distributions; however, this dichotomy ignores heterogeneity within the "dysfunctional" population. Based on the methodology described by Tingey, Lambert, Burlingame, and Hansen (1996), the present study sought to present a 3-distribution clinical significance model for the 21-item version of the Depression Anxiety Stress Scales (DASS-21; P. F. Lovibond & Lovibond, 1995) using data from a normative sample (n = 2,914), an outpatient sample (n = 1,000), and an inpatient sample (n = 3,964). DASS-21 scores were collected at pre- and post-treatment for both clinical samples, and patients were classified into 1 of 5 categories based on whether they had made a reliable change and whether they had moved into a different functional range. Evidence supported the validity of the 3-distribution model for the DASS-21, since inpatients who were classified as making a clinically significant change showed lower symptom severity, higher perceived quality of life, and higher clinician-rated functioning than those who did not make a clinically significant change. Importantly, results suggest that the new category of recovering is an intermediate point between recovered and making no clinically significant change. Inpatients and outpatients have different treatment goals and therefore use of the concept of clinical significance needs to acknowledge differences in what constitutes a meaningful change.

Rasch analysis of the Outcome Questionnaire with African Americans.

Effectively diagnosing African Americans' mental health with a single intake checklist has posed an unresolved challenge, as most intake checklists were developed from White perspectives. In this study, Rasch analysis was used to assess the psychometric characteristics of a common measure of clinical distress, the Outcome Questionnaire (OQ; Lambert, Lunnen, Umphress, Hansen, & Burlingame, 1994), for a sample of African American students split into a calibration and validation subsample. OQ subscales were first identified and were then held up under cross-validation with a second subsample. Rasch analysis of the OQ clearly indicated the measure was multidimensional among African American students with 2 subscales titled Well-Being and Psychological Distress. Our results also indicated appropriate response scale use, adequate person separation, strong stability across subsamples, and little differential item functioning. Moreover, our analysis showed items of the 2 subscales to be well-targeted for African American students. However, if subscales were to be revised for African American students, some items at the same logit position might be deleted and replaced with either very easy or more difficult items or with items at intermediate positions to extend and to fill in gaps in construct coverage. Implications for theory and research on multicultural mental health scales were discussed.

Development of a scale to measure stigma related to podoconiosis in Southern Ethiopia.

BACKGROUND: Health-related stigma adds to the physical and economic burdens experienced by people suffering from neglected tropical diseases (NTDs). Previous research into the NTD podoconiosis showed significant stigma towards those with the disease, yet no formal instrument exists by which to assess stigma or interventions to reduce stigma. We aimed to develop, pilot and validate scales to measure the extent of stigma towards podoconiosis among patients and in podoconiosis-endemic communities. METHODS: Indicators of stigma were drawn from existing qualitative podoconiosis research and a literature review on measuring leprosy stigma. These were then formulated into items for questioning and evaluated through a Delphi process in which irrelevant items were discounted. The final items formed four scales measuring two distinct forms of stigma (felt stigma and enacted stigma) for those with podoconiosis and those without the disease. The scales were formatted as two questionnaires, one for podoconiosis patients and one for unaffected community members. 150 podoconiosis patients and 500 unaffected community members from Wolaita zone, Southern Ethiopia were selected through multistage random sampling to complete the questionnaires which were interview-administered. The scales were evaluated through reliability assessment, content and construct validity analysis of the items, factor analysis and internal consistency analysis. RESULTS: All scales had Cronbach's alpha over 0.7, indicating good consistency. The content and construct validity of the scales were satisfactory with modest correlation between items. There was significant correlation between the felt and enacted stigma scales among patients (Spearman's r = 0.892; p < 0.001) and within the community (Spearman's r = 0.794; p < 0.001). CONCLUSION: We report the development and testing of the first standardised measures of podoconiosis stigma. Although further research is needed to validate the scales in other contexts, we anticipate they will be useful in situational analysis and in designing, monitoring and evaluating interventions. The scales will enable an evidence-based approach to mitigating stigma which will enable implementation of more effective disease control and help break the cycle of poverty and NTDs.

Empowerment assessment tools in people with disabilities in developing countries. A systematic literature review.

INTRODUCTION: Many initiatives are undertaken to improve the empowerment of people with disabilities in developing countries. However, an overview of adequate measurement tools to evaluate such activities is not available to date. This systematic literature review aims to describe and assess the available tools to measure empowerment in people with disability, suitable for use in developing countries. METHODS: A systematic literature review was conducted. Articles were eligible when they described the development, validation, translation or the use of an instrument measuring empowerment in the context of disability. The instruments were assessed on their psychometric properties and on equivalence properties when they were translated. RESULTS: Thirty-six articles were found in which 17 questionnaires were developed, validated, translated or used. The questionnaires varied in the construct of empowerment, the target population and the psychometric properties. None of the questionnaires were developed or validated in a developing country. The psychometric properties and equivalence criteria were not adequately described and measured in any article. The Empowerment Scale (ES) of Rogers was the most often validated, translated and used questionnaire, receiving the highest number of positive ratings for the psychometric properties. DISCUSSION/CONCLUSION: The ES is the tool most widely used to measure empowerment, but adequate validation in a developing country context is still lacking. Cultural validity should be assessed in any culture before it is used. Further research is needed to develop empowerment instruments for developing countries and to assess the equivalence criteria, including psychometric properties of such questionnaires.

Validação do questionário de avaliação funcional das mãos em hanseníase / Validation of the questionnaire on hand function assessment in leprosy / Validación del cuestionario de evaluación funcional de las manos en presencia de lepra

OBJETIVO: Validar as propriedades psicométricas do questionário de avaliação funcional das mãos em hanseníase. MÉTODOS: Estudo realizado com amostra de conveniência de 101 pacientes consecutivos em Brasília, DF, de junho de 2008 a julho de 2009. As pessoas eram adultas afetadas pela hanseníase, com comprometimento nos nervos ulnar, mediano e radial. Foi analisada a reprodutibilidade interobservadores e intraobservador com entrevistas sucessivas e a validade do constructo com associação entre idade, forma clínica da hanseníase, tempo de lesão do nervo, forças de preensão e pinças realizadas com dinamômetro, teste de sensibilidade realizado com monofilamentos de Semmes-Weinstein e avaliação da habilidade manual, utilizando o teste de função manual de Jebsen. Calcularam-se os valores do índice kappa ponderado e construiu-se um gráfico Bland-Altman para avaliar a reprodutibilidade do instrumento. Para a consistência interna, utilizou-se o coeficiente alfa de Cronbach. Foi calculado o coeficiente de correlação de Pearson e usado modelo de regressão múltipla. RESULTADOS: Os valores de kappa ponderado para as avaliações interobservadores e intraobservador variaram de 0,86 a 0,97 e de 0,85 a 0,97, respectivamente. O valor do coeficiente alfa de Cronbach foi de 0,967. O coeficiente de correlação de Pearson mostrou associação (p < 0,001) entre tempo de lesão do nervo, forças de preensão e pinças, sensibilidade cutânea e escore médio do teste de Jebsen. O escore médio do questionário de avaliação funcional das mãos em hanseníase associou-se com classificação operacional da hanseníase, tempo de lesão do nervo, força de preensão, sensibilidade cutânea e habilidade manual (p < 0,0001 para o conjunto do modelo). CONCLUSÕES: O questionário de avaliação funcional das mãos em hanseníase apresenta reprodutibilidade quase perfeita interobservadores e intraobservador, alta consistência interna e correlação com classificação operacional da hanseníase, tempo de lesão do nervo, força de preensão, sensibilidade cutânea nas mãos e habilidade manual.

OBJECTIVE: To validate the psychometric properties of the questionnaire on hand function assessment in leprosy. METHODS: Study conducted with a convenience sample of 101 consecutive patients in Brasília (Central-Western Brazil), from June 2008 to July 2009. The individuals were adults affected by leprosy, with impairment of the ulnar, median and radial nerves. Interobservers and intraobserver reproducibility was analyzed through successive interviews, and construct validity was analyzed through association between age, clinical form of leprosy, duration of nerve injury, grip and pinch strength measured with a dynamometer, sensibility test performed with Semmes-Weinstein monofilaments and manual ability assessment using the Jebsen test of hand function. Pondered kappa coefficient was calculated and a Bland-Altman plot was constructed to assess the reproducibility of the instrument. For internal consistency, Cronbach's alpha coefficient was utilized. Pearson's correlation coefficient was calculated and a multiple regression model was used. RESULTS: The pondered kappa values for interobservers and intraobserver assessments ranged from 0.86 to 0.97 and from 0.85 to 0.97, respectively. The value of Cronbach's alpha coefficient was 0.967. Pearson's correlation coefficient showed an association (p < 0.001) among duration of nerve injury, grip and pinch strength, cutaneous sensibility and mean score in the Jebsen Test. The mean score of the questionnaire on hand functional assessment in leprosy was associated with operational classification of leprosy, duration of nerve injury, grip strength, cutaneous sensibility and manual ability (p < 0.0001 for the model as a whole). CONCLUSIONS: The questionnaire on hand functional assessment in leprosy presents almost perfect interobservers and intraobserver reproducibility, high internal consistency and correlation with operational classification of leprosy, duration of nerve injury, grip strength, cutaneous sensibility in the hands and manual ability.

OBJETIVO: Validar las propiedades psicométricas del cuestionario de evaluación funcional de las manos en presencia de lepra. MÉTODOS: El estudio se realizó con muestra de conveniencia de 101 pacientes consecutivos en Brasilia, DF, de junio de 2008 a julio de 2009. Las personas eran adultos afectados por la lepra, con comprometimiento en los nervios ulnar, mediano y radial. Se analizó la reproducibilidad inter e intra observadores con entrevistas sucesivas y la validez del constructo con asociación entre edad, forma clínica de la lepra, tiempo de lesión del nervio, fuerzas de prensión y pinzas realizadas con dinamómetro, prueba de sensibilidad realizada con monofilamentos de Semmes-Weinstein y evaluación de la habilidad manual, utilizando la prueba de función manual de Jebsen. Se calcularon los valores del índice kappa ponderado y se construyó un gráfico Bland-Altman para evaluar la reproducibilidad del instrumento. Para la consistencia interna, se utilizó el coeficiente alfa de Cronbach. Se calculó el coeficiente de correlación de Pearson y se usó el modelo de regresión múltiple. RESULTADOS: Los valores de kappa ponderado para las evaluaciones inter e intra observador variaron de 0,86 a 0,97 y de 0,85 a 0,97, respectivamente. El valor del coeficiente alfa de Cronbach fue de 0,967. El coeficiente de correlación de Pearson mostró asociación (p<0,001) entre tiempo de lesión del nervio, fuerzas de prensión y pinzas, sensibilidad cutánea y escore promedio de la prueba de Jebsen. El escore promedio del cuestionario de evaluación funcional de las manos en presencia de lepra se asoció con clasificación operacional de la lepra, tiempo de lesión del nervio, fuerza de prensión, sensibilidad cutánea y habilidad manual (p<0,0001) para el conjunto del modelo). CONCLUSIONES: El cuestionario de evaluación funcional de las manos en presencia de lepra presenta reproducibilidad casi perfecta inter e intra observador, alta consistencia interna y correlación con clasificación operacional de la lepra, tiempo de lesión del nervio, fuerza de prensión, sensibilidad cutánea en las manos y habilidad manual.

Validation of the questionnaire on hand function assessment in leprosy.

OBJECTIVE: To validate the psychometric properties of the questionnaire on hand function assessment in leprosy. METHODS: Study conducted with a convenience sample of 101 consecutive patients in Brasília (Central-Western Brazil), from June 2008 to July 2009. The individuals were adults affected by leprosy, with impairment of the ulnar, median and radial nerves. Interobservers and intraobserver reproducibility was analyzed through successive interviews, and construct validity was analyzed through association between age, clinical form of leprosy, duration of nerve injury, grip and pinch strength measured with a dynamometer, sensibility test performed with Semmes-Weinstein monofilaments and manual ability assessment using the Jebsen test of hand function. Pondered kappa coefficient was calculated and a Bland-Altman plot was constructed to assess the reproducibility of the instrument. For internal consistency, Cronbach's alpha coefficient was utilized. Pearson's correlation coefficient was calculated and a multiple regression model was used. RESULTS: The pondered kappa values for interobservers and intraobserver assessments ranged from 0.86 to 0.97 and from 0.85 to 0.97, respectively. The value of Cronbach's alpha coefficient was 0.967. Pearson's correlation coefficient showed an association (p < 0.001) among duration of nerve injury, grip and pinch strength, cutaneous sensibility and mean score in the Jebsen Test. The mean score of the questionnaire on hand functional assessment in leprosy was associated with operational classification of leprosy, duration of nerve injury, grip strength, cutaneous sensibility and manual ability (p < 0.0001 for the model as a whole). CONCLUSIONS: The questionnaire on hand functional assessment in leprosy presents almost perfect interobservers and intraobserver reproducibility, high internal consistency and correlation with operational classification of leprosy, duration of nerve injury, grip strength, cutaneous sensibility in the hands and manual ability.

Development and structural validation of a shortened version of the Participation Scale.

PURPOSE: To validate a shortened version of the Participation Scale (P-scale) that will be quicker to use and to describe the factor structure found in the P-scale data in various study samples. METHODS: A large multi-country and multi-cultural database was compiled consisting of 5125 respondents. Item analysis, explanatory factor analysis and confirmatory factor analysis were applied to identify items for deletion and investigate the factor structure of the P-scale. RESULTS: The multi-country database included 11 databases from six different countries. Respondents were affected by a range of health conditions, including leprosy, HIV/AIDS, dermatological conditions and various disabilities. Of the respondents included 57% were male. The P-scale Short (PSS) contains 13 items. A two-factor structure, with factors named "work-related participation" (three items) and "general participation" (10 items), showed the best model fit (Comparative Fit Index = 0.983, Tucker Lewis Index = 0.979, Rooted Mean Square Error of Approximation = 0.061). The Cronbach's alphas were very good for both the whole scale and the subscales, 0.91, 0.83 and 0.90, respectively. Correlation between the two factors was high (r = 0.75) indicating that interpreting the P-scale as measuring an overall factor "participation" is still valid. A very high correlation (r = 0.99) was found between the full P-scale and the PSS. CONCLUSIONS: The findings suggest good validity of the P-scale across a range of languages and cultures. However, field testing needs to confirm the validity of the PSS to measure the level of social participation restrictions across cultures and health conditions.