Vision-related quality of life among released from treatment cases of leprosy evaluated with NEI-VFQ-25: a cross-sectional study.

BACKGROUND: People with leprosy who have been declared Release From Treatment (RFT) are often not aware of the leprosy sequelae possibility which can decrease their quality of life. This could be because they have been adapting for a long time hence they do not feel the need to see physicians. This study seeks to compare the results of Vision-Related Quality of Life (VR-QoL) among RFT persons based on the National Eye Institute Visual Functioning Questionnaire-25 (NEI-VFQ-25) and WHO grading disability based on physical examination. METHODS: A cross-sectional study of 325 RFT subjects from leprosy communities (Singkawang, West Kalimantan and Tangerang, Banten) was conducted between 2018 and 2019. We used the NEI-VFQ-25 questionnaire that had been validated and translated into Indonesian and distributed to the leprosy population. Relationships and comparisons among variables were evaluated using Kruskal-Wallis and Mann-Whitney tests. RESULTS: There were three main results: The median composite score of VR-QoL for WHO grade 0, 1, and 2 disabilities has decreased by 13%, 25.5%, and 30% of the maximum value, respectively. Of the total, eleven subscales were statistically significant between WHO grading disability and VR-QoL based on the NEI-VFQ-25 (p < 0.05). The comparison between grade 0 and grade 2 disability in all subscales was statistically significant (p < 0.05). CONCLUSIONS: The grade of disability is related to their VR-QoL assessment using the NEI-VFQ-25 questionnaire. Thus, it can be used as an initial screening in primary healthcare settings to increase awareness of disability before a thorough physical examination.

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.

Evaluating the impact of a pre-recorded online video on doctor's knowledge and attitude towards leprosy in Sabah and Labuan - a quasi experimental study.

INTRODUCTION: Global actions have been implemented worldwide to eliminate leprosy. However, under-recognition and stigmatisation continue to be the challenges. In Sabah, the grade two disability rate was 0.15/100,000 population in 2019, implicating a significant delay in diagnosis. This study aimed to assess the knowledge and attitude towards leprosy and the impact of lecture intervention among doctors in Sabah and Labuan, Malaysia. MATERIALS AND METHODS: This study consists of two parts. First, a cross-sectional study on the knowledge of and attitude towards leprosy using an online quesitonnaire was conducted among doctors working in the primary care clinics and hospitals in Sabah and Labuan. Subsequently, the participants were asked to watched an online prerecorded video lecture on leprosy and to answered the same questionnaire. RESULTS: Of the 310 participants, one fifth (20.6%) had good knowledge and 36.5% had positive attitude towards leprosy. Being a specialist (adjusted odds ratio [aOR] 4.55, 95% confidence interval [CI] 2.17-9.57, p < 0.001), managed ≥ 5 leprosy cases (aOR 3.37, 95% CI 1.52-7.47, p = 0.003), and involved in educational activities related to leprosy within last year (aOR 4.7, 95% CI 1.69-13.04, p < 0.001) were the significant predictors of good knowledge. Working in tertiary care was significantly associated with good attitude towards leprosy (OR 2.19, 95% CI 1.22-3.94, p = 0.025). There was a significant improvement in participants' knowledge post-intervention (87.0% participants post-lecture vs 20.6% participants pre-lecture with good knowledge, p < 0.001). CONCLUSION: The proportion of doctors in Sabah and Labuan with good knowledge and attitude towards leprosy was low. Knowledge of leprosy improved significantly postintervention. This highlights the need for educational and training programmes to improve doctors' knowledge of leprosy.

Outcome of COVID-19 in patients with autoimmune bullous diseases.

Background Data on outcomes of Coronavirus disease 2019 (COVID-19) infection in autoimmune bullous diseases (AIBDs) patients is scarce. Materials and methods This single-centre survey-based-observational study included patients registered in the AIBD clinic of the Postgraduate Institute of Medical Education and Research, Chandigarh, India. All registered patients were contacted over telephone between June and October 2021. A survey was conducted after obtaining informed consent. Results Among 1389 registered patients, 409 completed the survey. Two hundred and twenty-two (55.3%) patients were females and 187 (45.7%) were males. The mean age was 48.52 ± 14.98 years. Active disease was reported by 34% patients. The frequency of COVID-19 infection in responders was 12.2% (50/409), with a case-fatality ratio of 18% (9/50). Rituximab infusion after the onset of pandemic significantly increased the risk of COVID-19 infection. Active AIBD and concomitant comorbidities were significantly associated with COVID-19 related death. Limitation Relative risk of COVID-19 infection and complications among AIBD patients could not be estimated due to lack of control group. The incidence of COVID-19 in AIBD could not be determined due to lack of denominator (source population) data. Other limitations include telephonic nature of the survey and lack of COVID-19 strain identification. Conclusion Use of rituximab is associated with higher probability of COVID-19 infection, while advanced age, active disease and presence of comorbidities may increase the risk of COVID-19 mortality in AIBD patients.

Assessment of neuropathic pain, functional activity limitation and quality of life of people affected by leprosy in an endemic area in Northeast Brazil: a cross-sectional study.

BACKGROUND: This study investigated the prevalence of neuropathic pain (NP) among people affected by leprosy and its effects on functional limitation and health-related quality of life (HRQoL) in an endemic area in Northeast Brazil. METHODS: This is a cross-sectional study of 122 leprosy patients. Functional limitation and HRQoL were assessed using the Screening of Activity Limitation and Safety Awareness (SALSA) and WHO Quality-of-Life (WHOQoL-BREF) scales, respectively. Participants were assessed for the presence of pain and completed the Douleur Neuropathique 4 and the Brief Pain Inventory scales. RESULTS: The prevalence of NP was 59%. Participants with NP had higher SALSA scores than those without pain (median; IQR: 42; 32-49.5 vs 27.5; 24-34; p=0.002). Increasing SALSA scores were related to decreasing WHOQoL-BREF scores in the physical (r=-0.54; p<0.001), psychological (r=-0.33; p=0.002) and environmental (r=-0.22; p=0.01) domains, but not in the social domain (r=-0.14; p=0.10). Individuals with NP had the lowest scores in all domains compared with individuals without pain. CONCLUSIONS: Appropriate tools and training of clinicians for diagnosing NP in leprosy patients are necessary for their appropriate management and better HRQoL outcomes.

Prevalence of eczema among older persons: A population-based cross-sectional study.

Background There are very few population-based studies on the prevalence of eczema among older persons Aims To estimate the prevalence and types of eczema in those aged 65 years or more in the community and to evaluate the effectiveness of community-based interventions for case finding. Methods In the first stage of this cross-sectional survey, trained health workers of a non-governmental organization surveyed the eligible population and identified persons likely to have eczema. In the second stage, dermatologists examined such persons to ascertain the diagnosis. Statistical analysis was done using Epi Info software version 7. Prevalence of eczema was expressed in percentages. Chi-square test was used for comparing the difference in prevalence of eczema in various age groups and sex. Results Health workers identified 98 persons as possible cases of eczema after interviewing 385 older persons in the community. Among them 95 persons were examined by dermatologists and 44 were confirmed to have eczema (diagnostic accuracy of health workers = 46.3%).Point prevalence of eczema was 11.4% (44/385). Prevalence was similar in males and females. It was greater (18.2 %) among persons aged 81 years or more. Asteatotic eczema, gravitational eczema and lichen simplex chronicus were the more common types of eczema. Limitations: Possible underestimation of the prevalence rates due to limited medical knowledge of health workers; limited facilities for examination and investigations at the medical camps and home visits. Conclusion There appears to be a considerable burden of eczema among older persons in the community. A community-based approach involving non-governmental organizations has the potential to identify cases and offer care close to their homes.

Psychodermatology - a case for sensitization of pharmacists in Mumbai, India.

BACKGROUND: Though studies have looked at the attitudes of dermatologists towards psychodermatology, few have highlighted the attitudes of pharmacists towards these conditions. OBJECTIVES: To study the knowledge, attitudes and practices of pharmacists towards the prescription of psychotropic medications to dermatology patients. METHODS: This cross-sectional analysis included 80 pharmacists from Mumbai, India. We used an interviewer-administered questionnaire to collect information from pharmacists on their demographics, psychotropic medications in dermatological patients, knowledge about psychocutaneous conditions and comfort about dispensing these medications. RESULTS: In our study, 37 (46%) of pharmacists received prescriptions of psychotropic drugs from dermatologists; however, 24 (30%) were not comfortable dispensing them. Sixty (75%) pharmacists felt that only psychiatrists should prescribe psychotropic drugs and 37 (46%) felt that they had a right to refuse to dispense prescribed medication; of these, 15 (19%) had actually refused to give medications to patients. Pharmacists who disagreed with the statement that 'the state of mind is associated with medical conditions', were more likely to discourage psychotropic prescription from dermatologists (29% vs 11%, P = 0.04). Pharmacists with experience of more than five years were significantly more likely to refuse to dispense medications (odds ratio: 5.14, 95% confidence interval: 1.02, 25.83; P = 0.047). LIMITATIONS: We did not have a list of all pharmacists in Mumbai; thus, no sampling frame could be applied. CONCLUSION: Pharmacists do comment on doctors' prescriptions, discourage certain medications and even refuse to dispense them based on their personal opinions. Since they are the last stop for patients between the doctor and the medication, their inclusion (in addition to dermatologists, psychiatrists and psychologists) in integrated awareness, training and care programs would improve the quality of care of patients with psychocutaneous disorders.

Myths, misconceptions and attitudinal trends among patients with acne.

Background Despite acne being a common dermatological problem, there is a paucity of literature addressing the knowledge, attitude and practice about it. Aims/Objectives To find out what patients know about acne, its cause and treatment, as well as myths, misconceptions and attitude towards it. Methods A cross-sectional, descriptive questionnaire-based study on acne patients at Maharana Bhupal Hospital, RNT Medical College, Udaipur, Rajasthan, India. Results Most (84.8%) patients belonged to the age group of 16-25 years. The majority (63.9%) presented 12 months after the onset of acne. More than half had average knowledge, a positive attitude and good practices, related significantly to gender and education. Limitations A standardized questionnaire suitable for all dialects and regional languages would have yielded more uniform results. Conclusion Study revealed that acne patients still need to acquire accurate, adequate and easily accessible information to seek timely and appropriate treatment, and alleviate their psychological suffering.

Adaptation and validation of the Bengali version of the Chronic Urticaria Quality of Life Questionnaire (CU-Q2oL).

Background Chronic urticaria exerts a profound impact on quality of life. Recent guidelines recommend its evaluation in all chronic urticaria patients. Currently, the Chronic Urticaria Quality of Life Questionnaire (CU-Q2oL) is the only validated tool to assess chronic urticaria-specific quality of life. Objective To validate and adapt the CU-Q2oL to the Bengali language for its widespread use. Methods The CU-Q2oL questionnaire was translated into Bengali. Its internal consistency and reliability were tested by asking 42 chronic urticaria patients to complete this version. They completed the validated Bengali Dermatology Life Quality Index and Urticaria Control test questionnaires, and their scores were correlated with CU-Q2oL score to assess the validity of our Bengali version. Results The mean CU-Q2oL score of our patients (mean age 38.41 ± 13.4 years, male: female 29:13) was 48.8 ± 16.5. Domain 4 (sleep problems) was worst affected, followed by domain 1 (pruritus), while domain 2 (swelling) was least affected. We detected an excellent overall internal consistency (Cronbach's alpha = 0.93) of our version and nearly complete agreement (intra-class correlation coefficient = 0.91) between the test-retest scores. We found a significant positive correlation between the overall CU-Q2oL and Dermatology Life Quality Index scores (rs = 0.53, P = 0.0002), thus implying the validity of our version. Additionally, we noted a significant negative correlation between the overall CU-Q2oL and Urticaria Control test scores (rs = -0.48, P = 0.0007), suggestive of a more severe impairment of quality of life with poorer disease control. Limitations Small sample size, observational design and bias in test-retest reliability analysis due to the use of rescue therapy in-between assessment sessions were important limitations of our study. Conclusion The Bengali version of CU-Q2oL questionnaire is a valid and reliable tool suitable for both clinical and research use in Bengali speaking chronic urticaria patients.

Avaliação de uma ferramenta de ensino no tratamento da hanseníase para profissionais da saúde na atenção básica / Evaluation of a teaching tool in the treatment of leprosy for health professionals in primary care

O uso de materiais didáticos sobre o tratamento da hanseníase pode auxiliar os profissionais de atenção básica a esclarecer as dúvidas dos usuários e ampliar o conhecimento.O objetivo consistiu em validar uma ferramenta educativa sobre o tratamento da hanseníase com a poliquimioterapia. O estudo consistiu em pesquisa realizada com 10 profissionais da rede de atenção básica em hanseníase, município de Fernandópolis. Foi confeccionada uma cartilha educativa com a participação de pesquisadores e docentes nas áreas da hanseníase e design. O estudo consistiu na execução de três fases: preparação; coleta de dados e interpretação; concretização e descrição dos resultados. Foi aplicado um questionário com 23 perguntas (relativas ao design e ao conteúdo). Verificou-se que os eixos temáticos com sugestões de mudanças foram relacionados à compreensão do tratamento; cartelas pauci ou multibacilares; local de aquisição dos medicamentos; horário dos medicamentos; consumo de bebida alcoólica; benefícios e reações do tratamento; abandono do tratamento; tratamento na gravidez, uso de pílula anticoncepcional e propostas de alterações em poucas figuras e no formato da cartilha. Os profissionais de saúde foram capazes de apontar melhorias e possíveis falhas com a finalidade de melhorar a qualidade do referido produto gráfico. Convém ampliar essa investigação para os usuários do programa de hanseníase que realizam ou realizaram a poliquimioterapia e vivenciaram aspectos positivos e dificuldades com o tratamento.

The predictive role of psychological toughness and adaptability on the actual well-being of mothers with handicapped children.

Background and Aim: Handicapped children cause psychological problems for mothers. As mothers' actual well-being is so important in the family and society, the aim of this research was to predict the role of psychological toughness and adaptability on the actual well-being of mothers with handicapped children. Materials and Methods: The research was descriptive correlational study with volunteer mothers of handicapped children (n=150). Data collection tools were: Ahwaz Kiamarsi et al. (1998) psychological toughness questionnaire, Connor and Davidson adaptability scale (2003), Lyubomerisky and Leper actual well-being scale (1999) and Diener life satisfaction scale (2009). Pearson correlation coefficient and multiple linear regression analysis were used to analyze the data using SPSS 21 version. Results: The results showed that psychological toughness and its components (commitment, control, struggle) have a significant positive relationship with the actual well-being of mothers with handicapped children and its dimensions (actual well-being and life satisfaction) and is able to predict their well-being. Discussion: Therefore, it can be said that by promoting adaptability, mothers with handicapped children can resist and overcome stressors as well as factors that cause many psychological problems. By reducing psycho-emotional problems in mothers, mental well-being and life satisfaction are improved. Conclusion: The actual well-being of mothers with handicapped children can be predicted by their psychological toughness and adaptability.

Hansenapp: Development of a mobile application to assist primary healthcare providers to control leprosy.

OBJECTIVE: To describe the development and validation of a mobile application to assist health professionals in the management of patients with leprosy and surveillance of contacts in primary healthcare. METHOD: A methodological and developmental study was conducted in three phases: integrative literature review, mobile application development and application validation by health professionals. The construction of the application was supported by the literature review, Nielsen's heuristics and expert validation. Five experts individually analysed the prototype draft and performed two rounds of iterations to refine their recommendations. The validation step was performed by consulting health professionals working in primary healthcare, who evaluated the application for relevance, clarity and usability using a questionnaire based on task-technology fit theory. RESULTS: The mobile app's content, navigation methods and interaction were refined based on the discussions with experts. Their recommendations were applied, and the mobile app was revised until the final version was approved. Content validity indexes of 0.94 (p = 0.007), 0.99 (p > 0.0001) and 0.93 (p = 0.01) were obtained. CONCLUSION: The developed application is a technological tool that could assist primary healthcare providers in dealing with leprosy patients and their contacts in terms of management, planning, monitoring, evaluation, treatment and follow-up, in addition to leprosy control actions.

Community intervention programmes with people affected by leprosy: Listening to the voice of professionals.

BACKGROUND: Community participation and implementing interventions based on the community are key strategies to eliminate leprosy. Health professionals have an essential role as they are a necessary source of information because of their knowledge and experience, as well as their comprehensive perspective of contexts included in the programmes. This study has the aim of analysing the perceptions on the development of programmes with people affected by leprosy from the perspective of professionals that work at different organisations in endemic contexts. METHODOLOGY: A qualitative study was carried out with the written response to an open question questionnaire which was sent by email. The script content was related to positive aspects and difficulties in daily work, participation from the community in activities, contribution to gender equality and programme sustainability. 27 health professionals were interviewed, 14 women and 13 men, all of which belonged to 16 organisations in India and Brazil. Once the content of the interviews was analysed, two main topics emerged: barriers perceived by professionals and proposals to improve the sustainability of the programmes. PRINCIPAL FINDING: Professionals identify barriers related to social stigma, inequalities, gender inequalities, difficulty managing the disease, limited services, lack of resources and lack of community participation. Furthermore, some necessary recommendations were taken into account to improve programme development related to: Eliminating stigma, reaching gender equality, developing adequate and effective services, guaranteeing adequate and quality resources and achieving compassion among professionals. CONCLUSIONS: Although introducing community programmes with people affected by leprosy has a long history in countries such as India and Brazil, there are still several barriers that can hinder their development. Based on the specific needs of the contexts, recommendations are suggested that, with the involvement of all parties and with sensitive approaches towards human rights and gender, they could help to guarantee universal health coverage and the sustainability of said programmes.

Development of a questionnaire to determine the case detection delay of leprosy: A mixed-methods cultural validation study.

BACKGROUND: Delay in case detection is a risk factor for developing leprosy-related impairments, leading to disability and stigma. The objective of this study was to develop a questionnaire to determine the leprosy case detection delay, defined as the period between the first signs of the disease and the moment of diagnosis, calculated in total number of months. The instrument was developed as part of the PEP4LEP project, a large-scale intervention study which determines the most effective way to implement integrated skin screening and leprosy post-exposure prophylaxis with a single-dose of rifampicin (SDR-PEP) administration in Ethiopia, Mozambique and Tanzania. METHODOLOGY/PRINCIPAL FINDINGS: A literature review was conducted and leprosy experts were consulted. The first draft of the questionnaire was developed in Ethiopia by exploring conceptual understanding, item relevance and operational suitability. Then, the first draft of the tool was piloted in Ethiopia, Mozambique and Tanzania. The outcome is a questionnaire comprising nine questions to determine the case detection delay and two annexes for ease of administration: a local calendar to translate the patient's indication of time to number of months and a set of pictures of the signs of leprosy. In addition, a body map was included to locate the signs. A 'Question-by-Question Guide' was added to the package, to provide support in the administration of the questionnaire. The materials will be made available in English, Oromiffa (Afaan Oromo), Portuguese and Swahili via https://www.infolep.org. CONCLUSIONS/SIGNIFICANCE: It was concluded that the developed case detection delay questionnaire can be administered quickly and easily by health workers, while not inconveniencing the patient. The instrument has promising potential for use in future leprosy research. It is recommended that the tool is further validated, also in other regions or countries, to ensure cultural validity and to examine psychometric properties like test-retest reliability and interrater reliability.

Impact of SARS-CoV-2 pandemic on dermatology residents: A nationwide French study.

Background Coronavirus disease 2019 (COVID-19) has changed the practice of all health-care professionals. Determining the impact could prevent repercussions in future crisis. Objectives The objectives of the study were to assess the impact of the COVID-19 pandemic on dermatology residents' professional practice, working conditions, academic training and mental health. Methods An online questionnaire was sent to all French dermatology residents. We compared the activity of residents working in areas heavily impacted by COVID-19 to others. Logistic multivariate regressions were done, using as outcome variables the negative impact of the COVID crisis on residents' possibility to practice dermatology during the crisis, supervision, academic training and working more than 50 h/week. The last part of the questionnaire was the burnout questionnaire of Maslach. Results A total of 246 residents filled the questionnaire. Residents working in highly impacted COVID areas (odds ratio, OR 0.34 confidence interval, CI [0.18, 0.61], P ≤ 0.001), first-year postgraduate (PGY-1) residents (OR 0.46 CI [0.23, 0.91], P = 0.023) and those in private practice (OR 0.10 CI [0.01, 0.57], P = 0.032) were significantly less able to maintain dermatology activities. Worse supervision was significantly more frequent with non-PGY-1 residents (OR 3.24 CI [1.65, 6.65], P < 0.001). One hundred and eighty one residents claimed the pandemic to have a negative effect on their dermatology curriculum with no difference according to their regions' affection by COVID-19. This was mostly attributed to the cancelation of courses and congresses. PGY-1 residents (OR 2.09 CI [1.09, 4.04], P = 0.029) and residents in highly affected areas (OR 1.79 CI [1.01, 3.18], P = 0.049) were more at risk of working above the maximal legal working time. None of the residents was free of burnout symptoms. Conclusion Dermatology residents have been highly affected by COVID-19. It might be important to have a more integrated healthcare system to fight times of crisis with the least repercussions on residents.

Hindi translation and validation of quality of life score in Indian patients with epidermolysis bullosa; and its correlation with the clinical severity assessment scores: A cross-sectional study.

BACKGROUND: Quality of life (QoL) has not been evaluated in Indian patients having epidermolysis bullosa (EB). AIMS: The aims of the study were to measure health-related QoL in Indian patients having EB using the quality of life in epidermolysis bullosa (QoLEB) questionnaire, and to find its correlation with clinically measured disease severity. METHODS: In this observational cross-sectional study, the QoLEB questionnaire was translated from English to Hindi (QoLEB-Hin) and culturally adapted without a change in concept following standard guidelines. QoLEB-Hin and three clinical scores that have been independently validated in EB, that is, Birmingham Epidermolysis Bullosa severity score (BEBs), Instrument for Scoring Clinical Outcomes of Research for Epidermolysis Bullosa (iscorEB) and Epidermolysis Bullosa Disease Activity and Scarring Index (EBDASI), were administered to EB patients/their parents in the presence of an expert. This was followed by validity and correlation studies. RESULTS: Fifty-four patients were recruited (19-females, 35-males; median age 5 years, range 0.025-36 years and 12 patients with an age >13 years). The parents answered the questions for 42 patients (age <13 years). Dystrophic epidermolysis bullosa was diagnosed in 32 (59.2%) patients (dominant dystrophic epidermolysis bullosa [DDEB]-19 [35.2%] and recessive dystrophic epidermolysis bullosa [RDEB]-13 [24.1%]). Junctional epidermolysis bullosa (JEB) and epidermolysis bullosa simplex (EBS) were each diagnosed in 11 (20.4%) patients. The mean ± standard deviation (SD) of QoLEB-Hin score of all epidermolysis bullosa patients was 11.3 ± 7.6 (range 0-28; median and interquartile range [IQR], 10, 10) and reflected an overall moderate degree of affliction on QoL of patients. Mean ± SD of QoLEB-Hin scores for EBS, JEB, DDEB and RDEB were 5.4 ± 3.7 (range, 1-13; median and IQR, 6, 6), 11 ± 6.2 (range, 1-22; median and IQR, 10, 6), 9 ± 5.7 (range, 0-19; median and IQR, 10, 10) and 20.1 ± 6.4 (range, 12-28; median and IQR, 19, 12.5), respectively (P < 0.001, Kruskal-Wallis analysis of variance). Cronbach's alpha coefficient of 0.946 was obtained for all items indicating excellent internal consistency and reliability. Mean sample adequacy was 0.91; absolute fit based off diagonal values was 0.99; indices root mean square error of approximation and root mean square residual were 0.04 and 0.05, respectively, and Tucker Lewis index was >1 indicating overfit. The mean time taken to complete the questionnaire was 6.1 min (range, 6-8 min). QoLEB-Hin correlated significantly (P < 0.001) with BEBs (ρ = 0.79), iscorEB (ρ= 0.63) and EBDASI (ρ = 0.77). Three multiple linear regression models were used to ascertain the strength of relationship between QoL-Hin, and BEBs, iSCOREB and EBDASI, respectively, after adjusting for age, gender and disease subtype. The EBDASI clinical score accounted for approximately 74% (R2 = 0.736, P < 0.001) of the variability in QOL-Hin, as compared to 73% and 55% by BEBs (R2 = 0.731, P < 0.001) and iscorEB (R2 = 0.545, P < 0.001), respectively. LIMITATIONS: Parents filled out the questionnaires for many patients and probably led to an overall moderate degree of affliction of QoL. Comparison with Dermatology Life Quality Index and other QoL scores were not done in this study. Furthermore, the scoring was done at one point in time, and test-retest measurements could not be performed. CONCLUSION: This study validated QoLEB-Hin in an Indian population finding an overall moderate reduction in QoL due to EB. Maximally affected QoL was seen in patients with RDEB. Furthermore, QoLEB-Hin had a variable positive correlation and association with all clinical severity assessment scores.

Elders in a former brazilian leprosy colony: clinical and functional vulnerability and vocal and hearing self-perception. / Idosos de uma antiga colônia brasileira de hanseníase: vulnerabilidade clínico-funcional e autopercepção vocal e auditiva.

PURPOSE: Verifying the association between clinical-functional vulnerability and vocal and auditory self-perception in seniors presenting a history of leprosy. METHODS: Cross-sectional study encompassing 117 elderly people from an old leprosy colony in southeastern Brazil. The research analyzed sociodemographic information and the following protocols: Clinical-Functional Vulnerability Index-20 (IVCF-20), Hearing Handicap Inventory for the Elderly Screening Version (HHIE-S), Screening for Vocal Change in the Elderly (RAVI) and Vocal Handicap Index 10 (IDV-10). For data analysis, the ordinal logistic regression model of proportional odds was used. RESULTS: 37.6% of the elderly were classified as robust, 35.0% at risk of fragility and 27.4% as frail. Vocal alteration (RAVI), vocal handicap (IDV-10) and restriction to auditory participation (HHIE-S) were observed in 65.8%, 24.8% and 48.7% respectively, in the studied population. In the multivariate analysis, it was found the oldest group (OR = 1.11; CI: 1.05-1.16) and those with vocal handicap (OR = 4.11; 95% CI: 1.77-9.56) were more likely to be classified as at risk of fragility or already fragile. The simultaneous presence of vocal handicap and restriction of auditory participation (46.9%) was larger among frail elderly people. CONCLUSION: The increasing age of the elderly and the presence of vocal handicap is associated with greater clinical-functional vulnerability. The high prevalence of both voice and hearing disorders reinforces the need for the speech therapist to be included in public policies, directed towards caring for people with a history of leprosy.

OBJETIVO: Verificar a associação entre vulnerabilidade clínico-funcional e autopercepção vocal e auditiva de idosos com histórico de hanseníase. MÉTODO: Estudo transversal desenvolvido com 117 idosos de uma antiga colônia de hanseníase no sudeste do Brasil. Foram analisadas informações sociodemográficas, e os protocolos: Índice de Vulnerabilidade Clínico-funcional (IVCF-20), Hearing Handicap Inventory for the Elderly Screening Version (HHIE-S), Rastreio de Alteração Vocal em Idosos (RAVI) e Índice de Desvantagem Vocal 10 (IDV-10). O IVCF-20 classifica o idoso como robusto, em risco de fragilização e frágil. Para análise dos dados utilizou-se o modelo de regressão logística ordinal de chances proporcionais. RESULTADOS: 37,6% dos idosos foram classificados em robustos, 35,0% em risco de fragilização e 27,4% em frágeis. A alteração vocal (RAVI), desvantagem vocal (IDV-10) e restrição à participação auditiva (HHIE-S) foram observadas em 65,8%, 24,8% e 48,7% dos idosos, respectivamente. Na análise multivariada, verificou-se que idosos mais velhos (OR=1,11; IC: 1,05-1,16) e com desvantagem vocal (OR=4,11; IC 95%: 1,77-9,56) tiveram maiores chances de serem classificados como em risco de fragilização ou frágil. A presença simultânea de desvantagem vocal e restrição à participação auditiva (46,9%) foi maior entre os idosos frágeis. CONCLUSÃO: O aumento da idade dos idosos e a presença de desvantagem vocal tem associação com a maior vulnerabilidade clínico-funcional. As altas prevalências de alterações vocais e auditivas reforçam a necessidade da inclusão do fonoaudiólogo nas políticas públicas voltadas ao cuidado de pessoas com histórico de hanseníase.

Changing perception and improving knowledge of leprosy: An intervention study in Uttar Pradesh, India.

INTRODUCTION: Since ancient times leprosy has had a negative perception, resulting in stigmatization. To improve the lives of persons affected by leprosy, these negative perceptions need to change. The aim of this study is to evaluate interventions to change perceptions and improve knowledge of leprosy. METHODOLOGY/PRINCIPAL FINDINGS: We conducted a pre-post intervention study in Fatehpur and Chandauli districts, Uttar Pradesh, India. Based on six steps of quality intervention development (6SQuID) two interventions were designed: (1) posters that provided information about leprosy and challenged misconceptions, and (2) meetings with persons affected by leprosy, community members and influential people in the community. The effect of the interventions was evaluated in a mixed-methods design; in-depth interviews, focus group discussions, and questionnaires containing a knowledge measure (KAP), two perception measures (EMIC-CSS, SDS) and an intervention evaluation tool. 1067 participants were included in Survey 1 and 843 in Survey 2. The interventions were effective in increasing knowledge of all participant groups, and in changing community and personal attitudes of close contacts and community members (changes of 19%, 24% and 13% on the maximum KAP, EMIC-CSS and SDS scores respectively, p<0.05). In Survey 1, 13% of participants had adequate knowledge of leprosy versus 53% in Survey 2. Responses showed stigmatizing community attitudes in 86% (Survey 1) and 61% (Survey 2) of participants and negative personal attitudes in 37% (Survey 1) and 19% (Survey 2). The number of posters seen was associated with KAP, EMIC-CSS and SDS scores in Survey 2 (p<0.001). In addition, during eight post-intervention focus group discussions and 48 interviews many participants indicated that the perception of leprosy in the community had changed. CONCLUSIONS/SIGNIFICANCE: Contextualized posters and community meetings were effective in changing the perception of leprosy and in increasing leprosy-related knowledge. We recommend studying the long-term effect of the interventions, also on behavior.