Revised estimates of leprosy disability weights for assessing the global burden of disease: A systematic review and individual patient data meta-analysis.

BACKGROUND: Leprosy is a chronic bacterial infection caused by Mycobacterium leprae, which may lead to physical disability, stigma, and discrimination. The chronicity of the disease and disabilities are the prime contributors to the disease burden of leprosy. The current figures of the disease burden in the 2017 global burden of disease study, however, are considered to be under-estimated. In this study, we aimed to systematically review the literature and perform individual patient data meta-analysis to estimate new disability weights for leprosy, using Health-Related Quality of Life (HRQOL) data. METHODOLOGY/PRINCIPAL FINDINGS: The search strategy included all major databases with no restriction on language, setting, study design, or year of publication. Studies on human populations that have been affected by leprosy and recorded the HRQOL with the Short form tool, were included. A consortium was formed with authors who could share the anonymous individual-level data of their study. Mean disability weight estimates, sorted by the grade of leprosy disability as defined by WHO, were estimated for individual participant data and pooled using multivariate random-effects meta-analysis. Eight out of 14 studies from the review were included in the meta-analysis due to the availability of individual-level data (667 individuals). The overall estimated disability weight for grade 2 disability was 0.26 (95%CI: 0.18-0.34). For grade 1 disability the estimated weight was 0.19 (95%CI: 0.13-0.26) and for grade 0 disability it was 0.13 (95%CI: 0.06-0.19). The revised disability weight for grade 2 leprosy disability is four times higher than the published GBD 2017 weights for leprosy and the grade 1 disability weight is nearly twenty times higher. CONCLUSIONS/SIGNIFICANCE: The global burden of leprosy is grossly underestimated. Revision of the current disability weights and inclusion of disability caused in individuals with grade 0 leprosy disability will contribute towards a more precise estimation of the global burden of leprosy.

A qualitative study exploring the parceived impact of race on leprosy-affected persons' experiences of diagnosis and treatment of leprosy in Southeast Brazil

Leprosy is a chronic, yet curable, infectious disease that causes severe morbidity in Brazil with an annual incidence of 33,000 new cases. Recent studies in Brazil showed a correlation between leprosy and the percentage of non-whites affected. Racial discrimination has been documented as a barrier to accessing healthcare. This study seeks to explore whether patients perceive race to have impacted on their leprosy care. A qualitative study was undertaken. 20 semi-structured interviews were conducted with patients' at Instituto Lauro de Souza Lima (ILSL), Brazil. Thematic analysis was used to analyse the data. 4 main themes were generated: racism is part of Brazilian culture, difficulties associated with the diagnosis of Leprosy, barriers to accessing treatment, and a lack of health education. Participants felt that racism infiltrates all aspects of Brazilian society, with isolated incidents in healthcare settings. Racism is known to be associated with socioeconomic inequalities. Leprosy control continues to be hindered by various social determinants of health. This, in turn, affects patients' access to leprosy treatment and care. This study may inform the continuing development of equitable leprosy control strategies in Brazil.

Revised estimates of leprosy disability weights for assessing the global burden of disease: a systematic review and individual patient data meta-analysis

Leprosy is a chronic, disabling disease that causes various kinds of disability in the affected person. This includes physical impairment, activity limitation, and participation restriction. However, the published global burden of disease estimates for leprosy is considered to be a gross under-estimation. Disability weights form an integral component in the calculation of the burden estimates. But the methodology for calculation of the weights focuses only on physical impairment and lacks the perspective of the patient. In this study, we systematically reviewed the literature and performed an individual patient data meta analysis for revising the disability weights for leprosy using domain scores from health related quality of life instruments. The domains of these instruments cover all aspects of disability from a patient's perspective. We found that the revised weights were considerably higher than the current weights, and were more reflective of the actual disability caused by leprosy. We also found that for individuals without any severe disability due to leprosy (grade 0), they still experience comparable suffering. Revision of the current disability weights and inclusion of the disability caused in grade 0 individuals will contribute towards better estimation of the global burden of leprosy.

Perceptions and experiences regarding the impact of race on the quality of healthcare in Southeast Brazil: a qualitative study.

Objective: To explore the impact of race on the quality of healthcare received by patients attending a primary care centre in Brazil.Design: This was a qualitative study consisting of 19 semi-structured interviews conducted on patients from six racial groups (as defined in Brazil as white, yellow, brown, black and indigenous and one self-identified 'other' group). The interviews were analysed using thematic analysis.Results: Four main themes were identified during analysis; factors affecting the access to healthcare, experiences regarding quality of healthcare, discrimination in healthcare and deep-rooted societal discrimination, which were categorised into a number of sub-themes. Within these themes, interviewees reported (1) experiences of racism in society towards the black racial group, (2) one personal perception and two observations of racial discrimination in healthcare, (3) perceived racial discrimination due to healthcare professional behaviour and (4) other factors, such as delays in appointments and long waiting times in health facilities were felt to impact access to care.Conclusion: The findings suggest that racial discrimination exists in Brazilian society but its direct impact on healthcare access was felt to be less obvious. Instead, organisational level factors were felt to contribute to difficulty accessing care. Interviewees perceived that racial discrimination may affect the quality of care, particularly for those designated as 'black'. Socio-economic factors were felt to influence discrimination in healthcare. The findings can help inform further studies and educational initiatives to help address discrimination and access to healthcare in Brazil.

Avaliação da limitação das atividades, participação social e estratégias de enfrentamento em idosos na hanseníase / Evaluation of the limitation of activities, social participation and strategies for counseling in elderly people in leprosy

O modo como os idosos enfrentam os obstáculos após o diagnóstico da hanseníase (comprometimento funcional, participação social na vida familiar, profissional e comunitária) pode direcionar o planejamento das ações de prevenção de incapacidades e do programa de reabilitação a qual o idoso está inserido, de acordo com as necessidades individuais. Portanto, o objetivo deste estudo consiste em avaliar a limitação na realização de atividades de vida diária (AVDs), participação social e as estratégias de enfrentamento em idosos afetados pela hanseníase. Fizeram parte desse estudo 70 idosos afetados pela doença, em acompanhamento no Instituto Lauro de Souza Lima, com idade igual ou superior a 60 anos. Foram utilizados cinco instrumentos de avaliação, a saber: Questionário com dados sociodemográficos e clínicos, Avaliação do grau de incapacidade (GI), SALSA, Escala de Participação Social e Inventário de Coping. Foi utilizada análise estatística descritiva para a caracterização da casuística. Houve um predomínio de pacientes do sexo masculino (67,14%), multibacilares (87,14%), com tempo de diagnóstico maior de 20 anos (42,85%), GI 2 (64,28%), idosos com alguma limitação nas AVDs (91,43%), sem restrição significativa (51,43%) e com restrições a participação social de leve à grave (48,57%). Quanto às estratégias de enfrentamento, as estratégias positivas mais utilizadas foram “reavaliação positiva” (70%), “resolução de problemas” (65,7%) e “suporte social” (65,7%), e, as negativas mais utilizadas foram “autocontrole” (67,2%) e “afastamento” (62,9%). Embora tenham predominado GI 2 , limitações na realização das AVDs e restrição participação social, houve predomínio de estratégias de enfrentamento positivas, o que poderia ser justificado pelo tempo de convivência e evolução da doença, durante o processo de ressignificação da doença e das limitações adquiridas. A identificação das estratégias de enfrentamento em idosos pode auxiliar na investigação de fatores psicológicos e sociais que interferem no seu cotidiano e, com isso, todos os profissionais da saúde poderão planejar ações mais eficazes de prevenção e reabilitação em hanseníase, de posse a esses conhecimentos

The way in which the elderly face obstacles after diagnosis of leprosy (functional impairment, social participation in family, professional and community life) can guide the planning of the disability prevention actions and the rehabilitation program to which the elderly are inserted, according to individual needs. There for, the objective of this study is to evaluate the limitation of daily living activities (ADLs), social participation and coping strategies in elderly people affected by leprosy. This study included 70 elderly people affected by the disease, who were followed up at the Lauro de Souza Lima Institute, aged 60 or over. Five evaluation instruments were used: questionnaire with sociodemographic and clinical data, assessment of the degree of incapacity (GI), SALSA, Social Participation Scale and Coping Inventory. Descriptive statistical analysis was used to characterize the sample. There was a predominance of male patients (67,14%), multibacillary patients (87,14%), diagnosed over 20 years (42,85%), GI 2 (64,28%), elderly patients with some limitation in ADLs (91,43%), without significant restriction (51.43%) and with restrictions on social participation from mild to severe (48,57%). As for coping strategies, the most commonly used positive strategies were "positive reassessment" (70%), "problem solving" (65,7%) and "social support" (65,7%), were "self-control" (67,2%) and "remoteness" (62,9%). Although GI 2 predominated, limitations in performing ADLs and social participation restriction, there was a predominance of positive coping strategies, which could be justified by the time of coexistence and evolution of the disease, during the process of re-signification of the disease and acquired limitations. The identification of coping strategies in the elderly can help in the investigation of psychological and social factors that interfere with their daily life, and with this, all health professionals can plan more effective actions of prevention and rehabilitation in leprosy, in possession of this knowledge

Perceptions and experiences regarding the impact of race on the quality of healthcare in Southeast Brazil: a qualitative study

OBJECTIVE: To explore the impact of race on the quality of healthcare received by patients attending a primary care centre in Brazil. DESIGN: This was a qualitative study consisting of 19 semi-structured interviews conducted on patients from six racial groups (as defined in Brazil as white, yellow, brown, black and indigenous and one self-identified 'other' group). The interviews were analysed using thematic analysis. RESULTS: Four main themes were identified during analysis; factors affecting the access to healthcare, experiences regarding quality of healthcare, discrimination in healthcare and deep-rooted societal discrimination, which were categorised into a number of sub-themes. Within these themes, interviewees reported (1) experiences of racism in society towards the black racial group, (2) one personal perception and two observations of racial discrimination in healthcare, (3) perceived racial discrimination due to healthcare professional behaviour and (4) other factors, such as delays in appointments and long waiting times in health facilities were felt to impact access to care. CONCLUSION: The findings suggest that racial discrimination exists in Brazilian society but its direct impact on healthcare access was felt to be less obvious. Instead, organisational level factors were felt to contribute to difficulty accessing care. Interviewees perceived that racial discrimination may affect the quality of care, particularly for those designated as 'black'. Socio-economic factors were felt to influence discrimination in healthcare. The findings can help inform further studies and educational initiatives to help address discrimination and access to healthcare in Brazil.

Avaliação da qualidade de vida, grau de incapacidade e do desenho da figura humana em pacientes com neuropatias na hanseníase / Quality of life, physical disability, and the human figure drawing assessment of patients with neuropathies in leprosy

Na hanseníase, a presença de sintomas dermatoneurológicos com potencial evolução para incapacidades físicas pode comprometer a qualidade de vida (QV) e a imagem corporal do paciente. Objetivo: Avaliar as possíveis associações entre a QV, o Grau de Incapacidade (GI) e o Desenho da Figura Humana (DFH) em indivíduos com neuropatia hansênica. Método: Este estudo consiste em um estudo descritivo, com abordagem quanti-qualitativa. Foram utilizados quatro instrumentos de avaliação: Questionário sociodemográfico, NeuroQol (Neuropathy ­ Specific Quality of Life Questionnaire), DFH e Formulário de avaliação do GI. Foram incluídos pacientes com GI 1 ou 2 nos pés e idade igual ou superior a 18 anos. Resultados: Foram avaliados 100 indivíduos. Entre aqueles com GI 2, houve uma tendência à omissão do nariz (p=0,050) e DFH no tamanho pequeno (p=0,047). Houve associação entre o DFH e o domínio QV Sintomas difuso sensitivo-motores (p=0,035), sugerindo que a omissão dos pés no DFH pode representar perda da QV. Conclusão: Indivíduos com neuropatia hansênica apresentam QV boa à moderada. A omissão de segmentos do corpo pode indicar conflitos e sentimentos de insegurança. Há indícios de perda de autonomia quando o paciente omite ou corta os pés no DFH

In Leprosy, the presence of dermatoneurological symptoms with potential evolution to physical disabilities may influence the quality of life (QoL) and the patient's body image. Objective: To evaluate possible associations between the QoL, degree of disability (DoD) and human figure drawing (HFD) in individuals with leprosy neuropathy. Method: This is a descriptive study with a quanti-qualitative approach. Four evaluation instruments were used: a sociodemographic questionnaire, quality of life in neurological disorder questionnaire (Neuro-QoL), HFD and DoD evaluation form. Patients with DoD grades 1 or 2 of the feet and age equal to or greater than 18 were included in this study. Results: One hundred individuals were evaluated. Individuals with DoD grade 2 tended to omit the nose (p=0.050) and the HFD was small (p=0.047). An association was identified between the HFD and the QoL with dominance of diffuse sensory-motor symptoms (p=0.035) suggesting that omission of the feet in the HFD may represent a loss of QoL. Conclusion: Individuals with leprosy neuropathy have a good to moderate QoL but the omission of body segments may indicate conflicts and feelings of uncertainty. There is evidence of loss of autonomy when the subject omits or cuts off the feet in the HFD

Aspectos psicológicos relacionados ao indivíduo com fissura labiopalatal: uma revisão de literatura / Psychological aspects related to the individual with cleft lip and/or palate: a literature review

Introdução: as fissuras labiopalatais pertencem ao grupo de anomalias orofaciais, caracterizadas por uma fenda labial e/ou palatal na parte superior da boca, uni ou bilateral. Na literatura, as fissuras apresentam alta prevalência e podem interferir negativamente na vida dos pacientes e familiares, causando alterações estéticas, funcionais e psicossociais. Objetivo: pretendeu-se realizar um levantamento sobre quais aspectos psicológicos têm sido pesquisados neste tema, nos últimos cinco anos. Método: foi realizado um levantamento nas bases de dados SCIELO, LILACS e Periódicos CAPES para subsidiar uma revisão de literatura. Os descritores foram "Fissura labiopalatal", "Fissura labiopalatina", "Fissura labial", "Lábio leporino", "Fenda palatina", "Cleft Palate" e "Cleft Lip", todas associadas com os descritores "Psicologia" e "Psychology". Resultados e Discussão: houve predomínio de estudos com enfoque em aspectos psicológicos identitários, da família (ansiedade, stress, depressão e enfrentamento), desempenho escolar e qualidade de vida. Identificou-se carência de estudos brasileiros, pouco conhecimento sobre a doença e necessidade de maior inserção do psicólogo nas equipes multidisciplinares. Conclusão: conclui-se a relevância da participação dos cuidadores na recuperação deste indivíduo e suporte de enfrentamento diante às adversidades.

Introduction: the cleft cracks are within the group of orofacial anomalies being characterized by cleft lip and / or palate of the mouth at the top and can be unilateral or bilateral, having high prevalence. Studies show that cracks may negatively impact lives of patients and families, especially in relation to the aesthetic, functional and psychological changes. Objective: the aim was to conduct a survey on what aspects have been researched on people with cleft lip and palate in the last five years. Method: a survey was carried out in the SCIELO, LILACS and CAPES Periodic databases to support a literature review. The descriptors were "Cleft Palate", "Cleft Lip", "Cleft Lip", "Cleft Lip", "Cleft Palate", "Cleft Palate" and "Cleft Lip", all associated with the descriptors "Psychology" and "Psychology". Results and Discussion: the results showed a prevalence of studies focusing on psychological aspects of family (anxiety, stress, depression and coping), identity of patients, school performance and quality of life. It identified lack of Brazilian studies, little knowledge about the disease and the need for greater inclusion of psychologist in multidisciplinary teams. Conclusion: a multidisciplinary team is as important as the participation of caregivers to a satisfactory recovery and coping support.

Aspectos psicológicos relacionados ao indivíduo com fissura labiopalatal: uma revisão de literatura / Psychological aspects related to the individual with cleft lip and/or palate: a literature review

Introdução: as fissuras labiopalatais pertencem ao grupo de anomalias orofaciais, caracterizadas por uma fenda labial e/ou palatal na parte superior da boca, uni ou bilateral. Na literatura, as fissuras apresentam alta prevalência e podem interferir negativamente na vida dos pacientes e familiares, causando alterações estéticas, funcionais e psicossociais. Objetivo: pretendeu-se realizar um levantamento sobre quais aspectos psicológicos têm sido pesquisados neste tema, nos últimos cinco anos. Método: foi realizado um levantamento nas bases de dados SCIELO, LILACS e Periódicos CAPES para subsidiar uma revisão de literatura. Os descritores foram "Fissura labiopalatal", "Fissura labiopalatina", "Fissura labial", "Lábio leporino", "Fenda palatina", "Cleft Palate" e "Cleft Lip", todas associadas com os descritores "Psicologia" e "Psychology". Resultados e Discussão: houve predomínio de estudos com enfoque em aspectos psicológicos identitários, da família (ansiedade, stress, depressão e enfrentamento), desempenho escolar e qualidade de vida. Identificou-se carência de estudos brasileiros, pouco conhecimento sobre a doença e necessidade de maior inserção do psicólogo nas equipes multidisciplinares. Conclusão: conclui-se a relevância da participação dos cuidadores na recuperação deste indivíduo e suporte de enfrentamento diante às adversidades.

Introduction: the cleft cracks are within the group of orofacial anomalies being characterized by cleft lip and / or palate of the mouth at the top and can be unilateral or bilateral, having high prevalence. Studies show that cracks may negatively impact lives of patients and families, especially in relation to the aesthetic, functional and psychological changes. Objective: the aim was to conduct a survey on what aspects have been researched on people with cleft lip and palate in the last five years. Method: a survey was carried out in the SCIELO, LILACS and CAPES Periodic databases to support a literature review. The descriptors were "Cleft Palate", "Cleft Lip", "Cleft Lip", "Cleft Lip", "Cleft Palate", "Cleft Palate" and "Cleft Lip", all associated with the descriptors "Psychology" and "Psychology". Results and Discussion: the results showed a prevalence of studies focusing on psychological aspects of family (anxiety, stress, depression and coping), identity of patients, school performance and quality of life. It identified lack of Brazilian studies, little knowledge about the disease and the need for greater inclusion of psychologist in multidisciplinary teams. Conclusion: a multidisciplinary team is as important as the participation of caregivers to a satisfactory recovery and coping support.

Functioning and disability in leprosy

This study has been carried out to investigate the frequency of musculoskeletal symptoms in people affected by leprosy and correlate this to their functional capacity to perform daily living and working activities and to their degree of disability. This cross-sectional study was performed on 100 clients who answered a questionnaire on personal and clinical data, the Nordic Musculoskeletal (QNSO), and the shoulder, arm and hand dysfunction (DASH) questionnaires. The mean age was 53.63 years and there was a predominance of men (67%), low education (53%), and multibacillary disease (84%). Physical impairment affected 95% of respondents and 92% indicated pain and/or paresthesia in the arms that interfered in functional capacity.Respondents with musculoskeletal symptoms have more difficulty to perform daily living and working activities compared to those without musculoskeletal symptoms (p-value<0.05). The presence of physical disabilities was not associated with difficulties to perform daily living (p-value=0.29) and labor activities (p-value=0.87). The majority of patients experienced pain and/or paresthesia of the arms, and this was associated with difficulties to perform daily living and working activities. However, the presence of physical disability does not seem to cause major impediments or limitations to perform these activities.

Factors contributing to the delay in diagnosis and continued transmission of leprosy in Brazil - an explorative, quantitative, questionnaire based study

BACKGROUND: Leprosy is a leading cause of preventable disability worldwide. Delay in diagnosis of patients augments the transmission of infection, and allows progression of disease and more severe disability. Delays in diagnosis greater than ten years have been reported in Brazil. To reduce this delay, it is important to identify factors that hinder patients from presenting to doctors, and those that delay doctors from diagnosing patients once they have presented. This study aimed to explore factors associated with the delayed diagnosis of leprosy in Brazil. METHODOLOGY/ PRINCIPAL FINDINGS: This is an exploratory study using a self-constructed questionnaire delivered to patients attending three leprosy referral clinics across three states in Brazil. Data were analysed to determine associations between variables and the time taken for participants to present to the health-service, and between variables and the time taken for doctors to diagnose participants once they had presented. Participants who suspected they had leprosy but feared community isolation were 10 times more likely to wait longer before consulting a doctor for their symptoms (OR 10.37, 95% CI 2.18-49.45, p = 0.003). Participants who thought their symptoms were not serious had a threefold greater chance of waiting longer before consulting than those who did (OR 3.114, 95% CI 1.235-7.856, p = 0.016). Forty-two point six per cent of participants reported initially receiving a diagnosis besides leprosy. These had a three times greater chance of receiving a later diagnosis of leprosy compared to those not misdiagnosed or not given a diagnosis (OR 2.867, 95% CI 1.288-6.384, p = 0.010). CONCLUSIONS/ SIGNIFICANCE: This study implies a need for patient education regarding leprosy symptoms and the reduction of stigma to encourage patients to present. The high rate of misdiagnosis reported suggests a need to increase clinician suspicion of leprosy. Further education regarding disease symptoms in medical school curriculums may be advisable.

The patient perspective of the diagnostic process for leprosy in Brazil. An exploratory study.

OBJECTIVES: To explore the patient experience of being diagnosed with leprosy and the support provided during this process in selected populations in Brazil. To understand the information needs of patients during diagnosis. To identify characteristics of patients with different diagnostic experiences. To add to the evidence base used for improving the diagnostic process for leprosy patients. DESIGN: A self-constructed questionnaire delivered to 116 participants, at three leprosy health centres, across three states in Brazil. RESULTS: Most participants felt under-informed during diagnosis; 68.1% wanted more information about leprosy. Nearly one-quarter of patients reported feeling unable to ask questions at diagnosis. Almost half of patients reported being worried about treatment, yet 43.3% reported not having the chance to talk about their concerns. Younger participants were significantly more likely to report feeling unable to ask questions and talk about their worries. The majority of participants (59.5%) reported not being given any written information to take away with them. 36.5% reported not being given advice about how to reduce the chance of other family members becoming ill with leprosy. Older males were most likely to be given this advice despite females being in most contact with family members in most cultures. CONCLUSIONS: It is recommended that patients are encouraged to ask questions and invited to talk about their concerns, particularly younger patients. It is recommended that a simple information leaflet be provided to all patients. These suggestions may require some financial input, more staff and longer consultations but should significantly improve the diagnostic process.

Estratégias de enfrentamento utilizadas pelo paciente com deficiências físicas na hanseníase / Coping strategies used by the patient with physical disabilities in leprosy

O conhecimento das estratégias de coping (enfrentamento) usado nessas condições auxilia o indivíduo a lidar com as limitações decorrentes da hanseníase. O objetivo deste estudo foi avaliar tais estratégias utilizadas pelos referidos pacientes, bem como verificar as dificuldades na realização das atividades de vida diária (AVDs) e das atividades instrumentais de vida diária (AIVDs). Trata-se de um estudo descritivo, com 30 pacientes com hanseníase avaliados no Instituto Lauro de Souza Lima/Bauru/SP. Foram utilizados na coleta de dados: um questionário sobre os dados sociodemográficos, aspectos clínicos da doença e a independência funcional na execução das AVDs e AIVDs; checklist relacionado ao tipo de deficiência física visível encontrada no paciente; e o Inventário de Estratégias de Coping de Folkman e Lazarus, adaptado para o português. A idade média dos pacientes foi de 55 anos. Houve predomínio dos pacientes do gênero masculino (60%), com Ensino Fundamental I (70%), residentes com as famílias (76,7%) e afastados do trabalho (90%). A maioria deles era multibacilar (96,7%) e o tratamento poliquimioterapia havia sido concluído (83,3%). As dificuldades funcionais mais frequentes (80%) nas AVDs foram: locomoverse, vestir­se, realizar transferência e higiene pessoal; e, nas AIVDs foram: administrar o ambiente doméstico, cuidar da casa e da roupa. O uso de estratégias positivas, como a resolução de problemas e suporte social está relacionado à boa adaptação biopsicossocial do indivíduo, considerando-se que a maioria não utilizava o confronto. Entretanto, uma parcela expressiva de pacientes utilizava as estratégias de autocontrole, fuga e esquiva.

The knowledge of the coping strategies used in these conditions helps the individual to deal with the limitations caused by leprosy. The aim of this study was to evaluate these strategies used by patients, weel with check the difficulties in to performe the daily living activities (DLA) and daily living instrumental activities (DLIA). This is a descriptive study with 30 patients with leprosy patients evaluated at Lauro de Souza Lima Institute/Bauru/SP. It was used to collect the data, a questionnaire about sociodemographic data, clinical aspects of the disease and the functional independence in the achievement of DLA and DLIA; a checklist related to the visible physical disability found in patients; an Inventory of Coping Strategies of Folkman and Lazarus, adapted to the Portuguese language. The middle age of patients was 55 years old. There was a predominance of male patients (60%), with Elementary school (70%), living with their families (76.7%) and off to the work (90%). Most of the patients were multibacillary (96.7%) and the multidrug therapy had been completed (83.3%). The most frequent functional difficulties in DLA (80%) were: getting yourself, put on clothes, to transfer and personal hygiene; and in DLIA were: manage the home environment, caring for the home and clothe. The use of positive strategies, such as problem solving and social support is related to a good biopsychosocial adaptation of the individual, considering that the most of the individual do did not use the confrontation. However, a significant portion of patients used the self-control strategies, escape and avoidance.

O impacto das relações familiares em crianças com vitiligo ou alopecia areata / The impact of family relationships in children with vitiligo ou alopecia areata

Este estudo consistiu em investigar a ocorrência de eventos traumáticos no contexto familiar e analisar como as relações afetivas se estabelecem entre pais e filhos diagnosticados com alopecia areata ou vitiligo. Esse estudo foi realizado no Instituto Lauro de Souza Lima, Bauru, SP, e baseou-se no método clínico de investigação e de natureza descritivo/interpretativa, considerando a espontaneidade no modo de falar dos entrevistados (pais), estimulando o emergir de conteúdos presentes no processo de adoecimento de seus filhos. Foi aplicada a técnica da entrevista semiestruturada, utilizando-se um roteiro de perguntas para os pais das crianças que tinham entre 5 e 12 anos. As crianças estavam em tratamento dermatológico e haviam sido encaminhadas para avaliação psicológica, sendo que duas tinham alopecia areata e cinco vitiligo. As respostas produzidas pelos pais apresentaram características peculiares e conteúdos que foram comuns entre eles, sendo organizadas em eixos temáticos. Os eventos traumáticos identificados neste estudo consistiram em separação conjugal, disputa entre irmãos, sentimento de rejeição materno, afastamento dos pais ou abandono materno, perdas afetivas e materiais. Verificou-se que a maioria dos casais não havia planejado a gravidez, as crianças sofreram privação afetiva desde o nascimento, caracterizada por dificuldades dos pais em expressar afeto, rejeição materna e carência afetiva materna e/ou paterna, sugerindo que os eventos traumáticos podem estar relacionados à manifestação dessas dermatoses...

Associação entre sintomas depressivos, trabalho e grau de incapacidade na hanseníase / Relationship between depression, work, and grade of impairment in leprosy

A depressão é o transtorno psiquiátrico mais comum na hanseníase e com alto índice de sintomas depressivos. Objetivo: Verificar a frequência dos sintomas depressivos e sua relação com o grau de incapacidade (GI) da OMS e variáveis sociodemográficas. Método: Aplicou-se um questionário, contendo aspectos sociodemográficos, clínicos e o GI. Foi aplicada a escala original do BDI para identificar a frequência dos sintomas depressivos (21 itens) e a subescala cognitiva chamada BDI-Short Form - BDI-SF (1-13 itens), recomendada para avaliar sintomas depressivos em indivíduos com diagnóstico de alguma patologia. Foi utilizada análise estatística descritiva, com distribuição de frequência para a caracterização da casuística e para o cruzamento das variáveis, foi utilizado oTeste Chi-square-corrected (Yates), considerando resultados significantes valor - p < 0,05. Resultados: Foram avaliados 130 pacientes que tem ou tiveram hanseníase. A idade média dos pacientes foi de 49,64 (SD 14,04).Houve predomínio do sexo masculino (64,6%), dos que vivem com familiares (87,7%), com ensino fundamental incompleto (66,2%), união civil estável (61,6%), não trabalham (75,4%) e recebem aposentadoria ou auxíliosaúde (63,9%). Em relação aos aspectos clínicos, 94,5% são multibacilares, 74,6% concluíram a poliquimioterapia e a maioria apresenta perda da sensibilidade protetora e/ou deformidades (31,5% grau 1 e 37% grau 2). Dentre os casos avaliados 43,1% apresentou sintomas depressivos de intensidade moderada a grave. Não houve correlação significativa entre BDI-SF e GI (valor - p = 0,950), mas, ?não trabalhar? associou-se com sintomas depressivos (BDI-SF) (valor - p = < 0,05). Preocupação somática foi o sintoma mais frequente (80,7%), seguido de dificuldade no trabalho (78,5%), irritabilidade (68,5%), fadiga (67,7%), auto-acusação (62,3%) e choro fácil (60%). Conclusão: Conclui-se que sintomas depressivos moderados e graves acometeram 43,1% dos casos avaliados,independentemente de ter ou não deficiências físicas (GI 1 e 2). As pessoas que não trabalhavam foram mais acometidas por sintomas depressivos em comparação aos que exerciam alguma atividade profissional.

Depression is the most common psychiatric disorder in leprosy and with high depressive symptoms. Objective: The aim of this study was to determine the prevalence and frequency of depressive symptoms andtheir relationship to WHO impairment grading (IG), and sociodemographic variables. Method: We applied a survey containing sociodemographic, clinical aspects and IG. The original scale of the BDI was applied to identifythe frequency of depressive symptoms (21 items), as well as the cognitive subscale BDI-Short Form-BDI-SF (items 1-13), recommended to assess depressive symptoms in individuals with defined pathologies. Descriptivestatistical analysis was used, with the frequency distribution to characterize the sample, and to the intersection of the variables, the Chi-square Test-corrected (Yates) was applied, considering significant results p - value < 0.05. Results: 130 patients who have or have had leprosy were evaluated. The mean age of patients was 49.64 (SD = 14.04). There was a predominance of males (64.6%), those living with family (87.7%), with incomplete primary education (66.2%), stable civil union (61.6%), which did not work (75.4%) and receive retirement or health aid (63.9%). Regarding clinical aspects, 94.5% were multibacillary, 74.6% had multidrug therapy and most have loss of protective sensation and/or deformities (31.5% IG1; 37% IG2). Among the cases evaluated, 43.1% had depressive symptoms of moderate to severe intensity. There was no significant correlation between BDI-SF and IG (p - value = 0.950). However, the individuals without an occupation or job (?which did not work?) were associated with depressive symptoms (BDI-FS; p - value < 0.05). Somatic apprehension was the most frequent symptom (80.7%), followed by difficulty with work (78.5%), irritability (68.5%), fatigue (67.7%), self-blame (62.3%)and tearfulness (60%). Conclusion: It is concluded that moderate and severe depressive symptoms assaulted 43.1% of the cases evaluated, regardless of whether or not physical disabilities (IG1 and 2). Individuals who did not work were the most affected by depressive symptoms compared to those who had some sort of occupation.

Declínio cognitivo, independência funcional e sintomas depressivos em idosos com hanseníase / Cognitive impairment, functional independence and depressive symptoms in elderly people with prior history of leprosy

Os problemas decorrentes da hanseníase podem causar transtornos psiquiátricos e comprometer o desempenho do indivíduo na execução das atividades cotidianas, especialmente no idoso. O objetivo deste estudo foi verificar as associações entre funcionabilidade, sintomas depressivos e aspectos cognitivos em idosos com história pregressa de hanseníase. Trata-se de estudo descritivo transversal. Foram aplicados os seguintes instrumentos de avaliação: Anamnese, Grau de Incapacidades da Organização Mundial da Saúde (GI-OMS), Questionário de Atividades Funcionais de Pfeffer, Escala de Depressão Geriátrica-15, Mini-Exame do Estado Mental e o Índice de Barthel. Quanto aos resultados, foram avaliados 90 idosos que tiveram a doença e a maioria pertencia ao gênero masculino (75,6%) e com baixa escolaridade (42,2%); eram casados/união consensual (58,9%) e apresentaram GI-OMS 1 ou 2 (83,3%). A idade variou entre 60 e 92 anos e a média foi 68,9 (DP7,3). Quanto aos problemas de saúde, houve um predomínio das doenças cardíacas (42,2%). A maioria deles apresentou independência funcional na execução das atividades de vida diária-AVDs (80%) e nas atividades instrumentais de vida diárias-AIVDs (83,3%); 30% apresentou sintomas depressivos e 52,2%, declínio cognitivo. Houve associação significativa entre sintomas depressivos e AVDs (p=0,048), sintomas depressivos e AIVDs (p=0,0111). Conclui-se que a maior parte dos idosos apresentou deficiências físicas, declínio cognitivo, e essas condições não interferiram significativamente na manifestação de sintomas depressivos e na independência funcional. A maioria dos idosos que apresentou independência funcional tinha menor chance de desenvolver sintomas depressivos, embora uma parcela significativa desta casuística demonstrou sintomas depressivos.

The problems caused by leprosy can cause psychiatric disorders and compromise the individual’s performance in execution of daily activities, especially in the aged. The aim of this study was to investigate possible associations between functionality, depressive symptoms and cognitive in aged with history of leprosy. This is a cross-sectional descriptive study. They were applied the following assessment instruments: Anamnesis, “World Health Organization leprosy disability grading system” (WHO-DG), Pfeffer’s Functional Activities Questionnaire, 15-item Geriatric Depression Scale, Mini-Mental State Examination and the Barthel Index. They were evaluated 90 aged who had the disease and the most of the patients were male (75.6%) and had low education (42.2%); married or live with partner (58.9%) and classified as WHO-DG 1 or 2 (83.3%). The ages ranged from 60 to 92 years, with a mean age of 68.9 (SD: 7.3). About the health problems, there was a predominance of heart disease (42.2%). The most of them had functional independence in the performance of activities of daily living (ADL) (80%) and in instrumental activities of daily living I (ADL) (83.3%); 30% had depressive symptoms and 52,2% cognitive decline. There was a significant association between depressive symptoms and ADL (p=0.48), depressive symptoms and IADL (p=0.111). It follows that the most aged patients had physical disabilities, cognitive decline, and these conditions did not influence significantly in the manifestation of depressive symptoms and functional independence. The most of seniors patients showed funcional independence had lower chance of developing depressive symptoms, although a significant portion of this subjects, showed depressive symptoms.

Avaliação da prática do autocuidado domiciliar em hanseníase / Evaluation of household self-care pratice in leprosy

O objetivo deste estudo foi verificar se indivíduos acometidos pela hanseníase realizavam adequadamente a prática do autocuidado e possíveis fatores interferentes.Trata-se de um estudo documental, observacional e descritivo de inquérito domiciliar. A amostra abrangeu todos os onze pacientes detectados durante um ano, em um município com 120.000 habitantes no interior do estado de SP. Foram coletados os dados clínicos e cuidados prescritos dos prontuários. A entrevista e a observação das práticas de autocuidado foram realizadas no domicílio. Foi solicitado aos participantes para identificarem os problemas decorrentes da doença, demonstrarem quais, como e quando faziam o autocuidado, o qual foi classificado como:realizado adequadamente, parcialmente ou não realizado.O estudo foi aprovado pelo Comitê de Ética em Pesquisa (Nº 06/2007). Dos cinco que apresentavam grau 2 de incapacidades, três realizavam parcialmente e dois não realizavam o autocuidado. Demonstraram dificuldades em aceitar o comprometimento físico e de incorporar as práticas diárias por fatores multicausal,o mesmo aconteceu com aqueles com grau 1. A necessidade da manutenção do trabalho laboral,com exposição a traumas físicos e em período integral,pode levar a ocultação da doença, seja para si ou para a sociedade, e dificultar as ações de autocuidado,tanto pela falta de tempo quanto pela não aceitação da doença. O modelo paternalista, fragmentador e mecânico da assistência em saúde, sugere uma tendência à dependência dos serviços institucionais,desconstruindo a autonomia e a responsabilidade individual sobre seu estado de saúde, desmotivando as ações do autocuidado domiciliar.

This study aimed at determining whether individuals affected by leprosy properly performed self-care practice and its possible interfering factors. It is a documental, observational and descriptive study of household survey. The sample was composed of eleven patients evaluated during one year in a municipality with 120.000 inhabitants in SP state. Clinical data and prescription care records were obtained from the medical files. The interview and observation of self-care practices were held at home.The participants were asked to identify the problems resulting from the disease, to demonstrate which, how and when they performed the necessary self-care, which was classified as: held properly, held partially or not performed. The study was approved by the Committee of Ethics in Research (Nº 06/2007). Among the five individuals who presented grade 2 disability, three partially performed and two did not perform self-care. They demonstrated difficulties in accepting the physical involvement and in incorporating the daily practices for multiple causes factors, so didthose individuals with grade 1 disability. The need of maintaining labor activities, with full-time exposure to physical trauma, can lead to concealment of the disease, either for them selves or for the society. It may also hinder self-care actions, either by lack of time or for not accepting the disease. The paternalistic, fragmenting and mechanical model of health care leads to a tendency of patients to rely on institutional services, deconstructing the autonomy and individual responsibility for their general health status,discouraging self-care actions at home.

WHO disability grade does not influence physical activity in Brazilian leprosy patients.

Disability caused by leprosy may be associated with stigma. The aim of this work is to describe the degree of disability, quality of life and level of physical activity of individuals with leprosy and to identify possible correlations between these factors. Ninety-seven patients from two referral centres were studied. A complete medical history was taken and the World Health Organization degree of physical disability classification (WHO-DG), the International Physical Activity Questionnaire (IPAQ) and the Medical Outcome Study 36-item Short-form health Survey (SF36) were applied. The mean age of patients was 51 +/- 14.9 years old; participants were predominantly men, married, unemployed, had concluded treatment and had had lepromatous leprosy. The WHO-DG and the level of physical activity (P-value = 0.36) were not correlated. The WHO-DG showed that 72.2% of patients had disabilities, 37.1% of whom performed vigorous physical activities. No significant association was observed between the WHO-DG and the domains of the QoL SF-36 except for functional capacity (P-value = 0.02); the physical capacity is generally 'very good' when individuals have no disabilities and 'bad' with severe disabilities. In conclusion, the WHO-DG of leprosy patients does not affect the level of physica activities or quality of life except functional capacity. There is no significan association between physical activities and quality of life in these individuals.

Variabilidade de diagnósticos psicológicos frente à avaliação dermatológica da escoriação psicogênica / Variability of psychological diagnosis in patients with psychogenic excoriation

Dentre as dermatoses psiquiátricas, a escoriação psicogênica caracteriza-se pela confissão do paciente de provocar as lesões, sem apresentar doença dermatológica de base. Verificou-se que o assunto tem sido pouco abordado na literatura, com enfoque nos diagnósticos psicológicos. Dados epidemiológicos indicaram uma prevalência de 2 a 3 por cento, em relação à população geral, 2 por cento, entre pacientes dermatológicos, e 9 por cento, em pacientes com prurido, com predomínio significativo em mulheres. O artigo relata três casos brasileiros e discute o plano terapêutico constituído de equipe interdisciplinar, permitindo indicações psicoterapêuticas e medicamentosas específicas a cada caso.

Among psychiatric dermatoses, the psychogenic excoriation is characterized by patient's confession to provoking the lesions, without presenting any dermatological underlying pathology. This topic has been rarely approached in the literature, focusing on the diversity of psychological diagnoses. Epidemiological data indicated that prevalence varies from 2 to 3 percent in the general population, 2 percent among dermatological patients and 9 percent in patients with itching, with significant prevalence in women. The present article report three Brazilian cases and discusses the therapeutic plan based on multidisciplinary teamwork,including indications of psychotherapy and specific drug therapy to each case.