RESUMEN

INTRODUCTION: Almost one third of people affected by leprosy in Colombia suffer from disability, which often results from delayed diagnosis and treatment. We aimed to explore the experience of people affected by leprosy during the process of diagnosis and treatment and if and how this experience was influenced by peers. METHODS: A qualitative study using body map stories was conducted from October 2019 to February 2020 in Colombia. Adult people affected by leprosy were recruited through patient associations in different cities. We conducted three sessions with an average duration of 2-3 h per participant, during which the participants created a painted map of their body and chose symbols to represent their experience, while being engaged in an informal interview. The sessions were audio recorded, transcribed verbatim and analyzed thematically by an interdisciplinary team, consisting of physicians, social workers and a person affected by leprosy. RESULTS: The 17 study participants (11 female) were aged 20 to 70 years. Leprosy-related manifestations ranged from no to advanced disability. Some participants were active members of associations for people affected by leprosy. Three main themes were identified during analysis: (1) A long pathway to diagnosis, (2) Therapy as a double-edged sword and (3) The influence of other people affected by leprosy. The participants described an often years-long process until being diagnosed, which was marked by insecurities, repeated misdiagnosis, and worsening mental and physical health. Delayed diagnosis was related to late health care seeking, but also to inadequate health communication, lack of leprosy-related knowledge and negligence among health care workers. A high desire to cure motivated the participants to take their medication rigorously, despite the high treatment burden. Support from peers, either within the own social environment or provided from associations, contributed to a faster diagnosis and increased therapy adherence. Peers helped to recognize the symptoms, urged patients to seek care, recommended physicians with leprosy-related knowledge and provided a realistic example of both disease severity and curability. CONCLUSION: People affected by leprosy experience a significant burden during the process of diagnosis and treatment. Involving well-trained peers could foster early diagnosis, treatment compliance and prevention of disability.

Asunto(s)

RESUMEN

Este estudo tem por objetivo avaliar a evolução do grau de incapacidade física e do escore olhos, mãos e pés, do diagnóstico à alta medicamentosa, segundo as variáveis sociodemográficas e clínicas, em pacientes diagnosticados com hanseníase. Trata-se de estudo transversal, baseado na análise de 71 pacientes com diagnóstico de hanseníase, acompanhados no Hospital Eduardo de Menezes, centro de referência em Belo Horizonte, Minas Gerais, Brasil, entre janeiro de 2017 a dezembro de 2020. Foi observado predomínio do sexo feminino (53,5%), média de idade de 46 anos, sendo a maioria procedente de outros municípios do interior de Minas Gerais (54,9%). A forma clínica mais frequente foi a dimorfa (64,8%), classificação operacional multibacilar (84,5%). O grau de incapacidade física 0 foi o mais prevalente no diagnóstico (56,5%) e na alta (53,1%), e em relação ao escore olhos, mãos e pés, houve variação entre 0 e 10 no diagnóstico e entre 0 e 8 na alta. Pelo teste de McNemar foi observado que dentre os pacientes que apresentavam algum grau de incapacidade física no momento do diagnóstico, 30,8% apresentaram ausência de incapacidade na alta. Ao comparar a evolução do grau de incapacidade física de paucibacilares e multibacilares no momento do diagnóstico e da alta, houve manutenção em 59,3% e melhora em 17,2% dos pacientes. Os dados apresentados indicam que muitos pacientes foram tratados tardiamente já apresentando as formas graves e com sequelas, já que o estudo foi desenvolvido em um centro de referência, que atende casos mais complexos e com complicações já instaladas. Os dados sugerem que pacientes assistidos que realizam o tratamento com poliquimioterapia podem ter melhora das incapacidades já instaladas. O mesmo ocorreu com o escore olhos, mãos e pés, que ao final do tratamento instituído houve melhora se comparado com a admissão.(AU)

This study aims to evaluate the evolution of the degree of physical disability and the eye, hand and foot score, from diagnosis to medication discharge, according to sociodemographic and clinical variables, in patients diagnosed with leprosy. This is a cross-sectional study, based on the analysis of 71 patients diagnosed with leprosy, followed by Hospital Eduardo de Menezes, a reference center in Belo Horizonte, Minas Gerais, Brazil, between January 2017 and December 2020. There was a predominance of females (53.5%), average age of 46 years old, the majority coming from other municipalities in the interior of Minas Gerais (54.9%). The most frequent clinical form was borderline (64.8%), multibacillary operational classification (84.5%). Degree of physical disability 0 was the most prevalent at diagnosis (56.5%) and at discharge (53.1%); in relation to the eye, hand and foot score, there was variation between 0 and 10 at diagnosis and between 0 and 8 at discharge. By the McNemar test, it was observed that of the patients who had degree of physical disability at the time of diagnosis, 30.8% had no disability at discharge. When comparing the evolution of the GIF in paucibacillary and multibacillary patients at the time of diagnosis and discharge, there was maintenance in 59.3% and improvement in 17.2% of the patients. The presented data indicates that many patients were treated late, already presenting severe forms and with sequelae, since the study was carried out in a reference center, which treats cases with complications already installed and more complex cases. The data suggest that assisted patients undergoing treatment with multidrug therapy may experience improvement in disabilities already established. The same occurred with eye, hand and foot score, at the end of the established treatment there was an improvement compared to admission.(AU)

Asunto(s)

RESUMEN

BACKGROUND: Health promotion programs could prevent and delay frailty and functional decline. However, in practice, the planning and establishment of such a program is a challenge for health care providers. We report an experimental model of screening and management for frail elderly conducted in Cugnaux, city of 16,638 inhabitants in France, by the Toulouse Gerontopole and the social care service of the Cugnaux City Hall. METHODS: A frailty screening self-administered questionnaire (FiND questionnaire) was sent to community-dwelling residents of 70 years old and over of Cugnaux. The completed questionnaires were analyzed and the subjects were classed into three groups: robust, frail, mobility disability, based on their score. Frail subjects and those with mobility disability invited to undergo a frailty assessment in the premises of the town hall realized by a nurse in order to identify the causes of their frailty and propose them a personalized intervention plan (PIP). RESULTS: The FiND questionnaire was sent to the residents of Cugnaux of 70 years old and over (n=2,003). After two mailings, 860 (42.9%) completed questionnaires were received. Mean age of the responders was 79.0 ± 6.2 years and 59.6% women (n= 511). According to the questionnaires analysis, 393 (45.7%) were robust, 212 (24.6%) frail, 240 (27.9%) had a mobility disability and 15 (1.7%) could not be classified due to missing data. 589 (68.5%) subjects accepted to be contacted by the Gerontopole nurse. The assessment by the nurse was proposed to frail subjects and those with mobility disability (n=313). Until 31 December 2016, 136 patients have been evaluated. The mean age was 80.1±5.4 and most patients were women (69.9%). The mean ADL score was 5.8±0.5 and the IADL showed a mean score of 6.9±1.7. According to Fried definition of frailty, 76 patients (55.9%) were pre-frail, and 35 (25.7%) frail. Concerning the frailty domains identified, 75 patients (55.1%) showed the alteration of physical performance, 70 (51.5%) thymic disorders and 46 (33.8%) sensory disorders. Preventive interventions proposed in the PIP were mostly physical interventions (86.8%, n=118) followed by cognitive (61.8%, n=84) and nutritional (39.7%, n=54) interventions. DISCUSSION: This project shows the feasibility to implement a care model in the community. It permitted a large identification of frail elderly people in the city population, insuring their assessment and clinical follow up to maintain their capacities and referring them to social services.

Asunto(s)

RESUMEN

Objective To analyze the main causes of physical disability in adults in Guangdong province in China, and to provide prevention and treatment strategies. Methods Data on Guangdong from China's Second Na-tional Sample Survey on disability in 2006 were carefully collected. Physical disability was categorized according to different causes. In each category or group, multiple factors including the severity, distribution in urban or rural are-as, and the age of onset were analyzed with appropriate statistical methods. Prevention and treatment were then for-mulated based on the data. Results The severity of disability, distribution in rural and urban areas, and the age of onset were significantly different in different groups. The main cause was cerebral vascular diseases (16.7%). The incidence of physical disability was much higher in rural areas than that in urban areas (31.8% vs 68.2% ) except for brain trauma and toxication. The main cause for physical disability among young and middle-aged people was poly-myelitis (17.1% and 14.8% respectively) ; in old people it was osteoarthrosis (35.7%). Conclusions In order to lower the incidence of physical disability and to alleviate its severity, more work should be done in the prevention and treatment of cerebral vascular disease, spinal injury, cerebral palsy, polymyelitis and osteoarthrosis. In addition more financial and technical support is needed in rural areas.