Evaluation of activity limitation and social participation, and the effects of reconstructive surgery in people with disability due to leprosy: a prospective cohort study.

PURPOSE: To assess how activity limitation and social participation of individuals with leprosy-related disability change over time, and to quantify the effect of reconstructive surgery. METHOD: Individuals with disability due to leprosy who accepted invitations for assessment at a leprosy clinic between March and July 2007 were interviewed using the SALSA Scale (measuring activity limitation) and the Participation Scale (assessing social participation). All participants were offered reconstructive surgery. Follow-up interviews were done 1 year after the first interview or 1 year after surgery. The main outcomes were changes in SALSA score and Participation score. We used analysis of variance to identify the effects of independent factors on mean SALSA and Participation scores. RESULTS: We interviewed 222 participants, 15 of whom took up the offer of surgery and 207 who did not. Comparison of SALSA Scale scores at baseline and 1 year revealed that activity limitation did not significantly change over time in individuals who declined surgery; however, participants who had surgery showed a significant improvement at 1 year (p < 0.001). Social participation improved over time in both groups, but the difference was significant only in the non-surgery group (p < 0.001). CONCLUSIONS: The findings suggest that reconstructive surgery has beneficial effects on functioning. Evaluation of the need for, and effect of, surgery in larger studies is recommended.

Decentralisation of leprosy control activities in the municipality of Betim, Minas Gerais State, Brazil.

OBJECTIVES: The present study aims at evaluating the decentralisation of the leprosy control activities in the municipality of Betim, Minas Gerais, Brazil. DESIGN: A quantitative study was undertaken using data from SINAN (Sistema Nacional de Agravos de Notificação) and patient records. The study included 435 new cases registered and living in Betim. The pre (1995-2000) and post (2001-2005) decentralisation periods were compared using the chi-square test. Besides this, units which already had leprosy control activities were compared to those which implemented them from 2001 on. RESULTS: There was a decrease in the percentage of cases diagnosed with deformities after decentralisation, as well as an increase in the number of cases detected through self-reporting. More patients were notified closer to home after decentralisation. The selected indicators did not show any difference between the quality of assistance regarding prevention of disabilities when comparing health units which already had leprosy activities to those which implemented them from 2001 onwards. CONCLUSIONS: Decentralisation, in Betim, did not lead to an increase in the number of cases, but led to earlier diagnosis and patients being treated closer to their homes. The study did not show evidence of decrease in the quality of care after decentralisation.

Factors which influenced the decentralisation of leprosy control activities in the municipality of Betim, Minas Gerais State, Brazil.

UNLABELLED: This is the second part of a study conducted to evaluate the decentralisation of leprosy control activities in Betim, Minas Gerais, Brazil. OBJECTIVES: To identify factors which hindered or facilitated the decentralisation of leprosy control activities in Betim municipality and to evaluate the quality of care after decentralisation. DESIGN: The study comprised a 2 1/2 hour focus group discussion with 10 professionals who participated in the decentralisation process. The group included health service managers and professionals from different backgrounds and types of health services involved in leprosy control. RESULTS: The following factors were identified as having hindered decentralisation: staff attitude, lack of staff training, stigma and health system organisation and management. The facilitating factors were: staff training in Betim, existence of a Municipal Reference Centre. The group considered that quality of care improved after decentralisation. CONCLUSIONS: The problems identified cannot be addressed with simple, immediate solutions. They require coordination with partners both within and outside the municipal health secretariat. Ongoing staff training is essential and should be done using existing expertise in the municipality. An easily accessible reference centre is important as a place for training and backup for newly trained professionals.

Test-retest reliability of the Screening Activity Limitation and Safety Awareness (SALSA) scale in North-West Nigeria.

INTRODUCTION: The present study examines the inter-tester and intra-tester reliability of the recently developed scale for Screening of Activity Limitation and Safety Awareness (SALSA) in North-West Nigeria. The scale was developed through collaborative research in five countries around the world. METHODOLOGY: One hundred and three people affected by leprosy from three states in North-West Nigeria participated in the study. A Hausa translation of the 20-item SALSA questionnaire was used by four trained health staff to interview the participants. Seventy-five paired interviews were conducted where the second interview was administered by a different interviewer from the first at intervals of 4-76 days (median 52). Twenty-eight paired interviews were conducted, both by the same interviewer, at intervals of 52-71 days (median 63). RESULTS: Inter-tester reliability: All 20 items had Kappa's ranging from 0.45-0.8; 15 items had Kappa's > 0.6; 8 items had Kappa's > 0.7. Intra-tester reliability: All 20 items had Kappa's ranging from 0.51-1; 15 items had Kappa's > 0.6; 12 items had Kappa's > 0.7. For inter-tester reliability, the first interview had a mean SALSA score of 36.5 (95% CI = 34.96-38.05). The second interview had a mean of 35.02 (95% CI = 35.01-37.99). For intra-tester reliability, the mean SALSA scores of first and second interviews were 27.36 (95% CI = 24.36-30.36) and 26.68 (95% CI = 23.93-29.43), respectively. CONCLUSIONS: The Hausa translation of SALSA has an acceptable reliability in Nigeria provided the interviewers are well trained.

Evaluation of simplified tests for the diagnosis of nerve function impairment in leprosy: the Sensory Motor Screening (SMS) study.

OBJECTIVE: Rapid and simple tests for diagnosing nerve function impairment (NFI) in leprosy are required in integrated settings. We examined whether simplified tests performed by newly trained general health workers (GHWs) have comparable diagnostic accuracy to the reference test conducted by experienced physiotherapists. DESIGN: This multi-centre study from India and Bangladesh evaluated three simplified tests named: ILEP Learning Guide Two (M2), Indian dance (M3), and a questionnaire (M4) in 408 people affected by leprosy. Sensitivity (Se) and specificity (Sp) of the three tests were calculated using the full assessment (M1) as reference. Se and Sp were calculated at both whole body and individual nerve levels: whether any NFI and if single NFI (voluntary muscle testing of lid gap, eye closure, little finger out, thumb up and foot up, sensory testing of hands and of feet) was present. RESULTS: M2 had 83% Se and 69% Sp, M3 had 76% Se and 84% Sp and M4 had 85% Se and 46% Sp in diagnosing any NFI. At the level of single NFI, M2 was most or similarly accurate in diagnosing single NFIs with highest prevalence (ST feet, ST hands, little finger out, thumb up), compared to M3 and M4. CONCLUSIONS: ILEP Learning Guide Two (M2) and Indian dance (M3) were found to be the most accurate simplified tests for diagnosing the presence of NFI compared to the reference. M2 was the most useful test, because of greatest accuracy for most of the common types of NFI and inclusion of sensory testing of the hands. M2 is considered to be a useful tool in the hands of GHWs with time constraints in integrated settings.

Community based rehabilitation programmes: monitoring and evaluation in order to measure results.

Although Community Based Rehabilitation has now formally existed for almost 30 years, few papers have been written about the results of this approach. The authors hope to contribute with this paper towards methodologies that will help to measure results of Community Based Rehabilitation programmes. The importance of establishing--prior to the development of Community Based Rehabilitation--an extensive baseline has not been extensively covered as the importance of it is almost self-evident; yet the lack of baseline data often severely hampers the possibility of being able to measure the effects of Community Based Rehabilitation. The article places considerable importance on management information systems and monitoring, since it is believed that evaluation will greatly benefit from both the existence of baseline data as well as a well-developed and well-implemented information system. The present article emphasises the need for participatory processes in the development of baseline data and information systems. Four key areas for measuring CBR are highlighted: people, power, public society and partnerships. Finally, a tool is presented in order to evaluate (or monitoring and evaluation) systematically. What gets measured gets done; If you don't measure results, you can't tell success from failure; If you can't see success, you can't reward it; If you can't reward success, you're probably rewarding failure; If you can't see success, you can't learn from it; If you can't recognize failure, you can't correct it; If you can demonstrate results, you can win public support.

Evidence for the effectiveness of rehabilitation-in-the-community programmes.

The present literature review identified 29 reports from 22 countries in Asia, Africa and Central America reporting on the outcomes of rehabilitation-in-the-community programmes in low and middle income countries published between 1987 and 2007. Interventions included home visits by trained community workers who taught disabled persons skills to carry out activities of daily living, encouraged disabled children to go to school, helped find employment or an income generating activity, often involving vocational training and/or micro-credit. Many programmes had a component of influencing community attitudes towards disabled persons. The information collected shows that such programmes were effective in that they increased independence, mobility and communication skills of disabled persons, helped parents of disabled children to cope better and increased the number of disabled children attending schools. Economic interventions effectively increased the income of disabled persons although they rarely made them financially independent. CBR activities result in social processes that change the way community members view persons with disabilities, increase their level of acceptance and social inclusion and mobilise resources to meet their needs. In most countries, coverage of CBR programmes is inadequate. CBR initiatives appear most beneficial to those who have mild physical disability and can communicate verbally. There is a need to invest in the generation of quality evidence about the outcome and impact of rehabilitation-in-the-community programmes to ensure its continued support.

Gains and losses of structured information collection in the evaluation of 'rehabilitation in the community' programmes: ten lessons learnt during actual evaluations.

PURPOSE: Previously we have explored definitions of community-based rehabilitation (CBR) and proposed a way of classifying rehabilitation programmes by describing their essential characteristics. As the next step, we proposed two flow charts that guide the evaluator through a characterization of the programme and then indicate the information that should be collected. The present paper describes the application of this methodology in five actual evaluations of programmes aiming at socio-economic rehabilitation of persons affected by leprosy. METHOD: We compared the information as required by the flow charts to the information presented in the evaluation reports and asked: "Does this methodology adequately describe and reveal all relevant aspects of the rehabilitation programme?" RESULTS: Use of the flow charts led to discussion between evaluators and programme staff about how each would characterize the programme; this was a valuable step in the evaluation process and provided insight to the staff into their current practices and aspirations. The rehabilitation services as such were always well-described in the evaluation reports. More attention could have been given to the programme environment and provider-client relationships. More or more explicit attention than required by the flow charts could be given to linkages with other rehabilitation programmes and community organizations; questions of organizational capacity; systems to maintain and increase the quality of services; and conditions and constraints imposed by donor organizations. In order to show their effectiveness, rehabilitation programmes need to develop simple information systems which show progress of clients towards the rehabilitation goals defined for them, with them or by them. Impact can be demonstrated by an assessment one year after ending the intervention. This should include assessments of clients' psychological and social status. CONCLUSIONS: The original theoretical framework has proven its value in evaluation practice. The flow charts accommodate a variety of programmes and address the specific aims, contexts and developmental stages of the programmes evaluated. Taking the lessons learnt here into account will further improve the usefulness and practical relevance of the methodology we proposed.

En las comunidades en riesgo de lepra, la cobertura con vacunación BCG debería ser apoyada por las organizaciones de ILEP / No disponible

La principal tesis de este trabajo es que el planteamiento EPI de vacunación con BCG al nacer o durante el primer año de vida proporciona una protección parcial ya demostrada frente a la lepra y que las organizaciones ILEP deben estimular los servicios sanitarios de los distintos gobiernos para mantener una elevada cobertura de población vacunada. Una revisión de la información disponible en 12 estudios con controles presenta una eficacia media del 63% (rango 20-90%). Otros dos estudios de cohortes y dos ensayos comunitarios aleatorios ha n presentado una eficacia media del 70% (rango 42-80%). La duración de esta protección parcial es de entre 10-15 años. No se han llevado a cabo estudios sobre la protección BCG frente a la lepra a más largo plazo. Un ensayo demostró una reducción de la incidencia de la tuberculosis hasta 40 años después de la vacunación con BCG. Hay un consenso bastante generalizado de que la BCG produce un “incremento” de la respuesta inmunológica frente al M. Leprae derivando a los pacientes desde el polo lepromatoso de la escala de Ridley-Jopling hasta el extremo tuberculoide o incluso mantenerlo en estado de infección subclínica. Un análisis de las cifras de cobertura con BCG a nivel nacional, tal como se presentaron a la OMS reveló que la cobertura media incrementó desde un 58% en 1980 hasta 88% en 2003. Sólo cuatro países reportaron una cobertura inferior al 60% en el 2003. Veinte de los 53 países africanos reportaban coberturas inferiores al 80% en 2003 frente a cinco de 28 países asiáticos, cinco de 13 en Oceanía y dos de 27 en América Central y del Sur. Al compara los datos proporcionados por los gobiernos locales con los obtenidos en estudios específicos en distintas comunidades del país, se deduce que las cifras oficiales no reflejan adecuadamente la realidad local. Frecuentemente, las comunidades rurales presentan menor cobertura que las urbanas. Los hogares delos barrios pobres presentan menor cobertura que los de zonas mas prosperas. Existen bolsas de poca cobertura BCG en países donde la lepra es endémica y las organizaciones ILEP están trabajando de forma activa. Las organizaciones ILEP pueden colaborar no involucrándose en la vacunación misma, sino controlando la cobertura BCG y exigiendo servicios sanitarios adecuados en las zonas donde trabajan. Esto reduciría el riesgo de contraer lepra en los menores de 15 años, proporcionando otra serie de beneficios a las madres y niños comprometidos y contribuiría a reducir la incidencia de la lepra a largo plazo. Si la protección conferida por la BCG es de por vida, proporcionar una elevada cobertura BCG a los planteamientos rutinarios de detección y tratamiento precoz se podría reducir significativamente la incidencia de la lepra en el 2020 (AU)

The central thesis of this paper is that the EPI policy of a BCG vaccination at birth or in the first year of life provides proven partial protection against leprosy and that ILEP organizations should actively encourage government health services to maintain a high coverage. A literature review identified 12 case-control studies showing a median vaccine efficacy of 63% (range 20-90%). Two prospective studies and two randomized community trials showed a median efficacy of 70% (range 42-80%). The duration of this partial protection is at least 10-15 years. Studies of the long-term protective effect of BCG vaccination against leprosy have not been conducted. One trial has demonstrated a reduction of tuberculosis incidence up to 40 years after vaccination with BCG. There is a growing consensus that BCG works by “upgrading” the immune response to M. leprae, moving leprosy cases form the lepromatous end of the Ridley-Jopling classification to the tuberculoid end or even make it possible for infection to remain subclinical. An analysis of national BCG coverage figures as reported to WHO showed that the global mean coverage increased form 58% in 1980 to 88% in 2003. The absolute number of countries reporting less than 80% coverage has decreased from 78 out of 105 in 1981 to 32 of 157 in 2003. Only four countries reported coverage’s below 60% in 2003. Twenty of the 53 African countries reported coverage’s below 80% in 003 against five of 38 countries in Asia, five of 13 countries in Oceania and two of 27 in Central and South America. Comparison of officially reported national coverage to estimates of coverage form special surveys clearly shows that the national figure may not adequately reflect the local situation. Rural communities often have lower coverage than urban populations. Slum households have lower coverage than non-slum households. Remote areas may not be touched by modern health services. Pockets of low BCG coverage exist in countries where leprosy is endemic and ILEP organisations are active. ILEP organisations can make an impact, not by getting involved in vaccination work directly, but by monitoring the BCG coverage and advocating for adequate provision of MCH services in the communities in which they work. This will reduce the risk of leprosy in children up to 15 years of age, provide a number of other benefits to the mothers and children involved and potentially contribute to a reduction of leprosy incidence on the longer term. If the partial protection imparted by BCG is life-long, adding a consistently high BCG coverage to the usual strategy of early case detection and treatment could result in a halving of the leprosy incidence in 2020 (AU)

ILEP organisations should strive for high BCG coverage in communities at risk of leprosy.

The central thesis of this paper is that the EPI policy of a BCG vaccination at birth or in the first year of life provides proven partial protection against leprosy and that ILEP organisations should actively encourage government health services to maintain a high coverage. A literature review identified 12 case-control studies showing a median vaccine efficacy of 63% (range 20-90%). Two prospective studies and two randomised community trials showed a median efficacy of 70% (range 42-80%). The duration of this partial protection is at least 10-15 years. Studies of the long-term protective effect of BCG vaccination against leprosy have not been conducted. One trial has demonstrated a reduction of tuberculosis incidence up to 40 years after vaccination with BCG. There is a growing consensus that BCG works by 'upgrading' the immune response to M. leprae, moving leprosy cases from the lepromatous end of the Ridley-Jopling classification to the tuberculoid end or even makes it possible for infection to remain subclinical. An analysis of national BCG coverage figures as reported to WHO showed that the global mean coverage increased from 58% in 1980 to 88% in 2003. The absolute number of countries reporting less than 80% coverage has decreased from 78 out of 105 in 1981 to 32 of 157 in 2003. Only four countries reported coverages below 60% in 2003. Twenty of the 53 African countries reported coverages below 80% in 2003 against five of 38 countries in Asia, five of 13 countries in Oceania and two of 27 in Central and South America. Comparison of officially reported national coverage to estimates of coverage from special surveys clearly shows that the national figure may not adequately reflect the local situation. Rural communities often have lower coverage than urban populations. Slum households have lower coverage than non-slum households. Remote areas may not be touched by modem health services. Pockets of low BCG coverage exist in countries where leprosy is endemic and ILEP organisations are active. ILEP organisations can make an impact, not by getting involved in vaccination work directly, but by monitoring the BCG coverage and advocating for adequate provision of MCH services in the communities in which they work. This will reduce the risk of leprosy in children up to 15 years of age, provide a number of other benefits to the mothers and children involved and potentially contribute to a reduction of leprosy incidence on the longer term. If the partial protection imparted by BCG is life-long, adding a consistently high BCG coverage to the usual strategy of early case detection and treatment could result in a halving of the leprosy incidence in 2020.

The development of a short questionnaire for screening of activity limitation and safety awareness (SALSA) in clients affected by leprosy or diabetes.

PURPOSE: The purpose of this study was to develop and validate a method of measuring activity limitation in leprosy and diabetes. The resulting questionnaire should be quick and simple to use in basic clinical settings, not require any testing skills or equipment, be validated across a number of cultures in order to be widely applicable, be relevant for anyone with long-standing peripheral neuropathy and be sensitive to changes in clients' capabilities. Because of impaired sensibility in hands or feet, persons affected by leprosy or diabetes are expected to be aware that many activities carry a risk of injury, particularly repetitive stress, excess pressure, friction or burns. They are expected to avoid these risky activities, or modify how they are carried out, in order to prevent injury. An additional aim of the study was therefore to find ways of assessing how far clients were aware of safety issues and how much they limited their activities voluntarily because of safety concerns. METHOD: Lists of activities of daily living relevant for the target populations were generated through individual interviews and focus group discussions. A questionnaire of 374 items was compiled and administered to 436 persons affected by leprosy and 132 affected by diabetes in five countries in four continents. A total of 76% of respondents had impairments. Occupational therapists not otherwise involved in this study gave an independent assessment of the degree of activity limitation of 207 respondents. The process of item selection from this database is presented step by step. Items for the SALSA scale were practised by at least 70% of respondents in all participating populations, were easy to perform for some but difficult for others, correlated well with the assessment of independent practitioners and had good item-total correlation. The present set of 20 items is well represented by a single principal component and had a high scale reliability coefficient. RESULTS: On a 20-item scale, one would expect a score of 20 if the respondents practiced all the activities listed without difficulty. Higher scores reflect increasing activity limitation. The SALSA score varied from 10 to 75 with a mean of 32. The distribution of the scores was not different between men and women or between disease groups. There was a consistent increase of the SALSA score with age and with the level of impairment. Compared to India and Nigeria, the average SALSA scores, adjusted for age and impairment level, were higher in Israel and Brazil, but lower in China. The spearman correlation coefficient between the SALSA scores and the scores assigned by the independent experts was 0.67. Among 23 respondents without overt disease, the SALSA score had a median of 19 and half the respondents scored between 18 and 20. CONCLUSIONS: The present research has resulted in the SALSA scale, a short questionnaire which can be administered within 10 min and which provides a standardized measure of activity limitation in clients with a peripheral neuropathy. It can be used to make comparisons between (groups of) individuals in different countries and in the same person (or group) over time. General health workers can use SALSA to screen clients and refer those with high scores to specialised services. In addition, the scale will assist service providers in designing appropriate interventions.

Reflect before you act: providing structure to the evaluation of rehabilitation programmes.

PURPOSE: This paper is concerned with understanding and evaluating potentially diverse rehabilitation programmes. It helps evaluators and programme managers to focus attention on specific aspects of the rehabilitation process and select evaluation questions relevant to each. METHOD: Distinction is made between the rehabilitation programme itself, the programme environment and the relationships between the two. For each of these areas, evaluation questions have been formulated. For services offered to individual clients, questions address whether the status of clients has improved, what interventions are offered and who benefit from them, the relationships between the service providers and the clients, and who may be involved in the rehabilitation process besides the client. To assess the programme environment, questions address the epidemiology of disability, the resources available to persons with disabilities, the inclusiveness of education and employment and a number of eco-social variables. Relationships between the programme and its environment concern the support of the community for the programme, the way the programme seeks to influence the community, the referral of clients to other services available in the community and the extent to which the programme is a learning organization. RESULTS: Lists of evaluation questions are presented from which the evaluator can select those most relevant to the programme to be evaluated. This provides a framework for the evaluation and for the information to be gathered. Rather than providing a blue print, this framework permits flexibility to adapt to the specific situation of the programme to be evaluated. CONCLUSION: This paper presents a useful guideline that stimulates the thinking of those preparing for the evaluation of rehabilitation programmes.

Avoiding misperceptions: classifying rehabilitation projects using letters rather than numbers.

A classification system proposed earlier of the many different known rehabilitation approaches and activities used a quantitative scoring system, thus giving the impression that projects with a higher score were better, more correct or more important than projects with a lower score. We therefore propose an alternative classification based on letters, so that a given combination of letters characterizes a particular type of project. The letters are derived from four dimensions: desired outcome of the intervention, participation of the clients in the rehabilitation process, the target group served and the services offered. Some examples are presented. The classification serves to analyse rehabilitation projects, to define policy and as a starting point for evaluation.

Burning wood in the kitchen increases the risk of cervical neoplasia in HPV-infected women in Honduras.

There is suggestive evidence that the use of wood for cooking increases the risk of invasive cervical cancer. We investigated this association in women with cervical neoplasia in Honduras. Women aged 20-64 years with cervical intraepithelial neoplasia (CIN) grade I (n = 44), CIN II (n = 36) or CIN III (n = 45) were recruited from screening programs in Tegucigalpa City and each was matched by age and clinic to 2 controls (241 total) without cervical abnormalities. The clinics selected women of low socioeconomic status. Cervical scrapes were tested for the presence of human papillomavirus (HPV) DNA using a general primer set directed against the L1 open reading frame, and HPV genotyping was performed. Odds ratios (ORs) were computed through conditional logistic regression; p-values were from tests for linear trend of risk with increasing exposure. HPV DNA was detected in 48% of women with CIN I, 67% with CIN II and 89% with CIN III. The ORs were 1.5, 2.5 and 38.3 respectively. At univariate analysis, age at first intercourse was consistently lower among cases than controls. Risk was reduced by 50% or more in all 3 CIN classes when initiation of sexual activity at age 20 years or older was compared with initiation before age 16 years (p = 0.013 for CIN I). No effect was observed for smoking, oral contraceptives or previous cytologic screening. Effects for number of sexual partners, parity, age at first pregnancy and education were in the expected directions but never persisted after adjustment for HPV. Chronic exposure to wood smoke significantly increased the risk of CIN III (p = 0.022). However, women who said "No" when asked if they ever used wood in the kitchen had a higher risk than those with low or intermediate exposure. This was taken as evidence that the initial screening question had either been misunderstood or that answers were biased. Restricting the analysis to women who reported exposure yielded positive associations in all CIN classes with for CIN III ORs of 2.3 for 25-34 and 9.5 for 35+ years compared with women who had 1-14 years of exposure (p = 0.017). A multivariate analysis of the complete dataset (n = 366) allowed for separate ORs for HPV in each CIN class. Inclusion of age at first intercourse significantly improved this model (p = 0.021). Adding exposure to wood smoke further improved the model only if an interaction between woodsmoke and HPV was allowed for. If, as the data suggest, it was assumed that wood smoke had its effect among HPV-positives only, there was a significant linear dose-response relationship between exposure to woodsmoke and risk of CIN (p = 0.026). This association was independent of other risk factors including education, parity and number of sexual partners. ORs in the final model were 0.37 for age at first intercourse 20 years or higher and 5.69 for more than 35 years of exposure to wood burning in the kitchen. The present study suggests that the use of wood for cooking is a risk factor for cervical neoplasia that deserves further study, given its high prevalence in developing countries.