Development of a questionnaire to determine the case detection delay of leprosy: A mixed-methods cultural validation study.
Ontology highlight
ABSTRACT: 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.
SUBMITTER: de Bruijne ND
PROVIDER: S-EPMC8758092 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:BackgroundLeprosy is a public health burden in Indonesia with a high number of new cases every year and a high proportion of disability among new cases. Case detection delay (CDD) can contribute to ongoing transmission and increased disability chances among leprosy patients. This study aimed to establish the CDD of leprosy and the factors associated with detection delay in Indonesia.MethodCommunity-based study with a cross-sectional design. Data were collected through interviews about sociodemographic and behavioral factors, anticipated stigma, and duration of CDD. Leprosy classification and case detection methods were obtained from health service records. A random sample was taken of 126 leprosy patients registered between 1st October 2020 and 31st March 2022 in the Tegal regency in the Central Java Province. Data were analysed by descriptive and analytical statistics using multiple linear regression.ResultsThe mean CDD, patient delay, and health system delay were 13.0 months, 9.7 months, and 3.2 months, respectively. Factors associated with longer CDD are younger age (below 35 years), male, found through passive case detection, and not having a family member with leprosy. Factors associated with longer patient delay were being younger (below 35 years), being male, not having a family member with leprosy, and anticipated stigma of leprosy. It was not possible to reliably identify factors associated with health system delay.ConclusionCDD in leprosy should be reduced in Indonesia. The Indonesian National Leprosy Control Program (NLCP) is advised to adopt an integrated intervention programme combining active case detection with targeted health education to reduce CDD and thereby preventing disabilities in people affected by leprosy.
| S-EPMC10464084 | biostudies-literature
Project description:BackgroundBeliefs about medication have been associated with adherence in other diseases but there are no existing disease-specific medication beliefs questionnaires for CF. This mixed-methods validated the Cystic Fibrosis Medication Belief Questionnaire (CF-MBQ), based on social cognitive theory.MethodsBased on previous research, items were developed for five domains: motivation, self-efficacy, perceived importance, and decisional balance to take or miss medications. Cognitive interviews were conducted with 15 adult patients with CF to refine item development. 128 patients with CF completed an online survey and objective medication adherence was measured using pharmacy refill data.ResultsThe five subscales demonstrated strong psychometric properties, with adequate-to-good internal consistency scores. More importantly, each domain demonstrated construct validity with adherence.ConclusionsThese theoretically-derived measures may be important for clinical purposes to provide guidance on appropriate interventions to improve adherence and for research to provide enhanced understanding on patient determinants of medication adherence.
| S-EPMC5581993 | biostudies-literature
Project description:BackgroundCrusted scabies is endemic in some remote Aboriginal communities in the Northern Territory (NT) of Australia and carries a high mortality risk. Improvement in active case detection (ACD) for crusted scabies is hampered by a lack of evidence about best practice. We therefore conducted a systematic review of ACD methods for leprosy, a condition with similar ACD requirements, to consider how findings could be informative to crusted scabies detection.Methods and principle findingsWe conducted systematic searches in MEDLINE, CINAHL, Scopus and the Cochrane Database for Systematic Reviews for studies published since 1999 that reported at least one comparison rate (detection or prevalence rate) against which the yield of the ACD method could be assessed. The search yielded 15 eligible studies from 511. Study heterogeneity precluded meta-analysis. Contact tracing and community screening of marginalised ethnic groups yielded the highest new case detection rates. Rapid community screening campaigns, and those using less experienced screening personnel, were associated with lower suspect confirmation rates. There is insufficient data to assess whether ACD campaigns improve treatment outcomes or disease control.ConclusionThis review demonstrates the importance of ACD campaigns in communities facing the highest barriers to healthcare access and within neighbourhoods of index cases. The potential benefit of ACD for crusted scabies is not quantified, however, lessons from leprosy suggest value in follow-up with previously identified cases and their close contacts to support for scabies control and to reduce the likelihood of reinfection in the crusted scabies case. Skilled screening personnel and appropriate community engagement strategies are needed to maximise screening uptake. More research is needed to assess ACD cost effectiveness, impact on disease control, and to explore ACD methods capable of capturing the homeless and highly mobile who may be missed in household centric models.
| S-EPMC8336788 | biostudies-literature
Project description:Background Leprosy is an infectious disease caused by Mycobacterium leprae and remains a source of preventable disability if left undetected. Case detection delay is an important epidemiological indicator for progress in interrupting transmission and preventing disability in a community. However, no standard method exists to effectively analyse and interpret this type of data. In this study, we aim to evaluate the characteristics of leprosy case detection delay data and select an appropriate model for the variability of detection delays based on the best fitting distribution type. Methods Two sets of leprosy case detection delay data were evaluated: a cohort of 181 patients from the post exposure prophylaxis for leprosy (PEP4LEP) study in high endemic districts of Ethiopia, Mozambique, and Tanzania; and self-reported delays from 87 individuals in 8 low endemic countries collected as part of a systematic literature review. Bayesian models were fit to each dataset to assess which probability distribution (log-normal, gamma or Weibull) best describes variation in observed case detection delays using leave-one-out cross-validation, and to estimate the effects of individual factors. Results For both datasets, detection delays were best described with a log-normal distribution combined with covariates age, sex and leprosy subtype [expected log predictive density (ELPD) for the joint model: −1123.9]. Patients with multibacillary (MB) leprosy experienced longer delays compared to paucibacillary (PB) leprosy, with a relative difference of 1.57 [95% Bayesian credible interval (BCI): 1.14–2.15]. Those in the PEP4LEP cohort had 1.51 (95% BCI: 1.08–2.13) times longer case detection delay compared to the self-reported patient delays in the systematic review. Conclusions The log-normal model presented here could be used to compare leprosy case detection delay datasets, including PEP4LEP where the primary outcome measure is reduction in case detection delay. We recommend the application of this modelling approach to test different probability distributions and covariate effects in studies with similar outcomes in the field of leprosy and other skin-NTDs. Graphical Abstract Supplementary Information The online version contains supplementary material available at 10.1186/s40249-023-01065-4.
| S-EPMC9940321 | biostudies-literature
Project description:BackgroundStigma plays in an important role in the lives of persons affected by neglected tropical diseases, and assessment of stigma is important to document this. The aim of this study is to test the cross-cultural validity of the Community Stigma Scale (EMIC-CSS) and the Social Distance Scale (SDS) in the field of leprosy in Cirebon District, Indonesia.Methodology/principle findingsCultural equivalence was tested by assessing the conceptual, item, semantic, operational and measurement equivalence of these instruments. A qualitative exploratory study was conducted to increase our understanding of the concept of stigma in Cirebon District. A process of translation, discussions, trainings and a pilot study followed. A sample of 259 community members was selected through convenience sampling and 67 repeated measures were obtained to assess the psychometric measurement properties. The aspects and items in the SDS and EMIC-CSS seem equally relevant and important in the target culture. The response scales were adapted to ensure that meaning is transferred accurately and no changes to the scale format (e.g. lay out, statements or questions) of both scales were made. A positive correlation was found between the EMIC-CSS and the SDS total scores (r=0.41). Cronbach's alphas of 0.83 and 0.87 were found for the EMIC-CSS and SDS. The exploratory factor analysis indicated for both scales an adequate fit as unidimensional scale. A standard error of measurement of 2.38 was found in the EMIC-CSS and of 1.78 in the SDS. The test-retest reliability coefficient was respectively, 0.84 and 0.75. No floor or ceiling effects were found.Conclusions/significanceAccording to current international standards, our findings indicate that the EMIC-CSS and the SDS have adequate cultural validity to assess social stigma in leprosy in the Bahasa Indonesia-speaking population of Cirebon District. We believe the scales can be further improved, for instance, by adding, changing and rephrasing certain items. Finally, we provide suggestions for use with other neglected tropical diseases.
| S-EPMC4222778 | biostudies-literature
Project description:BackgroundPatients' non-adherence with medical orders of physicians in outpatient clinics can lead to reduced clinical effectiveness, inadequate treatment, and increased medical care expenses. This study was conducted to develop and validate a questionnaire to determine the reasons for patients' non-adherence with physicians' medical orders.MethodsA sequential exploratory mixed-method study was conducted in two stages. The first stage comprised a qualitative stage to generate the primary items of the questionnaire. This stage provided findings of two sub-stages comprising a literature review and the findings of a qualitative conventional content analysis of 19 semi-structured interviews held with patients, physicians, and managers of the outpatient clinics in Kerman, an area located in southeastern Iran. The second stage comprised a quantitative study aiming evaluation of the instrument psychometric properties, including the face, content, construct, and reliability assessment of the questionnaire. Construct validity assessment was evaluated using exploratory factor analysis (EFA). The reliability assessment was done using assessing internal consistency (Cronbach's alpha). To assess the construct validity of the questionnaire, four hundred and forty patients referred to outpatient clinics in Kerman were selected using stratified convenience sampling to fill out the questionnaire. The sample size was calculated using the Cochran formula. Qualitative and quantitative data were analyzed by MAXQDA 10 and Stata version 14, respectively.ResultsThe primary items contained 57 items, of which 42 met the minimum acceptable value of 0.78 for item-level content validity index (I-CVI = 1 for 24 items and I-CVI = 0.8 for 18 items). Item-level content validity ratio (I-CVR) was confirmed for 18 items with a minimum acceptable value of 0.99 for five experts. Finally, 18 items obtained the acceptable value for both I-CVI and I-CVR indicators and were confirmed. Using EFA, four factors (intrapersonal-psychological, intrapersonal-cognitive, provider-related, and socio-economic reasons) with 18 items and Cronbach's alpha coefficient of 0.70, 0.66, 0.73, and 0.71, respectively, were identified and explained 51% of the variance. The reliability of the questionnaire (r = 0.70) was confirmed.ConclusionThe questionnaire with four dimensions is a valid and reliable instrument that can help determine the perceived reasons for non-adherence with medical orders in the outpatient services system.
| S-EPMC7881677 | biostudies-literature
Project description:The Health Literacy Questionnaire (HLQ), developed in Australia in 2012 using a 'validity-driven' approach, has been rapidly adopted and is being applied in many countries and languages. It is a multidimensional measure comprising nine distinct domains that may be used for surveys, needs assessment, evaluation and outcomes assessment as well as for informing service improvement and the development of interventions. The aim of this paper is to describe the German translation of the HLQ and to present the results of the validation of the culturally adapted version. The HLQ comprises 44 items, which were translated and culturally adapted to the German context. This study uses data collected from a sample of 1,058 persons with chronic conditions. Statistical analyses include descriptive and confirmatory factor analyses. In one-factor congeneric models, all scales demonstrated good fit after few model adjustments. In a single, highly restrictive nine-factor model (no cross-loadings, no correlated errors) replication of the original English-language version was achieved with fit indices and psychometric properties similar to the original HLQ. Reliability for all scales was excellent, with a Cronbach's Alpha of at least 0.77. High to very high correlations between some HLQ factors were observed, suggesting that higher order factors may be present. Our rigorous development and validation protocol, as well as strict adaptation processes, have generated a remarkable reproduction of the HLQ in German. The results of this validation provide evidence that the HLQ is robust and can be recommended for use in German-speaking populations.Trial registrationGerman Clinical Trial Registration (DRKS): DRKS00000584. Registered 23 March 2011.
| S-EPMC5325258 | biostudies-literature
Project description:BackgroundPectus excavatum often imposes significant burden on the patients' quality of life. However, despite the known biopsychosocial effects, the deformity remains underappreciated. Patient reported outcome measures can be used to measure and appreciate results from a patient's perspective. The pectus excavatum evaluation questionnaire (PEEQ) is the most employed disease specific instrument to measure patient-reported outcome measures (PROMs). A translation and linguistic validation of this questionnaire is presented for its use in the Dutch pediatric pectus excavatum population. By providing an insight in our translation process, we want to encourage other researchers to perform translations to other languages to make the questionnaire available to clinicians and researchers worldwide.MethodsThe 22-item PEEQ was translated and adapted according to the leading guidelines for the translation of patient reported outcome measures. Conceptual equivalence and cultural adaptation were emphasized.ResultsOne forward translation was produced through reconciliation of two forward translations. Back translation resulted in 15 identical items, as well as 6 literal, and 1 conceptual discrepancy. The latter was expected as during the forward translation a more culturally appropriate translation was chosen. Ten patients were involved during the cognitive debriefing process, following which one item was revised and the final Dutch version was established.ConclusionsWe provide a culturally appropriate and linguistically validated Dutch version of the PEEQ.
| S-EPMC9344429 | biostudies-literature
Project description:BackgroundNepal has achieved and sustained the elimination of leprosy as a public health problem since 2009, but 17 districts and 3 provinces with 41% (10,907,128) of Nepal's population have yet to eliminate the disease. Pediatric cases and grade-2 disabilities (G2D) indicate recent transmission and late diagnosis, respectively, which necessitate active and early case detection. This operational research was performed to identify approaches best suited for early case detection, determine community-based leprosy epidemiology, and identify hidden leprosy cases early and respond with prompt treatment.MethodsActive case detection was undertaken in two Nepali provinces with the greatest burden of leprosy, Madhesh Province (40% national cases) and Lumbini Province (18%) and at-risk prison populations in Madhesh, Lumbini and Bagmati provinces. Case detection was performed by (1) house-to-house visits among vulnerable populations (n = 26,469); (2) contact examination and tracing (n = 7608); in Madhesh and Lumbini Provinces and, (3) screening prison populations (n = 4428) in Madhesh, Lumbini and Bagmati Provinces of Nepal. Per case direct medical and non-medical costs for each approach were calculated.ResultsNew case detection rates were highest for contact tracing (250), followed by house-to-house visits (102) and prison screening (45) per 100,000 population screened. However, the cost per case identified was cheapest for house-to-house visits [Nepalese rupee (NPR) 76,500/case], followed by contact tracing (NPR 90,286/case) and prison screening (NPR 298,300/case). House-to-house and contact tracing case paucibacillary/multibacillary (PB:MB) ratios were 59:41 and 68:32; female/male ratios 63:37 and 57:43; pediatric cases 11% in both approaches; and grade-2 disabilities (G2D) 11% and 5%, respectively. Developing leprosy was not significantly different among household and neighbor contacts [odds ratios (OR) = 1.4, 95% confidence interval (CI): 0.24-5.85] and for contacts of MB versus PB cases (OR = 0.7, 95% CI 0.26-2.0). Attack rates were not significantly different among household contacts of MB cases (0.32%, 95% CI 0.07-0.94%) and PB cases (0.13%, 95% CI 0.03-0.73) (χ2 = 0.07, df = 1, P = 0.9) and neighbor contacts of MB cases (0.23%, 0.1-0.46) and PB cases (0.48%, 0.19-0.98) (χ2 = 0.8, df = 1, P = 0.7). BCG vaccination with scar presence had a significant protective effect against leprosy (OR = 0.42, 0.22-0.81).ConclusionsThe most effective case identification approach here is contact tracing, followed by house-to-house visits in vulnerable populations and screening in prisons, although house-to-house visits are cheaper. The findings suggest that hidden cases, recent transmission, and late diagnosis in the community exist and highlight the importance of early case detection.
| S-EPMC10698884 | biostudies-literature
Project description:Swimming pool water ingestion volumes are necessary for assessing infection risk from swimming. Pool water ingestion volumes can be estimated by questionnaire or measuring a chemical tracer in swimmer urine. Questionnaires are often preferred to the chemical tracer method because surveys are less time consuming, but no research exists validating questionnaires accurately quantify pool water ingestion volumes. The objective of this study was to explore if questionnaires are a reliable tool for collecting pool water ingestion volumes. A questionnaire was issued at four pool sites in Tucson, Arizona to 46 swimmers who also submitted a urine sample for analyzing cyanuric acid, a chemical tracer. Perceived ingestion volumes reported on the questionnaire were compared with pool water ingestion volumes, quantified by analyzing cyanuric acid in swimmer urine. Swimmers were asked if they swallowed (1) no water or only a few drops, (2) one to two mouthfuls, (3) three to five mouthfuls, or (4) six to eight mouthfuls. One mouthful is the equivalent of 27 mL of water. The majority (81%) of swimmers ingested <27 mL of pool water but reported ingesting >27 mL ("one mouthful") on the questionnaire. More than half (52%) of swimmers overestimated their ingestion volume. These findings suggest swimmers are over-estimating pool water ingestion because they perceive one mouthful is <27 mL. The questionnaire did not reliably collect pool water ingestion volumes and should be improved for future exposure assessment studies. Images of the ingestion volume categories should be included on the questionnaire to help swimmers visualize the response options.
| S-EPMC6265721 | biostudies-literature