Determinants of patients' delay with disability in the diagnosed leprosy cases in the three major states of India: A case-control study.

BACKGROUND: Skin lesions are the most common early symptoms of leprosy, often ignored by patients at an early stage and misdiagnosed as other dermatological diseases by healthcare personnel, leading to delay in diagnosis and treatment of leprosy precipitating permanent neurological deficit, deformities and serious disabilities. AIMS: The objective is to evaluate the duration of delay and factors responsible for the delay in reporting of patients, among the newly detected leprosy cases (Grade 1 and Grade 2 disability patients). METHODS: A case-control study was conducted during 2014-2016 in three major states of India (Delhi, Gujarat and West Bengal) in 140 randomly recruited newly registered adult leprosy patients (aged 18 years and above) with Grade 2/1 disabilities (cases) and 140 Grade 0 disability patients (controls) in each of these Indian states. RESULTS: It is established that the major contributors for the delay in the early diagnosis of leprosy have been patient-related factors. The median patient delay in the three states of Delhi, Gujarat and West Bengal were five months (0.7-1.8), 2.8 months (2-14) and 12 months (2-24), respectively. LIMITATIONS: The study design is case-control and has an inbuilt reporting bias due to the retrospective nature of data collection but the data collection was carried with caution to reduce the recall bias. As the study is carried out in three states, generalisation of interpretation was cautiously executed. The matching ratio of cases and controls was 1:1 in this study, but we could not increase the controls due to operational feasibility during the conduct of the study. CONCLUSION: Patient delay is a crucial factor responsible for the disability among new leprosy cases. A higher patient delay in these three states reflects that the community is not aware about the signs and symptoms of leprosy. Reducing patient delay is very important for reducing disabilities in the newly diagnosed cases.

Quality of Occupational Therapy Research in India - A Descriptive Review.

Background: Occupational therapy (OT) enhances functional independence in the daily activities of people with disabilities and subsequently their quality of life. Research in OT generates evidence to provide safe and effective services to the disabled. However, OT research in India has been shown to have various methodological limitations. These methodological limitations are expected to impact the quality of OT research as well as the evidence derived from this research to inform decision-making in rehabilitation. The majority of the OT research is disseminated and promoted through the All India Occupational Therapists' Association's (AIOTA) annual national conference (ANC). Analyzing the abstracts, selected for the presentation at the ANC could help understand and strategically improve the quality of OT research in India. Objectives: To explore and describe the quality of OT research in India. Study Design: Descriptive analysis. Methods: Descriptive, nonsystematic review and analysis of the key methodological aspects of the conference abstracts submitted for the AIOTA ANC published in the Indian Journal of OT (IJOT) from 2017 to 2021 was carried out. Information related to the methodological aspects of the research abstracts was extracted using a data extraction form and the data were synthesized and reported descriptively. Results: About 218 abstracts had been selected for either poster or oral presentations in the AIOTA ANC. All the abstracts were included for the review. A total of 8055 participants were recruited for the studies conducted from 2017 to 2021. About 5757 (72%) of the participants were recruited for cross-sectional studies. Nearly 72 (33%) of the abstracts presented were related to cross-sectional studies, 52 (24%) were case studies and 66 (30%) were experimental studies. However, research designs implying highest level of evidence such as systematic reviews were only 4 (2%) and randomized controlled trials were only 9 (4%) with 297 participants. Notably, 203 (98%) of the all the studies evaluating effectiveness of interventions or aiming to investigate associations reported positive results with statistically significant improvements and associations. Conclusion: The review provides invaluable information related to the quality of OT research in India. It implies the need to improve the scientific rigor of the evidence generated in relation to OT research in India. This review also implies the need for a radical change and strengthening of OT research within OT education and professional practice in India. National and global OT associations need to prioritize good quality OT research by enhancing the research skills and competencies of OTs in India. This could help promote evidence-based OT science and develop the OT profession in the world's second-most populous country. In addition, it is also expected to encourage those OT researchers who have been striving to build OT research standards in India.

Exploring the Research Priorities for Occupational Therapy in India: A Descriptive Review.

Background: Occupational therapists are considered an important workforce for the rehabilitation of persons with disabilities globally. However, in India, the profession is just beginning to gain recognition within the national and state-level systems for health care. One of the reasons for this could be the paucity of specific research related to the development of occupational therapy (OT) and its benefits to the health systems. Therefore, it is of immense public health importance to explore the priorities and gaps in OT research in India. A vast majority of the OT research in India is promoted and disseminated through the All-India Occupational Therapists Association (AIOTA) and its annual national conference (ANC). Objectives: The objective of this study is to descriptively review the conference abstracts of the AIOTA ANC published in the Indian Journal of OT (IJOT), an official publication of the AIOTA, from 2017 to 2021. Study Design: The study design was a descriptive, nonsystematic review. Methods: Review of the abstracts selected for the AIOTA ANC published in the IJOT from 2017 to 2021. A data extraction form was developed and used to synthesize data related to the clinical and demographic characteristics of OT research in India. Results: The search yielded 218 abstracts. State-level trends indicated that close to 85% of the research submissions were from four states and no submissions from the northeastern states until 2020. Nearly 60% of the abstracts were clinical research with OT interventions. About 40% of these research abstracts were related to pediatrics, followed by neurology (17%), musculoskeletal (15%), mental health (10%), and ergonomics and assistive technology (8%). There were 1%-2% of research abstracts submitted related to coronavirus disease-2019 (COVID-19) and geriatrics. About 85% of the research abstracts were related to impairment (39%), activity limitation (26%), and social participation (22%). Conclusion: This review highlights the need for diversifying the research in OT in India. This is particularly important in relation to expanding from selected states to pan-India research and development, especially in the northeastern states. Furthermore, the focus of OT research must move beyond impairments and approach disability from the biopsychosocial perspective. It is also very important to diversify the research in OT to areas that are of public health importance such as COVID-19, geriatrics, noncommunicable diseases, and rehabilitation in health systems. Priority setting for research in OT in India is an important implication of this review.

Occupational Therapy for Reducing Disabilities in Persons with Disabilities in India: A Systematic Review.

BACKGROUND: The current evidence for occupational therapy practice, teaching, and research is replicated and implemented significantly from high-income countries in India. Therefore, a systematic review and an evaluation of existing evidence for occupational therapy (OT) to reduce disabilities including impairments, activity limitations, and participation restriction in persons with disabilities (PWD) in India are warranted. OBJECTIVES: The objective of this review was to evaluate the effectiveness of OT interventions for reducing disabilities in PWD in India. STUDY DESIGN: Systematic review. METHODS: We searched the Cochrane CENTRAL, MEDLINE, Embase, CINAHL, PsycINFO, AMED, and Web of Science. A hand search was also carried out in selected Indian journals, OT-specific databases, and repositories, such as Indian Journal of Occupational Therapy, Indian Journal of Physiotherapy and Occupational Therapy, OT Seekers, World Federation of Occupational Therapy Bulletin, Asia Pacific Occupational Therapists Regional Group, and clinical trials registers. The search was restricted to published studies conducted in India during 2000-2021. We included randomized controlled trials (RCTs) of an occupational therapy intervention delivered by OTs for PWD, where the effects of the intervention were evaluated using any relevant disability outcome measure. Studies without access to full text were excluded. Two review authors independently completed screening, and one author reviewed the full text of the screened studies. Another pair of authors extracted data from included studies for prespecified disability outcomes, and two authors assessed the risk of bias in the included studies. RESULTS: We identified seven RCTs of occupational therapy interventions for PWD in India with 305 participants in total. All seven studies were very different in terms of their objective, participants, comparison, and outcomes. Allocation concealment and blinding and risk of bias were high in five trials. All the trials reported impairment outcomes with a statistically significant difference between the experimental arm and the control arm in terms of their primary outcomes except one. Given the sample size and the risk of bias in each of the included trials, the effect size has to be understood and interpreted with utmost caution. CONCLUSION: Overall, this review establishes the paucity of evidence for occupational therapy for PWD in India. Building the capacity for rigorous and relevant scientific research in occupational therapy would enable bridging the gaps in evidence for occupational therapy in India.

Risk of disability among adult leprosy cases and determinants of delay in diagnosis in five states of India: A case-control study.

INTRODUCTION: A high proportion of grade 2 disability (visible deformity) is indicative of delay in detection of leprosy and leprosy is one of the major causes of preventable disability. We conducted this study to determine the risk factors associated with disability (G2D and G1D) among adult new leprosy cases and to measure their strength of association. METHODS: A multi-centric case-control study was undertaken in five states of India i.e. Andhra Pradesh, Delhi, Gujarat, Maharashtra and West Bengal). Among new adult patients, cases were defined as those with disability (G2D and G1D) at the time of diagnosis and controls were defined as those without any disability (G0D). Delays were quantified based on patient recall across a timeline. Patient delay defined as the time period between first noticed symptom by the patient and the first visit to any health care provider (HCP); HCP delay defined as the time period between patient's first visit to any HCP and the confirmation of diagnosis of leprosy; and total delay defined as the sum of both patient and HCP delays. RESULTS: A total of 1400 new leprosy patients (700 G2D/G1D and 700 G0D) across five states were interviewed. Among G2D/G1D, the median patient delay was 8 months compared with 4 months among G0D. The median HCP delay was 2 months for G2D/G1D and 1 month for G0D. The median total delay was 14 months for G2D/G1D and 6.2 months for G0D; observed median difference between groups was statistically significant (p<0.001). When patient delay was more than 3 months, odds of G2D/G1D at diagnosis were 1.6 times higher compared to when patient delay was less than 3 months. When the HCP delay was more than one month, the odds of G2D/G1D were 1.4 times higher compared to when the HCP delay was less than one month. When the patient had multi-bacillary type leprosy the odds of G2D/G1D at the time of diagnosis was nine times higher compared to pauci-bacillary type leprosy. CONCLUSION: Patient delay is the major reason for risk of disability (G2D/G1D) among adult leprosy patients. A patient delay of more than 3 months from the notice of first symptom is a significant indicator for the disabilities among adult leprosy patients. Early case detection campaigns like active surveys in endemic spots should be done periodically as this can reduce delays and promote early diagnosis. Additionally, the program should lay greater emphasis on raising community awareness regarding the disease. Also, health care provider delay of more than 1 month have been significant risk factors for disability among adult leprosy cases. Hence, periodical capacitation of all HCPs including private practitioners would significantly contribute to reduce diagnostic delay and promote timely referral and early detection.

Development and validation of a scale to assess attitudes of health care providers towards persons affected by leprosy in southern India.

INTRODUCTION: Assessment of attitudes of health care professionals is important as negative attitude could constitute a major deterrent to care-seeking by persons affected by neglected tropical diseases (NTDs) such as leprosy. Leprosy continues to pose a major disease burden in India with an annual new case detection rate of 10.17 per 100,000 population. This paper reports on the development and validation of a culturally appropriate scale to measure attitude of health care providers (HCPs) towards persons affected by leprosy in Tamil Nadu, India. METHODOLOGY/PRINCIPAL FINDINGS: The Affective, Behavioural and Cognitive (ABC) model of attitudes guided the development of the scale. Steps in scale development included qualitative interviews and focus group discussions with medical officers and paramedical staff selected from high prevalence districts in Tamil Nadu, India which informed the development of the draft scale. Reviews of existing attitude questionnaires in related areas further contributed to scale development and together helped to generate a large pool of items which was then subjected to Thurston's scaling method for selection of items from this pool. Face and content validity were obtained, following which internal consistency and test, re-test reliability were assessed. Scaling exercise resulted in 11 items being discarded from an initial pool of 38, owing to the poor agreement among experts regarding relevance. Face and content validity were good with experts endorsing relevance and applicability of items. The intra-class correlation coefficient (ICC) for test re-test reliability of the 27 item scale was 0.6 (95% CI: 0.20-0.78) indicating marginal intra-class correlation. The overall Cronbach's alpha was 0.85 while the alphas for each of the affective and behavioural components was good at 0.78 and 0.69 respectively indicating a good degree of consistency and homogeneity between items but the alpha for the cognitive component was low at 0.53. CONCLUSIONS: The ABC model of attitudes guided the development of the scale, ensured a mix of 27 items tapping into the three domains of Affect, Behaviour and Cognition which best explained the attitude construct. With good validity and alphas for each of the affective, behavioural components and overall alpha estimates, this scale can be a valuable tool to provide accurate estimates of the true attitudes held by HCPs. This, in turn, would be useful to obtain insights for appropriate intervention programmes that would help change negative attitudes of HCPs towards persons affected by leprosy. With some adaptations, the scales can be validated for other NTDs as well.

Epidemiological Perspective of National Leprosy Eradication Programme in Maharashtra: Focusing on "Tribal Hot-spot" of Tribal District.

BACKGROUND: Leprosy or Hansen's disease, a chronic infectious disease caused by Mycobacterium leprae is a serious public health concern because of associated case load, morbidity and stigma attached to it. India achieved elimination of leprosy as a public health problem (prevalence rate [PR]<1 case/10,000 population) at the national level on January 1, 2006, still 19% districts in the country report PR more than one. In Maharashtra, it is found that very few districts within the state or very few pockets within the district are actually having leprosy burden. OBJECTIVES: (1) Identification of region-wise actual "hot-spot" districts/pockets within state of Maharashtra.(2) Further drop-down below the district and block to tribal belt for understanding the actual high risk area/belt within the tribal districts. METHODS: Secondary data analysis of leprosy patients registered in the State during the period 2008-2015. RESULTS: PR per 10,000 was found more in Vidharbha region followed by rest of Maharashtra and then Marathwada. Analysis showed that, there are tribal districts and tribal area within tribal districts which are having higher leprosy burden as compared to the all other districts indicating need of allocation of programme funds and facilities to these tribal belts for the effective control and elimination of leprosy. CONCLUSION: National Leprosy Eradication Programme should focus on tribal belt for effective control. Without giving extra attention to these tribal areas within high risk district/pockets efforts of eradication of leprosy by 2018 would be unrealistic and impractical.

"I Wasted 3 Years, Thinking It's Not a Problem": Patient and Health System Delays in Diagnosis of Leprosy in India: A Mixed-Methods Study.

BACKGROUND: Worldwide, leprosy is one of the major causes of preventable disability. India contributes to 60% of global leprosy burden. With increasing numbers of leprosy with grade 2 disability (visible disability) at diagnosis, we aimed to determine risk factors associated with grade 2 disability among new cases and explore patients and providers' perspectives into reasons for late presentation. METHODOLOGY/PRINCIPAL FINDINGS: This was an explanatory mixed-methods study where the quantitative component, a matched case-control design, was followed by a qualitative component. A total of 70 cases (grade 2 disability) and 140 controls (grade 0) matched for age and sex were randomly sampled from new patients registered between January 2013-January 2015 in three districts of Maharashtra (Mumbai, Thane and Amaravati) and interviewed using a structured close ended questionnaire. Eight public health care providers involved in leprosy care and 7 leprosy patients were purposively selected (maximum variation sampling) and interviewed using a structured open-ended interview schedule. Among cases, overall median (IQR) diagnosis delay in months was 17.9(7-30); patient and health system delay was 7(4-16.5) and 5.5(0.9-12.5) respectively; this was significantly higher than the delay in controls. Reasons for delayed presentation identified by the quantitative and qualitative data were: poor awareness of leprosy symptoms, first health care provider visited being private practitioners who were not aware about provision of free leprosy treatment at public health care facilities, reduced engagement and capacity of the general health care system in leprosy control. CONCLUSIONS: Raising awareness in communities and health care providers regarding early leprosy symptoms, engagement of private health care provider in early leprosy diagnosis and increasing capacity of general health system staff, especially targeting high endemic areas that are hotspots for leprosy transmission may help in reducing diagnosis delays.

Leprosy trends at a tertiary care hospital in Mumbai, India, from 2008 to 2015.

BACKGROUND: Leprosy remains an important cause of preventable disabilities. After the advent of multidrug therapy, new leprosy cases have come down dramatically. Despite this achievement, India, which contributes 60% of the global leprosy burden, faces some challenges to eliminate the disease, including active transmission in the community and delayed diagnosis of leprosy patients. OBJECTIVES: The objectives of the study were 1) to determine sociodemographic and clinical characteristics of newly diagnosed adults and children (less than 15 years) with leprosy and their trends over time (2008-2015) and 2) to describe the profile of surgical procedures among leprosy patients registered for reconstructive surgeries during 2006-2015. DESIGN: Retrospective descriptive study was conducted involving a record review of new patients with leprosy registered in Vimala Dermatological Centre, Mumbai. RESULTS: A total of 578 new leprosy cases were registered in the hospital during 2008-2015. There has been a steady increase in the trend of child cases (less than 15 years) registered in the facility (from 3% in 2008 to 18% in 2015), x2=12.11, p<0.01. The majority of the patients (68%) were migrants of Uttar Pradesh and Bihar. CONCLUSIONS: Targeting children and migrants and ensuring early diagnosis and treatment initiation are essential components for leprosy elimination in an urban metropolis in India.