Full project title:
Delays in diagnosis and treatment, Leprosy in Nepal
Project coordination
International Nepal Fellowship
Aim: ‘Delays’ are of critical importance in leprosy control work. The longer the delays, the greater the chance for a transmission of the disease to others and for lasting negative consequences upon the life of the individual: physically, socially, emotionally and economically. The aim of the project has been to learn about delays in leprosy diagnosis and treatment among leprosy patients in western Nepal.
Final project summary
The routes to an accurate diagnosis had generally been long, frustrating, and costly, more so in the north than in the south. The exceptions are the routes of those with a household member recently on MDT, those who in an early stage happened to have come upon one of the INF Out-patient clinics for what they up till then thought to be a skin problem, and of those whose early signs were identified in a case-finding campaign. The mean delay in the 3 cohorts was found to be: 25.2; 29.8; and 28.1 months, respectively with no greater gender difference.
In Nepal, active leprosy case finding is taking place but on a limited scale and the great majority of patients present voluntarily. Health workers tend to blame the long delays on the patients, commonly suggesting that those affected delay because of the leprosy stigma. The ‘patient delays’ were long nevertheless they only corresponded to half or less than half of the mean cohort delays. For most of the respondents the main part of the delay was after the start of health-seeking outside the home, i.e. within the health services: traditional; private; and public. Commonly, there were misdiagnoses and inappropriate treatments concurrently with a progression of ill health, fear, and expenditures. The longest mean delay was after the start of health-seeking within the biomedical sector - including private as well as public health amenities. Most consultations, by far, took place within the private health services. Commonly, the first visit within the private sector was a local pharmacy, sometimes visited once, sometimes several times. For most, the initial step within the public (government) health services was a visit to a Health Post or a Sub-Health Post. At the same time, in each cohort a large proportion of the respondents reported that their health-seeking had not included a government health facility.
For leprosy to be eradicated delays have to be shortened. In regard to voluntary presentations this will only be accomplished as patterns of health seeking are understood and taken into account for interventions. As this study shows, increased leprosy diagnostic skills within the public (government) health services will not suffice but have to go together with leprosy capacity building within the private health services. Moreover, such efforts have to run parallel to context-sensitive leprosy awareness-raising within society as a whole.
Impact
Factors contributing to delay in diagnosis and start of treatment of leprosy: analysis of help-seeking narratives in northern Bangladesh and in West Bengal, India. Nicholls P G, Chhina N, Bro A K, et al. Leprosy review. 2005; 76 (1) : 35-47.
Stigma and leprosy presentations, Nepal. Engelbrektsson U, Subedi M. Leprosy review. 2018; 89 (4) : 362–369.
The challenge of health-seeking: recollections of leprosy inpatients in post-elimination Nepal. Engelbrektsson U, Subedi M, Nicholls P. Leprosy review. 2019; 90 (4) : 433–443.
Health Seeking Processes of Leprosy Patients in a Hill District of Nepal. Engelbrektsson U, Subedi M. AMC Journal. Nepal Journals Online (JOL). 2021; 2 (1) : 1-24.
Presentation at the 3rd Nepal Health Research Council Summit in Kathmandu, at an International Conference in Pokhara organised by Nepal Sociological Association (2017), and at the National Annual Leprosy Report Meeting, Kathmandu (2019).
Report-sharing workshops/sessions in Surkhet, Nepalgunj, Pokhara, and Butwal, the national board of IDEA Nepal included and the District TB/leprosy officers.
Printed prototype information material for the shortening of delays for the following target groups:
The General Public - Nepali, Hindi, Awadhi, Tharu
Patients and Family members – Nepali
Female Community Health Volunteers – Nepali
Health Workers who refer for diagnosing – Nepali
Health Workers who diagnose Leprosy – Nepali