Culture and 'compliance' among leprosy patients in Pakistan

In Pakistan approx. 30% of the 18,000 known leprosy patients have dropped out of their treatment programs. To investigate reasons for such widespread noncompliance, 128 diagnosed leprosy patients--59 outpatients and 69 inpatients--were interviewed in Karachi. More than half of the 'noncompliant' outpatients denied having the disease. Denial was found to be an understandable coping mechanism in view of the severe stigma associated with leprosy. The presence of close-knit extended families, in which joint decision-making was the norm and in which such a dread diagnosis could spel the end of job and marriage prospects for even distant relatives, contributed to the likelihood of denial. In such a setting, the very term 'noncompliant' appeared to be an oversimplification since it covered so many different types of culturally-constrained behavior. In addition, many of the patients who initially seemed most 'compliant' by virtue of being long-term hospital inpatients in fact owed their hospitalization to the fact they had been markedly noncompliant in the past. Thus the usual view that adherence to a biomedical treatment regimen constitutes 'compliance' and that nonadherence to such a regimen constitutes 'noncompliance' proved inadequate for understanding the health behavior of these Third World leprosy victims. The study also showed that many patients had initially consulted traditional healers, inadequately-trained physicians, and/or untrained medical practitioners for treatment of their symptoms, which resulted in lengthy delays before they were correctly diagnosed. Further, even after the diagnosis was made and appropriate medications were prescribed by trained personnel, most patients were not told what had caused their leprosy and how the drug regimen worked to combat it: when questioned, only 4% of the 128 respondents attributed the disease to infectious organisms. In addition, patients were usually not warned in advance of the possibility of undesirable side effects from their leprosy medications, which led to further 'compliance' problems. The findings of this study emphasize the need for better training of physicians and other health care providers in early diagnosis of leprosy and better health education of diagnosed patients. To be truly effective, the treatment of leprosy must include counseling of extended families and education of the public at large as well as enhanced communication with the patients themselves.