Perception of social exclusion, neuropathy, and quality of life among Hansen's disease patients.

BACKGROUND: Leprosy subjects are strongly affected not only by physical issues such as peripheral neuropathy but also by massive social exclusion that may be related to quality of life (QoL) impairment. However, there are as yet no studies evaluating the impact of perceived stigma in conjunction with neuropathy on QoL and the respective role of each one on QoL. OBJECTIVE: The present study aims to investigate the variations in clinical and socio-demographic profile of Hansen's disease patients with/without perception of social exclusion (PSE) and neuropathy as the impact of both conditions on their QoL. METHODS: A sample of 160 consecutive leprosy outpatients seeking treatment in two reference centers for leprosy in Brazil was recruited. Patients were assessed using a socio-demographic questionnaire, M.I.N.I. PLUS and SF-36. Data from medical records were also collected. Participants were divided into four groups: control group, perceived stigma, neuropathy, and stigma neuropathy. RESULTS: Of the 160 patients who consented to participate, 78.75% completed the survey. All four groups were similar in terms of demographic parameters, except for occupational status, which was compensated statistically. The group with neuropathy and PSE reported the worst QoL in half of the evaluated domains. The cross-sectional design does not allow cause and effect to be established between variables, and the relatively small sample size may limit the ability to demonstrate a relative decrease in QoL scores from the isolated variables analyzed. CONCLUSIONS: The results of this survey show that the presence of both neuropathy and PSE significantly increases impairment in QoL, especially in some specific domains.

Unhealthy behaviours for self-management of HIV-related peripheral neuropathy.

The prevalence of peripheral neuropathy is frequent in HIV disease and is often associated with antiretroviral therapy. Unhealthy behaviours, particularly substance-use behaviours, are utilized by many HIV-positive individuals to manage neuropathic symptoms. As part of a larger study on self-care for symptoms in HIV disease, this study analyzed the prevalence and characteristics of unhealthy behaviours to self-manage peripheral neuropathy in HIV disease. Sociodemographic and disease-related correlates and unhealthy behaviours were examined in a convenience sample of 1,217 respondents who were recruited from data collection sites in several US cities, Puerto Rico, Colombia, and Taiwan. Results of the study indicated that respondents with peripheral neuropathy (n=450) identified a variety of unhealthy self-care behaviours including injection drug use, oral drug use, smoking cigarettes and alcohol ingestion. Specific unhealthy behaviours that participants reported to alleviate peripheral neuropathy included use of marijuana (n=67), smoking cigarettes (n=139), drinking alcohol (n=81) and street drugs (n=30). A subset of those individuals (n=160), who identified high levels of neuropathy (greater than five on a scale of 1-10), indicated significantly higher use of amphetamines and injection drug use in addition to alcohol use and cigarette smoking. For participants from Norway, substance use (using alcohol: 56%) was one of the most frequent self-management strategies. Implications for clinical practice include assessment and education of persons with HIV for self-care management of the complex symptom of peripheral neuropathy.