"Home is where the patient is": a qualitative analysis of a patient-centred model of care for multi-drug resistant tuberculosis.

BACKGROUND: Ambulatory, community-based care for multi-drug resistant tuberculosis (MDR-TB) has been found to be effective in multiple settings with high cure rates. However, little is known about patient preferences around models of MDR-TB care. Médecins Sans Frontières (MSF) has delivered home-based MDR-TB treatment in the rural Kitgum and Lamwo districts of northern Uganda since 2009 in collaboration with the Ministry of Health and the National TB and Leprosy Programme. We conducted a qualitative study examining the experience of patients and key stakeholders of home-based MDR-TB treatment. METHODS: We used semi-structured interviews and focus-group discussions to examine patients' perceptions, views and experiences of home-based treatment and care for MDR-TB versus their perceptions of care in hospital. We identified how these perceptions interacted with those of their families and other stakeholders involved with TB. Participants were selected purposively following a stakeholder analysis. Sample size was determined by data saturation being reached within each identified homogenous category of respondents: health-care receiving, health-care providing and key informant. Iterative data collection and analysis enabled adaptation of topic guides and testing of emerging themes. The grounded theory method of analysis was applied, with data, codes and categories being continually compared and refined. RESULTS: Several key themes emerged: the perceived preference and acceptability of home-based treatment and care as a model of MDR-TB treatment by patients, family, community members and health-care workers; the fear of transmission of other infections within hospital settings; and the identification of MDR-TB developing through poor adherence to and inadequate treatment regimens for DS-TB. CONCLUSIONS: Home-based treatment and care was acceptable to patients, families, communities and health-care workers and was seen as preferable to hospital-based care by most respondents. Home-based care was perceived as safe, conducive to recovery, facilitating psychosocial support and allowing more free time and earning potential for patients and caretakers. These findings could contribute to development of an adaptation of treatment approach strategy at national level.

Quality of life of leprosy sequelae patients living in a former leprosarium under home care: univariate analysis.

INTRODUCTION: Quality of life (QoL) is a broad concept that has become more important during the last decades. Despite this fact, few studies have been conducted to evaluate leprosy patients, none of which has specifically addressed patients with leprosy sequels submitted to home care. PURPOSE: To evaluate the QoL of leprosy sequel bearers and the factors that may affect their perception of their condition. METHODS: WHOQoL-BREF, a questionnaire developed by the World Health Organization, was administered to 32 people living in the coverage area of a former leprosarium. Patient socio-demographic and care-related caregiver data were collected. Activities of daily living and Instrumental Activities of Daily Living Scales were used to evaluate autonomy. Mini-Mental Status Examination was used to evaluate cognitive status. Simple linear regression analyses were conducted using SPSS Statistical Software and the non-standardized beta values were presented. RESULTS: The patients were mainly female, widowed, elderly, with bone sequels; all had impairment of at least one Instrumental Daily Living Activity. QoL scores were 12.35 in a 4-20 scale (52.18 %) in the physical domain, 12.95 (55.94 %) in the psychological health domain, 13.18 (57.40 %) in the environment domain, and 16.09 (75.56 %) in the social domain. Univariate analysis suggests that instrumental daily activity "capacity of shopping," marital status, and caregiver age were associated with self-perceived QoL. Data were also compared to those from other studies. CONCLUSION: Individuals affected by leprosy had low QoL scores in the physical and psychological health domains and high scores in the social domain. The factors that impact their QoL seem to be related to specific conditions found in the leprosarium and the previous isolation practices.

Ethical issues in infection control in home care.

The history of infection control is ancient and inextricably bound to the histories of disease, medicine, and nursing. This history reveals the beliefs about the cause of infectious disease through time and the remedies enacted in response. Implicit in this history is an ethical history reflecting the relationship of the infected individual to the group and the power of the state to institute protective measures. In the Middle Ages, for example, a requiem mass or mass for the dead was held for lepers in which the church was draped in black and dirt thrown on the lepers' head. Afterward, they were lead to the leprosaria and given a rattle they were required to use to warn others of their approach.

Results of long-term domiciliary dapsone (DDS) monotherapy for lepromatous leprosy in Gudiyatham Taluk, South India.

At the Schieffelin Leprosy Research and Training Centre, Karigiri, India, data were assembled on all 58 living patients with lepromatous leprosy residing in Gudiyatham Taluk who had been registered in 1960 or earlier. They had received domiciliary oral DDS monotherapy for greater than 20 years. Fifty-one of the 58 patients were currently smear negative and clinically inactive. Patients with a Bacterial Index that had at some time been greater than or equal to 2+ were currently found smear positive more frequently than the remaining patients.

Evaluation of "chemical isolation" in 1,168 leprosy patients' homes.

"Chemical isolation" (treatment of open cases as a measure of control for transmission between contacts) is evaluated by a retrospective study of 7,232 household contacts of 1,168 leprosy patient homes. Contacts comparable in age and type of exposure were arranged in subgroups according to whether they were born before (Group A) or born after (Group B) beginning treatment of the index cases had begun. Additionally, the whole group of contacts, both of open (LL & BB) and closed (TT & I) cases were evaluated. Among comparable contacts of LL and BB cases, the infection rate in the contacts before initiation of treatment is higher than in that of contacts after initiation of treatment. The protection afforded by the treatment to the exposed group (Group B) is on the order of 66%. The morbidity occurring in the group born after the initiation of index case treatment apparently results from partial persistence of infectiousness of the case under treatment.