Changing clinical needs of people living with AIDS and receiving home based care in Malawi - the Bangwe Home Based Care Project 2003-2008 - a descriptive study

Abstract Background Home based care (HBC) has been an important component of the response to the AIDS epidemic in Africa, and particularly so before antiretroviral therapy (ART) became available. Has HBC become unnecessary now that ART is available in many African countries? One way to investigate this is to assess the changing need for comprehensive HBC as an ART programme becomes available. The Bangwe HBC programme in Malawi has been collecting data since 2003 before ART became available in 2005/6. Has the introduction of ART changed the clinical needs for HBC? Methods Information obtained at initial assessment and follow up visits of patients receiving HBC were combined to assess case severity, survival and the response to treatment. This information was used to assess trends in mortality and the incidence, duration and severity of common symptoms over a six year period in a defined urban population in Malawi. Results 1266 patients, of whom 1190 were followed up and of whom 652 (55%) died, were studied. 282 (25%) patients died within two months of being first seen with an improvement between 2003-2005 and 2006-2008 of reduced mortality from 28% to 20%. 341 (27%) patients were unable to care for themselves on first assessment and 675 (53%) had stage 4 AIDS disease. Most patients had a mix of symptoms at presentation. Self care increased somewhat over the six years although case severity as measured by WHO staging and nutritional status did not. 350 patients were on ART either started before or after initial assessment. There were significant barriers to accessing ART with 156 (51%) of 304 stage 3 or 4 patients first assessed in 2007 or 2008 not receiving ART. Over the six year period new HBC cases reduced by 8% and follow up visits increased by 9% a year. Between 4 and 5 people sought HBC for the first time each week from an urban health centre catchment of 100,000, which required 37.3 follow up visits each week. Conclusions Since the availability of ART in the local health facilities and despite strenuous efforts to persuade people to seek HIV testing and ART, in practice barriers existed and half the eligible HBC patients did not have access to ART. This is one reason why the clinical need for HBC services had not changed much. In terms of quantity of care the number of new patients seeking HBC reduced by 8% a year. In terms of content of care, while there had been a marginal increase in self care the severity of illness had not changed and the survival of a significant proportion of patients generated the need for repeat visits, which increased by 9% a year. In conclusion, although the content has changed the need for HBC has not diminished despite the availability of ART.