Two HIV/AIDS community support teams: patient characteristics, problems at referral and during the last 6 weeks of life

Abstract

Following the debate over the role and funding of specialist HIV/AIDS services there has been a call for more information about the needs of people with advanced HIV/AIDS and the processes and outcomes of care. This study describes the characteristics and problems of patients referred to two HIV/AIDS community teams in central London: Home Support Team (HST) and Community Care Team (CCT). Data was collected prospectively for consecutive referrals. A validated outcome measure of palliative care assessed 17 items (e.g. symptoms and anxieties), each rated 0 (best = no problem) to 4 (worst = severe problems). In total 234 patients (HST 116, CCT 118) were referred. Of these 215 died in care (HST 109, CCT 106). Most (232) were male (197 homosexual), mean age 37.8 years and 199 had AIDS at referral. Main sources of referral to HST were hospital ward rounds or nurses (51%); and to CCT genito-urinary medicine clinic staff (59%). Patients were referred to CCT much later in the course of their disease and spent a significantly shorter time in care (median time: HST 42 weeks, CCT 9.5 weeks). Symptom control, family anxiety and patient anxiety were identified as severe problems for 11%-58% of patients in the care of both teams. During the last 6 weeks of life HST patients' ratings for symptom control and family anxiety became more severe compared with CCT, where patients' ratings for four items improved. These findings suggest that staff referring patients may need further training in the recognition and management of the needs of patients and their carers and families. The similarity of problems between these patients and those reported for cancer patients suggests that the transfer of principles of good practice between services caring for these patient groups would be beneficial.