Assessing the symptoms, anxiety and practical needs of HIV/AIDS patients receiving palliative care

Abstract

We report the work of two community teams who care for people with AIDS/HIV related illness, the characteristics of patients referred, and the impact of the teams on four aspects of quality of life. Data was collected on 140 patients (85 St. Mary's Home Support Team, 55 Bloomsbury Community Care Team) who were referred to and remained in the care of these teams until death. All patients were male, mean age 37.9 years, 116 were homosexual. Most referrals were from genito-urinary medicine clinics (48%) or AIDS wards (41%). There was a wide range of reasons for referral. At referral 62% were in hospital and 35% at home. Mean time in care was 31 weeks 5 days. Fifty-seven per cent died in hospital, 22% at home and 21% in a hospice. The Support Team Assessment Schedule (STAS), consisting of 17 items of care, was used by the teams to measure aspects of quality of life. Throughout care until death four STAS items: pain control, symptom control, patient anxiety and practical aid are reported in detail. Symptom control was a commonly severe problem at referral and although the teams had some success in improving this item it remained a serious problem throughout care. Patient anxiety, also a commonly severe problem at referral, improved significantly throughout care. Pain control was less commonly severe at referral and improved significantly throughout care. Practical aid, in contrast, was rarely a severe problem at any stage of care.