Quality of life in patients on permanent home parenteral nutrition

A psychosocial survey of patients on permanent home parenteral nutrition (HPN) has been made to assess the quality of life in these patients. All patients on permanent HPN in the period August 1978 to August 1979, including 7 women and 6 men, age range 24-62 yr (median 53) were interviewed, as well as partners of 11 patients who were married or cohabiting. The duration of HPN ranged from 2-43 mon (median 24 mon). They were asked specific questions about physical symptoms, social and leisure activities, interpersonal relationships, sexuality, psychological problems, and feelings about HPN. None had an outside job, but 6 (46%) did most of the housekeeping. Some physical distress was recorded in almost all patients, but 9 (69%) considered themselves healthy or fairly healthy, whereas 4 (31%) felt diseased. Social and leisure activities were normal or only slightly impaired in most. Sexual activity had ceased completely in 5 above 55 yr, in association with onset of the disease; younger patients displayed normal and unchanged sexual activity. Psychological symptoms were recorded in 6 (46%), major symptoms in 4 (31%). Seven partners considered HPN to be a moderate or severe burden, mainly psychological changes in the patient that caused marital tension in 3 cases. Criteria for quality of life were: 1) no major physical distress, 2) no major psychological symptoms, 3) no substantial restriction of social and leisure activities, 4) ability to accept HPN, 5) overall satisfaction with conditions of life. Nine patients who fulfilled at least 3 of these criteria were considered to have a fair quality of life, 4 who complied with less than 3 of the criteria a poor quality of life. The interviews were repeated at intervals of 6-10 mon in 9 patients, and revealed no systematic improvement or deterioration of quality of life during HPN.