Burden assessment in caregivers of patients with home artificial nutrition: a need and a challenge.

BACKGROUND/OBJECTIVES: Caregiving can be a stressful task with severe consequences on caregivers' health. Our aim was to evaluate the profile and the burden of caregivers of patients with home artificial nutrition (HAN) in our area. SUBJECTS/METHODS: We conducted a prospective observational study of patients who had started HAN over a period of a year (n=573) and their home caregivers (n=103). Epidemiological characteristics of the patients and the type of HAN were registered. Caregivers' profile data (gender, age and degree of kinship) and Zarit Burden Assessments were recorded. RESULTS: Care recipients had a median age of 79.0 (IQR 87) years, neurological and oncological diseases in 50% and a high rate of mobility limitations (80%). Oral supplements with high-calorie formulas were predominant (60%). The usual caregiver profile was a patient's daughter with a mean age of 53.1 (s.d. 13.4) years acting as the primary caregiver. Burden was absent in 49.5%, light in 18.4% and intense in 32% of caregivers. Intense burden was more frequent in oral over enteral nutrition (42% versus 22.6%; P=0.036). Supplementary nutrition was also associated with higher caregiver burden scores compared with complete diets. In patients with functional limitations, a tendency toward a slightly higher burden was observed. No differences in caregiver burden were detected according to other patient or caregiver characteristics. CONCLUSIONS: HAN type appears to be a factor influencing caregiver burden and therefore, evaluation of caregiver burden should be part of HAN programs.

Home artificial nutrition in a sanitary area of Galicia (Spain): descriptive study and proposals for the future.

OBJECTIVES: Home artificial nutrition (HAN) is a technique in increasing use, but the available data about it is limited because record-keeping in most countries is voluntary. Our objective is to describe the characteristics of HAN in our setting and to design a future proposal that improves its coordination. SUBJECTS: Retrospective review of 237 clinical histories of the patients who began with HAN in 2006 in our unit. VARIABLES: epidemiological information, indications, type of HAN, duration, complications and costs. RESULTS: Mean age: 75.4 years. Neurological and neoplasic diseases were the most frequent diagnoses (39.7% and 32.1%, respectively). Main indications were: reduction of ingestion (41.8%) and neurological dysphagia (27.8%). 48.1% presented an important functional impairment and 63.7% needed a caregiver. HAN duration was < 3 months in 43.9% and the principal cause of suspension was the lack of follow-up. Oral nutrition was the preferred route (70.9%), gastrostomy was found in only 3.4%. High-energy formulas were mostly used in patients with supplements (53.3%) and standard formulas in those with complete diets (32.4%). Complications related to this therapy were low, mainly in the oral route. The most frequent were gastrointestinal (19.3%). Mean monthly cost: 159.3 euros/patient and an average travel distance of 26 km to pick up supplies. CONCLUSION: HAN is a safe, short-term therapy, indicated in patients with diminished ingestion due to an acute situation. Our future proposal tries to improve the selection of patients, to facilitate the provision of materials and to customize follow-up to patient needs.