Patients living with home enteral tube feeding: Side effects, health-related quality of life and nutritional care

Abstract

The aim of the study was to examine patients' perceptions of side effects, health-related quality of life (HRQL), general health, and nutritional care among patients receiving home enteral tube feeding (HETF) at two occasions after discharge from hospital. Three questionnaires, one study-specific, the Short Form 12 (SF-12) and the Health Index (HI), were sent to patients with HETF (n=62) twice, two weeks after discharge from hospital and two months later. Forty patients responded two weeks after discharge and out of these 29 patients also responded after two months. Data were collected in central Sweden from March 2006 to January 2010. Side effects were common at both points of data collection (70% of the patients after two weeks and 72% after two month). Patients using bolus feeding reported significantly fewer side effects than patients using intermittent feeding. HRQL and HI scores for the total group were low at both points of data collection. The bolus feeding group reported significantly higher physical HRQL and emotional HI than the intermittent feeding group did. Most patients were satisfied with the information and support they received from the health care team. This study has revealed that patients treated with HETF experienced side effects limiting their daily life to a great extent. Differences in HRQL related to feeding methods were found. Individualized support and regular controls are needed in order to meet patient needs. Bolus feeding may be a suitable feeding method to improve well-being.

Patient and Family Caregivers’ Experiences of Living With a Jejunostomy Feeding Tube After Surgery for Esophagogastric Cancer

“… 12 – 15 Quantitative survey data provide further evidence of the consequences of gastrostomy tube feeding, in terms of health-related quality of life, including the side effects that are experienced. 16 – 18 No studies to date have identified how patients manage a JFT postdischarge from the hospital. Furthermore, although the impact of home enteral nutrition (EN) on informal caregivers is reported to be burdensome, 19 – 21 how this is experienced by those caring for someone with a JFT remains largely unknown.…”

Rasch analysis in the development of the NutriQoL® questionnaire, a specific health-related quality of life instrument for home enteral nutrition

“…Previous studies have assessed the HRQoL on patients receiving HEN by means of the widely used generic questionnaires SF-12, EQ-5D or the SF-36 [ 6 , 7 , 9 – 11 ]. The SF-12 questionnaire was used to measure the HRQoL in patients with percutaneous endoscopic gastrostomy [ 7 ].…”

“…Several studies have assessed HRQoL in patients with HEN [ 6 – 11 ]. The majority of publications evaluated HRQoL using generic instruments such as EQ-5D, SF-12 and SF-36 [ 6 , 7 , 9 – 11 ].…”

“…Several studies have assessed HRQoL in patients with HEN [ 6 – 11 ]. The majority of publications evaluated HRQoL using generic instruments such as EQ-5D, SF-12 and SF-36 [ 6 , 7 , 9 – 11 ]. A major limitation of these tools is that in spite of providing an overall assessment of HRQoL and making it possible to compare results with other populations, they are too insensitive to establish and measure the influence of aspects directly related to HEN [ 4 , 6 ].…”

Perceived needs of patients and family caregivers regarding home-based enteral nutritional therapy in South Africa: A qualitative study

“…Reluctance to go out of the home environment may sometimes be combined with reluctance to express these psychological needs, which may sometimes be the reason for psychological and emotional burden not being identified or reported as low in some communities [36,40]. Bjuresäter [55] associate increased psychological needs with lacking preparation before discharge and lacking support at home causing insecurity and uncertainty.…”