A telephone support program for patients with home enteral nutrition contributes to nutrition status and quality of life maintenance and reduces health resource use

Author(s):  
Ana Cantón Blanco ◽  
Nuria López Osorio ◽  
Eva Gómez Vázquez ◽  
Maria Pilar Cao Sánchez ◽  
Soraya Ferreiro Fariña ◽  
...  
2016 ◽  
Vol 33 (6) ◽  
pp. 1260 ◽  
Author(s):  
Antonio Apezetxea ◽  
Lourdes Carrillo ◽  
Felipe Casanueva ◽  
Cristina Cuerda ◽  
Federico Cuesta ◽  
...  

Introduction: Health-related quality of life (HRQoL) provides a global view of the state of health of a patient receiving home enteral nutrition (HEN). Objective: To evaluate the HRQoL of patients receiving HEN using the NutriQoL® questionnaire, a specifi c instrument regardless of the underlying disease and route of administration.Materials and methods: Observational, prospective and multicentre study conducted in the context of the validation and assessment of the NutriQoL® questionnaire’s psychometric properties.Results: One-hundred-and-forty individuals [disease: cancer (58.6%), malabsorption and other (27.1%), neurological (13.6%); HEN: supplement (61.4%), sole source of nutrition (35.7%); administration route: oral (54.3%), ostomy (31.4%), nasoenteric tube (12.1%)] participated. NutriQoL® was reliable [ICC: 0.88 (95%CI: 0.80-0.93); Cronbach’s α: 0.77 (1st visit) and 0.83 (2nd visit)], valid (signifi cant Rho), lowly sensitive to changes (effect size 0.23), can be completed by either patients or caregivers (ICC: 0.82). The mean HRQoL (SD) with NutriQoL® was 14.98 (14.86), EQ-5D tariff: 53(0.25), EQ-5D VAS: 54.15 (20.64) and COOP/WONCA charts: 23.32(5.66). HRQoL with NutriQoL® was better (p < 0.05) for oral HEN [19.54 (13,23)], than nasoenteric tube [14(11.71)], ostomy [7.02 (15.48)]; administered orally [19.54 (13.23)], than by gravity [10.97 (14.46)], pump [8.5 (19.78)] or syringe bolus [7 (11.40)]; as a supplement [19.33 (13.73)] instead of sole source of nutrition [8.18 (14.23)].Conclusions: NutriQoL® is valid, reliable, even if lowly sensitive to change, and useful to measure HRQoL in this population. More studies are needed to know HRQoL in routine practice.


Nutrients ◽  
2019 ◽  
Vol 11 (12) ◽  
pp. 2968 ◽  
Author(s):  
Valeria Dipasquale ◽  
Marco Ventimiglia ◽  
Simone Maria Calogero Gramaglia ◽  
Barbara Parma ◽  
Caterina Funari ◽  
...  

We aimed to measure the health-related quality of life (HRQoL) of children with neurological impairment (NI) on home enteral nutrition (HEN). An original survey among the caregivers of NI children on HEN for ≥ 12 months followed in three Italian centers (Messina, Como and Varese) was carried out between January 2013 and September 2018. The questionnaire was made up of 12 issues focused on the frequency with which certain situations associated with HEN are perceived, and grouped into physical and psychological/social dimensions. The results were analyzed statistically according to the age of the children, underlying disease, and the HEN programs’ duration. In total, 80 caregivers were approached, and 75 surveys were completed (an overall response rate of 93.7%). Nearly all the caregivers reported a satisfying HRQoL, ranging from acceptable (n = 6, 8%), to good (n = 22, 29.3%), to excellent (n = 47, 62.7%). A significant correlation was found between HRQoL and underlying NI-associated disease (p = 0.001). Our data showed that HEN positively affects the QoL of NI children and their caregivers. This should encourage healthcare providers to consider this nutritional intervention early in the approach to this group of patients, in order to prevent or reduce QoL impairment.


Nutrients ◽  
2021 ◽  
Vol 13 (6) ◽  
pp. 1928
Author(s):  
Valeria Dipasquale ◽  
Marco Ventimiglia ◽  
Simone Maria Calogero Gramaglia ◽  
Barbara Parma ◽  
Caterina Funari ◽  
...  

We aimed to investigate the association between caregiver social status and health-related quality of life (HRQoL) in children with neurological impairment (NI) on home enteral nutrition (HEN). This was an ancillary study of a multicenter, cross-sectional study which explored HRQoL in 75 NI children on HEN. All the caregivers from the original cohort were contacted, and data on education level, occupation and marital status were collected. The association between social status and HRQoL was investigated using a multiple Poisson Generalized Linear Model. In total, 93 caregivers were included, responsible for the care of 71 children. The caregivers of four children of the original cohort did not answer the questionnaire. Mothers with high-level education presented lower HRQoL in comparison to mothers with low-level (β: −5.97; 95% CI −11.51, −0.10; p = 0.027) or medium-level education (β: 4.85; 95% CI −9.87, 0.53; p = 0.044). The analysis of the subgroup of cases in which the main caregiver was represented by both parents gave similar findings, with education level of the father being negatively correlated with HRQoL. Our data showed that higher education level may negatively affect quality of life of caregivers of NI children. This could be helpful in identifying at-risk families and addressing supportive efforts.


2000 ◽  
Vol 19 (1) ◽  
pp. 23-28 ◽  
Author(s):  
S.M. Schneider ◽  
I. Pouget ◽  
P. Staccini ◽  
P. Rampal ◽  
X. Hebuterne

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