Apezetxea Antonio, Carrillo Lourdes, Casanueva Felipe, Cuerda Cristina, Cuesta Federico, Irles José Antonio, Virgili María Nuria, Layola Miquel, Lizán Luis
Nutr Hosp. 2016 Nov 29;33(6):1260-1267. doi: 10.20960/nh.769.
Health-related quality of life (HRQoL) provides a global view of the state of health of a patient receiving home enteral nutrition (HEN).
To evaluate the HRQoL of patients receiving HEN using the NutriQoL® questionnaire, a specific instrument regardless of the underlying disease and route of administration.
Observational, prospective and multicentre study conducted in the context of the validation and assessment of the NutriQoL® questionnaire's psychometric properties.
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 (significant 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)].
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.
健康相关生活质量（HRQoL）提供了接受家庭肠内营养（HEN）患者健康状况的整体视图。
使用NutriQoL®问卷评估接受HEN患者的HRQoL，这是一种独立于潜在疾病和给药途径的特定工具。
在对NutriQoL®问卷的心理测量特性进行验证和评估的背景下开展的观察性、前瞻性多中心研究。
140人参与研究[疾病：癌症（58.6%）、吸收不良及其他（27.1%）、神经系统疾病（13.6%）；HEN：补充营养（61.4%）、唯一营养来源（35.7%）；给药途径：口服（54.3%）、造口术（31.4%）、鼻肠管（12.1%）]。NutriQoL®可靠[组内相关系数（ICC）：0.88（95%置信区间：0.80 - 0.93）；克朗巴哈系数（Cronbach's α）：首次访视为0.77，第二次访视为0.83]、有效（显著的Rho值）、对变化敏感性低（效应量0.23），患者或照料者均可完成（ICC：0.82）。使用NutriQoL®测得的HRQoL均值（标准差）为14.98（14.86），EQ - 5D指数：53（0.25），EQ - 5D视觉模拟量表（VAS）：54.15（20.64），COOP/WONCA图表评分：23.32（5.66）。口服HEN患者使用NutriQoL®测得的HRQoL[19.54（13.23）]优于鼻肠管给药患者[14（11.71）]、造口术给药患者[7.02（15.48）]；口服给药患者[19.54（13.23）]优于重力滴注给药患者[10.97（14.46）]、泵注给药患者[8.5（19.78）]或注射器推注给药患者[7（11.40）]；作为补充营养时[19.33（13.73）]优于作为唯一营养来源时[8.18（14.23）]。
NutriQoL®有效、可靠，即使对变化敏感性低，且可用于测量该人群的HRQoL。需要更多研究以了解常规实践中的HRQoL。
