Cuerda Maria Cristina, Apezetxea Antonio, Carrillo Lourdes, Casanueva Felipe, Cuesta Federico, Irles Jose Antonio, Virgili Maria Nuria, Layola Miquel, Lizan Luis
Hospital General Universitario Gregorio Marañon, Madrid.
Organización Sanitaria Integrada Bilbao Basurto, Bilbao.
Patient Prefer Adherence. 2016 Nov 4;10:2289-2296. doi: 10.2147/PPA.S110188. eCollection 2016.
Home enteral nutrition (HEN) is indicated in patients with a functional gastrointestinal tract but who are unable to meet their nutritional requirements with normally consumed foodstuffs. HEN allows patients to remain in their social and family environment, thus reducing complications and costs associated with hospital admission, while increasing health-related quality of life (HRQoL). HRQoL in patients with HEN is mainly evaluated by generic instruments, which are not sensitive enough to identify certain specific patient-related outcomes of HEN.
To develop a specific instrument to measure HRQoL in patients receiving HEN whose results allow interpretation regardless of the underlying disease and nutritional support administration route: the NutriQoL questionnaire.
The development of the NutriQoL entailed a literature review, focus groups with experts, semistructured interviews with patients, an assessment of face validity and feasibility, and Rasch analysis conducted on data from a sample of 141 patients and 24 caregivers.
Of the 52 items initially proposed on the basis of the literature review, expert focus group, and semi-structured interviews with patients and caregivers, 17 items were finally selected through the development process to make up the final version of the NutriQoL, as well as a visual analog scale for global HRQoL scoring. The selected items were evaluated as adequate for frequency, importance, and clarity. Furthermore, they have been shown to be independent of the underlying condition and HEN administration route.
A new instrument for measuring the HRQoL of patients with HEN in Spain has been developed, whose results are independent of the underlying condition and administration route. The next step will be the validation of the questionnaire to ensure that the instrument is valid, reliable, and sensitive to health status changes in patients, to be used periodically in usual clinical practice.
家庭肠内营养（HEN）适用于胃肠道功能正常但无法通过正常饮食满足营养需求的患者。HEN使患者能够留在其社会和家庭环境中，从而减少与住院相关的并发症和费用，同时提高健康相关生活质量（HRQoL）。HEN患者的HRQoL主要通过通用工具进行评估，这些工具对识别HEN某些特定的患者相关结局不够敏感。
开发一种特定工具来测量接受HEN患者的HRQoL，其结果能够独立于基础疾病和营养支持给药途径进行解释：即NutriQoL问卷。
NutriQoL的开发包括文献综述、专家焦点小组讨论、对患者的半结构化访谈、表面效度和可行性评估，以及对141名患者和24名护理人员样本数据进行的Rasch分析。
在基于文献综述、专家焦点小组讨论以及对患者和护理人员的半结构化访谈最初提出的52个条目中，最终通过开发过程选择了17个条目，组成NutriQoL的最终版本，以及一个用于整体HRQoL评分的视觉模拟量表。所选条目在频率、重要性和清晰度方面被评估为合适。此外，它们已被证明独立于基础疾病和HEN给药途径。
已开发出一种用于测量西班牙HEN患者HRQoL的新工具，其结果独立于基础疾病和给药途径。下一步将是对该问卷进行验证，以确保该工具有效、可靠且对患者健康状况变化敏感，以便在日常临床实践中定期使用。
