Preferencias por los atributos de la nutrición enteral domiciliaria (NED) en España. ¿Conocen los cuidadores las preferencias de los pacientes?

Abstract

Introduction: Establishing a home enteral nutrition (HEN) that is adapted to the patient’s needs and preferences can improve their quality of life and adherence, contributing to a higher treatment efficiency, better prognosis and cost reduction. As in most cases, patients need total or partial help from their caregivers, and there is a need for evaluating how well do caregivers know their patients’ priorities. Objectives: Exploring patients’ preferences for HEN characteristics in Spain, and the concordance between patients and caregivers. Methods: A cross-sectional observational study based on the discrete choice experiment methodology. A set of eight choice scenarios generated from six attributes with two levels each was presented along with an ad hoc questionnaire on the importance and satisfaction with HEN. The relative importance (RI) of each attribute and the patient-caregiver concordance was estimated in every question. Results: One hundred and forty-eight patients participated, and in 77 cases both the patient and the caregiver took the survey. The most important attributes (RI) for HEN were adaptation to comorbidities (33%), tolerability (33%), nutrients and calories (26%) and package characteristics (8%). Patients showed a high degree of satisfaction with the assistance received. Concordance between patient and caregiver was found in every question, being it moderate to good. Conclusions: According to patients, an ideal HEN product would be adaptable to comorbidities, easy to tolerate, providing the necessary nutrients and calories, with an easy to handle package. Caregivers know well their patients’ preferences.