Effectiveness of a Decision Aid for Parents/Caregivers of Children Needing Enteral Support

Speaker(s)

Rivero C1, Vives I2, Moreno A3, Rodriguez A4, Blasco J5, Cañedo E6, de la Mano A6, Germán M7, Redecillas SE8, Comellas Serra M9, Layola M10, Aceituno Mata S11
1Hospital Universitario Virgen Macarena, Sevilla, Sevilla, Spain, 2Hospital Clínico Universitario Virgen de la Arrixaca, Murcia, Murcia, Spain, 3Hospital Universitario da Coruña, A Coruña, Coruña, Spain, 4Hospital Universitario Virgen del Rocío, Sevilla, Sevilla, Spain, 5Hospital Universitario Materno Infantil, Malaga, Malaga, Spain, 6Hospital Universitario Niño Jesús, Madrid, Madrid, Spain, 7Hospital Universitario 12 de Octubre, Madrid, Madrid, Spain, 8Hospital Universitario Vall d' Hebrón, Barcelona, Barcelona, Spain, 9Outcomes'10, Castellon de la plana , CS, Spain, 10Nestle Health Science, Barcelona, Spain, 11Outcomes'10, Castellón de la Plana, CS, Spain

Presentation Documents

OBJECTIVES: Making the decision to begin nutrition support and choosing an adequate strategy for pediatric patients is challenging. A specific decision aid (DA) has been elaborated, following International Patient Decision Aids Standard recommendations, to support parents/caregivers and healthcare professionals in making collaborative home enteral nutrition (HEN) decisions. We aim to assess the effectiveness of this DA in reducing parents'/caregivers' decisional conflict and increasing their readiness for decision-making.

METHODS: A pre-post beta-test study was conducted in eight Spanish hospitals. Before and after DA use, parents/caregivers completed the Decisional Conflict Scale (DCS). DCS measures personal perception of uncertainty in choosing options (uncertainty subscale), assesses the knowledgment of options: risks, benefits, and consequences (informed), measures clarification about what matters most for the decision (values clarity), determines decision-making support (support) and provides the perception about the consistency between the choice made and the informed values (effective decision). Scores range from 0 (no decisional conflict) to 100 (extremely high decisional conflict). Paired comparisons were performed between the scores obtained before and after PDA use.

RESULTS: A total of 38 parents/caregivers [mean age: 37.64 (SD:7.70); 73% female] of children [mean age: 3,48 (SD:3,68) years; 52.6% boys; HEN required due to dysphagia/safety (57.9%), special energy/nutrient requirement (47.4%) or severe malnutrition (26.3%)] participated.

Results of beta-testing showed that PDA use reduced overall scores of DCS (21.92 vs. 18.23; p=0.4702) and all subscales: uncertainty (37.88 vs. 26.77; p= 0.0693), informed (21.72 vs. 18.18; p= 0.6023), values clarity (21.21 vs. 18.94; p= 0.7076), support (11.87 vs. 13.89; p= 0.6739) and effective decision (18.18 vs. 14.58; p=0.5162).

CONCLUSIONS: The DA developed to support HEN decision-making in pediatric patients reduces parents'/caregivers' decisional conflict and increases their preparation for decision-making. Using this DA in routine clinical practice may promote shared-decision and improve the quality of the decision-making process.

Code

PCR210

Topic

Patient-Centered Research

Topic Subcategory

Instrument Development, Validation, & Translation, Patient Engagement

Disease

Nutrition, Pediatrics