An innovative educational program for adolescents on home parenteral nutrition for the “transition” to adulthood

• Published in: JPGN reports 2024-05, Vol.5 (2), p.126-134
• Main Authors: Goulet, Olivier, Payen, Elise, Talbotec, Cécile, Poisson, Catherine, Rocha, Amelia, Brion, Karina, Madras, Marie‐Bernadette, Eicher, Isabelle, Martinez, Isabelle, Bégo, Clémence, Chasport, Céline, Ollivier, Julie, Godot, Cécile, Villain, Claude, Joly, Francisca, Lambe, Cécile
• Format: Article
• Language: English
• Subjects: adolescence; intestinal failure; Original; parenteral nutrition; quality of life; self care management
• ISSN: 2691-171X; 2691-171X
• DOI: 10.1002/jpr3.12033

Facing with an increasing demand for transition to adult care management, our home parenteral nutrition (HPN) team designed an adolescent therapeutic educational program (ATEP) specifically intended for adolescents on long‐term HPN. The aim of this study was to report on the first sessions of this program. Methods The ATEP is designed in three sessions of five consecutive days, during school holidays over the year. It includes group sessions on catheter handling, disconnecting and connecting the PN and catheter dressing, dealing with unforeseen events (e.g., fever or catheter injury), but also sessions with psychologist, social worker, sports teacher, fashion specialist, meeting with adults who received HPN since childhood. Specific course for the accompanying parents were also provided. Six months after the last session, a 3‐day trip to the attraction park “le Futuroscope,” Poitiers, France, was organized without any parental presence. Results After 3 ATEP courses, a total of 16 adolescents have been enrolled. They were aged between 13 and 17 years (median 14 IQR: 14–16.25). All were on long term HPN started during the neonatal period except for four who started PN at a median age of 10 years old (IQR: 1–10). At the time of the ATEP, their median PNDI was 105% (IQR: 95.5–120.8) while receiving a median of six infusions per week (IQR: 5–7). Thirteen received Taurolidine lock procedure. After the ATEP, 11 adolescents could be considered as fully autonomous, 4 as partially autonomous and one failed to gain any autonomy. Course evaluation by adolescents or parents was good to excellent. Conclusion Through the holistic and multiprofessional approach of this training and the group cohesion, the adolescents were not only able to handle catheter care and PN connections but were able to understand and accept better their illness and project themselves into their own future. What is Known Home parenteral nutrition (HPN) is the corner stone for the management of infants, children and adolescents dependent on long term PN for chronic intestinal failure (CIF). Long term outcome of some adolescents with severe CIF requires their transfer to adult medical care through the process of “transition.” The “transition” process to adulthood is very specific and requires a multiprofessional approach. What is New An adolescent therapeutic educational program allowing the adolescents to become aware of their disease and their dependence, to take care of themselves, to become auto