Trapianto di fegato in tarda adolescenza e giovane età adulta e processo di transizione dal servizio pediatrico al servizio per adulti. Progetto pilota di strutturazione e implementazione di interventi educativi e strumenti di dialogo ad hoc: una esperienza condotta presso l'Azienda Ospedaliera - Università di Padova

Abstract

1. Introduction Coping with a chronic disease during emerging adulthood is challenging. The journey from adolescence to adulthood spans many years and may be delayed in young patients with chronic conditions, such as liver transplantation. Moreover, young patients are involved in a significant process of transition from the paediatric to adult care. The study is based on a theoretical framework that considers patient education as an empowerment process aimed to promote self-reflection and life skills through educational relationship and dialogue. 2. Aims The main aims of this study were: i) to explore the experience of transplantation and transition process ii) to create, implement and verify the effectiveness of targeted ad hoc educational measures and ad hoc dialogue tools in a group of young patients (late adolescence, young adulthood) who underwent liver transplantation. These educational interventions have been focused on: quality of life and adherence after liver transplantation, transition process from paediatric to adult care and independent management of health. 3. Study design The study consists in a pilot project with mixed methodologies. Patients have been randomized in experimental group (E) (involved in educational interventions) and control group (C) (not involved in educational interventions). 4. Materials and methods According to specific aims, different methodologies have been used: i) with regard to the analysis of experience of transplantation and transition process: a semi-structured interview has been performed for each patient. Interviews have been recorded, transcribed and then analysed considering emerging themes (Atlas.ti, 7.1.8); ii) considering the assessment of educational interventions' efficacy: a pre and post analysis has been conducted (before and after interventions). Patients filled in some questionnaires in order to evaluate: overall well-being: Satisfaction Profile (SAT-P); adherence: Morisky medication adherence scale (MMAS-4) and an ad hoc questionnaire concerning adherence after liver transplantation; patients' perceptions about their problem solving and decision making skills: (APSP); patients' perceptions about their health managing skills: ad hoc questionnaire. Data have been analysed using SPSS, 23. 5. Results The study has been conducted between July 2015 and October 2016. 14 young liver transplanted patients have been enrolled in the project. 8 (57,1%) were male; the mean age was 23,9 (±4,7) (range: 16-30). The mean age at transplantation was 8,7 (±7,2) (range: 1-25). Qualitative data: with regard to the three main topic (transplantation, autonomy and transition) some interesting suggestions emerged from the analysis. Transplantation has been frequently associated with the discussion about "identity". Patients expressed their difficulties in talking about transplantations; moreover, some problems have been expressed with regard to relationships with parents, concerning the management of health after transplantation. Autonomy has been expressed as a conflicting challenge between the desire to be independent (from every point of view) and the need to be protected. Quantitative data from the pre-test overall analysis: considering well-being (SAT-P) physical and social dimensions presented higher average (67±15,3 and 66±18,5 respectively) compared to psychological dimension, occupation and sleep and nutrition (60±18,7; 62,8±22,2 and 60,9±15,4 respectively). Considering MMAS, 30% of patients resulted non adherent. With regard to patients' perceptions about problem solving and decision making skills (APSP) results revealed a low mean score: 66±13,1. Quantitative data from the post-test analysis (E pre vs. E post; C pre vs. C post): considering well-being, data from the E post-test analysis revealed an improvement concerning mood (p<0,001), emotional stability (p<0,05) and self-confidence (p<0,05). An overall maintenance or improvement of adherence has also been observed in E. In C a general decrease of self-efficacy has been observed at post-test analysis (p<0,05). 6. Discussion Qualitative analysis revealed some critical issues related to the process of understanding and talking about the experience of transplantation among young patients. Quantitative data pointed out these problems concerning overall well-being (especially considering psychological dimension) as well as adherence and patients perceptions about their skills. These results are consistent with literature concerning this topic, revealing the presence of some difficulties in managing health after transplantation during this period of life, even considering transition process as a crucial developmental step toward independence. With regard to the implementation of educational measures, the comparison within the two groups at the pre-test and post-test analysis revealed some encouraging data. Educational interventions and dialogue tools can play a significant role in promoting self-reflection and the understanding process linked to transplantation. Moreover, educational dialogue (with specific dialogue tools) may be useful in order to foster an independent management of health after transplantation and during the transition process. 7. Conclusion This is a pilot study with a very small sample, so it is not possible to generalize data. Results are useful in order to guide future research on this field. Considering this first results, educational interventions and dialogue tools will be revised in order to implement the study in a larger cohort of young transplanted patients