BackgroundThe two pediatric cystic fibrosis centers (CFCs) in Paris (Robert Debré) and Nantes, France, have been developing therapeutic patient education (TPE) programs since 2006 and have been engaged in the pilot phase of the quality improvement program (QIP) named the Hospital Program to Improve Outcomes and Expertise in Cystic Fibrosis (PHARE-M) since 2011. The objective was to improve the FEV1 of the cohort of adolescents to prepare them for their optimal transition to an adult CFC.MethodsThe two CFCs formed a multidisciplinary quality team and used the analysis of causes of insufficient respiratory function taking into account the adolescents’ psychosocial factors. At the Nantes CFC, the approach was centered on adolescents’ body image and their motivation to take care of themselves by assigning specific aspects of patient follow-up to each professional in the team. At R. Debré, an individual cause-and-effect diagram identified for each patient the medical and psychosocial factors that could account for insufficient respiratory function. Personalized actions were offered to each patient.ResultsIn 2014, the median FEV1 (Forced Expiratory Volume in 1 Second) of the adolescent cohort exceeds 90% at the 2 CFCs (Nantes and R. Debré). Between 2011 and 2014 both centers improved their ranking for FEV1% in adolescents in the Registry histograms. At R. Debré, the personalized process allowed to reinforce equality of care, offering to all the opportunity to benefit from TPE sessions and coaching with an adapted physical activity teacher. The psychologist developed a specific tool to support the patient-centered process.ConclusionThe link between TPE and QIP was strong at our two centers enhancing patient centered care and targeting an optimal transition to an adult program.
Introduction: Too often neglected to the detriment of therapeutic patient education (TPE), emotions occupy a fundamental place in pedagogy. They deserve to be explored more deeply. Objective: This empirical, qualitative study tests the feasibility of a new technique to elicite and highlighten emotions liked to knowledge organization. Methods: In this study, the patient creates a structure referred to as a "concept map/emotion map" (CM-EM) starting from a concept mapping activity. The emotion map is composed of symbols and colors. The technique is tested on 13 adolescents ranging from 11 to 15 year old, with a range of pathologies (cystic fibrosis, diabetes, asthma). The patients are treated in various health care facilities in the city of Nantes. The opinions of patients and observers are solicited to identify the advantages and limitations of this method. Results: The maps themselves and interviews with adolescents and caregivers show the effectiveness of the method for revealing the patients' emotions patients. We also describe its educational limitations. Conclusion: At this stage of the study, the CM-EM permits a patient to better understand the emotions evoked by his/her illness, and to communicate to the caregiver the nature and intensity of his/her emotions linked to his/her knowledge organization. In return, and this is a new hypothesis, eliciting and highlighting emotions could modify the knowledge organization.
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