L’allongement de la survie des patients et l’évolution des relations soignants–patients contribuent au développement de l’éducation thérapeutique du patient (ETP) en onco-hématologie, nécessaire notamment pour les patients adolescents et jeunes adultes (AJA) ayant une moindre observance et des difficultés organisationnelles dans leurs parcours de soins. La société savante « Go-AJA » a structuré un groupe de travail assurant la promotion et la structuration d’une démarche d’ETP adaptée aux AJA atteints de cancer.

Ce groupe de travail national a pu fédérer des équipes multidisciplinaires formées et engagées dans des actions éducatives auprès des AJA et s’est réuni périodiquement entre 2012 et 2015.

Un référentiel de compétence a été construit et adapté à la population des AJA atteints de cancer. Des outils ont été validés afin d’aider dans les 4 étapes classiques de l’ETP : le diagnostic éducatif, l’alliance thérapeutique, la mise en œuvre, et l’évaluation. Les compétences d’auto-soins ont été renforcées grâce à des ateliers individuels et/ou collectifs et le développement des compétences d’adaptation a été intégré à ce programme, afin d’améliorer la coordination et le vécu des thérapies.

Quels que soient les structures et lieux de soins, l’ETP doit s’intégrer dans la prise en charge des AJA en onco-hématologie afin d’améliorer leur implication et leur vécu de la maladie. Cette première expérience nationale mérite d’être poursuivie et confortée par des études évaluant plus précisément l’impact de tels programmes d’ETP intégrés au parcours de soins de ces patients AJA atteints de cancer.

Therapeutic education (TE) is a practice developed over 40 years at an international level to give people with chronic illness the skills necessary to help them better manage their disease. The lengthening survival time of cancer patients as well as changes in the patient–caregiver relationship have contributed to the development of TE in oncologic diseases. Every year in France, about 1900 adolescents and young adults (15–25 years old) are diagnosed with cancer which is the second leading cause of death in this age group. The observed survival rates for these patients are lower when compared with children's. Some of the hypotheses put forward to explain this difference include a lack of constancy in care and a non-following treatment, as failure to adhere to therapies is common in this age group. “Go-AJA”, an interdisciplinary national organization established in 2012, aims to improve the quality of care and treatment results for AYA living with cancer. Therapeutic education for AYA in oncology is an active working group of “Go-AJA” and intends to draw recommendations and to improve adapted communication on different education topics. Elaboration and preparation of TE programs by skilled multidisciplinary teams engaged in interactive educational actions is the first and most crucial step.

The TE “Go-AJA” working group has federated pediatric and adult oncologists, nurses, psychologists, TE professionals, and resource patients, thanks to the commitment of professionals from the 8 national teams supported by the National Cancer Institute. Physical meetings and conference calls were organized from 2012 to 2015 to construct TE tools and programs for AYA with cancer.

A competence referential was built and adapted to AYA population with cancer, after focused groups organized in 2 main oncology centers with on-therapy sarcoma patients and members of the multidisciplinary TE working group. Tools were validated and adapted to adolescents or young adults with cancer, to help in the 4 stages of TE: the “educational diagnosis” allowing the caregiver to better understand the patient in his life journey with the disease; the “therapeutic alliance” allowing to agree with the patient on his/her priorities; the “implementation” which is an action step: information, awareness, learning and psychosocial support. The final step called “assessment” allows the caregiver to take stock on the changes and difficulties with the patient. TE for AYA with cancer included individual and/or group sessions to improve self-care skills: knowledge about the disease (group sessions “what is cancer?” with use of microscopes to visualize sarcoma cells, and guided tours in a tumor research laboratory), and details about the treatment and its consequences (workshops about “management of febrile neutropenia”). Moreover, TE aimed to enrich the field of coping skills, in particular to improve the coordination and experience of cares between the different complex and varied network of care (group and/or individual sessions focused on physical rehabilitation, and adapted school/professional orientation).

Regardless of the care system, care workers dedicated to AYA with cancer should use TE-specific actions to reinforce treatment participation and therapeutic relationships. This active multidisciplinary TE working group dedicated to AYA with cancer elaborated TE programs by skilled multidisciplinary teams engaged in interactive educational actions. After this work of a national TE organization, more studies using methodological tools are still required to evaluate the impact of such implemented programs on the treatment results and the quality of life.