[Which approach of therapeutic education (TE) for adolescents and young adults with cancer? Experience from the TE working group of "Go-AJA"].

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.

Corradini N ，Dagorne L ，Retailleau M ，Rédini F ，Sudour-Bonnange H ，Gofti-Laroche L ，Le Rhun A ，Gaspar N ... -  《-》

[Usefulness of social and educational approach in adolescents and young adults with cancer: The Lille team's experience].

Within the second "Cancer plan" 2009-2013, the French national institute of cancer (INCa) recommended the implementation of programs dedicated to adolescents and youngs adults (AYA) with cancer. In this context and in parallel to the specific medical care developed for AYA, the Oscar-Lambret center created a psycho-social-educational team including among others a social worker (SW) and a special educational teacher (SET), offering multidisciplinary qualifications and views. The social approach, realized as a pair by SW-SET, takes into account every aspect of each AYA (family, academic, career/professional, personal, cultural aspects…). We expose the first 2 years' experience of this special program for AYA through diagnosis to remission time. For this period, 164 AYA were seen by the social professionals, with a total of 602 consultations in the unit. The number of these consultations depended on the needs of AYA and their family. Nevertheless, only 10 AYA required no further intervention (6.1 %). The study highlights that the social interventions are most frequently about scolarity, work and disability recognition. These 2 years of experience of the SW-SET team offered a way to reflect upon our values and our culture, and on the role of the social worker in a medical setting. Each AYA has a personal story, which affects significantly the way to overcome the challenges that come with the disease. Our findings underscore the need for AYA with cancer to have access to personalized supportive care, encouraging them in pursing their personal goals and rewarding themselves.

Jacquot J ，Delbarre-Philippart M ，Bricout H ，Lervat C ，Carbonnelle G ，Leblond P ，Defachelles AS ，Penel N ，Sudour-Bonnange H ... -  《-》

[What specific socialisation, social, educational and professional for teenagers and young adults with cancer?].

Socialisation, education, first jobs and autonomy are key steps to teenagers and young adults (TYA) integration into the society. The occurrence of a cancer in this population increases the difficulties. Although, suffering of cancer do affect TYA life journey at social, scholar and professional levels, from diagnosis to the after-cancer live and sometime forever, few studies exist in France. A national study on TYA with cancer (TYAC) social, scholar and professional pathways is on-going (ESPOIR-AJA). A national survey of the existing TYAC insertion support in 2013 by the "Insertion group" of groupe onco-hématologie adolescents et jeunes adultes (GO-AJA) revealed structured and ancient support at scholar level based on national governmental or associative structures, but insufficient and non-specific scholar help in secondary school and professional help. Specific initiatives have emerged since 2012 with the "Plan cancer 2". All these helps remain unequal across the country. A referential on TYAC social, scholar and professional insertion has been prepared by GO-AJA in collaboration with the association francophone des soins oncologiques de support (AFSOS). The impact of the action 9 of the nation "plan cancer 3" is awaited.

Roesler C ，Pautre I ，Thirry D ，Flores S ，Chabbert C ，Savre N ，Pibarot M ，Seveau MA ，Dugas K ，Rollin Z ，Dumont S ，Gaspar N ，au nom du sous-groupe « Insertion » de groupe onco-hématologie adolescents et jeunes adultes français (GO-AJA) ... -  《-》

Treatment of adolescents and young adults (AYA) with cancer in a multidisciplinary setting: on the way to a highly specialized AYA unit.

Further survival improvements of adolescents and young adults (AYA) with cancer are clearly affected by biological characteristics of the malignancies and age-specific needs. Multidisciplinary teams drawing expertice from both pediatric and adult cancer teams as well as clinical trials are required to meet the age specific needs of AYA patients with cancer. In 2011, the first AYA unit was established at the University Hospital Halle (Saale), where patients with newly-diagnosed cancer aged 15-25 are treated interdisciplinary by pediatric and adult oncologists. The enrollment into pediatric or adult clinical trials is controlled by age 18. Over the last 2 years, 19 AYA with cancer have been treated at the unit; and, in turn patients and their relatives reflected a high satisfaction with the offered novel health care approach. In the scope of the future Comprehensive Cancer Center at the University Hospital Halle (Saale), a complete ward is planned for all admitted AYA up to 25 years with cancer. The patients will be treated by a tumor-specialized multidisciplinary team of adult or pediatric oncologists and oncological surgeons. Therefore, we intend to establish a special teaching curriculum for physicians, nurses and psychosocial health care staff. Rather than age, cancer biology of a malignancy, surveillance data of late side effects as well as the age-specific needs of AYA patients will be crucial for best treatment options.

Bernig T ，Jahn F ，Witkowsky S ，Huehn R ，Hentschel A ，Kegel T ，Schmoll HJ ，Körholz D ... -  《-》

Determinants of physical activity commitment in adolescents and young adults with cancer: sociological protocol for a hospital-based mixed methods study (ETAPE-AJA).

Adolescents and young adults (AYA) with cancer undergo physical transformations due to disease and treatments occurring alongside puberty and adolescence. Although physical activity is recommended for its benefits, its practice among AYA with cancer remains insufficient. The aim of the Éducation Thérapeutique et Activité Physique: Engagement des Adolescents et Jeunes Adultes atteints de cancer study is to identify the evolution of AYA with cancer medical knowledge and powers (power to act, to express oneself) over life and cancer care, and their role in commitment in adapted physical activity (APA) and therapeutic patient education during and after oncological treatments. This prospective mixed methods monocentre study will be conducted in a French comprehensive cancer centre. Observations will be conducted two times a week during medical consultations, APA interventions and therapeutic education sessions for AYA with cancer. Semidirective interviews will involve 70 participants, including AYA with cancer aged 15-25, health professionals, APA teachers and parents. Quantitative data will be collected on AYA's social characteristics and participation in physical activity intervention and therapeutic education sessions. A correspondence factor analysis will supplement inductive analysis of ethnographic qualitative data, involving patient coresearchers. The results will help to improve the understanding of AYAs' medical knowledge and powers, their commitment in physical activity and to develop strategies to increase their participation. This study complies with reference methodology MR004 of the French National Data Protection Authority and was registered by the Data Protection Officer of the Leon Berard Cancer Center on the activity registry of the institution (Ref. N°R201-004-259; 5 July 2022). Ethics approval has been obtained from the Centre Léon Bérard ethics board (Ref. N°2022-006; 20 July 2022). Oral informed consent will be obtained from all participants before data collection. The results of this study will be published in peer-reviewed scientific journals, national and international conferences.

Bruneau C ，Perrin C ，Bertrand A ，Mongondry R ，Marec-Berard P ，Fervers B ，Pérol O ... -  《-》