title: [Which approach of therapeutic education (TE) for adolescents and young adults with cancer? Experience from the TE working group of "Go-AJA"].
abstract: BACKGROUND
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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).
  
  
  CONCLUSIONS
  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.
authors.affiliation: Institut d'hémato-oncologie pédiatrique, centre Léon-Bérard, dispositif AJA en cancérologie, 28, prom. Léa-et-Napoléon-Bullukian, 69008 Lyon, France. Electronic address: nadege.corradini@lyon.unicancer.fr.
authors.forename: Nadège
authors.initials: N
authors.lastname: Corradini
authors.affiliation: Cancer campus Gustave-Roussy, département de cancérologie de l'enfant et l'adolescent, équipe transversale SPIAJA, 114, rue Edouard-Vaillant, 94800 Villejuif, France.
authors.forename: Loïc
authors.initials: L
authors.lastname: Dagorne
authors.affiliation: CHU de Nantes, hôpital mère-enfant, département d'oncologie pédiatrique, quai Moncousu, 44093 Nantes cedex 1, France.
authors.forename: Marielle
authors.initials: M
authors.lastname: Retailleau
authors.affiliation: Faculté de médecine, Inserm UMR957, « laboratoire de PHysiopathologie de la résorption osseuse et thérapie des tumeurs osseuses primitives », 1, rue Gaston Veil, 44035 Nantes cedex 1, France.
authors.forename: Françoise
authors.initials: F
authors.lastname: Rédini
authors.affiliation: Centre Oscar-Lambret, unité d'oncologie pédiatrique, équip'AJA, 3, rue Frédéric-Combemale, 59000 Lille, France.
authors.forename: Hélène
authors.initials: H
authors.lastname: Sudour-Bonnange
authors.affiliation: CHU Grenoble Alpes, hôpital couple enfant, équipe AJA Arc Alpin, avenue Maquis-du-Grésivaudan, 38700 La Tronche, France.
authors.forename: Leila
authors.initials: L
authors.lastname: Gofti-Laroche
authors.affiliation: CHU, hôpital Saint-Jacques, département de santé publique, unité d'éducation thérapeutique, bâtiment Louis-Philippe, 85, rue Saint-Jacques, 44093 Nantes cedex 1, France.
authors.forename: Anne
authors.initials: A
authors.lastname: Le Rhun
authors.affiliation: Cancer campus Gustave-Roussy, département de cancérologie de l'enfant et l'adolescent, équipe transversale SPIAJA, 114, rue Edouard-Vaillant, 94800 Villejuif, France.
authors.forename: Nathalie
authors.initials: N
authors.lastname: Gaspar
mesh_terms: D000293:Adolescent; D019468:Disease Management; D017144:Focus Groups; D005602:France; D006801:Humans; D009369:Neoplasms / Q000175:diagnosis / Q000401:mortality / Q000628:therapy*; D010348:Patient Care Team / Q000458:organization & administration*; D010353:Patient Education as Topic; D010817:Physician-Patient Relations; D012648:Self Care / Q000379:methods; D055815:Young Adult
keywords: Adolescents; Jeunes adultes; Oncologie; Oncology; Therapeutic education; Young adults; « Go-AJA »; Éducation thérapeutique; “Go-AJA”