Have we made progress in taking care of adolescents and young adults with cancer? Results of a European multi-professional survey.

BACKGROUND: It is well documented that traditional health care models do not meet the specific needs of Adolescents and Young Adults (AYA) cancer patients. METHODS: We explore a map of the development of age-specific AYA cancer care across Europe, from the perspective of healthcare professionals with an interest in AYA care, in order to understand the specific challenges and map progress over time. An on-line survey was developed by international professional cancer organisations. RESULTS: We had 377 respondents from 60 countries. The majority of respondents were physicians 298 (79%), a minority of survey respondents (39, 10.4%) work exclusively with AYA patients, most respondents declared substantial and routine clinical service collaborations to provide care and treatment to AYA with cancer. Policy for the multidisciplinary management of AYA cancer patients commonly appears in Europe now, and was reported by 234 (78.52%) respondents. Specific professional training for AYA cancer care is not uniformly available. CONCLUSION: There is considerable opportunity for many organisations to work together in raising the profile of AYA cancer related issues, in providing education and in encouraging research and collaboration.

Adolescents and Young Adults with Primary Brain Tumor: Description of the Care Pathway of Patients Diagnosed in Grenoble Between 2013 and 2019.

Purpose: This study was undertaken to describe the Adolescents and Young Adults' (AYA-aged patients') neuro-oncology care pathways at Grenoble Alpes University Hospital according to the French health recommendations. Methods: A retrospective monocentric observational study was conducted between 2020 and 2021, on patients 13-29 years of age, diagnosed from January 2013 to 2019 in our institute with a primary brain tumor, excluding meningiomas, schwannomas, and neurinomas. The detailed analysis took into account the type of care unit (adult or pediatric), whether or not a dedicated AYA support team was involved, and various pretherapeutic actions. Results: Sixty patients were included in this study. Three of the 9 key stages of the care process were completed regardless of the type of management. Management in a pediatric oncology department seems to improve multidisciplinary discussions and access to the AYA team. Collaboration with an AYA team seems to improve the recourse to pediatric advice and supportive care. Conclusions: Increased vigilance at all key steps as defined in the recommendations of the Directorate General of Healthcare Services would significantly improve the overall quality of care for this specific population. In the absence of a dedicated AYA hospitalization unit, interdisciplinary cooperation between the different professionals of the adult and pediatric services is essential, and the involvement of the AYA mobile team is a factor that favors links and exchanges and ultimately an overall improvement in patient care and life. We propose our vision of an ideal AYA neuro-oncology care pathway.

[Oncologic supportive care for a personalized support of all patients]. / Les soins de support pour améliorer l'accompagnement personnalisé des patients.

Ever since the officialization of oncologic supportive care by the DHOS circular in February 22nd, 2005 and measure 42 of the 2003-2007 Cancer Plan, their content has been enriched for inpatients and outpatients. A guaranteed care package was determined in February 2017 following a study lead by AFSOS and INCa. It adds adapted physical activity and sexual health support to basic supportive care such as pain relief, nutrition, psychology, social support. Supportive cares in pediatric oncology were defined in March 2004. They always were part of holistic pediatric care. The offer in supportive care for children and AYA and the offer in adult supportive care can complete, inspire or improve each other.

Pathways to Diagnosis for Teenagers and Young Adults with Cancer in European Nations: A Pilot Study.

PURPOSE: The diagnosis of cancer is often prolonged in teenagers and young adults (TYA). There may be lessons in improving this from international comparisons. However, international studies are complex and so we conducted a pilot study to examine the key barriers to large-scale research in this field. METHODS: We provided translated questionnaires covering key aspects of presentation and clinical management within 60 days of a confirmed cancer diagnosis, to patients 13-29 years of age inclusive, to their primary care physicians and to the cancer specialists managing their cancer. We conducted descriptive analyses of the data and also the process of study implementation. RESULTS: For our pilot, collecting triangulated data was feasible, but varying regulatory requirements and professional willingness to contribute data were key barriers. The time of data collection and the method for collecting symptom reports were important for timely and accurate data synthesis. Patients reported more symptoms than professionals recorded. We observed substantial variation in pathways to cancer diagnosis to explore definitively in future studies. CONCLUSION: Focused research upon the mechanisms underpinning complex cancer pathways, and focusing that research upon specific cancer types within TYA may be the next key areas of study.

[Which approach of therapeutic education (TE) for adolescents and young adults with cancer? Experience from the TE working group of "Go-AJA"]. / Quelle démarche d'éducation thérapeutique (ETP) pour les adolescents et jeunes adultes atteints de cancer ? Expérience du groupe ETP de « Go-AJA ¼.

INTRODUCTION: 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. MATERIALS AND 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). CONCLUSION: 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.