Adolescents and young adults (AYAs, 15-39 years of age) with cancer face unique challenges. Efforts have been made to improve both care and outcomes for this population. Metrics to evaluate AYA cancer care efforts help to ensure that objectives and outcomes are being met. This thesis comprises 7 papers which explore system performance metrics for cancer care and control in AYAs. A scoping review introduces the topic and addresses the current state of indicator metrics for the AYA cancer population. The second paper extends this work and develops a consensus-based list of relevant indicators. The subsequent papers focus on further development of two of the identified indicators for implementation in Canada (identification of patient reported outcome measures (PROMS) for assessing distress; a referral indicator for oncofertility care). This thesis describes 14 indicators in 5 care areas. Two identified indicators were further developed to aid in implementation (“Proportion of AYA patients screened for distress with standardized AYA specific tools” and “Proportion of AYA patients who had fertility preservation discussion before treatment”). Criteria from the National Quality Forum (NQF) were used to assess commonly used PROMs for distress. It was found that although all PROMs had acceptable psychometric properties, only the “Impact of Cancer” scale of the CDS-AYA had strong content validity for AYA with cancer. For Oncofertility, the indicator “Proportion of cases attending a fertility consult visit ≤ 30 days from diagnosis of cancer” was recommended for use. Finally, factors associated with attending such a fertility consult were identified. Important factors for both men and women included: age at diagnosis, risk to fertility, year of diagnosis, treatment with radiation or chemotherapy, region of care, income and residential instability. The information presented in this thesis can be applied to national system performance initiatives to identify and implement metrics to monitor and evaluate cancer care in AYA. / Thesis / Doctor of Philosophy (PhD) / A person 15 to 39 years old with cancer will face many challenges. This is a time of life with many changes such as continuing schooling, getting married, starting a career, or starting a family. To make sure that young people with cancer are getting the best care, and that they have the best chance to achieve their goals and contribute to society, we need to measure what is important to this group. These measures can be used to compare hospitals, or changes over time to help make care better. This paper looks at what we already measure in this group, and what patients, researchers and healthcare workers think also should be measured to help provide the best care for these patients. Measures discussed in this paper could be used in programs to monitor the quality of care given to young people with cancer.

En oncologie, les avancées diagnostiques et thérapeutiques ont permis une amélioration significative des taux de survie au prix d’une altération de la santé reproductive des patients due à la gonadotoxicité des traitements. L’attention accordée à la qualité de vie durant et après le cancer est devenue un enjeu majeur de la prise en charge et inclue particulièrement les problématiques liées aux troubles de la sexualité et de la fertilité notamment chez les jeunes femmes. Des stratégies de préservation de la santé reproductive avant initiation des traitements doivent désormais faire partie intégrante de la prise en charge multidisciplinaire du cancer de la femme.L’évaluation épidémiologique et clinique de ces stratégies est indispensable pour améliorer l’offre de soins. Pourtant, le recours à ces stratégies n’avait pas encore été évalué aux Antilles Françaises.Ce projet de thèse, s’appuyant sur quatre études, a tenté de répondre à cette problématique en réalisant un état des lieux des besoins et du recours en préservation de la santé reproductive féminine en contexte de cancer aux Antilles Françaises (Martinique, Guadeloupe). Les différentes parties de ce travail ont été valorisées par des publications scientifiques présentées dans ce manuscrit.Une première étude s’est intéressée aux parcours de soins et réseaux de préservation de la santé reproductive dans le monde. Cette étude a permis de définir le paysage international des modèles organisationnels et la chaîne de coordination de la préservation de la santé reproductive dans le monde pour les patientes atteintes d’un cancer. Elle apporte des arguments afin de réduire les disparités dans l’accès aux soins des jeunes femmes survivant à un cancer dans le monde. Une seconde étude s’est intéressée à explorer l’épidémiologie des cancers de la femme et a permis de proposer une estimation de la population concernée par une préservation de la fertilité aux Antilles Françaises.La troisième étude a permis de réaliser un bilan des pratiques de préservation de la santé reproductive aux Antilles Françaises par l’analyse de l’expérience du CECOS-Caraïbe en matière de préservation de la fertilité féminine puis par la réalisation d’une enquête de pratique menée auprès des médecins impliqués dans la prise en charge oncologique des femmes jeunes aux Antilles Françaises.Enfin, le dernier volet a exploré la prise en charge des cancers associés à la grossesse en Martinique. Cette étude a mis en évidence le véritable challenge thérapeutique que représentent ces cancers rares en contexte insulaire, nécessitant un travail collaboratif régional et interrégional. L’analyse de nos résultats a permis de montrer que l’organisation des soins en préservation de la santé reproductive aux Antilles Françaises reste à structurer et à améliorer sur plusieurs points : l’accès aux soins, l’information des patientes, l’identification de référents en oncofertilité, la formation des professionnels, l’interaction entre les centres d’assistance médicale à la procréation et les services d’oncologie. Pour répondre à ces besoins, des solutions innovantes sont possibles afin de mettre en réseau les différents acteurs. Le projet de Réseau Intercaribbéen Cancer et Santé Reproductive est un projet d’e-santé visant à structurer le parcours de soins des patientes jeunes atteintes de cancer et résidant en Martinique et en Guadeloupe, en construisant un parcours de coopération interrégionale pouvant faire face aux contraintes territoriales. Il s’agit également de porter des projets de recherche sur la thématique de la préservation de la santé reproductive dans nos régions dans le but d’améliorer la qualité de vie des jeunes survivantes résidant aux Antilles Françaises. / In oncology, diagnostic and therapeutic advances have allowed a significant improvement in survival rates at the cost of an alteration of the reproductive health of patients due to the gonadotoxicity of the treatments. The attention given to the quality of life during and after cancer has become a major issue of care and particularly includes issues related to sexual and fertility disorders, especially among young women. Strategies for preserving reproductive health before treatment initiation must now be an integral part of the multidisciplinary management of women's cancer. The epidemiological and clinical evaluation of these strategies is essential to improve the supply of care. However, the use of these strategies had not yet been evaluated in the French West Indies.This thesis project, based on four studies, tried to resolve this issue by realizing an inventory of recourse and needs in the preservation of female reproductive health in a context of cancer in the French West Indies (Martinique, Guadeloupe). The different parts of this work have been promoted through scientific publications presented in this manuscript.A first study looked at care pathways and networks for the preservation of reproductive health in the world. This study has defined the international landscape of organizational models and the chain of coordination for the preservation of reproductive health around the world for cancer patients. It brings arguments to reduce disparities in access to care for young women survivors of cancer around the world. A second study focused on exploring the epidemiology of women's cancers and proposed an estimate of the population concerned by fertility preservation in the French West Indies. The third study is dedicated to a review of the practices of preservation of reproductive health in the French West Indies by highlighting the experience of CECOS-Caraïbe in the preservation of female fertility and by the realization a practice survey conducted among doctors involved in the oncological management of young women in the French West Indies. Finally, the last part explored the management of cancers associated with pregnancy in the French West Indies. This study has highlighted the real therapeutic challenge represented by these rare cancers, requiring regional and interregional collaborative work.The analysis of our results made it possible to show that the organization of care in the preservation of fertility in the French West Indies remains to be structured and improved on several points: access to care, information of the patients, the identification of oncofertility referrals, training of professionals, interaction between the centers of medical assistance to procreation and oncology services.To meet these needs, innovative solutions are possible in order to network the different actors. The project Intercaribbean Network Cancer and Reproductive Health is an e-health project aimed at structuring the path of care of young cancer patients residing in Martinique and Guadeloupe, to build an inter-regional cooperation course that can cope with the constraints territorial. It also involves carrying out research projects on the theme of the preservation of reproductive health in our regions with the aim of improving the quality of life of young survivors living in the French West Indies.