Supportive care needs of adolescents and young adults 5 years after cancer: a qualitative study

Valentine Baudry; Magali Girodet; Mathilde Lochmann; Margaux Bottichio; Emilie Charton; Cécile Flahault; Anne-Sophie Baudry; Amandine Bertrand; Véronique Christophe

doi:10.3389/fpsyg.2024.1268113

Supportive care needs of adolescents and young adults 5 years after cancer: a qualitative study

Front Psychol. 2024 Apr 30:15:1268113. doi: 10.3389/fpsyg.2024.1268113. eCollection 2024.

Authors

Valentine Baudry^{1

2}, Magali Girodet^{1

3}, Mathilde Lochmann¹, Margaux Bottichio¹, Emilie Charton^{1

4}, Cécile Flahault⁵, Anne-Sophie Baudry^{1

6}, Amandine Bertrand^{1

3

7}, Véronique Christophe^{1

2}

Affiliations

¹ Département des Sciences Humaines et Sociales, Centre Léon Bérard, Lyon, France.
² UMR (Research Unit) Inserm 1052-CNRS (National Center of Scientific Research) 5286 Centre de Recherche en Cancérologie de Lyon, Université Claude Bernard Lyon 1, Lyon, France.
³ U1290 Inserm RESHAPE: Research on Healthcare Performance, Université Claude Bernard Lyon 1, Lyon, France.
⁴ Département de la Recherche Clinique et de l'Innovation, Centre Léon Bérard, Lyon, France.
⁵ Laboratoire de Psychopathologie et Processus de Santé, Université Paris Cité, Paris, France.
⁶ Pôle Cancérologie et Spécialités Médicales, Centre Hospitalier de Valenciennes, Valenciennes, France.
⁷ Institut d'Hémato-Oncologie Pédiatrique, Lyon, France.

Abstract

Introduction: Adolescent and young adult (AYA) survivors who have been treated for cancer during childhood and adolescence are at great risk of the physical, psychological, and social consequences of cancer and its associated treatments. However, compliance with long-term follow-up is low. One possible explanation is that follow-up care fails to meet the expectations of AYA survivors. This study explored the specific supportive care needs of AYA survivors of childhood and adolescent cancer five years post-diagnosis.

Methods: Semi-structured interviews were conducted with 15 AYA aged 15 to 25 years old. Thematic analyses were conducted to establish categories of supportive care needs and classify them as being met or unmet.

Results: Participants reported between 2 and 20 specific needs (M = 11), including needs concerning fertility issues and reassurance regarding relapse (each mentioned by 67% of AYA), followed by the need for locomotor care, follow-up coordination and multidisciplinary care (60% of AYA for each). Participants also reported needs regarding social relationships, administration and finance, and academic and professional domains. Most (69%) of these needs were reportedly unmet, including need of information about cancer repercussions and follow-up, support in managing fatigue and sleep problems, psychological assistance, and support from peers.

Discussion: The supportive care needs are still considerable and varied in AYA survivors of childhood and adolescent cancer 5 years post-diagnosis and are largely unmet. As unmet supportive care needs highlight the gap between available care in follow-up and the real needs of AYA survivors, a better understanding of their supportive care needs and unmet needs, thanks to systematic needs assessment, would enable long-term follow-up care to be adapted, thereby improving compliance and quality of life.

Keywords: adolescents and young adults (AYA); cancer; long-term follow-up; supportive care needs; survivors.

Grants and funding

The authors declare that financial support was received for the research, authorship, and/or publication of this article. This work was supported by the Amgen France Fund for Science and Human, the ARC Foundation for Cancer Research, the Philanthropic Association of Parents of Children with Leukemia and other cancers (APPEL) and the Institut François Rabelais for Interdisciplinary Research on Cancer (PLAsCAN) funding has been added (ANR-17-CONV-002).