Supportive Care Needs of Former Child, AYA Cancer Patients, and of Their Parents: Evaluation During Long-term Follow-up

Each year, there are 2100 new cases of cancer in children and adolescents/young adults (AYA) in France. Due to a significant improvement in the effectiveness of therapies, the survival rate of all types of cancer combined after 5 years is 80-85%. This is leading to the emergence of new problems, which require an adaptation of the long-term care of these former patients. Nevertheless, although some medical complications have been widely described and are the subject of recommendations, many questions remain unanswered regarding the real long-term needs of patients and of their main caregivers. The main objective of this study is to assess not only the specific supportive care needs of former onco-hematology patients treated before the age of 25 years, but also those of their parents up to 6 months after the end of the oncological follow-up, i.e. 3 to 5 years after the diagnosis. The secondary objectives aim to: 1. Assess adherence to long-term follow-up medical consultation 2. Assess the early complications presented by the patients 3. Assess the quality of life and the anxiety-depression of former patients and their parents 4. Describe and evaluate the offer and use of the network of health professionals aware of the post-treatment issues; assess the referral to the network of health professionals aware of the post-treatment issues. Depending on the objectives, the methodology used in this study is mixed, qualitative and quantitative. The study will be proposed systematically to all former patients of the hospital department diagnosed before the age of 25 years and at least 6 years of age at the time of inclusion as well as to their parents. A sample of 60 former pediatric patients (20 per age group) and 60-120 parents (ideally 40 per age group) is expected. At the scientific level, this study will provide a better understanding of the cognitive and emotional processes involved in the long-term follow-up, in particular by identifying the supportive care needs of different participants (former patients and parents) and their experiences and quality of life during the long-term follow-up phase. At the individual level, this pilot study will enable the development of a multiprofessional structure, expert in cancer after-care from the end of the oncological follow-up.

Sex

All

Minimum age

6 Years

Maximum age

31 Years

Inclusion Criteria:

* Age of the patient or the parent of a patient aged ≤ 25 years at diagnosis and at least 6 years of age at the time of inclusion
* Patient, or the parent of a patient, previously treated at Institut d'Hématologie et d'Oncologie Pédiatrique /Leon Berard comprehensive cancer centre
* Patient treated for a solid tumor or a lymphoma
* Patient in complete response and having finished his/her standard oncological monitoring between 1 and 6 months ago i.e. 3 to 5 years after the diagnosis
* Patients and parents capable of understanding, reading and writing French
* Patient affiliated to a health insurance plan
* Having been informed of the study and not objecting to it

Exclusion Criteria:

* Cannot be followed-up for medical, social, familial, geographical or psychological reasons, throughout the duration of the study
* Deprived of liberty by a court or administrative decision
* Person who refused to participate or was incapable of objecting in an informed manner