supportive care needs of former child, aya cancer patients, and of their parents: evaluation during long-term follow-up

Conditions: Solid Tumor or Lymphoma

Summary: 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.

rational 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. many studies highlight that 60 to 65% of pediatric oncology patients will present medical and/or psychosocial complications in the 20 years following their oncological treatment, with a cumulative incidence of a serious adverse event of 40% 30 years after the cancer diagnosis. 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, in this project their parents. it is therefore necessary to identify the risk factors by determining the expectations and the supportive care needs of patients and their caregivers in the long-term follow-up in order to intervene early and thus reduce the incidence of these later complications. however, only 30 to 50% of former patients in pediatric oncology-hematology and their family attend a long-term follow-up medical consultation. we hypothesize that this lack of commitment is multifactorial (e.g. unmet supportive care needs, geographical distance from home, lack of information about the importance of long-term follow-up and follow-up structures nearby) and that a precise study of the needs expressed by former patients and their family should lead to an improved attendance at these consultations. a better understanding of the supportive care needs of these patients and their families, as well as the brakes/obstacles or lers of their compliance with a long-term follow-up, is therefore essential to improve their quality of life, prevent or detect the sequela of therapies and reduce the risk of morbidity/mortality. objectives 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. methodology 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. the experiences and the specific needs of each person (patients, mothers and fathers) will be assessed independently. three independent groups will be formed based on the age of the patient when included in the study. for each group, the parents may or may not be paired with the patients. a sample of 60 former pediatric patients (20 per age group) and 60-120 parents (ideally 40 per age group) is expected. expected results 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. this first stage will be followed by more powerful studies on the modalities of following-up patients after cancer, in order to add to previously published research on the long-term medical and psychological side effects. 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. this support could be initiated early and the link with the local network established quickly. it should reduce the experience of being abandoned presented by former patients and their families. at the family level, studying the needs expressed by parents could lead to a family psychological approach in order to restore the family links impacted by the disease. at the organizational level, this study should serve as a basis for developing a structure that can carry out tertiary prevention, and thus reduce the costs attributable to long-term side effects (e.g. educational and professional absenteeism, use of treatments, private consultations or even hospitalization).

Eligibility criteria:
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

Keywords: psycho-oncology health psychology paediatric oncology supportive care survivorship caregiver children adolescents and young adults