Evaluation of the impact of a long-term follow up medical consultation on the health of young adult survivors of childhood cancer (except leukemia)

Introduction - Quel est le modèle de suivi à long terme adapté aux attentes et besoins des jeunes adultes guéris d’un cancer dans l’enfance ? Méthode - Cette étude a pour objectif d’évaluer l’impact sur la santé de jeunes adultes guéris d’un cancer pédiatrique d’un modèle de suivi associant auto-questionnaire et consultation médicale. De jeunes adultes ayant eu un cancer entre 1987 et 1992 en Rhône-Alpes-Auvergne ont été vus en consultation médicale et psychologique de Suivi A Long Terme (SALTO), précédée et suivie d’un auto-questionnaire. De plus, la capacité d’adaptation de leur système nerveux autonome (SNA) a été évaluée afin de déterminer les caractéristiques des sujets dont le SNA était altéré. Résultats - 207 jeunes adultes ont rempli un questionnaire pré-consultation et 197 ont déclaré avoir de nombreuses séquelles, en moyenne 3,4 séquelles, ce qui a été confirmé par l’observation médicale faite chez les 150 consultants (2,6 séquelles observées/sujet). Après la consultation, près de 70% des sujets ont modifié leur nombre de séquelles déclarées. Aucune caractéristique particulière n’a pu être clairement mise en évidence quant aux personnes ayant une capacité de régulation du SNA altérée mais une relation significative a été établie entre SNA altéré et observation d’une séquelle cardiovasculaire (P=0,049). Une enquête de satisfaction a montré une opinion très favorable à la consultation SALTO. Environ 80% des sujets présentant un trouble psychiatrique au moment de la consultation ne bénéficiaient d’aucun suivi psychologique.Conclusion - Un suivi à long terme des jeunes adultes guéris d’un cancer dans l’enfance est nécessaire, faisable et répond à une demande réelleIntroduction - What is the model of long-term follow-up adapted to the expectations and needs of youngadults cured of a childhood cancer? Method – The aim of this study was to estimate the impact of a long-term follow-up care (LTFU) associated self-questionnaire and medical consultation, on the health of young adult survivors of childhood cancer. Young adults with childhood cancer between 1987 and 1992 in Rhône-Alpes-Auvergne were seen during a LTFU medical and psychological consultation (SALTO), which was preceded and followed by a self-questionnaire. Furthermore, the capacity of adaptation of their autonomous nervous system (ANS) was estimated to determine the characteristics of the subjects whose ANS was altered. Results - 207 young adults completed a questionnaire before consultation and 197 of them declared having sequalae, on average each self-reported 3.4 late effects, which was confirmed by a medical observation made at 150 consultations (mean 2.6 observed late effects/subject). After the consultation, about 70 % of the subjects modified their number of self-reported late effects. No particular characteristic was clearly highlighted in people with an altered capacity of ANS regulation but a significant relationship was established between altered ANS and cardiovascular complication (P=0,049). A satisfaction survey showed a very favorable opinion about the SALTO consultation. Approximately 80% of the subjects presenting a psychiatric disorder at the time of the consultation had received no psychological follow-up at this time. Conclusion - Long-term follow-up of young adult survivors of a childhood cancer is necessary, feasible and answers a real nee

Évaluation de l’impact d’une consultation médicale de suivi à long terme sur l’état de santé de jeunes adultes guéris d’un cancer pédiatrique (hors leucémie)

Introduction - What is the model of long-term follow-up adapted to the expectations and needs of youngadults cured of a childhood cancer? Method – The aim of this study was to estimate the impact of a long-term follow-up care (LTFU) associated self-questionnaire and medical consultation, on the health of young adult survivors of childhood cancer. Young adults with childhood cancer between 1987 and 1992 in Rhône-Alpes-Auvergne were seen during a LTFU medical and psychological consultation (SALTO), which was preceded and followed by a self-questionnaire. Furthermore, the capacity of adaptation of their autonomous nervous system (ANS) was estimated to determine the characteristics of the subjects whose ANS was altered. Results - 207 young adults completed a questionnaire before consultation and 197 of them declared having sequalae, on average each self-reported 3.4 late effects, which was confirmed by a medical observation made at 150 consultations (mean 2.6 observed late effects/subject). After the consultation, about 70 % of the subjects modified their number of self-reported late effects. No particular characteristic was clearly highlighted in people with an altered capacity of ANS regulation but a significant relationship was established between altered ANS and cardiovascular complication (P=0,049). A satisfaction survey showed a very favorable opinion about the SALTO consultation. Approximately 80% of the subjects presenting a psychiatric disorder at the time of the consultation had received no psychological follow-up at this time. Conclusion - Long-term follow-up of young adult survivors of a childhood cancer is necessary, feasible and answers a real needIntroduction - Quel est le modèle de suivi à long terme adapté aux attentes et besoins des jeunes adultes guéris d’un cancer dans l’enfance ? Méthode - Cette étude a pour objectif d’évaluer l’impact sur la santé de jeunes adultes guéris d’un cancer pédiatrique d’un modèle de suivi associant auto-questionnaire et consultation médicale. De jeunes adultes ayant eu un cancer entre 1987 et 1992 en Rhône-Alpes-Auvergne ont été vus en consultation médicale et psychologique de Suivi A Long Terme (SALTO), précédée et suivie d’un auto-questionnaire. De plus, la capacité d’adaptation de leur système nerveux autonome (SNA) a été évaluée afin de déterminer les caractéristiques des sujets dont le SNA était altéré. Résultats - 207 jeunes adultes ont rempli un questionnaire pré-consultation et 197 ont déclaré avoir de nombreuses séquelles, en moyenne 3,4 séquelles, ce qui a été confirmé par l’observation médicale faite chez les 150 consultants (2,6 séquelles observées/sujet). Après la consultation, près de 70% des sujets ont modifié leur nombre de séquelles déclarées. Aucune caractéristique particulière n’a pu être clairement mise en évidence quant aux personnes ayant une capacité de régulation du SNA altérée mais une relation significative a été établie entre SNA altéré et observation d’une séquelle cardiovasculaire (P=0,049). Une enquête de satisfaction a montré une opinion très favorable à la consultation SALTO. Environ 80% des sujets présentant un trouble psychiatrique au moment de la consultation ne bénéficiaient d’aucun suivi psychologique.Conclusion - Un suivi à long terme des jeunes adultes guéris d’un cancer dans l’enfance est nécessaire, faisable et répond à une demande réell

Implementing long-term follow-up after pediatric cancer: ethical tensions and survivors' perspective

International audienceHow the cancer episode is perceived has an impact on how the follow-up is approached. People for whom cancer is an episode of the past may be less concerned with follow-up than those for whom cancer is experienced as a chronic condition. However, this perception does not always correspond to the medically assessed state of health: the perception of cancer episode depends on the pathology/the perceived health status/the late effects of treatments/the existing medical follow-up, evolves in the same person according to the occurrence of symptoms related to lateeffects/knowledge about the risk of lateeffect/intensification or termination of followup, etc., fluctuates according to time of life and constraints or expectations associated with them. II. Different Expectations at Different Times of Life: Needs and expectations regarding LTFU vary significantly according to age, periods of life, and related constraints, or to the acceptance of the medical history that sometimes evolves

Implementing long-term follow-up after pediatric cancer: ethical tensions and survivors' perspective

International audienceHow the cancer episode is perceived has an impact on how the follow-up is approached. People for whom cancer is an episode of the past may be less concerned with follow-up than those for whom cancer is experienced as a chronic condition. However, this perception does not always correspond to the medically assessed state of health: the perception of cancer episode depends on the pathology/the perceived health status/the late effects of treatments/the existing medical follow-up, evolves in the same person according to the occurrence of symptoms related to lateeffects/knowledge about the risk of lateeffect/intensification or termination of followup, etc., fluctuates according to time of life and constraints or expectations associated with them. II. Different Expectations at Different Times of Life: Needs and expectations regarding LTFU vary significantly according to age, periods of life, and related constraints, or to the acceptance of the medical history that sometimes evolves

Implementing long-term follow-up after pediatric cancer: ethical tensions and survivors' perspective

International audienceHow the cancer episode is perceived has an impact on how the follow-up is approached. People for whom cancer is an episode of the past may be less concerned with follow-up than those for whom cancer is experienced as a chronic condition. However, this perception does not always correspond to the medically assessed state of health: the perception of cancer episode depends on the pathology/the perceived health status/the late effects of treatments/the existing medical follow-up, evolves in the same person according to the occurrence of symptoms related to lateeffects/knowledge about the risk of lateeffect/intensification or termination of followup, etc., fluctuates according to time of life and constraints or expectations associated with them. II. Different Expectations at Different Times of Life: Needs and expectations regarding LTFU vary significantly according to age, periods of life, and related constraints, or to the acceptance of the medical history that sometimes evolves

Childhood cancer survival in France, 1990-1999.

ERMAInternational audienceThe aim of this study was to describe the overall survival after childhood cancer in France using follow-up data from regional population-based registries. The survival of children (aged under 15 years) diagnosed with a cancer during 1990-1999 was analysed. For all cancers, the survivals were, respectively, 90.3% [89.4-91.3] at 1-year, 75.2% [73.8-76.6] at 5 years and 72.2% [70.7-73.7] at 10 years. During the 1990s, the average improvement in the 5-year survival was +1.2% per year. Adjusted for gender, age, area of residence and stage, children with cancer diagnosed between 1995 and 1999 had a 0.80 reduced risk of dying compared with those whose cancer had been diagnosed between 1990 and 1994. The increase of survival at the population level reflects a global improvement in childhood cancer care. The Paediatric Registries, in association with the French Society of Childhood Cancer, are now collecting data to quantify on a national basis the other events, at least relapse and second cancers

Personalized Massive Open Online Course for Childhood Cancer Survivors: Behind the Scenes

Background: Today, in France, it is estimated that 1 in 850 people aged between 20 and 45 years has been treated for childhood cancer, which equals 40,000 to 50,000 people. As late effects of the cancer and its treatment affect a large number of childhood cancer survivors (CCS) and only 30% of them benefit from an efficient long-term follow-up care for prevention, early detection, and treatment of late effects, health education of CCS represents a challenge of public health.Objectives: Massive open online courses (MOOCs) are a recent innovative addition to the online learning landscape. This entertaining and practical tool could easily allow a deployment at a national level and make reliable information available for all the CCS in the country, wherever they live.Methods: The MOOC team brings together a large range of specialists involved in the long-term follow-up care, but also associations of CCS, video producers, a communication consultant, a pedagogical designer, a cartoonist and a musician. We have designed three modules addressing transversal issues (lifestyle, importance of psychological support, risks of fertility problems) and eight modules covering organ-specific problems. Detailed data on childhood cancer treatments received were used to allocate the specific modules to each participant.Results: This paper presents the design of the MOOC entitled "Childhood Cancer, Living Well, After," and how its feasibility and its impact on CCS knowledge will be measured. The MOOC about long-term follow-up after childhood cancer, divided into 11 modules, involved 130 participants in its process, and resulted in a 170-minute film. The feasibility study included 98 CCS (31 males vs. 67 females; p < 0.0001).Conclusion: Such personalized, free, and online courses with an online forum and a possible psychologist consultation based on unique characteristics and needs of each survivor population could improve adherence to long-term follow-up without alarming them unnecessarily

Educational and occupational outcomes of childhood cancer survivors 30 ă years after diagnosis: a French cohort study

International audienceBackground: Although survival from childhood cancer has increased, ă little is known on the long-term impact of treatment late effects on ă occupational attainment or work ability. ă Methods: A total of 3512 five-year survivors treated before the age of ă 19 years in 10 French cancer centres between 1948 and 2000 were ă identified. Educational level, employment status and occupational class ă of survivors were assessed by a self-reported questionnaire. These ă outcome measures were compared with sex-age rates recorded in the French ă population, using indirect standardisation. Paternal occupational class ă was also considered to control for the role of survivors' socioeconomic ă background on their achievement. Multivariable analyses were conducted ă to explore clinical characteristics associated with the outcomes. ă Results: A total of 2406 survivors responded to the questionnaire and ă survivors aged below 25 years were included in the current analysis. ă Compared with national statistics adjusted on age and sex, male ă survivors were more likely to be college graduates (39.2% vs 30.9% ă expected; P<0.001). This higher achievement was not observed either for ă leukaemia or central nervous system (CNS) tumour survivors. ă Health-related unemployment was higher for survivors of CNS tumour ă (28.1% vs 4.3%; P<0.001) but not for survivors of other diagnoses. ă Survivors of non-CNS childhood cancer had a similar or a higher ă occupational class than expected. ă Conclusions: Survivors treated for CNS tumour or leukaemia, especially ă when treatment included cranial irradiation, might need support ă throughout their lifespan