Adolescent and young adult (AYA) lymphoma survivors report lower health-related quality of life compared to a normative population: results from the PROFILES registry.

BackgroundTrying to simultaneously achieve developmental milestones and cope with a life-threatening disease may place adolescents and young adults (AYAs) at risk for impaired health-related quality of life (HRQoL) later in life. The aim of this study was to examine differences in HRQoL between AYA lymphoma survivors and a normative population and to determine sociodemographic, clinical and long-term symptom-related factors associated with HRQoL.Material and methodsThis study was part of a longitudinal, population-based survey among lymphoma survivors diagnosed between 1999 and 2012. The AYA survivor sample (18-39 years at time diagnosis) was compared to a sex- and age-matched normative population on HRQoL (EORTC-QLQ-C30) and psychological distress (HADS). Multiple linear regression analyses were conducted to determine factors associated with HRQoL among survivors.ResultsOne hundred and ninety-eight AYA lymphoma survivors (58%) responded to the study invitation. Compared to an age- and sex-matched normative population (N = 380), significantly and clinically relevant poorer HRQoL was observed for AYA lymphoma survivors in seven specific domains of HRQoL: physical, role, cognitive, emotional, social functioning, fatigue and financial difficulties (all p ConclusionsThese findings identify specific domains of life in which cancer has a significant and long-term impact for AYA lymphoma survivors. Future investigations are needed to identify and test administrations and timing of psychosocial support interventions having potential to reduce long-term late effects in specific HRQoL domains and promote function and adaptability after cancer treatment

Advanced soft-tissue sarcoma and treatment options: critical appraisal of trabectedin

Ingrid M E Desar,1 Anastasia Constantinidou,2 Suzanne E J Kaal,1 Robin L Jones,2 Winette T A van der Graaf,1,2 1Department of Medical Oncology, Radboud University Medical Center, Nijmegen, the Netherlands; 2The Institute of Cancer Research and the Royal Marsden NHS Foundation Trust, London, UK Abstract: Soft-tissue sarcomas (STS) are a heterogeneous group of rare solid tumors of mesenchymal origin. This paper reviews the current status of systemic treatment in advanced and metastatic soft tissue sarcomas, with an emphasis on trabectedin. Trabectedin is a unique type of chemotherapeutic agent with multiple potential mechanisms of action. We discuss the putative mechanisms, as well as the toxicity and administration schedules of trabectedin, followed by its efficacy in first-line systemic therapy and beyond first-line systemic therapy. Keywords: soft-tissue sarcoma, trabectedin, chemotherap

L'utilisation et la prescription des corticoïdes en médecine du sport

Background We performed a retrospective nationwide study to explore age as a prognostic factor in synovial sarcoma patients.Methods Data on 613 synovial sarcoma patients were obtained from the Netherlands Cancer Registry. The prognostic relevance of age groups (children, adolescent and young adults (AYAs), adults, and elderly) was estimated by Kaplan-Meier survival curves and multivariable Cox-proportional hazards modelling.Results A total of 461 patients had localised disease at diagnosis. The 5-year overall survival (OS) was 89.3±4.6%, 73.0±3.8%, 54.7±3.6%, and 43.0±7.0% in children (n=54), AYAs (n=148), adults (n=204), and elderly (n=55), respectively. Treatment modalities had no significant effect on survival in the univariable analysis. Multivariable analysis identified age at diagnosis, tumour localisation, and tumour size as significant factors affecting OS. Both tumour localisation and size were equally distributed over the age groups.Conclusions We show that outcome of synovial sarcoma patients significantly decreases with age regardless of primary tumour site, size, and treatment

Prevalence and correlates of high fear of cancer recurrence in late adolescents and young adults consulting a specialist adolescent and young adult (AYA) cancer service.

OBJECTIVE:High fear of cancer recurrence (FCR) is a frequently reported problem among cancer patients. Previous research has shown that younger age is associated with higher levels of FCR. However, little attention has been given to date about how FCR manifests itself among adolescent and young adult (AYA) cancer patients. This study explores the prevalence, correlates of high FCR, and its association with HRQoL in cancer patients in their late adolescence or young adulthood. METHODS:Seventy-three AYA cancer patients, aged 18-35 years at diagnosis, consulted the AYA team of the Radboud University Medical Center completed questionnaires including the Cancer Worry Scale (CWS), Quality of Life-Cancer Survivors (QOL-CS), and Hospital Anxiety and Depression Scale (HADS). Sociodemographic and medical data was collected by self-reported questionnaire. RESULTS:Forty-five participants experienced high FCR (62%), which was higher than the 31-52% reported in previous studies among mixed adult cancer patient samples. Sociodemographic and medical variables were not associated with levels of FCR. High FCR was significantly associated with lower levels of social and psychological functioning and overall HRQoL and higher levels of anxiety and psychological distress. CONCLUSION:Results illustrate that FCR is a significant problem among AYA cancer patients consulting an AYA team, with participants reporting higher levels of FCR than cancer patients of mixed ages. Health care providers should pay specific attention to this problem by screening and the provision of appropriate psychosocial care when needed

Online support community for adolescents and young adults (AYAs) with cancer: user statistics, evaluation, and content analysis

Suzanne EJ Kaal,1,2 Olga Husson,2–4 Fleur van Dartel,3 Karin Hermans,1,2 Rosemarie Jansen,1,2 Eveliene Manten-Horst,1,2 Petra Servaes,2,3 Tom H van de Belt,5 Lucien JLPG Engelen,5 Judith B Prins,2,3 Suzan Verberne,6 Winette TA van der Graaf1,2,4 1Department of Medical Oncology, Radboud University Medical Center, Nijmegen, the Netherlands; 2Dutch AYA “Young and Cancer” Platform, AYA Platform Radboudumc, Radboud University Medical Center, Nijmegen, the Netherlands; 3Department of Medical Psychology, Radboud University Medical Center, Nijmegen, the Netherlands; 4Division of Clinical Studies, Institute of Cancer Research and Royal Marsden NHS Foundation Trust, London, UK; 5Radboud REshape and Innovation Center, Radboud University Medical Center, Nijmegen, the Netherlands; 6Leiden Institute for Advanced Computer Science, Leiden University, Leiden, the NetherlandsPurpose: Peer support is an important unmet need among adolescent and young adult (AYA) cancer patients. This study was conducted to describe the use and evaluation of a Dutch secure online support community for AYA diagnosed with cancer between 18 and 35 years. Methods: User statistics were collected with Google analytics. Community members were asked to complete questionnaires on the usefulness of the community. A content analysis using Linguistic Inquiry and Word Count was conducted. Results: Between 2010 and 2017, the community received 433 AYA members (71% female; mean age at diagnosis 25.7 years; 52 Dutch hospitals represented). The mean time since diagnosis when subscribing to the community was 2.7 years (SD 4.4). Questionnaire data among 30 AYA community members indicated that the use of the community resulted in acknowledgment and advice regarding problems (56%) and the feeling of being supported (63%). Almost half of the respondents felt less lonely, 78% experienced recognition in stories of other AYA. Anonymized content analysis (n=14) showed that the majority of the online discussions encompassed emotional and cognitive expressions, and emotional support. Conclusion: The secure Dutch online AYA community can help AYA cancer patients to express feelings, exchange information, address peer support, and has been found helpful in coping with cancer. As AYA cancer patients often lack the option of meeting each other in person, the AYA community is helpful in establishing peer support. Its use would benefit from promotion by health care professionals. Keywords: adolescent and young adult, AYA, AYA cancer patient, online community, peer support, user statistics, content analysi