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How to recognize inborn errors of immunity in a child presenting with a lymphoid malignancy: Guidelines for the pediatric haemato-oncologist. Vrije Universiteit Brussel

Jutte Van Der Werff Ten Bosch, Eva Hlavackova, Tim Lammens, Ute Fischer, Francesco Saettini, Sujal Gosh, Roula Farah, Delphine Bogaert, Chris M Bacon, Simon Bomken, et al.
Inborn errors of immunity (IEI) are a group of disorders caused by genetically determined defects in the immune system, leading to infections, autoimmunity, autoinflammation and an increased risk of malignancy. In some cases, a malignancy might be the first sign of an underlying IEI. As therapeutic strategies might be different in these patients, recognition of the underlying IEI by the pediatric hemato-oncologist is important. This article, ...

Prevalence of anemia at diagnosis of pediatric chronic myeloid leukemia and prognostic impact on the disease course Vrije Universiteit Brussel

Fanny Delehaye, Jérémie Rouger, David Brossier, Meinolf Suttorp, Adalet Meral Güneş, Birgitta Versluys, Chi-Kong Li, Krzysztof Kalwak, Birgitte Lausen

The clinical presentation of chronic myeloid leukemia (CML) at diagnosis differs in children compared to adults. At younger age, anemia appears to be frequent at diagnosis, but its prevalence and its impact on prognosis are not well known. In the International Registry of Childhood CML, we selected children and adolescents in chronic phase at diagnosis of CML and treated upfront with imatinib. We examined their hemoglobin level at diagnosis ...

Socio-economic outcomes among long-term childhood acute lymphoblastic leukaemia survivors enrolled between 1971 and 1998 in EORTC CLG studies Vrije Universiteit Brussel

Melissa Barbati, Anne Uyttebroeck

OBJECTIVE: The objective of this study is to evaluate the socio-economic outcomes of survivors of childhood acute lymphoblastic leukaemia (ALL).

METHODS: Childhood ALL adult survivors, enrolled in EORTC trials between 1971 and 1998 in France and Belgium, were invited to fill out a questionnaire with information about their socio-economic situation (living with a partner, having a university degree, having a job, working part time and ...

Deciphering the Non-Coding RNA Landscape of Pediatric Acute Myeloid Leukemia Vrije Universiteit Brussel KU Leuven

Jolien Vanhooren, Laurens Van Camp, Barbara Depreter, Martijn de Jong, Anne Uyttebroeck, An Van Damme, Laurence Dedeken, Marie-Françoise Dresse, Jutte Van Der Werff Ten Bosch, Mattias Hofmans, et al.

Pediatric acute myeloid leukemia (pedAML) is a heterogeneous blood cancer that affects children. Although survival rates have significantly improved over the past few decades, 20-30% of children will succumb due to treatment-related toxicity or relapse. The molecular characterization of the leukemic stem cell, shown to be responsible for relapse, is needed to improve treatment options and survival. Recently, it has become clear that ...

The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents Vrije Universiteit Brussel Universiteit Gent

Anne Van Driessche, Joni Gilissen, Aline De Vleminck, Jurrianne Fahner, Jutte Van Der Werff Ten Bosch, Luc Deliens, Joachim Cohen, Kim Beernaert

BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance ...

Consensus Recommendations for the Clinical Management of Hematological Malignancies in Patients with DNA Double Stranded Break Disorders Vrije Universiteit Brussel

Agata Pastorczak, Andishe Attarbaschi, Simon Bomken, Arndt Borkhardt, Jutte Van Der Werff Ten Bosch, Sarah Elitzur, Eva Hlavackova, Arpád Kerekes, Zdenka Křenová
Patients with double stranded DNA repair disorders (DNARDs) (Ataxia Telangiectasia (AT) and Nijmegen Breakage syndrome (NBS)) are at a very high risk for developing hematological malignancies in the first two decades of life. The most common neoplasms are T-cell lymphoblastic malignancies (T-cell ALL and T-cell LBL) and diffuse large B cell lymphoma (DLBCL). Treatment of these patients is challenging due to severe complications of the repair ...

Face-Validated Quality Indicators for Appropriateness Of End-Of-Life Care in Children With Serious Illness Vrije Universiteit Brussel Universiteit Gent

Veerle E. Piette, Luc Deliens, Jutte Van Der Werff Ten Bosch, Kim Beernaert, Joachim Cohen

OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurological conditions, and genetic/congenital conditions, to be applied to administrative health data containing medication and treatment variables.

STUDY DESIGN: Modified RAND/University of California at Los Angeles (RAND/UCLA) appropriateness method. We identified potential indicators per ...

Fertility status among long-term childhood acute lymphoblastic leukaemia survivors enrolled between 1971 and 1998 in EORTC CLG studies Vrije Universiteit Brussel KU Leuven

Anne Uyttebroeck

STUDY QUESTION: What are the fertility outcomes of male and female childhood acute lymphoblastic leukaemia (ALL) long-term survivors?

SUMMARY ANSWER: We observed similar fertility outcomes in both male and female childhood ALL survivors compared with the general population, with the exception of a higher proportion of miscarriages among partners of male survivors.

WHAT IS KNOWN ALREADY: Survival after childhood ALL is currently ...

Sociodemographic and Medical Determinants of Quality of Life in Long-Term Childhood Acute Lymphoblastic Leukemia Survivors Enrolled in EORTC CLG Studies Vrije Universiteit Brussel KU Leuven

Charlotte Sleurs, Jammbe Musoro, Ali Rowsell, Sofia Chantziara, Corneel Coens, Madeline Pe, Pierre Missotten

BACKGROUND: due to increasing survival rates in childhood acute lymphoblastic leukemia (ALL), the number of survivors has been expanding. A significant proportion of these survivors can experience long-term emotional and psychosocial problems. However, the exact risk factors remain inconclusive. We investigated potential risk factors for decreased daily life quality and life challenges in long-term childhood ALL survivors enrolled between ...

The association between vincristine-induced peripheral neuropathy and health-related quality of life in children with cancer Vrije Universiteit Brussel KU Leuven

Mirjam Esther van de Velde, Marleen H van den Berg, Gertjan J L Kaspers, Floor C H Abbink, Jos W R Twisk, Inge M van der Sluis, Cor van den Bos, Marry M van den Heuvel-Eibrink, Heidi Segers

PURPOSE: Vincristine (VCR) is a chemotherapeutic agent used in the treatment of pediatric oncology patients, but its main toxicity is VCR-induced peripheral neuropathy (VIPN). However, whether VIPN has an effect on health-related quality of life (HR-QoL) in children during treatment is unknown. Therefore, the aim of our study was to investigate the association between VIPN and HR-QoL in children starting treatment for cancer.

METHODS: ...