Nasopharyngeal carcinoma in children and adolescents: The EXPeRT/PARTNER diagnostic and therapeutic recommendations

Ben-Ami, Tal; Kontny, Udo; Surun, Aurore; Brecht, Ines B.; Almaraz, Ricardo López; Dragomir, Monica; Pourtsidis, Apostolos; Casanova, Michela; Fresneau, Brice; Bisogno, Gianni; Schneider, Dominik T.; Réguerre, Yves; Bień, Ewa; Stachowicz‐Stencel, Teresa; Österlundh, Gustaf; Wygoda, Marc; Janssens, Geert O.; Zsíros, József; Jehanno, Nina; Brisse, H.; Gandola, Lorenza; Christiansen, Hans; Claude, L.; Ferrari, Andrea; Rodríguez‐Galindo, Carlos; Orbach, Daniel

doi:10.1002/pbc.29018

Cited by 15 publications

(24 citation statements)

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“…Similar cooperative analyses have also been established for colorectal carcinoma and malignant melanoma [16,23]. These works have been the basis for establishing closer international collaboration with the funding of the European Commission as part of the ExPO-r-Net (European Expert Pediatric Oncology Reference Network for Diagnostics and Treatment) and partner projects [1,3,5,16,17,26,34,37]. By joining international groups into one registry, it becomes possible to gain further knowledge, especially for very rare tumors.…”

Section: Discussionmentioning

confidence: 75%

Rare Tumors in Children and Adolescents – the STEP Working Groupʼs Evolution to a Prospective Registry

et al. 2021

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Background Very rare tumors (VRT) in children and adolescents have such a low incidence that until recently, they have not been integrated into the clinical and scientific network of pediatric oncology. Data is very limited and consistent treatment strategies are missing. Thus, VRTs are classic orphan diseases. To counteract this problem, the Arbeitsgemeinschaft für Seltene Tumorerkrankungen in der Pädiatrie (STEP) was founded. Here we report on patient recruitment during the first 10 years. Patients Patients aged up to 18 years and not included in any other clinical trial or GPOH registry were included in this analysis. Methods Data was collected from 2008 to 2018 by means of a standardized form. The recorded diagnoses were descriptively analyzed focusing on histology, localization, and year of report. Results A total of 623 patients with VRTs were registered. During 2008–2014, the annual number of registrations was around 40 and is around 90 since 2015. Most frequent diagnoses included tumors of the skin (n=150), tumors of the gastrointestinal tract (n=102), tumors of the gonads (n=77), the ENT region (n=68), and miscellaneous tumors (n=107). Discussion With the establishment of central structures for clinical consultation and documentation of VRTs, the number of registrations increased. Comprehensively, VRTs are as common as other classic pediatric oncology tumors, but extremely heterogeneous in terms of localization, histology, and prognosis. By a centralized and complete registration and analysis of VRTs, also in collaboration with international partners, it is possible to develop treatment strategies and thus greatly increase treatment quality.

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Section: Discussionmentioning

confidence: 75%

Rare Tumors in Children and Adolescents – the STEP Working Groupʼs Evolution to a Prospective Registry

et al. 2021

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“…Specifically, IC with cisplatin and 5-fluorouracil, CCRT, and considerable maintenance with IFN-β were recommended for selected pediatric patients with NPC at high risk and advanced stage. 12 Additionally, 15 patients (3.2%) received RT alone in the IMRT era in the current study. Therefore, future efforts will be focused on comparing treatment modalities in more homogeneous patient groups.…”

Section: Discussionmentioning

confidence: 90%

Association of Treatment Advances With Survival Rates in Pediatric Patients With Nasopharyngeal Carcinoma in China, 1989-2020

et al. 2022

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IMPORTANCE Advanced techniques and treatment methods have been found to be associated with improved survival rates in adults with nasopharyngeal carcinoma (NPC); however, not much is known about associations in pediatric patients. OBJECTIVETo investigate whether advanced imaging diagnosis, radiotherapy (RT) technology, and treatment modality are associated with survival in pediatric patients with NPC. DESIGN, SETTING, AND PARTICIPANTS In this retrospective cohort study, 810 pediatric patients ages 21 years and younger with nonmetastatic NPC diagnosed from 1989 to 2020 at a single cancer center in China were included. Data were analyzed from April through December 2021.EXPOSURES Patients were divided into 3 groups by initial treatment date (ie, 1989-2002, 2003-2011, and 2012-2020). Associations between advances in technology and treatment and survival were investigated. Comparisons of advances vs older technology and treatments included those in imaging diagnosis (magnetic resonance imaging [MRI] vs computed tomography [CT] and positron emission tomography [PET]-CT with MRI vs CT), radiotherapy (RT) techniques (intensity-modulated RT [IMRT] or TomoTherapy [TOMO] vs 2-dimensional conventional radiotherapy [2D-CRT] or 3-dimensional conventional radiotherapy [3D-CRT]), and treatment methods (concurrent chemoradiotherapy [CCRT] vs RT alone, induction chemotherapy [IC] with CCRT vs RT alone, and CCRT or RT with adjuvant chemotherapy [AC] vs RT alone). MAIN OUTCOMES AND MEASURES The primary end point was progression-free survival (PFS).Secondary end points were overall survival (OS), distant metastasis-free survival, and locoregional recurrence-free survival. Cox and competing-risks regression were used to estimate hazard ratios (HRs) and 95% CIs for associations between variables and survival. RESULTS Among 810 pediatric patients with NPC, the median (IQR) age was 18 (15-20) years, and there were 577 [71.2%] male patients. This included 122 patients in the 1989 to 2002 period, 212 patients in the 2003 to 2011 period, and 476 patients in the 2012 to 2020 period. The 5-year PFS and

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“…In this scoring system, we have listed the main information that a reasonable doctor should give to the patient about NPC. We adapted the scoring systems made in previous studies for NPC in order to evaluate the YouTube™ videos as well as reviewing the current literature (Ben-Ami et al, 2021;Bossi et al, 2021). The usefulness score consisted of a total of 12 items; Ebstein Barr virus, nutrition and habits (Salted fish, smoking, and alcohol), geographical distribution, age, gender and genetics, nasal obstruction, epistaxis, neck mass, additional symptoms (otitis media, sinusitis, diplopia, and facial paresthesia), diagnosis, treatment options, and progress of the disease.…”

Section: Resultsmentioning

confidence: 99%

Assessment of Videos on YouTubeTM about Nasopharyngeal Cancer in Terms of Accuracy, Reliability and Understandability

Eker

Sürmelioğlu

Yücel

et al. 2022

Asian Pac J Cancer Prev

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Introduction: In the internet era we live in, it is very easy to access information. While this situation has positive effects for patients using the internet, it also brings some negative effects. The effects of the quality of YouTube™ videos on nasopharyngeal cancer were examined. Methods: “Nasopharyngeal Cancer” as search term was used to conduct a search on YouTube™. The ‘Sort by’ search filter was set at ‘relevance’, which is the default for YouTube™ searches. The first 250 results were reviewed and analyzed. After the videos were eliminated according to the exclusion criteria, 45 videos were evaluated by two authors. Video materials were categorized according to “video type” and “source of content”. According to “video type” and “source of content” the videos were categorized into two as educational and testimonial and three as medical institution, medical website, and individual users. After recording the features of all evaluated videos, accuracy score, audiovisual score, modified discern score, patient education materials assessment tool for audiovisual materials (PEMAT) score and usefulness score were determined for each video to evaluate the accuracy, reliability, and understandability of the videos. Results: The usefulness score, modified discern score, and accuracy score of the educational videos were significantly higher than testimonial videos (p<0.001 for all). Educational videos provided more useful and accurate video content than testimonial videos. In addition, it was also determined that the median PEMAT actionability score and audiovisual score of the individual group were statistically significantly lower than medical institutions and medical websites (p=0.001 and p<0.001, respectively). The videos provided by medical institutions, including universities, did not have a significant advantage over other groups in terms of accuracy, reliability, and usefulness. Conclusion: Healthcare videos concerning nasopharyngeal cancer on YouTube™ are heterogeneous and are not peer reviewed. Therefore, medical professions on nasopharyngeal cancer need to upload more accurate, reliable and easy to understand videos onto online platforms such as YouTube™.

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Nasopharyngeal carcinoma in children and adolescents: The EXPeRT/PARTNER diagnostic and therapeutic recommendations

Cited by 15 publications

References 98 publications

Rare Tumors in Children and Adolescents – the STEP Working Groupʼs Evolution to a Prospective Registry

Rare Tumors in Children and Adolescents – the STEP Working Groupʼs Evolution to a Prospective Registry

Association of Treatment Advances With Survival Rates in Pediatric Patients With Nasopharyngeal Carcinoma in China, 1989-2020

Assessment of Videos on YouTubeTM about Nasopharyngeal Cancer in Terms of Accuracy, Reliability and Understandability

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