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1. Nationwide clinical practice variation for reconstructive surgery following oral cavity cancer from the Dutch Head and Neck Audit: are we all doing the same?

Author

Takes, R.P., van Es, R.J.J., Hoebers, F.J.P., van den Broek, G., Dirven, R., Baatenburg de Jong, R.J., Halmos, G.B., Hendrickx, J.J., Lacko, M., Vaassen, L.A.A., van Bemmel, A.J.M, Oomens, M.A.E., Ghaeminia, H., Schwandt, L.Q., Krabbe, C.A., Vesseur, A., Bun, R., Klein Nulent, T.J.W., Jansen, J.C., Willems, Stefan S.M., de Jel, Dominique V.C., van Oorschot, Hanneke D., Meijer, Puck C.A., Smeele, Ludwig E., Young-Afat, Danny A., and Rakhorst, Hinne A.

Published
2024
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2. Personalized neck irradiation guided by sentinel lymph node biopsy in patients with squamous cell carcinoma of the oropharynx, larynx or hypopharynx with a clinically negative neck: (Chemo)radiotherapy to the PRIMary tumor only. Protocol of the PRIMO study

Author

van den Bosch, S., Takes, R.P., de Ridder, M., de Bree, R., Al-Mamgani, A., Schreuder, W.H., Hoebers, F.J.P., van Weert, S., Elbers, J.B.W., Hardillo, J.A., Meijer, T.W.H., Plaat, B.E.C., de Jong, M.A., Jansen, J.C., Wellenstein, D.J., van den Broek, G.B., Vogel, W.V., Arens, A.I.J., and Kaanders, J.H.A.M.

Published
2024
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3. Patients’ and Healthcare Professionals’ Perspectives on Better Use of Patient-Reported Outcome Measures in Head and Neck Cancer

Author

Hendrickx, J.J., Hoebers, F.J.P., Speksnijder, C.M., Witjes, M.J.H., Ghaeminia, H., Lacko, M., Baatenburg de Jong, R.J., Takes, R.P., van Es, R.J.J., Verschuur, H.P., Jansen, J.C., Vrieze, O. Hamming, van Bemmel, A.J.M., Schwandt, L.Q., de Jel, Dominique V.C., Young-Afat, Danny A., Ooms-Renckens, Marleen M., Smeele, Ludi E., and Rakhorst, Hinne A.

Published
2023
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5. Reestablishment of the Smile after Hypoglossal–Facial Nerve Transfer: What Can We Learn?

Author

Kleijwegt, M.C., Wever, C., Hensen, E.F., Jansen, J.C., Koot, R.W., and Malessy, M.J.A.

Subjects
ACOUSTIC neuroma, PHYSICIANS, SKULL base, VESTIBULAR nerve, SMILING, HYPOGLOSSAL nerve
Abstract

Objective The aim of this study was to assess the ability to smile following a hypoglossal–facial nerve transfer (N12–N7). Design This is a retrospective chart review. Setting National tertiary referral center for skull base pathology. Participants Seventeen patients. Main Outcome Measures The ability to smile following an N12–N7 transfer was assessed by five medical doctors on photographs of the whole face and frontal, orbital, and oral segments. The (segmented) photographs were scored for the symmetry, asymmetry, and correct or incorrect assessment of the affected side. Results Seventeen patients were analyzed by 5 assessors providing 85 assessments. The whole face at rest was judged symmetrical in 26% of the cases and mildly asymmetrical in 56%. Frontal, orbital, and oral segments were symmetrical in 63, 20, and 35%, respectively. The affected side was correctly identified in 76%. When smiling, the whole face was symmetrical in 6% and mildly asymmetric in 59%. The affected side was correctly identified in 94%. The frontal, orbital, and oral segments during smiling were symmetrical in 67, 15, and 6%, respectively. The affected side of the frontal, orbital, and buccal facial segments during smiling was correctly identified in 89, 89, and 96%, respectively. Interobserver variability with Fleiss' kappa analysis showed that the strength of the agreement during smile of the total face was good (0.771) Conclusion Following an N12–N7 transfer, a good facial symmetry at rest can be achieved. During smiling, almost all patients showed asymmetry of the face, which was predominantly determined by the orbital and oral segments. To improve the ability to smile after an N12–N7 transfer, additional procedures are needed. [ABSTRACT FROM AUTHOR]

Published
2024
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6. Deep learning-based auto-segmentation of paraganglioma for growth monitoring

Author

Sijben, E.M.C. (Evi), Jansen, J.C. (Jeroen), Bosman, P.A.N. (Peter), Alderliesten, T. (Tanja), Sijben, E.M.C. (Evi), Jansen, J.C. (Jeroen), Bosman, P.A.N. (Peter), and Alderliesten, T. (Tanja)

Abstract

Volume measurement of a paraganglioma (a rare neuroendocrine tumor that typically forms along major blood vessels and nerve pathways in the head and neck region) is crucial for monitoring and modeling tumor growth in the long term. However, in clinical practice, using available tools to do these measurements is time-consuming and suffers from tumor-shape assumptions and observer-to-observer variation. Growth modeling could play a significant role in solving a decades-old dilemma (stemming from uncertainty regarding how the tumor will develop over time). By giving paraganglioma patients treatment, severe symptoms can be prevented. However, treating patients who do not actually need it, comes at the cost of unnecessary possible side effects and complications. Improved measurement techniques could enable growth model studies with a large amount of tumor volume data, possibly giving valuable insights into how these tumors develop over time. Therefore, we propose an automated tumor volume measurement method based on a deep learning segmentation model using no-new-UNnet (nnUNet). We assess the performance of the model based on visual inspection by a senior otorhinolaryngologist and several quantitative metrics by comparing model outputs with manual delineations, including a comparison with variation in manual delineation by multiple observers. Our findings indicate that the automatic method performs (at least) equal to manual delineation. Finally, using the created model, and a linking procedure that we propose to track the tumor over time, we show how additional volume measurements affect the fit of known growth functions.

Published
2024
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9. Patients’ and Healthcare Professionals’ Perspectives on Better Use of Patient-Reported Outcome Measures in Head and Neck Cancer

Author

de Jel, Dominique V.C., primary, Young-Afat, Danny A., additional, Ooms-Renckens, Marleen M., additional, Smeele, Ludi E., additional, Rakhorst, Hinne A., additional, Hendrickx, J.J., additional, Hoebers, F.J.P., additional, Speksnijder, C.M., additional, Witjes, M.J.H., additional, Ghaeminia, H., additional, Lacko, M., additional, Baatenburg de Jong, R.J., additional, Takes, R.P., additional, van Es, R.J.J., additional, Verschuur, H.P., additional, Jansen, J.C., additional, Vrieze, O. Hamming, additional, van Bemmel, A.J.M., additional, and Schwandt, L.Q., additional

Published
2023
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13. Clinical consensus guideline on the management of phaeochromocytoma and paraganglioma in patients harbouring germline SDHD pathogenic variants.

Author

Taïeb, D., Wanna, G.B., Ahmad, M., Lussey-Lepoutre, C., Perrier, N.D., Nölting, S., Amar, L., Timmers, H.J.L.M., Schwam, Z.G., Estrera, A.L., Lim, M., Pollom, E.L., Vitzthum, L., Bourdeau, I., Casey, R.T., Castinetti, F., Clifton-Bligh, R., Corssmit, E.P.M., Krijger, R.R. de, Rivero, J. Del, Eisenhofer, G., Ghayee, H.K., Gimenez-Roqueplo, A.P., Grossman, A., Imperiale, A., Jansen, J.C., Jha, A., Kerstens, M.N., Kunst, H.P.M., Liu, J.K., Maher, E.R., Marchioni, D., Mercado-Asis, L.B., Mete, O., Naruse, M., Nilubol, N., Pandit-Taskar, N., Sebag, F., Tanabe, A., Widimsky, J., Meuter, L., Lenders, J.W.M., Pacak, K., Taïeb, D., Wanna, G.B., Ahmad, M., Lussey-Lepoutre, C., Perrier, N.D., Nölting, S., Amar, L., Timmers, H.J.L.M., Schwam, Z.G., Estrera, A.L., Lim, M., Pollom, E.L., Vitzthum, L., Bourdeau, I., Casey, R.T., Castinetti, F., Clifton-Bligh, R., Corssmit, E.P.M., Krijger, R.R. de, Rivero, J. Del, Eisenhofer, G., Ghayee, H.K., Gimenez-Roqueplo, A.P., Grossman, A., Imperiale, A., Jansen, J.C., Jha, A., Kerstens, M.N., Kunst, H.P.M., Liu, J.K., Maher, E.R., Marchioni, D., Mercado-Asis, L.B., Mete, O., Naruse, M., Nilubol, N., Pandit-Taskar, N., Sebag, F., Tanabe, A., Widimsky, J., Meuter, L., Lenders, J.W.M., and Pacak, K.

Abstract

Item does not contain fulltext, Patients with germline SDHD pathogenic variants (encoding succinate dehydrogenase subunit D; ie, paraganglioma 1 syndrome) are predominantly affected by head and neck paragangliomas, which, in almost 20% of patients, might coexist with paragangliomas arising from other locations (eg, adrenal medulla, para-aortic, cardiac or thoracic, and pelvic). Given the higher risk of tumour multifocality and bilaterality for phaeochromocytomas and paragangliomas (PPGLs) because of SDHD pathogenic variants than for their sporadic and other genotypic counterparts, the management of patients with SDHD PPGLs is clinically complex in terms of imaging, treatment, and management options. Furthermore, locally aggressive disease can be discovered at a young age or late in the disease course, which presents challenges in balancing surgical intervention with various medical and radiotherapeutic approaches. The axiom-first, do no harm-should always be considered and an initial period of observation (ie, watchful waiting) is often appropriate to characterise tumour behaviour in patients with these pathogenic variants. These patients should be referred to specialised high-volume medical centres. This consensus guideline aims to help physicians with the clinical decision-making process when caring for patients with SDHD PPGLs.

Published
2023

14. Long‐Term Quality of Life of Vestibular Schwannoma Patients: A Longitudinal Analysis

Author

Neve, O.M., Jansen, J.C., Koot, R.W., Ridder, M. de, Benthem, P.P.G. van, Stiggelbout, A.M., and Hensen, E.F.

Subjects
long-term, vestibular schwannoma, quality of life, Otorhinolaryngology, otorhinolaryngologic diseases, Surgery, radiotherapy, humanities
Abstract

Objective: Vestibular schwannoma management aims to maintain optimal quality of life (QoL) while preventing severe sequelae of the tumor or its treatment. This study assessed long-term QoL of patients with vestibular schwannoma in relation to treatment modality and decisional regret. Study Design: A longitudinal study, in which clinical and QoL data were used that were cross-sectionally acquired in 2014 and again in 2020 from the same patient group. Setting: A tertiary expert center for vestibular schwannoma care in the Netherlands. Methods: QoL was measured by the Penn Acoustic Quality of Life (PANQOL) scale. Changes in time were assed using a linear mixed model. In addition, the Decision Regret Scale was analyzed. Results: Of 867 patients, 536 responded (62%), with a median follow-up of 11 years. All PANQOL subdomain scores remained stable over time and did not exceed minimal clinically important difference (MCID) levels. Time since treatment did not affect QoL. Patients had comparable average QoL scores and proportions of patients with changing QoL scores (ie, exceeding the MCID) over time, irrespective of the received initial treatment. Female patients and those who required salvage therapy (either by radiotherapy or surgery) reported a lower QoL. The latter patient group reported the highest decisional regret. Conclusion: On average, the long-term QoL of patients with vestibular schwannoma is comparable for patients under active surveillance and those who have received active treatment, and it remains stable over time. This suggests that, on average, preservation of QoL of patients with vestibular schwannoma is feasible when adequately managed.

Published
2022
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15. Vestibular complaints impact on the long-term quality of life of vestibular schwannoma patients

Author

Fuentealba-Bassaletti, C., Neve, O.M., Esch, B.F. van, Jansen, J.C., Koot, R.W., Benthem, P.P.G. van, and Hensen, E.F.

Subjects
Quality of life, Vestibular schwannoma, Otorhinolaryngology, Radiotherapy, Vertigo, Cerebellopontine angle tumor, Surgery, Neurology (clinical), Active surveillance, Dizziness, Sensory Systems
Abstract

Objective: To analyze the effect of dizziness-related symptoms on the long-term quality of life (QoL) of patients with unilateral vestibular schwannoma. Methods: In this cross-sectional study, patients with a unilateral vestibular schwannoma diagnosed between 2004 and 2013 completed a disease-specific QoL questionnaire (Penn Acoustic Neuroma Quality of Life [PANQOL]) and the Dizziness Handicap Inventory (DHI) in 2020. Linear regression was performed to assess the correlation between QoL and the DHI total score, and the scores of the DHI functional, emotional, and physical subdomains. Potential confounders such as age, sex, tumor size at baseline, and treatment modality (active surveillance, surgery, or radiotherapy) were included in the model. Results: In total, 287 of 479 patients (59%) experienced dizziness with a median follow-up of 10 years. The DHI total score was significantly associated with the PANQOL total score. On average, we found a reduction of 0.7 points on the PANQOL for each additional point on the DHI. The DHI emotional subdomain was the most prominent determinant of poorer QoL. Each point on the DHI emotional subscale was associated with a reduction of 1.3 on the PANQOL score. Treatment modality did not have a clinically relevant effect on dizziness-related QoL. Conclusions: Even mild dizziness can have a significant and clinically relevant effect on the QoL of patients with unilateral vestibular schwannoma in the long term. This holds true for all treatment modalities. Addressing the vestibular problems may improve QoL in vestibular schwannoma patients, and DHI subscale analysis may help tailor the optimal vestibular intervention.

Published
2023

16. A prediction model for recurrence after translabyrinthine surgery for vestibular schwannoma: toward personalized postoperative surveillance

Author

Boer, N.P. de, Bohringer, S., Koot, R.W., Malessy, M.J.A., Mey, A.G.L. van der, Jansen, J.C., and Hensen, E.F.

Subjects
Vestibular schwannoma, Otorhinolaryngology, Prediction model, Recurrence, Translabyrinthine surgery, General Medicine
Abstract

Purpose The aim of this study is to compute and validate a statistical predictive model for the risk of recurrence, defined as regrowth of tumor necessitating salvage treatment, after translabyrinthine removal of vestibular schwannomas to individualize postoperative surveillance. Methods The multivariable predictive model for risk of recurrence was based on retrospectively collected patient data between 1995 and 2017 at a tertiary referral center. To assess for internal validity of the prediction model tenfold cross-validation was performed. A ‘low’ calculated risk of recurrence in this study was set at Results A total of 596 patients with 33 recurrences (5.5%) were included for analysis. The final prediction model consisted of the predictors ‘age at time of surgery’, ‘preoperative tumor growth’ and ‘first postoperative MRI outcome’. The area under the receiver operating curve of the prediction model was 89%, with a C-index of 0.686 (95% CI 0.614–0.796) after cross-validation. The predicted probability for risk of recurrence was low ( Conclusion This study presents a well-performing prediction model for the risk of recurrence after translabyrinthine surgery for vestibular schwannoma. The prediction model can be used to tailor the postoperative surveillance to the estimated risk of recurrence of individual patients. It seems that especially in patients with an estimated low risk of recurrence, the interval between the first and second postoperative MRI can be safely prolonged.

Published
2022
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17. Long-term in vitro 2D-culture of SDHB and SDHD-related human paragangliomas and pheochromocytomas

Author

Bayley, J.P., Rebel, H.G., Scheurwater, K., Duesman, D., Zhang, J., Schiavi, F., Korpershoek, E., Jansen, J.C., Schepers, A., Devilee, P., and Pathology

Subjects
Paraganglioma, Succinate Dehydrogenase, Multidisciplinary, Tyrosine 3-Monooxygenase, Phosphopyruvate Hydratase, Adrenal Gland Neoplasms, Lactates, Synaptophysin, Chromogranin A, Humans, Pheochromocytoma, Culture Media, Serum-Free, Germ-Line Mutation
Abstract

The neuroendocrine tumours paraganglioma and pheochromocytoma (PPGLs) are commonly associated with succinate dehydrogenase (SDH) gene variants, but no human SDH-related PPGL-derived cell line has been developed to date. The aim of this study was to systematically explore practical issues related to the classical 2D-culture of SDH-related human paragangliomas and pheochromocytomas, with the ultimate goal of identifying a viable tumour-derived cell line. PPGL tumour tissue/cells (chromaffin cells) were cultured in a variety of media formulations and supplements. Tumour explants and dissociated primary tumour cells were cultured and stained with a range of antibodies to identify markers suitable for use in human PPGL culture. We cultured 62 PPGLs, including tumours with confirmed SDHB, SDHC and SDHD variants, as well as several metastatic tumours. Testing a wide range of basic cell culture media and supplements, we noted a marked decline in chromaffin cell numbers over a 4–8 week period but the persistence of small numbers of synaptophysin/tyrosine hydroxylase-positive chromaffin cells for up to 99 weeks. In cell culture, immunohistochemical staining for chromogranin A and neuron-specific enolase was generally negative in chromaffin cells, while staining for synaptophysin and tyrosine hydroxylase was generally positive. GFAP showed the most consistent staining of type II sustentacular cells. Of the media tested, low serum or serum-free media best sustained relative chromaffin cell numbers, while lactate enhanced the survival of synaptophysin-positive cells. Synaptophysin-positive PPGL tumour cells persist in culture for long periods but show little evidence of proliferation. Synaptophysin was the most consistent cell marker for chromaffin cells and GFAP the best marker for sustentacular cells in human PPGL cultures.

Published
2022

26. Defective Lipid Droplet-Lysosome Interaction Causes Fatty Liver Disease as Evidenced by Human Mutations in TMEM199 and CCDC115

Author

Larsen, L.E., Boogert, Marjolein A. W. van den, Rios-Ocampo, W.A., Jansen, J.C., Conlon, D., Chong, P.L.E., Levels, J.H., Eilers, R.E., Sachdev, V.V., Zelcer, N., Raabe, T., He, M., Hand, N.J., Drenth, J.P.H., Rader, D.J., Stroes, E.S., Lefeber, D.J., Jonker, J.W., Holleboom, A.G., Larsen, L.E., Boogert, Marjolein A. W. van den, Rios-Ocampo, W.A., Jansen, J.C., Conlon, D., Chong, P.L.E., Levels, J.H., Eilers, R.E., Sachdev, V.V., Zelcer, N., Raabe, T., He, M., Hand, N.J., Drenth, J.P.H., Rader, D.J., Stroes, E.S., Lefeber, D.J., Jonker, J.W., and Holleboom, A.G.

Abstract

Contains fulltext : 244545.pdf (Publisher’s version ) (Open Access), BACKGROUND & AIMS: Recently, novel inborn errors of metabolism were identified because of mutations in V-ATPase assembly factors TMEM199 and CCDC115. Patients are characterized by generalized protein glycosylation defects, hypercholesterolemia, and fatty liver disease. Here, we set out to characterize the lipid and fatty liver phenotype in human plasma, cell models, and a mouse model. METHODS AND RESULTS: Patients with TMEM199 and CCDC115 mutations displayed hyperlipidemia, characterized by increased levels of lipoproteins in the very low density lipoprotein range. HepG2 hepatoma cells, in which the expression of TMEM199 and CCDC115 was silenced, and induced pluripotent stem cell (iPSC)-derived hepatocyte-like cells from patients with TMEM199 mutations showed markedly increased secretion of apolipoprotein B (apoB) compared with controls. A mouse model for TMEM199 deficiency with a CRISPR/Cas9-mediated knock-in of the human A7E mutation had marked hepatic steatosis on chow diet. Plasma N-glycans were hypogalactosylated, consistent with the patient phenotype, but no clear plasma lipid abnormalities were observed in the mouse model. In the siTMEM199 and siCCDC115 HepG2 hepatocyte models, increased numbers and size of lipid droplets were observed, including abnormally large lipid droplets, which colocalized with lysosomes. Excessive de novo lipogenesis, failing oxidative capacity, and elevated lipid uptake were not observed. Further investigation of lysosomal function revealed impaired acidification combined with impaired autophagic capacity. CONCLUSIONS: Our data suggest that the hypercholesterolemia in TMEM199 and CCDC115 deficiency is due to increased secretion of apoB-containing particles. This may in turn be secondary to the hepatic steatosis observed in these patients as well as in the mouse model. Mechanistically, we observed impaired lysosomal function characterized by reduced acidification, autophagy, and increased lysosomal lipid accumulation. These findings c

Published
2022

27. Evaluation of subclasses for T4-classified squamous cell carcinoma of the external auditory canal

Author

Nabuurs, C.H., Kievit, W., Leemans, C.R., Smit, C., Brekel, M.W. van den, Pauw, R.J., Laan, B. van der, Jansen, J.C., Lacko, M., Braunius, W.W., Dai, C., Shi, X., Danesi, G., Bouček, J., Takes, R.P., Kunst, H.P.M., Nabuurs, C.H., Kievit, W., Leemans, C.R., Smit, C., Brekel, M.W. van den, Pauw, R.J., Laan, B. van der, Jansen, J.C., Lacko, M., Braunius, W.W., Dai, C., Shi, X., Danesi, G., Bouček, J., Takes, R.P., and Kunst, H.P.M.

Abstract

Contains fulltext : 273921.pdf (Publisher’s version ) (Open Access), BACKGROUND: T4-classified squamous cell carcinoma (SCC) of external auditory canal (EAC) can potentially involve different anatomical structures, which could translate into different treatment strategies and survival outcomes within one classification. Our aim is to evaluate the clinical added value of T4-subclasses proposed by Lavieille and by Zanoletti. METHODS: Retrospective data, including patients with primary operated cT4-classified EAC SCC, was obtained from 12 international hospitals. We subclassified according to the T4-subclasses. The treatment strategies, disease-free survival (DFS) and overall survival per subclass were calculated. RESULTS: A total of 130 T4-classified EAC SCC were included. We found commonly used treatment strategies per subclass according to Lavieille and the DFS seems also to differ per subclass. Subclass according to Zanoletti showed comparable treatment strategies and survival outcomes per subclass. CONCLUSION: Our study suggests that the subclass according Lavieille might have added value in clinical practice to improve care of T4-classified EAC SCC.

Published
2022

33. List of contributors

Author

Acha, E., primary, Agrafiotis, C., additional, Allakhverdiev, S.I., additional, Anthony, E.J., additional, Basile, A., additional, Bensmann, B., additional, Bernardo, P., additional, Bonura, G., additional, Cambra, J.F., additional, Charpentier, P.A., additional, Dodds, P.E., additional, Fierro, J.L.G., additional, Frusteri, F., additional, García, L., additional, Guil, R., additional, Hanke-Rauschenbach, R., additional, Hossain, M.Z., additional, Idriss, H., additional, Inoue, K., additional, Iulianelli, A., additional, Jansen, J.C., additional, Koirala, A.R., additional, Lee, D.H., additional, Masukawa, H., additional, Millet, P., additional, Mougin, J., additional, Muradov, N., additional, Najafpour, M.M., additional, Navarro, R.M., additional, Poudyal, R.S., additional, Requies, J.M., additional, Roeb, M., additional, Sattler, C., additional, Scott, M., additional, Subramani, V., additional, Tiwari, I., additional, Tomo, T., additional, Tong, J., additional, and Veziroğlu, T.N., additional

Published
2015
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36. Liver disease in Congenital Disorders of Glycosylation

Author

Drenth, J.P.H., Lefeber, D.J., Jansen, J.C., Drenth, J.P.H., Lefeber, D.J., and Jansen, J.C.

Abstract

Radboud University, Promotores : Drenth, J.P.H., Lefeber, D.J., Contains fulltext : 228602.pdf (publisher's version ) (Open Access)

Published
2021

37. Liver disease in Congenital Disorders of Glycosylation.

Author

Jansen, J.C. and Jansen, J.C.

Subjects
Radboud Institute for Molecular Life Sciences., Radboudumc 11: Renal disorders., Radboudumc 11: Renal disorders RIMLS: Radboud Institute for Molecular Life Sciences.
Published
2021

47. Indian wind energy programme: performance and future directions

Author

Rajsekhar, B., Van Hulle, F., and Jansen, J.C.

Subjects
India -- Energy policy, Energy industry -- India, Business, Environmental issues, Petroleum, energy and mining industries
Abstract

India's wind-generated energy industry, initially developed with the use of capital-based incentives, now needs to be encouraged with production-based incentives. Regulation, especially through C-WET, the national wind energy center, is needed to encourage private sector investing and address commercial and state concerns.

Published
1999

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