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Objective: The web-based application Oncokompas was developed to support cancer patients to self-manage their symptoms. This qualitative study was conducted to obtain insight in patients' self-management strategies to cope with cancer and their experiences with Oncokompas as a fully automated behavioural intervention technology., Methods: Data were collected from semi-structured interviews with 22 participants (10 head and neck cancer survivors and 12 incurably ill patients). Interview questions were about self-management strategies and experiences with Oncokompas. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis., Results: Participants applied several self-management strategies, among which trying to stay in control and make the best of their situation. They described Oncokompas' added value: being able to monitor symptoms and having access to a personal online library. Main reasons for not using Oncokompas were concentration problems, lack of time or having technical issues. Recommendations were made for further development of Oncokompas, relating to its content, technical and functional aspects., Conclusions: Survivors and incurably ill patients use various self-management strategies to cope with cancer. The objectives of self-management interventions as Oncokompas correspond well with these strategies: taking a certain responsibility for your well-being and being in charge of your life as long as possible by obtaining automated information (24/7) on symptoms and tailored supportive care options., (© 2021 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.)

Salvage surgery after failed organ preservation treatment offers challenges for both the patient and the surgeon. The outcome is often uncertain and even today, 5-year overall survival does not exceed 50 per cent. The chemoradiotherapy induced toxicity asks for meticulous discussion and planning in a multidisciplinary manner in a changing environment of increasing incidence of human papillomavirus induced oropharyngeal tumours, evolving surgical techniques and patient participation. Herein, we discuss the latest literature on salvage surgery and the need for identifying the proper prognosticators to ensure for an optimal treatment plan in potentially salvageable patients., (© 2020 The Authors. Oral Diseases published by John Wiley & Sons Ltd.)

Background: Transoral robotic surgery (TORS) is increasingly used in head and neck surgery and in carcinoma of unknown primary (CUP) origin specifically. Due to the rising incidence of human papillomavirus (HPV)-related oropharyngeal squamous cell carcinoma (OPSCC), there is a rationale for finding ways to de-escalate treatment strategies. This review aims to test the hypothesis that TORS is a meaningful adjunct in the diagnostic (and therapeutic) pathway in CUP in head and neck., Methods: A structured search of the literature was performed with the search terms 'TORS' and 'Carcinoma of Unknown Primary'., Results: Two hundred and seventy four cases of CUP in which TORS was used were identified for further analysis. Workup for CUP was comparable in all series with regard to physical examination, fine and/or gross needle examination of cervical nodes, fibre optic endoscopy, imaging and robot assisted mucosectomy of the base of tongue (BOT). Identification rate of the primary tumour was 72% on average (range 17%- 90%), and 55%- 96% were HPV positive. Clear margins were achieved in 60% (range 0%-85%) of resected occult tumours. Complication rate of TORS BOT mucosectomy was low with mainly grade I-III sequelae according to Clavien-Dindo., Conclusions: Transoral robotic surgery seems to be a useful and safe adjunct in the diagnostic and therapeutic pathway in case of CUP in an era of increasing incidence of HPV-positive OPSCC., (© 2020 The Authors. Clinical Otolaryngology published by John Wiley & Sons Ltd.)

Rationale: This study evaluates the lymphatic drainage patterns and determines the accuracy of the sentinel lymph node biopsy (SLNB) in patients diagnosed with a cT1-2N0 OSCC and a history of neck surgery or radiotherapy in three Dutch head and neck centers., Materials and Methods: Retrospective analysis of 53 cT1-2N0 OSCC patients, who underwent SLNB between 2007 and 2016, after a history of neck surgery or radiotherapy. Ten patients had previous treatment of the neck only contralateral from the current tumour. These ten patients were not used for the analysis of lymphatic drainage patterns. The 43 patients with previous ipsilateral or bilateral treatment of the neck had a history of ipsilateral SLN extirpation (n = 9; 21%), neck dissection (n = 16; 37%), radiotherapy (n = 10; 23%), or combined neck dissection and radiotherapy (n = 8; 19%)., Results: SLNs were detected in 45 patients, resulting in an identification rate of 85% (45/53). Three patients (7%) had at least one positive SLN. One patient (1/45; 2%) was diagnosed with regional recurrence during the follow-up after a negative SLNB (sensitivity 75%, negative predictive value 98%). The first SLN was detected in level I-III in 58% of the patients, unexpected drainage patterns were observed in 30% (first SLN level IV 9% and level V 5% and contralateral neck in well-lateralized tumours 16%). In 12% no lymphatic drainage pattern was visible., Conclusions: SLNB seems to be a reliable procedure for neck staging of cT1-2N0 OSCC patients with a previously treated neck. SLNB determines the individual lymphatic drainage patterns, enabling visualization of unexpected drainage pattern variability in 30% of these patients., (Copyright © 2019 Elsevier Ltd. All rights reserved.)

Background: Monitoring and effectively improving oncologic integrated care requires dashboard information based on quality registrations. The dashboard includes evidence-based quality indicators (QIs) that measure quality of care. This study aimed to assess the quality of current integrated head and neck cancer care with QIs, the variation between Dutch hospitals, and the influence of patient and hospital characteristics. Methods: Previously, 39 QIs were developed with input from medical specialists, allied health professionals, and patients' perspectives. QI scores were calculated with data from 1,667 curatively treated patients in 8 hospitals. QIs with a sample size of >400 patients were included to calculate reliable QI scores. We used multilevel analysis to explain the variation. Results: Current care varied from 29% for the QI about a case manager being present to discuss the treatment plan to 100% for the QI about the availability of a treatment plan. Variation between hospitals was small for the QI about patients discussed in multidisciplinary team meetings (adherence: 95%, range 88%-98%), but large for the QI about malnutrition screening (adherence: 50%, range 2%-100%). Higher QI scores were associated with lower performance status, advanced tumor stage, and tumor in the oral cavity or oropharynx at the patient level, and with more curatively treated patients (volume) at hospital level. Conclusions: Although the quality registration was only recently launched, it already visualizes hospital variation in current care. Four determinants were found to be influential: tumor stage, performance status, tumor site, and volume. More data are needed to assure stable results for use in quality improvement., (Copyright © 2018 by the National Comprehensive Cancer Network.)

Background: Tumors of the parapharyngeal space (PPS) are rare, accounting for 0.5-1.5% of all head and neck tumors. The anatomy of the PPS is responsible for a wide variety of tumors arising from the PPS. This series of 99 PPS tumors provides an overview of the clinical course and management of PPS tumors., Materials and Methods: This retrospective study included clinical data from patients treated for PPS tumors from 1991 to 2012 (warranting at least a 4-year follow-up) at the VU University Medical Center, Amsterdam, The Netherlands., Results: Fifty percent were salivary gland tumors, 41% were neurogenic and 9% had a different origin. 18.2% of the PPS tumors were malignant. The most reported symptom at presentation was swelling of the neck and throat. In 14%, the PPS tumor was an accidental finding following imaging for other diagnostic reasons. Cytology showed an accuracy rate of 73.1% (19/26). The positive predictive value of a malignant cytology result was 86% (95% CI 42.1-99.6%). Surgery was performed in 55 patients (56%). The most frequently performed approach (56%) was the cervical-transparotid approach, followed by the cervical (25%), transmandibular (16%) and transoral (2%) approach. Nine patients died of the disease, of which seven patients had a malignant salivary gland tumor, one patient had a pleomorphic adenoma at first diagnosis which degenerated into carcinoma ex pleomorphic adenoma and one patient died of metastatic renal cell carcinoma., Conclusion: This large single-centre report on PPS tumors shows that careful diagnostic work up and proper surgical planning are important in this specific and rare group of head and neck tumors. Surgery was the main treatment (56%) for parapharyngeal tumors. Management of parapharyngeal neurogenic neoplasms generally consists of active surveillance due to peri-operative risk for permanent cranial nerve damage. The histopathological diagnoses were consistent with previous reports.

Background: Audit and feedback on professional practice and health care outcomes are the most often used interventions to change behaviour of professionals and improve quality of health care. However, limited information is available regarding preferred feedback for patients, professionals and health insurers., Objective: Investigate the (differences in) preferences of receiving feedback between stakeholders, using the Dutch Head and Neck Audit as an example., Methods: A total of 37 patients, medical specialists, allied health professionals and health insurers were interviewed using semi-structured interviews. Questions focussed on: "Why," "On what aspects" and "How" do you prefer to receive feedback on professional practice and health care outcomes?, Results: All stakeholders mentioned that feedback can improve health care by creating awareness, enabling self-reflection and reflection on peers or colleagues, and by benchmarking to others. Patients prefer feedback on the actual professional practice that matches the health care received, whereas medical specialists and health insurers are interested mainly in health care outcomes. All stakeholders largely prefer a bar graph. Patients prefer a pie chart for patient-reported outcomes and experiences, while Kaplan-Meier survival curves are preferred by medical specialists. Feedback should be simple with firstly an overview, and 1-4 times a year sent by e-mail. Finally, patients and health professionals are cautious with regard to transparency of audit data., Conclusions: This exploratory study shows how feedback preferences differ between stakeholders. Therefore, tailored reports are recommended. Using this information, effects of audit and feedback can be improved by adapting the feedback format and contents to the preferences of stakeholders., (© 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.)

Background: We examined the assumption in conventional teaching about metastatic adenoid cystic carcinoma (ACC) being an indolent type of disease., Methods: A single center analysis of 105 cases of ACC was performed. Radiographs were reviewed and tumor response to chemotherapy was measured. Distant disease-free survival (DDFS) and time to death since distant metastases diagnosis were analyzed., Results: Forty-two percent of the patients were diagnosed with distant metastases. DDFS showed significant negative associations with advanced T classification, N+ classification, solid type tumor, and positive surgical margins. Distant metastases (91%) developed in the first 5 years after presentation. Median distant metastatic survival was 13.8 months. The most frequent organ sited was the lung. Solid type ACC showed a preponderance for multiorgan metastases (17/28; 61%). Distant metastases seemed not to occur in case of clear surgical margins. Solid type ACC had a significant poorer survival after development of distant metastases., Conclusion: Metastatic ACC is not always an indolent disease. © 2016 Wiley Periodicals, Inc. Head Neck 39: 456-463, 2017., (© 2016 Wiley Periodicals, Inc.)

Background: Sentinel node biopsy (SNB) in head and neck cancer is recently introduced as the staging technique of oral squamous cell carcinoma. We report the results of SNB in patients diagnosed with a T1-T2 oral squamous cell carcinoma and clinically negative (N0) neck in a single center., Methods: A retrospective analysis of 90 previously untreated patients who underwent SNB between 2007 and 2012 was performed. The SNB procedure consisted of preoperatively performed lymphoscintigraphy, intraoperative detection using blue dye, and gamma probe guidance and histopathologic examination including step-serial sectioning (SSS) and immunohistochemical (IHC) staining. A positive SNB was followed by neck dissection, whereas regular follow-up with ultrasound-guided fine-needle aspiration cytology (FNAC) was done in case of a negative SNB., Results: The lymphoscintigraphic identification rate was 98% (88 of 90 patients) and the surgical detection rate was 99% (87 of 88 patients). The upstaging rate was 30%. Sensitivity of SNB was 93% and the negative predictive value was 97%. The median follow-up was 18 months (range, 2-62 months). Overall survival (OS) and disease-free survival (DFS) for SNB negative were 100% and 84% and for SNB positive patients 73% and 88%, respectively., Conclusion: SNB is a reliable diagnostic staging technique for the clinically negative neck in patients with early-stage (T1-T2, cN0) oral squamous cell carcinoma., (© 2014 Wiley Periodicals, Inc.)

Background: Histopathological grading of adenoid cystic carcinoma (ACC) is a controversial issue. It is generally agreed that solid type ACC has a relatively poor prognosis. However, the amount of solid regions within this often mixed type tumor that predicts a poor prognosis is not firmly established. Some authors stipulate that the presence of a solid component regardless of the amount is a poor prognosticator where others argue that the amount should be taken into consideration. Two grading systems most commonly used are those described by Perzin et al./Szanto et al. and Spiro et al., respectively. They report that prognosis of ACC is poor if >30% and >50% of the tumor volume has a solid growth pattern, respectively., Material and Methods: The described grading systems are applied to a series of 81 surgically treated cases of ACC at the VU University Medical Center, Amsterdam, The Netherlands. Moreover, we introduced an alternative grading system, in which the presence of a solid component, irrespective of its amount, is considered. All three systems of grading were tested for inter-observer concordance and prediction of prognosis., Results: Inter-observer concordance for grading ACC according to Perzin et al./Szanto et al. and Spiro et al., proved to be moderate with Kappa Scores of 0.393 and 0.433, respectively. Our alternative grading system yielded inter-observer concordance with a Cohen's kappa result of 0.990. All systems were comparable in discriminating patients with poor clinical outcome. Histopathological grade proved to be an independent prognosticator., Conclusion: The presence of any solid component in ACC is a negative prognosticator, and can histopathologically be diagnosed with a high reliability. These results suggest to merely register the presence or absence of a solid tumor component since its inter-observer variability is very low, its reproducibility is high and its predictive value is comparable to the traditional grading systems used., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

Background: Adenoid cystic carcinoma is a rare salivary gland malignancy with a poor disease free survival due to frequent distant metastases and late local recurrences. Previous single-center reports on outcome mostly encompass small series. In this report a relative large series of 105 cases is analyzed, all treated at the VU University Medical Center, Amsterdam, The Netherlands over a 30-year period in which treatment strategies remained unchanged., Methods: All cases of ACC of the head and neck between 1979 and 2009 at our institution were analyzed through a medical chart review. Recurrence patterns and possible prognostic factors (T-stage, N-status, age, gender, type of salivary gland involved, histological grade, surgical margins, perineural invasion (PNI) and postoperative radiotherapy (RT)) were analyzed., Results: One-hundred and five cases of ACC of the head and neck were identified. Five-, ten- and twenty-year survival rates for overall survival were 68%, 52% and 28%, respectively. T-stage, N-status, surgical margins, histological subtype and age were highly significant predictors for survival. PNI was not a negative prognosticator., Conclusions: T-stage, N-status, surgical margins, histological grade and age are the main predictors of survival-outcome in ACC of the head and neck. Distant metastasis frequently develop, mainly in the first 5 years post treatment. Local recurrences often develop even later on, warranting long term follow up of patients treated for ACC. Grade III ACC should be considered a specific entity within the group of ACC due to its typical aggressive biological behavior and relatively poor outcome, implicating the need for an improved adjuvant treatment., (Copyright © 2013. Published by Elsevier Ltd.)