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Background: Head and neck squamous cell cancer (HNSCC) has a poor prognosis, with approximately 25-30% of patients transitioning into the palliative phase at some point. The length of this phase is relatively short, with a median duration of five months. Patients in this stage often have increased prognostic information needs. Unfortunately, predicting individual life expectancy in this phase is particularly challenging, as physicians and patients tend to overestimate survival. To address this issue, we developed the prognostic model OncologIQ Palliative based on user preferences. In this study, we now aim to assess the clinical impact of utilizing this model during counselling., Methods: This study will employ both quantitative and qualitative approaches. The primary outcome is decisional conflict and satisfaction with the decision-making process after counselling without (cohort 1) and with (cohort 2) OncologIQ Palliative. Therefore, a prospective sequential cohort study will be conducted. Secondary outcomes include the amount of palliative treatment, overall survival rates, and quality of life. These measurements will be collected after the intervention. Additionally, patients' perspectives on the decision-making process and proactive care planning, including end-of-life discussions, will be explored through interviews., Discussion: By offering more personalized prognostic information for HNSCC patients in the palliative phase, we anticipate a shift towards more patient-centred counselling. This approach can facilitate enhanced end-of-life discussions and better proactive care planning. Patients may experience reduced decisional conflict, feel better prepared for what's coming, and find assistance in their decision-making process. This could potentially lead to fewer palliative treatments. Overall, these aspects can contribute to a better quality of life and quality of care for HNSCC patients in the last phase of their lives., Trial Registration: This study was registered November 18, 2024, on ClinicalTrials.gov: NCT06699316., Competing Interests: Declarations. Ethics approval and consent to participate: Ethics approval to start inclusion of patients for cohort 1 was granted by the ethics committee of the Erasmus MC (MEC-number: MEC-2022-0473, version 2.0, dated 13-12-2022). Ethical approval for the initiation of cohort 2 is granted by the ethics committee of the Erasmus MC (MEC-number: MEC-2024-0621, version 1.0, dated 27-08-2024). All participants will be required to provide their informed consent in writing before inclusion in the study. Any protocol modifications will be submitted as an amendment to the ethics committee and updated in Clinical Trial registry. These changes to the research will be made after a favourable opinion by the accredited ethics committee of the Erasmus MC. The study will be conducted according to the principles of the Declaration of Helsinki, Gedragscode Gezondheidsonderzoek 2022 and in accordance with the Erasmus MC Research Code and General Data Protection Regulation. Given the very low-risk nature of this study and that it is classified as Non-WMO, we did not establish a Data Monitoring Committee, report adverse events, or conduct auditing. The METC has approved this approach. Handling of personal data will comply with the Dutch Personal Data Protection Act. All data will be processed digitally, in a protected area. Subjects, and their data will be coded by a serial number (patient identification code), which is not based on the patient initials or birthdate. We will use a subject identification code list to link the data to the subject. Data will be stored in a secured folder and additionally secured by a password. Only the executive researchers and research coordinator will have access to the key. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests., (© 2025. The Author(s).)

Objective: Evidence suggests that distant metastasis in head and neck squamous cell carcinoma is a spectrum of disease. Previous studies show that oligometastasis has favorable survival compared with polymetastasis. The quality of life of patients with oligometastasis remains unknown. To further solidify the position of oligometastasis as a separate entity, we hypothesized that oligometastatic patients experience better quality of life than polymetastatic patients., Methods: Patients with distant metastasis were stratified into three groups: oligometastasis (≤3 metastatic foci in ≤2 anatomic sites), explosive metastasis (≥4 metastatic foci at one anatomic site), and explosive-disseminating metastasis (spread to ≥3 anatomic sites). Quality of life was assessed every 2 months post distant metastasis diagnosis., Results: Between January 1, 2016, and December 31, 2021, a total of 161 patients with distant metastasis were identified, with a total of 397 measurements. In this group, 57 (35.4%) patients had oligometastasis, 35 (21.7%) patients had explosive metastasis, and 69 (42.9%) patients had explosive-disseminating metastasis. Their median post-distant metastasis survivals were 8.5 months, 3.2 months, and 3.2 months respectively (p < 0.001). A significantly better overall quality of life was observed in the oligometastasis group compared with the polymetastatic groups (+0.75 out of 7, p < 0.05). Furthermore, oligometastatic patients performed better in the subdomains of "physical functioning," "fatigue," and "pain.", Conclusion: Results from this study underscore that subgroups exist regarding quality of life and survival within distant metastasis, with polymetastatic patients performing worse than oligometastatic patients. This highlights the significance of tailored interventions that consider the unique challenges faced by each metastatic group of patients., Level of Evidence: 3, retrospective cohort study Laryngoscope, 134:3170-3176, 2024., (© 2024 The Authors. The Laryngoscope published by Wiley Periodicals LLC on behalf of The American Laryngological, Rhinological and Otological Society, Inc.)

Importance: There is limited literature on the exact causes and ways of death in patients with head and neck cancer. To provide optimal care, especially in the palliative phase, more information on this is needed., Objective: To provide insights into the causes and ways of death among patients with head and neck cancer., Design, Setting, and Participants: This retrospective cohort study included a consecutive population of patients who received a diagnosis of primary squamous cell carcinoma of the head and neck between January 2006 and December 2013 who were treated in the Erasmus MC. Patient data were merged with nonpublic microdata from Statistics Netherlands. Follow-up time was specified as the date of diagnosis until death or December 3, 2019, whichever came first. The data were checked and reanalyzed in November 2023., Main Outcomes and Measures: Causes (eg, head and neck cancer, other cancer) and ways (eg, natural death, suicide) of death., Results: A total of 1291 patients (59.2%; 342 women [26.5%]) died during follow-up (median [IQR] follow-up, 2.7 [1.2-5.6] years). The main cause of death was head and neck cancer (557 [43.1%]), followed by the competing cause of other cancers (344 [26.6%]). In total, 240 patients (18.6%) received palliative sedation and 70 patients (5.4%) euthanasia. Compared with patients with head and neck cancer as the underlying cause of death, lower odds ratios (ORs) were observed for receiving palliative sedation (OR, 0.32 vs 0.07; 95% CI, 0.22-0.46 vs 0.03-0.12) and euthanasia (OR, 0.22 vs 0.01; 95% CI, 0.11-0.41 vs 0-0.107) in patients with other causes of death. Patients with a middle and high income had higher ORs for receiving palliative sedation (OR, 1.46 vs 1.86; 95% CI, 1.05-2.04 vs 1.22-2.85) or euthanasia (OR, 2.25 vs 3.37; 95% CI, 1.18-4.3, 1.6-7.12) compared with low-income patients. Retired patients had lower ORs for receiving palliative sedation or euthanasia compared with employed patients (OR, 0.56 vs 0.44; 95% CI, 0.39-0.8 vs 0.24-0.82)., Conclusion and Relevance: The results of this cohort study suggest that more than half of the patients died of competing causes and palliative sedation and euthanasia were more common in patients with head and neck cancer as the underlying cause of death. Patients with a higher socioeconomic status had higher odds of receiving palliative sedation and euthanasia. These insights may support health care professionals in providing patient-centered care, especially for patients in the palliative phase.

Objective: Early-stage glottic cancer (ESGC) is a malignancy of the head and neck. Besides disease control, preservation and improvement of voice quality are essential. To enable expectation management and well-informed decision-making, patients should be sufficiently counseled with individualized information on expected voice quality. This study aims to develop an individualized dynamic prediction model for patient-reported voice quality. This model should be able to provide individualized predictions at every time point from intake to the end of follow-up., Study Design: Longitudinal cohort study., Setting: Tertiary cancer center., Methods: Patients treated for ESGC were included in this study (N = 294). The Voice Handicap Index was obtained prospectively. The framework of mixed and joint models was used. The prognostic factors used are treatment, age, gender, comorbidity, performance score, smoking, T-stage, and involvement of the anterior commissure. The overall performance of these models was assessed during an internal cross-validation procedure and presentation of absolute errors using box plots., Results: The mean age in this cohort was 67 years and 81.3% are male. Patients were treated with transoral CO 2 laser microsurgery (57.8%), single vocal cord irradiation up to (24.5), or local radiotherapy (17.5%). The mean follow-up was 43.4 months (SD 21.5). Including more measurements during prediction improves predictive performance. Including more clinical and demographic variables did not provide better predictions. Little differences in predictive performance between models were found., Conclusion: We developed a dynamic individualized prediction model for patient-reported voice quality. This model has the potential to empower patients and professionals in making well-informed decisions and enables tailor-made counseling., (© 2023 The Authors. Otolaryngology-Head and Neck Surgery published by Wiley Periodicals LLC on behalf of American Academy of Otolaryngology-Head and Neck Surgery Foundation.)

Objective: Patients with palliative head and neck cancer experience many symptoms in a short period of time. Longitudinal data on patient-reported outcomes in this phase are lacking. The aim of this study is to use structurally obtained patient-reported outcome data combined with clinical patient data and obtain insight in patient-reported outcomes, survival, circumstances of death, and interventions and treatment during the palliative phase in order to improve the quality of end-of-life care and patient-centered counseling., Study Design: Longitudinal observational cohort study., Setting: Tertiary cancer center., Method: Quality of life was prospectively collected using the European Organization for Research and Treatment of Cancer QLQ-C15-PAL. Tumor- and patient-specific data were retrospectively collected. Descriptive statistics, linear mixed models, and regression analyses were performed., Results: A significant deterioration was found in global health status, physical functioning, fatigue, dyspnea, appetite loss, and constipation over time. However, emotional functioning improved. Median survival was 5.1 months, and only a low percentage of in-hospital death was observed (7.8%). Higher global health status at intake was associated with prolonged survival., Conclusion: Structural measurement of patient-reported outcome together with clinical outcomes provides unique insight, which enables improvement of patient-centered counseling and care., (© 2022 The Authors. Otolaryngology-Head and Neck Surgery published by Wiley Periodicals LLC on behalf of American Academy of Otolaryngology-Head and Neck Surgery Foundation.)

Objective: Patient-reported voice quality is an important outcome during counseling in early-stage glottic cancer. However, there is a paucity of adequate longitudinal studies concerning voice outcomes. This study aimed to investigate longitudinal trajectories for patient-reported voice quality and associated risk factors for treatment modalities such as transoral CO 2 laser microsurgery, single vocal cord irradiation, and local radiotherapy., Study Design: A longitudinal observational cohort study., Setting: Tertiary cancer center., Methods: Patients treated for Tcis-T1b, N0M0 glottic cancer were included in this study (N = 294). The Voice Handicap Index was obtained at baseline and during follow-up (N = 1944). Mixed-effects models were used for investigating the different trajectories for patient-reported voice quality., Results: The mean follow-up duration was 43.4 (SD 21.5) months. Patients received transoral CO 2 laser microsurgery (57.8%), single vocal cord irradiation (24.5%), or local radiotherapy (17.5%). A steeper improvement during the first year after treatment for single vocal cord irradiation (-15.7) and local radiotherapy (-12.4) was seen, compared with a more stable trajectory for laser surgery (-6.1). All treatment modalities showed equivalent outcomes during long-term follow-up. Associated risk factors for different longitudinal trajectories were age, tumor stage, and comorbidity., Conclusion: Longitudinal patient-reported voice quality after treatment for early-stage glottic cancer is heterogeneous and nonlinear. Most improvement is seen during the first year of follow-up and differs between treatment modalities. No clinically significant differences in long-term trajectories were found. Insight into longitudinal trajectories can enhance individual patient counseling and provide the foundation for an individualized dynamic prediction model., (© 2023 The Authors. Otolaryngology-Head and Neck Surgery published by Wiley Periodicals LLC on behalf of American Academy of Otolaryngology-Head and Neck Surgery Foundation.)

Objective: Informal caregivers of head and neck cancer (HNC) patients have a high caregiver burden and often face complex practical caregiving tasks. This may result in unmet supportive care needs, which can impact their quality of life (QoL) and cause psychological distress. In this study, we identify caregivers' unmet needs during long-term follow-up and identify caregivers prone to unmet supportive care needs., Methods: Data were used from the multicenter prospective cohort study NETherlands QUality of life and Biomedical cohort studies In Cancer (NET-QUBIC). The unmet supportive care needs, psychological distress, caregiver burden, and QoL were measured for 234 informal caregivers and their related patients at baseline, 3, 6, 12, and 24 months after. Mixed effect models for repeated measurements were used., Results: At baseline, most caregivers (70.3%) reported at least one unmet supportive care need, with most of the identified needs in the "healthcare & illness" domain. During the follow-up period, caregivers' unmet needs decreased significantly in all domains. Nevertheless, 2 years after treatment, 28.3% were still reporting at least one unmet need. Financial problems were increasingly associated with unmet needs over time. Furthermore, caring for a patient who themselves had many unmet needs, an advanced tumor stage, or severe comorbidity was associated with significantly more unmet needs in caregivers., Conclusions: The current study shows the strong likelihood of caregivers of HNC patients facing unmet supportive care needs and the interaction between the needs of patients and caregivers. It is important to optimally support informal caregivers by involving them from the start when counseling patients, by providing them with relevant and understandable information, and by referring vulnerable caregivers for (psychosocial) support., (© 2023. The Author(s).)

Importance: Patients who experience less decisional conflict (DC) are more engaged in treatment and less prone to decisional regret, nervousness, and fretting., Objectives: To assess DC among patients with head and neck squamous cell carcinoma (HNSCC) after the treatment decision consultation and the association between DC and quality of life as well as the degree of control patients experience in the decision-making process using the control preference scale and the association with DC., Design, Setting, and Participants: This prospective cohort study with 2 separate cohorts was conducted at a tertiary cancer center and included patients who were eligible for curative treatment of a primary squamous cell carcinoma between January 2014 and August 2018. The 2 cohorts comprised 102 patients with small laryngeal squamous cell carcinoma (SLSCC) and 161 patients with other HNSCC., Main Outcomes and Measures: Decisional Conflict Scale (DCS) score, which was scored within 2 weeks after the treatment decision consultation. Other measures included patient characteristics, tumor characteristics, and Control Preference Scale , EuroQol-5D, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30, Hospital Anxiety and Depression Scale (HADS), Eating Assessment Tool, and Voice Handicap Index (VHI) scores., Results: Of 263 patients, 50 (19%) were women; the mean (SD) age was 66.1 (11.4) years in the SLSCC group and 64.9 (9.8) years in the other HNSCC group. In the SLSCC group, 51 patients (50%) experienced clinically significant DC (total score ≥25) compared with 74 patients (46%) in the other HNSCC group. In the SLSCC group, there was a large difference in the median EuroQol-5D, Global Health status, HADS anxiety, HADS depression, and VHI scores between the patients with a total DCS score of less than 25 and total DCS score of 25 or greater, whereas in the other HNSCC group, this only applied to the VHI. Forty-four patients (43.1%) in the SLSCC group felt their treatment choice was a shared decision, and 39 (38.2%) made the decision themselves. In the other HNSCC group, 62 (38.5%) felt that the physician decided, and 56 (34.8%) felt it was a shared decision. In both groups there was a weak association between control preference scale scores and DC., Conclusions and Relevance: The results of this cohort study found that almost half of patients (48%) experienced clinically significant DC. Several quality-of-life measures associated with clinically significant DC were identified. These results suggest that there is room for improvement in aiming to reduce decision delay and decision-related distress.

(1) Background: The aim of this study was to investigate caregiver burden among informal caregivers of head and neck cancer patients, in relation to distress and quality of life (QoL), and the relationship between informal caregivers and patients. (2) Methods: Data of 234 dyads from the multicenter prospective cohort study Netherlands Quality of life and Biomedical Cohort studies in cancer was used. Caregiver burden, psychological distress, global QoL, physical and social functioning were measured from baseline until 24 months after treatment. (4) Conclusions: This prospective cohort study shows the high burden of caring for HNC patients, the impact of this burden and the interaction between caregiver and patient. We suggest that healthcare professionals include caregivers in counseling and support.

Background: Multidisciplinary decision-making in head and neck cancer care is complex and requires a tradeoff between prolonging survival and optimizing quality of life. To support prognostication and decision-making in head and neck cancer care, an individualized prognostic model for overall survival (OncologIQ) is available., Methods: By quantitative and qualitative research we have studied user value of OncologIQ and its impact on the decision-making process in a multidisciplinary consultation meeting., Results: Healthcare professionals experienced added value upon using prognostic estimates of survival from OncologIQ in half (47.5%) of the measurements. Significant impact on the decision making process was seen when OncologIQ was used for older patients, patients having a WHO performance score ≥ 2, or high tumor stage., Conclusions: The prognostic model OncologIQ enables patient-centered decision-making in a multidisciplinary consultation meeting and was mostly valued in complex patients., (© 2022 The Authors. Head & Neck published by Wiley Periodicals LLC.)

Background: In healthcare, analysing patient-reported outcome measures (PROMs) on an aggregated level can improve and regulate healthcare for specific patient populations (meso level). This mixed-methods systematic review aimed to summarize and describe the effectiveness of quality improvement methods based on aggregated PROMs. Additionally, it aimed to describe barriers, facilitators and lessons learned when using these quality improvement methods., Methods: A mixed-methods systematic review was conducted. Embase, MEDLINE, CINAHL and the Cochrane Library were searched for studies that described, implemented or evaluated a quality improvement method based on aggregated PROMs in the curative hospital setting. Quality assessment was conducted via the Mixed Methods Appraisal Tool. Quantitative data were synthesized into a narrative summary of the characteristics and findings. For the qualitative analysis, a thematic synthesis was conducted., Results: From 2360 unique search records, 13 quantitative and three qualitative studies were included. Four quality improvement methods were identified: benchmarking, plan-do-study-act cycle, dashboards and internal statistical analysis. Five studies reported on the effectiveness of the use of aggregated PROMs, of which four identified no effect and one a positive effect. The qualitative analysis identified the following themes for facilitators and barriers: (1) conceptual (i.e. stakeholders, subjectivity of PROMs, aligning PROMs with clinical data, PROMs versus patient-reported experience measures [PREMs]); (2a) methodological-data collection (i.e. choice, timing, response rate and focus); (2b) methodological-data processing (i.e. representativeness, responsibility, case-mix control, interpretation); (3) practical (i.e. resources)., Conclusion: The results showed little to no effect of quality improvement methods based on aggregated PROMs, but more empirical research is needed to investigate different quality improvement methods. A shared stakeholder vision, selection of PROMs, timing of measurement and feedback, information on interpretation of data, reduction of missing data, and resources for data collection and feedback infrastructure are important to consider when implementing and evaluating quality improvement methods in future research., (© 2022. The Author(s).)

The most important goal of surgical management of displaced intra-articular calcaneal fractures is anatomic correction. This reduction is usually stabilized using plate and screw osteosynthesis. In addition, Kirschner wires (K-wires) can be used to maintain the surgical reduction or stability of the construct. In the present study, we evaluated the frequency and type of use of additional K-wires and subsequent migration in the surgical management of displaced intra-articular calcaneal fractures. The data from 279 patients treated surgically from January 1, 2000 to December 31, 2014 in a level 1 trauma center using an extended lateral approach were analyzed after 1 year of follow-up. All postoperative radiographic images were reviewed to identify the cases in which K-wires were used. Data on the number and type of K-wires used, K-wire location, and K-wire migration found on follow-up imaging studies were collected. Of the 279 patients, 69 K-wires had been used in 49 (18%) patients. A total of 25 (36%) lost (buried), 38 (55%) bent, and 6 (9%) unmodified straight K-wires had been placed. Overall, in 4 (5.8%) of 69 K-wires, secondary dislocation was seen. One (4%) of the lost, 3 (50%) of the unmodified, and none of the bent K-wires showed secondary dislocation. K-wire migration was seen in 5.8% of the cases. None of the bent K-wires and only 1 of the lost K-wires had migrated in the present study. These 2 techniques are preferred when using K-wire fixation in the treatment of displaced intra-articular calcaneal fractures. The use of unmodified straight K-wires should be discouraged., (Copyright © 2016 American College of Foot and Ankle Surgeons. Published by Elsevier Inc. All rights reserved.)

Purpose: The goal of calcaneal fracture surgery is to restore its anatomy and good foot function. However, loss of height of the subtalar joint can occur post-operatively, as expressed by a decrease in Böhler's angle (BA). The aim of this study was to identify potential factors associated with a post-operative decrease in BA., Methods: All consecutive adult patients treated with open reduction and internal fixation (ORIF) by an extended lateral approach (ELA) between 2000 and 2013 were retrospectively included. Primary outcome was the occurrence of a calcaneal collapse, defined as a postoperative decrease of ≥10° in BA. The BA was measured pre-operatively, directly following surgery and at one year follow-up. Patient characteristics (body mass index, diabetes mellitus, smoking/alcohol/substance abuse, American Society of Anaesthesiologist classification), fracture classification and treatment characteristics: per-operative increase in BA and occurrence of post-operative wound infection (POWI) were collected., Results: A total of 262 patients with 276 calcaneal fractures were included. A calcaneal collapse occurred in 46 cases (17%). The median preoperative BA, per-operative increase in BA and post-operative decrease in BA were, respectively, 2°, 27° and 4°. A calcaneal collapse was seen more often following a per-operative increase of >25° in BA, but no significant association was found (p = 0.056). Uni- and multivariate analysis showed that patients with substance abuse and those with POWI had significantly more calcaneal collapse (p < 0.05). No association was found between substance abuse and the occurrence of POWI (p = 0.293)., Conclusions: In nearly one in six patients with an intra-articular calcaneal fracture treated with ORIF by an ELA, a post-operative collapse of ≥10° was found during follow-up. Calcaneal collapse was correlated with the occurrence of a POWI and substance abuse.