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Article ; Online: Prioritization of surgical patients during the COVID-19 pandemic and beyond: A qualitative exploration of patients' perspectives.

van Alphen, Anouk M I A / Sülz, Sandra / Lingsma, Hester F / Baatenburg de Jong, Robert J

2023 Volume 18, Issue 11, Page(s) e0294026

Abstract: Introduction: During the COVID-19 pandemic, prioritizing certain surgical patients became inevitable due to limited surgical capacity. This study aims to identify which factors patients value in priority setting, and to evaluate their perspective on a ... ...

Abstract	Introduction: During the COVID-19 pandemic, prioritizing certain surgical patients became inevitable due to limited surgical capacity. This study aims to identify which factors patients value in priority setting, and to evaluate their perspective on a decision model for surgical prioritization. Methods: We enacted a qualitative exploratory study and conducted semi-structured interviews with N = 15 patients. Vignettes were used as guidance. The interviews were transcribed and iteratively analyzed using thematic analysis. Results: We unraveled three themes: 1) general attitude towards surgical prioritization: patients showed understanding for the difficult decisions to be made, but demanded greater transparency and objectivity; 2) patient-related factors that some participants considered should, or should not, influence the prioritization: age, physical functioning, cognitive functioning, behavior, waiting time, impact on survival and quality of life, emotional consequences, and resource usage; and 3) patients' perspective on a decision model: usage of such a model for prioritization decisions is favorable if the model is simple, uses trustworthy data, and its output is supervised by physicians. The model could also be used as a communication tool to explain prioritization dilemmas to patients. Conclusion: Support for the various factors and use of a decision model varied among patients. Therefore, it seems unrealistic to immediately incorporate these factors in decision models. Instead, this study calls for more research to identify feasible avenues and seek consensus.
MeSH term(s)	Humans ; COVID-19/epidemiology ; Quality of Life ; Pandemics ; Physicians/psychology ; Consensus
Language	English
Publishing date	2023-11-08
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2267670-3
ISSN	1932-6203 ; 1932-6203
ISSN (online)	1932-6203
ISSN	1932-6203
DOI	10.1371/journal.pone.0294026
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Article ; Online: Quality of Life of Oligometastatic and Polymetastatic Head and Neck Squamous Cell Carcinoma Patients.

Berzenji, Diako / Dorr, Maarten C / Sewnaik, Aniel / Mast, Hetty / Offerman, Marinella P J / Baatenburg de Jong, Robert J / Hardillo, Jose A

The Laryngoscope

2024

Abstract: 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 ... ...

Abstract	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, 2024.
Language	English
Publishing date	2024-02-07
Publishing country	United States
Document type	Journal Article
ZDB-ID	80180-x
ISSN	1531-4995 ; 0023-852X
ISSN (online)	1531-4995
ISSN	0023-852X
DOI	10.1002/lary.31325
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Article ; Online: The first steps in the development of a cancer-specific patient-reported experience measure item bank (PREM-item bank): towards dynamic evaluation of experiences.

van Hof, Kira S / Dulfer, Karolijn / Sewnaik, Aniel / Baatenburg de Jong, Robert J / Offerman, Marinella P J

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

2024 Volume 32, Issue 2, Page(s) 100

Abstract: Objective: Since the implementation of value-based healthcare, there has been a growing emphasis on utilizing patient-reported experience measures (PREMs) to enhance the quality of care. However, the current PREMs are primarily generic and static, ... ...

Abstract	Objective: Since the implementation of value-based healthcare, there has been a growing emphasis on utilizing patient-reported experience measures (PREMs) to enhance the quality of care. However, the current PREMs are primarily generic and static, whereas healthcare is constantly evolving and encompasses a wide variety of aspects that impact care quality. To continuously improve care requires a dynamic PREM. The aim of this study was to propose an item bank for the establishment of a dynamic and care-specific patient-reported evaluation. Methods: In co-creation with patients, a mixed methods study was conducted involving: (1) an explorative review of the literature, (2) a focus group analysis with (ex-)patients, (3) qualitative analyses to formulate themes, and (4) a quantitative selection of items by patients and experts through prioritization. Results: Eight existing PREMs were evaluated. After removing duplicates, 141 items were identified. Through qualitative analyses of the focus group in which the patient journey was discussed, eight themes were formulated: "Organization of healthcare," "Competence of healthcare professionals," "Communication," "Information & services," "Patient empowerment," "Continuity & informal care," "Environment," and "Technology." Seven patients and eleven professionals were asked to prioritize what they considered the most important items. From this, an item bank with 76 items was proposed. Conclusion: In collaboration with patients and healthcare professionals, we have proposed a PREM-item bank to evaluate the experiences of patients' receiving cancer care in an outpatient clinic. This item bank is the first step to dynamically assess the quality of cancer care provided in an outpatient setting.
MeSH term(s)	Humans ; Focus Groups ; Ambulatory Care Facilities ; Delivery of Health Care ; Outpatients ; Patient Reported Outcome Measures ; Surveys and Questionnaires ; Neoplasms/therapy
Language	English
Publishing date	2024-01-12
Publishing country	Germany
Document type	Review ; Journal Article
ZDB-ID	1134446-5
ISSN	1433-7339 ; 0941-4355
ISSN (online)	1433-7339
ISSN	0941-4355
DOI	10.1007/s00520-023-08266-5
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Article ; Online: Causes and Ways of Death in Patients With Head and Neck Cancer.

van den Besselaar, Boyd N / Sewnaik, Aniel / Hoesseini, Arta / Dorr, Maarten C / Baatenburg de Jong, Robert J / Offerman, Marinella P J

JAMA otolaryngology-- head & neck surgery

2024 Volume 150, Issue 4, Page(s) 303–310

Abstract: 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 ...

Abstract	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.
MeSH term(s)	Humans ; Female ; Cohort Studies ; Retrospective Studies ; Head and Neck Neoplasms/therapy ; Netherlands/epidemiology ; Palliative Care
Language	English
Publishing date	2024-02-15
Publishing country	United States
Document type	Journal Article
ZDB-ID	2701825-8
ISSN	2168-619X ; 2168-6181
ISSN (online)	2168-619X
ISSN	2168-6181
DOI	10.1001/jamaoto.2023.4694
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Article ; Online: Surgical prioritization based on decision model outcomes is not sensitive to differences between the health-related quality of life values estimates of physicians and citizens.

van Alphen, Anouk M I A / Krijkamp, Eline M / Gravesteijn, Benjamin Y / Baatenburg de Jong, Robert J / Busschbach, Jan J

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

2023 Volume 33, Issue 2, Page(s) 529–539

Abstract: Purpose: Decision models can be used to support allocation of scarce surgical resources. These models incorporate health-related quality of life (HRQoL) values that can be determined using physician panels. The predominant opinion is that one should use ...

Abstract	Purpose: Decision models can be used to support allocation of scarce surgical resources. These models incorporate health-related quality of life (HRQoL) values that can be determined using physician panels. The predominant opinion is that one should use values obtained from citizens. We investigated whether physicians give different HRQoL values to citizens and evaluate whether such differences impact decision model outcomes. Methods: A two-round Delphi study was conducted. Citizens estimated HRQoL of pre- and post-operative health states for ten surgeries using a visual analogue scale. These values were compared using Bland-Altman analysis with HRQoL values previously obtained from physicians. Impact on decision model outcomes was evaluated by calculating the correlation between the rankings of surgeries established using the physicians' and the citizens' values. Results: A total of 71 citizens estimated HRQoL. Citizens' values on the VAS scale were - 0.07 points (95% CI - 0.12 to - 0.01) lower than the physicians' values. The correlation between the rankings of surgeries based on citizens' and physicians' values was 0.96 (p < 0.001). Conclusion: Physicians put higher values on health states than citizens. However, these differences only result in switches between adjacent entries in the ranking. It would seem that HRQoL values obtained from physicians are adequate to inform decision models during crises.
MeSH term(s)	Humans ; Quality of Life/psychology ; Physicians
Language	English
Publishing date	2023-11-08
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	1161148-0
ISSN	1573-2649 ; 0962-9343
ISSN (online)	1573-2649
ISSN	0962-9343
DOI	10.1007/s11136-023-03544-5
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Article ; Online: Learnings From Longitudinal Patient-Reported and Clinical Outcomes in Palliative Head and Neck Cancer Care.

Dorr, Maarten C / Sewnaik, Aniel / Berzenji, Diako / van Hof, Kira S / Grevelink, Tim / Baatenburg de Jong, Robert J / Offerman, Marinella P J

Otolaryngology--head and neck surgery : official journal of American Academy of Otolaryngology-Head and Neck Surgery

2023 Volume 169, Issue 2, Page(s) 294–302

Abstract: 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 ...

Abstract	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.
MeSH term(s)	Humans ; Quality of Life/psychology ; Retrospective Studies ; Hospital Mortality ; Surveys and Questionnaires ; Palliative Care ; Neoplasms/complications ; Head and Neck Neoplasms/therapy ; Head and Neck Neoplasms/complications ; Patient Reported Outcome Measures
Language	English
Publishing date	2023-01-29
Publishing country	England
Document type	Observational Study ; Journal Article
ZDB-ID	392085-9
ISSN	1097-6817 ; 0161-6439 ; 0194-5998
ISSN (online)	1097-6817
ISSN	0161-6439 ; 0194-5998
DOI	10.1177/01945998221127203
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Article ; Online: Sequelae and Complications of Treatment for Hypopharyngeal Cancer: Minimising the Risks.

Sewnaik, Aniel / Baatenburg de Jong, Robert J

Advances in oto-rhino-laryngology

2019 Volume 83, Page(s) 109–117

Abstract: Treatment of hypopharyngeal cancer depends on the extent and location of the tumour, patient-specific or by factors (age, performance status, co-morbidity) and the presence of psychosocial support. Options available for the treatment of hypopharyngeal ... ...

Abstract	Treatment of hypopharyngeal cancer depends on the extent and location of the tumour, patient-specific or by factors (age, performance status, co-morbidity) and the presence of psychosocial support. Options available for the treatment of hypopharyngeal cancer consist of surgery and non-surgery - radiotherapy, chemoradiation, bioradiation, or a combination of these modalities. To maintain normal functioning as much as possible, functional organ preservation is widely recommended and generally utilizes radiotherapy and/or chemoradiation. Although functional organ-sparing approaches can permit larynx preservation in patients with locoregionally advanced cancer of the hypopharynx, they do not provide a survival advantage over total laryngectomy. All available treatment modalities for patients with hypopharyngeal cancer have associated short- and long-term toxicities leading to side effects and complications.
MeSH term(s)	Antineoplastic Agents/adverse effects ; Humans ; Hypopharyngeal Neoplasms/therapy ; Hypothyroidism/etiology ; Intubation, Gastrointestinal/adverse effects ; Lymphedema/etiology ; Postoperative Complications/prevention & control ; Radiotherapy/adverse effects ; Xerostomia/etiology
Chemical Substances	Antineoplastic Agents
Language	English
Publishing date	2019-02-12
Publishing country	Switzerland
Document type	Journal Article ; Review
ISSN	1662-2847 ; 0065-3071
ISSN (online)	1662-2847
ISSN	0065-3071
DOI	10.1159/000492319
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Article: The Occurrence of MET Ectodomain Shedding in Oral Cancer and Its Potential Impact on the Use of Targeted Therapies.

De Herdt, Maria J / van der Steen, Berdine / Baatenburg de Jong, Robert J / Looijenga, Leendert H J / Koljenović, Senada / Hardillo, Jose A

Cancers

2022 Volume 14, Issue 6

Abstract: The receptor tyrosine kinase MET has gained attention as a therapeutic target. Although MET immunoreactivity is associated with progressive disease, use of targeted therapies has not yet led to major survival benefits. A possible explanation is the lack ... ...

Abstract	The receptor tyrosine kinase MET has gained attention as a therapeutic target. Although MET immunoreactivity is associated with progressive disease, use of targeted therapies has not yet led to major survival benefits. A possible explanation is the lack of companion diagnostics (CDx) that account for proteolytic processing. During presenilin-regulated intramembrane proteolysis, MET's ectodomain is shed into the extracellular space, which is followed by γ-secretase-mediated cleavage of the residual membranous C-terminal fragment. The resulting intracellular fragment is degraded by the proteasome, leading to downregulation of MET signaling. Conversely, a membrane-bound MET fragment lacking the ectodomain (MET-EC
Language	English
Publishing date	2022-03-15
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2527080-1
ISSN	2072-6694
ISSN	2072-6694
DOI	10.3390/cancers14061491
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Article ; Online: Impact of a prognostic model for overall survival on the decision-making process in a head and neck cancer multidisciplinary consultation meeting.

Dorr, Maarten C / Hoesseini, Arta / Sewnaik, Aniel / Hardillo, José A / Baatenburg de Jong, Robert J / Offerman, Marinella P J

Head & neck

2022 Volume 44, Issue 11, Page(s) 2481–2490

Abstract: 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 ... ...

Abstract	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.
MeSH term(s)	Decision Making ; Head and Neck Neoplasms/therapy ; Humans ; Prognosis ; Quality of Life ; Referral and Consultation
Language	English
Publishing date	2022-07-30
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	645165-2
ISSN	1097-0347 ; 0148-6403 ; 1043-3074
ISSN (online)	1097-0347
ISSN	0148-6403 ; 1043-3074
DOI	10.1002/hed.27163
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Article ; Online: The association of sociodemographic factors and risk behavior with unsafe use of personal listening devices in adolescents.

Paping, Danique E / Vroegop, Jantien L / El Marroun, Hanan / Baatenburg de Jong, Robert J / van der Schroeff, Marc P

International journal of environmental health research

2022 Volume 33, Issue 7, Page(s) 700–709

Abstract: Many young people are potentially at risk of noise-induced hearing loss due to unsafe use of personal listening devices. The aim of this cross-sectional study was to examine the association of sociodemographic factors and risk behavior with unsafe use of ...

Abstract	Many young people are potentially at risk of noise-induced hearing loss due to unsafe use of personal listening devices. The aim of this cross-sectional study was to examine the association of sociodemographic factors and risk behavior with unsafe use of personal listening devices in adolescents to identify a target group for prevention. A smartphone application was developed to objectively measure music listening habits among 314 adolescents with a mean age of 13 years and 7 months (SD ±5 months). Listening habits were characterized as safe or unsafe based on the weekly noise dose. Data on sociodemographic factors and traditional health risk behaviors were obtained by questionnaires. Within the study group, 10.5% of the participants exceeded the 50%, and 4.8% the 100% recommended weekly noise dose. Adolescents with a lower socioeconomic status were more likely to engage in unsafe listening habits as compared to adolescents with a higher socioeconomic status. Additionally, risk behavior was associated with higher odds of having unsafe listening habits as compared to no risk behavior. Age, sex and educational levels were not significantly associated with unsafe listening habits. The findings of the present study indicate that interventions to promote safe listening habits should target adolescents with a lower socioeconomic status and higher risk behavior. Future research is needed to investigate how these adolescents can be motivated to adopt safe listening habits.
MeSH term(s)	Humans ; Adolescent ; Sociodemographic Factors ; Cross-Sectional Studies ; Auditory Perception ; Hearing Loss, Noise-Induced/epidemiology ; Hearing Loss, Noise-Induced/etiology ; Hearing Loss, Noise-Induced/prevention & control ; Surveys and Questionnaires
Language	English
Publishing date	2022-03-09
Publishing country	England
Document type	Journal Article
ZDB-ID	1104887-6
ISSN	1369-1619 ; 0960-3123
ISSN (online)	1369-1619
ISSN	0960-3123
DOI	10.1080/09603123.2022.2047901
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