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  1. 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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  2. 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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  3. 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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  4. 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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  5. Article ; Online: Prognostic model for overall survival of head and neck cancer patients in the palliative phase.

    Hoesseini, Arta / Sewnaik, Aniel / van den Besselaar, Boyd N / Zhang, Jang / van Leeuwen, Nikki / Hardillo, Jose A / Baatenburg de Jong, Robert Jan / Offerman, Marinella P J

    BMC palliative care

    2024  Volume 23, Issue 1, Page(s) 54

    Abstract: Background: Patients with head and neck squamous cell carcinoma (HNSCC) enter the palliative phase when cure is no longer possible or when they refuse curative treatment. The mean survival is five months, with a range of days until years. Realistic ... ...

    Abstract Background: Patients with head and neck squamous cell carcinoma (HNSCC) enter the palliative phase when cure is no longer possible or when they refuse curative treatment. The mean survival is five months, with a range of days until years. Realistic prognostic counseling enables patients to make well-considered end-of-life choices. However, physicians tend to overestimate survival. The aim of this study was to develop a prognostic model that calculates the overall survival (OS) probability of palliative HNSCC patients.
    Methods: Patients diagnosed with incurable HNSCC or patients who refused curative treatment for HNSCC between January 1st 2006 and June 3rd 2019 were included (n = 659). Three patients were lost to follow-up. Patients were considered to have incurable HNSCC due to tumor factors (e.g. inoperability with no other curative treatment options, distant metastasis) or patient factors (e.g. the presence of severe comorbidity and/or poor performance status).Tumor and patients factors accounted for 574 patients. An additional 82 patients refused curative treatment and were also considered palliative. The effect of 17 candidate predictors was estimated in the univariable cox proportional hazard regression model. Using backwards selection with a cut-off P-value < 0.10 resulted in a final multivariable prediction model. The C-statistic was calculated to determine the discriminative performance of the model. The final model was internally validated using bootstrapping techniques.
    Results: A total of 647 patients (98.6%) died during follow-up. Median OS time was 15.0 weeks (95% CI: 13.5;16.6). Of the 17 candidate predictors, seven were included in the final model: the reason for entering the palliative phase, the number of previous HNSCC, cT, cN, cM, weight loss in the 6 months before diagnosis, and the WHO performance status. The internally validated C-statistic was 0.66 indicating moderate discriminative ability. The model showed some optimism, with a shrinkage factor of 0.89.
    Conclusion: This study enabled the development and internal validation of a prognostic model that predicts the OS probability in HNSCC patients in the palliative phase. This model facilitates personalized prognostic counseling in the palliative phase. External validation and qualitative research are necessary before widespread use in patient counseling and end-of-life care.
    MeSH term(s) Humans ; Squamous Cell Carcinoma of Head and Neck/therapy ; Prognosis ; Carcinoma, Squamous Cell ; Head and Neck Neoplasms/complications ; Head and Neck Neoplasms/therapy ; Proportional Hazards Models
    Language English
    Publishing date 2024-02-24
    Publishing country England
    Document type Journal Article
    ZDB-ID 2091556-1
    ISSN 1472-684X ; 1472-684X
    ISSN (online) 1472-684X
    ISSN 1472-684X
    DOI 10.1186/s12904-023-01325-y
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  6. 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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    Zs.A 1493: Show issues Location:
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  7. Article ; Online: Key Aspects of Prognostic Model Development and Interpretation From a Clinical Perspective.

    Hoesseini, Arta / van Leeuwen, Nikki / Sewnaik, Aniel / Steyerberg, Ewout W / Baatenburg de Jong, Robert Jan / Lingsma, Hester F / Offerman, Marinella P J

    JAMA otolaryngology-- head & neck surgery

    2022  Volume 148, Issue 2, Page(s) 180–186

    Abstract: Importance: Prognostication is an important aspect of clinical decision-making, but it is often challenging. Previous studies show that both patients and physicians tend to overestimate survival chances. Prediction models may assist in estimating and ... ...

    Abstract Importance: Prognostication is an important aspect of clinical decision-making, but it is often challenging. Previous studies show that both patients and physicians tend to overestimate survival chances. Prediction models may assist in estimating and quantifying prognosis. However, insufficient understanding of the development, possibilities, and limitations of such models can lead to misinterpretations. Although many excellent books and comprehensive methodological articles on prognostic model research are published, they may not be accessible enough for the clinical audience. Our aim is to provide an overview on the main issues regarding prediction research for health care professionals to achieve better interpretation and increase the use of prognostic models in daily clinical practice.
    Observations: The first steps of model development include coding of predictors, model specification, and estimation. Next, we discuss the assessment of the performance of a prediction model, including discrimination and calibration aspects, followed by approaches to internal and external validation and updating. Finally, model reporting, presentation, and steps toward clinical implementation are presented.
    Conclusions and relevance: After thorough consideration of the research question, data inspection, and coding of predictors, one can start with the specification of a prediction model. The number of candidate predictors should be kept limited, in view of the number of events in the data, to prevent overfitting. Calibration and discrimination are 2 aspects of model performance that complement each other and should be assessed preferably at external validation. Model development should be accompanied by qualitative research among patients and physicians to facilitate the development of a valuable tool and maximize possibilities for successful implementation. After model presentation is optimized, impact studies are required to assess the clinical value of a prediction model.
    MeSH term(s) Clinical Coding ; Clinical Decision-Making ; Decision Support Techniques ; Humans ; Models, Theoretical ; Predictive Value of Tests ; Prognosis ; Risk Assessment/methods
    Language English
    Publishing date 2022-01-04
    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.2021.3505
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  8. Article ; Online: Decisional Conflict in Patients With Head and Neck Cancer.

    Hoesseini, Arta / Dorr, Maarten C / Dronkers, Emilie A C / de Jong, Robert Jan Baatenburg / Sewnaik, Aniel / Offerman, Marinella P J

    JAMA otolaryngology-- head & neck surgery

    2022  Volume 149, Issue 2, Page(s) 160–167

    Abstract: 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) ...

    Abstract 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.
    MeSH term(s) Humans ; Female ; Aged ; Male ; Decision Making ; Squamous Cell Carcinoma of Head and Neck ; Prospective Studies ; Quality of Life ; Cohort Studies ; Head and Neck Neoplasms/therapy ; Carcinoma, Squamous Cell/therapy ; Surveys and Questionnaires
    Language English
    Publishing date 2022-12-21
    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.2022.4269
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  9. Article ; Online: Longitudinal Patient-Reported Voice Quality in Early-Stage Glottic Cancer.

    Dorr, Maarten C / Sewnaik, Aniel / Andrinopoulou, Elrozy / Berzenji, Diako / Dronkers, Emilie A C / Bernard, Simone E / Hoesseini, Arta / Tans, Lisa / Rizopoulos, Dimitris / 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 168, Issue 6, Page(s) 1463–1471

    Abstract: 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 ... ...

    Abstract 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
    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
    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.
    MeSH term(s) Humans ; Voice Quality ; Laryngeal Neoplasms/pathology ; Carbon Dioxide ; Treatment Outcome ; Glottis/surgery ; Laser Therapy/adverse effects ; Microsurgery/adverse effects ; Patient Reported Outcome Measures ; Retrospective Studies
    Chemical Substances Carbon Dioxide (142M471B3J)
    Language English
    Publishing date 2023-02-08
    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 10.1002/ohn.263
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  10. Article ; Online: Unmet supportive care needs among informal caregivers of patients with head and neck cancer in the first 2 years after diagnosis and treatment: a prospective cohort study.

    van Hof, Kira S / Hoesseini, Arta / Dorr, Maarten C / Verdonck-de Leeuw, Irma M / Jansen, Femke / Leemans, C Réne / Takes, Robert P / Terhaard, Chris H J / de Jong, Robert J Baatenburg / Sewnaik, Aniel / Offerman, Marinella P J

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

    2023  Volume 31, Issue 5, Page(s) 262

    Abstract: 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 ... ...

    Abstract 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.
    MeSH term(s) Humans ; Quality of Life/psychology ; Caregivers/psychology ; Prospective Studies ; Surveys and Questionnaires ; Head and Neck Neoplasms/therapy
    Language English
    Publishing date 2023-04-13
    Publishing country Germany
    Document type Multicenter Study ; Journal Article
    ZDB-ID 1134446-5
    ISSN 1433-7339 ; 0941-4355
    ISSN (online) 1433-7339
    ISSN 0941-4355
    DOI 10.1007/s00520-023-07670-1
    Database MEDical Literature Analysis and Retrieval System OnLINE

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