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, 134:3170-3176, 2024.
Subject(s)
Head and Neck Neoplasms , Neoplasm Metastasis , Quality of Life , Squamous Cell Carcinoma of Head and Neck , Humans , Male , Female , Middle Aged , Squamous Cell Carcinoma of Head and Neck/mortality , Squamous Cell Carcinoma of Head and Neck/secondary , Squamous Cell Carcinoma of Head and Neck/therapy , Squamous Cell Carcinoma of Head and Neck/pathology , Head and Neck Neoplasms/mortality , Head and Neck Neoplasms/pathology , Head and Neck Neoplasms/therapy , Head and Neck Neoplasms/psychology , Head and Neck Neoplasms/secondary , Aged , Retrospective Studies , AdultABSTRACT
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.
Subject(s)
Head and Neck Neoplasms , Humans , Female , Cohort Studies , Retrospective Studies , Head and Neck Neoplasms/therapy , Netherlands/epidemiology , Palliative CareABSTRACT
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.
Subject(s)
Carcinoma, Squamous Cell , Head and Neck Neoplasms , Humans , Squamous Cell Carcinoma of Head and Neck/therapy , Prognosis , Head and Neck Neoplasms/complications , Head and Neck Neoplasms/therapy , Proportional Hazards ModelsABSTRACT
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.
Subject(s)
Ambulatory Care Facilities , Neoplasms , Humans , Focus Groups , Delivery of Health Care , Outpatients , Patient Reported Outcome Measures , Surveys and Questionnaires , Neoplasms/therapyABSTRACT
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 CO2 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.
Subject(s)
Laryngeal Neoplasms , Laser Therapy , Humans , Male , Aged , Female , Voice Quality , Treatment Outcome , Longitudinal Studies , Laryngeal Neoplasms/pathology , Laser Therapy/methods , Glottis/surgery , Patient Reported Outcome Measures , Microsurgery/methods , Retrospective StudiesABSTRACT
PURPOSE: Early stage lip squamous cell carcinoma (lip SCC) can be treated with conventional excision, Mohs micrographic surgery (MMS), or brachytherapy. The aim of this retrospective study was to describe the medical outcomes, patient-reported outcomes, and costs of these treatments. METHODS: A retrospective cohort study of T1-T2 lip SSCs treated between 1996 and 2019. Medical outcomes, recurrences, and survival were retrieved from medical records. Facial appearance, facial function, and Quality of Life (QoL) were measured with the Face-Q H&N and EQ-5D-5L questionnaires. Costs were also calculated. RESULTS: Of the 336 lip SCCs, 122 were treated with excision, 139 with MMS, and 75 with brachytherapy. Locally, the recurrence rate was 2.7% and regionally 4.8%. There were 2% disease-related deaths. T2-stage and poor tumor differentiation were associated with recurrences. Posttreatment QoL, facial function, and appearance were rated as good. Brachytherapy was the most expensive treatment modality. CONCLUSION: Early-stage lip SCC has a good prognosis, with a disease-specific survival of 98.2% after a median follow-up of 36 months, there was a high QoL and satisfaction at long-term follow-up. Based on the costs and the risk of locoregional recurrences, we believe that, for most noncomplex lip SCCs, MMS would be the most logical treatment option.
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.
Subject(s)
Head and Neck Neoplasms , Quality of Life , Humans , Quality of Life/psychology , Caregivers/psychology , Prospective Studies , Surveys and Questionnaires , Head and Neck Neoplasms/therapyABSTRACT
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 CO2 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 CO2 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.
Subject(s)
Laryngeal Neoplasms , Laser Therapy , Humans , Voice Quality , Laryngeal Neoplasms/pathology , Carbon Dioxide , Treatment Outcome , Glottis/surgery , Laser Therapy/adverse effects , Microsurgery/adverse effects , Patient Reported Outcome Measures , Retrospective StudiesABSTRACT
OBJECTIVE: In order to understand how informal caregivers of head and neck cancer (HNC) patients deal with the consequences of the disease, we investigated their self-efficacy and coping style in relation to symptoms of anxiety and depression (distress) and quality of life (QoL) over time. In addition, factors associated with self-efficacy and coping style were investigated. METHODS: A total of 222 informal caregivers and their related HNC patients were prospectively followed as part from the multicenter cohort NETherlands QUality of life and Biomedical cohort studies In Cancer (NET-QUBIC). Self-efficacy and coping style were measured at baseline, and distress and QoL at baseline and 3, 6, 12, and 24 months after treatment. RESULTS: Informal caregivers had a high level of self-efficacy comparable with patients. Caregivers used "seeking social support," "passive reacting," and "expression of emotions" more often than patients. Factors associated with self-efficacy and coping were higher age and lower education. Higher self-efficacy was related with better QoL and "active tackling" was associated with less depression symptoms. "Passive reacting" and "expression of emotions" were associated with higher psychological distress and reduced QoL. CONCLUSION: Among informal caregivers of HNC patients, higher self-efficacy and "active tackling" were associated with better functioning over time, while "passive reacting" and "expression of negative emotions" were associated with worse functioning. Awareness of the differences in self-efficacy skills and coping and their relationship with QoL and psychological distress will help clinicians to identify caregivers that may benefit from additional support that improve self-efficacy and "active tackling" and reduce negative coping styles.
Subject(s)
Head and Neck Neoplasms , Psychological Distress , Humans , Longitudinal Studies , Quality of Life/psychology , Caregivers/psychology , Self Efficacy , Adaptation, PsychologicalABSTRACT
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.
Subject(s)
Carcinoma, Squamous Cell , Head and Neck Neoplasms , 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 QuestionnairesABSTRACT
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.
Subject(s)
Head and Neck Neoplasms , Neoplasms , 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 MeasuresABSTRACT
(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.
Subject(s)
Head and Neck Neoplasms , Psychological Distress , Humans , Quality of Life/psychology , Longitudinal Studies , Prospective Studies , Caregivers/psychology , Adaptation, PsychologicalABSTRACT
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.
Subject(s)
Head and Neck Neoplasms , Quality of Life , Decision Making , Head and Neck Neoplasms/therapy , Humans , Prognosis , Referral and ConsultationABSTRACT
BACKGROUND: The supportive needs for head and neck cancer (HNC) patients during the vulnerable period after treatment are not always met. Therefore, more professional support regarding physical, social, and psychological care as well as lifestyle is recommended. OBJECTIVE: This study is an evaluation of a nurse-led aftercare intervention to support patients recovering from HNC treatment. METHODS: Intervention group (IG) participants received 2 extra consultations from a nurse practitioner 3 and 9 months after treatment of HNC. A holistic conversational tool, the Self-Management Web, was developed to guide the nurse through the conversation. Primary outcomes were health-related quality of life (HRQoL) and quality of patient-centered care. A secondary outcome was self-management skills. RESULTS: Twenty-seven patients were included in the IG, and 28 were included in the control group. Differences in HRQoL and self-management between the IG and the control group were not statistically significant. For the IG, all domains of the Self-Management Web were perceived important and addressed by the nurse practitioner. CONCLUSION: This holistic nurse-led aftercare intervention was highly appreciated by HNC patients. Although the intervention met the need for support in recovery after treatment, it did not improve HRQoL or self-management skills. IMPLICATIONS OF PRACTICE: For both nurses and patients, the intervention is feasible and acceptable in daily practice. Self-management support for patients after their cancer treatment is of added value and has potential to improve the quality of regular follow-up care.
Subject(s)
Aftercare , Head and Neck Neoplasms , Cetuximab , Cisplatin , Head and Neck Neoplasms/therapy , Humans , Nurse's Role , Quality of LifeABSTRACT
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.
Subject(s)
Clinical Decision-Making , Models, Theoretical , Prognosis , Clinical Coding , Decision Support Techniques , Humans , Predictive Value of Tests , Risk Assessment/methodsABSTRACT
BACKGROUND: Disclosing prognostic information is necessary to enable patients to make well-informed treatment decisions. OncologIQ is a prognostic model that predicts the overall survival (OS) probability in patients with head and neck squamous cell carcinoma (HNSCC). We aimed to externally validate and update the model with new prognostic factors and translate it to a clinically useful tool. METHODS: A consecutive retrospective sample of 2189 patients eligible for curative treatment of a primary HNSCC were selected. Discriminative performance was determined using the C-statistic. RESULTS: External validation showed systematic underestimation of OS in the new population, and reasonable discrimination (C-statistic 0.67). Adding smoking, pack years, BMI, weight loss, WHO performance, socioeconomic status, and p16 positivity to the recalibrated multivariable model, improved the internally validated C-statistic to 0.71. The model showed minor optimism and was translated in an online tool (www.oncologiq.nl). CONCLUSIONS: The updated model enables personalized patient counseling during treatment decision consultations.
Subject(s)
Head and Neck Neoplasms , Head and Neck Neoplasms/therapy , Humans , Probability , Prognosis , Retrospective Studies , Squamous Cell Carcinoma of Head and Neck/therapyABSTRACT
BACKGROUND: The prognosis of patients with incurable head and neck cancer (HNC) is a relevant topic. The mean survival of these patients is 5 months but may vary from weeks to more than 3 years. Discussing the prognosis early in the disease trajectory enables patients to make well-considered end-of-life choices, and contributes to a better quality of life and death. However, physicians often are reluctant to discuss prognosis, partly because of the concern to be inaccurate. This study investigated the accuracy of physicians' clinical prediction of survival of palliative HNC patients. METHODS: This study was part of a prospective cohort study in a tertiary cancer center. Patients with incurable HNC diagnosed between 2008 and 2011 (n = 191), and their treating physician were included. Analyses were conducted between July 2018 and February 2019. Patients' survival was clinically predicted by their physician ≤3 weeks after disclosure of the palliative diagnosis. The clinical prediction of survival in weeks (CPS) was based on physicians' clinical assessment of the patient during the outpatient visits. More than 25% difference between the actual survival (AS) and the CPS was regarded as a prediction error. In addition, when the difference between the AS and CPS was 2 weeks or less, this was always considered as correct. RESULTS: In 59% (n = 112) of cases survival was overestimated. These patients lived shorter than predicted by their physician (median AS 6 weeks, median CPS 20 weeks). In 18% (n = 35) of the cases survival was correctly predicted. The remaining 23% was underestimated (median AS 35 weeks, median CPS 20 weeks). Besides the differences in AS and CPS, no other significant differences were found between the three groups. There was worse accuracy when predicting survival closer to death: out of the 66 patients who survived 6 weeks or shorter, survival was correctly predicted in only eight (12%). CONCLUSION: Physicians tend to overestimate the survival of palliative HNC patients. This optimism can result in suboptimal use of palliative and end-of-life care. The future development of a prognostic model that provides more accurate estimates, could help physicians with personalized prognostic counseling.
Subject(s)
Clinical Competence/standards , Head and Neck Neoplasms/classification , Physicians/psychology , Prognosis , Adult , Aged , Aged, 80 and over , Clinical Competence/statistics & numerical data , Cohort Studies , Female , Head and Neck Neoplasms/complications , Humans , Male , Middle Aged , Palliative Care/methods , Prospective Studies , Survival Analysis , Tertiary Care Centers/organization & administration , Tertiary Care Centers/statistics & numerical dataABSTRACT
BACKGROUND: Value-based health care is increasingly used to facilitate a systematic approach during follow-up of patients. We developed Healthcare Monitor (HM): a structure of electronic patient-reported outcome measures (ePROs) for the longitudinal follow-up of head and neck cancer (HNC) patients. This study shares key lessons from implementation and seeks to provide insight into how patients experience HM. METHODS: We conducted a mixed-methods study using quantitative data from a nonrandomized retrospective survey of patients who received HM (n = 45) vs standard care (n = 46) and qualitative data from structured interviews (n = 15). RESULTS: Implementation of HM included significant challenges. Finding common ground among clinicians, administrators, and IT staff was most important. Qualitative findings suggest that patients experienced better doctor-patient communication and increased efficiency of the consultation using HM. Patients felt better prepared and experienced more focus on critical issues. Quantitative analysis did not show significant differences. CONCLUSIONS: Integration of HM into routine care for HNC patients may have increased patient-centered care and facilitated screening of symptoms. However, future research is needed to analyze the potential benefits more extensively.
Subject(s)
Head and Neck Neoplasms , Patient Reported Outcome Measures , Delivery of Health Care , Head and Neck Neoplasms/therapy , Humans , Medical Oncology , Retrospective StudiesABSTRACT
BACKGROUND: Head and Neck cancer (HNC) is characterized by significant mortality and morbidity. Treatment is often invasive and interferes with vital functions, resulting in a delicate balance between survival benefit and deterioration in quality of life (QoL). Therefore, including prognostic information during patient counseling can be of great importance. The first aim of this study was to explore HNC patients' preferences for receiving prognostic information: both qualitative (general terms like "curable cancer"), and quantitative information (numbers, percentages). The second aim of this study was to explore patients' views on "OncologIQ", a prognostic model developed to estimate overall survival in newly diagnosed HNC patients. METHODS: We conducted a single center qualitative study by organizing five focus groups with HNC patients (n = 21) and their caregivers (n = 19), categorized in: 1) small laryngeal carcinomas treated with radiotherapy or laser, 2) extensive oral cavity procedures, 3) total laryngectomy, 4) chemoradiation, 5) other treatments. The patients' perspective was the main focus. The interview guide consisted of two main topics: life-expectancy and the prognostic model OncologIQ. All focus groups were recorded, transcribed and coded. Themes were derived using content analysis. RESULTS: While all patients considered it somewhat to very important to receive information about their life-expectancy, only some of them wanted to receive quantitative information. Disclosing qualitative prognostic information like "the cancer is curable" would give enough reassurance for most patients. Overall, patients thought life-expectancy should not be discussed shortly after cancer diagnosis disclosure, as a certain time is needed to process the first shock. They had a stronger preference for receiving prognostic information in case of a poor prognosis. Prognostic information should also include information on the expected QoL. The pie chart was the most preferred chart for discussing survival rates. CONCLUSIONS: The participants found it important to receive information on their life-expectancy. While most patients were enough reassured by qualitative prognostic information, some wanted to receive quantitative information like OncologIQs' estimates. A tailor-made approach is necessary to provide customized prognostic information. A clinical practice guideline was developed to support professionals in sharing prognostic information, aiming to improve shared decision making and patient-centered care.
Subject(s)
Decision Making , Focus Groups/statistics & numerical data , Head and Neck Neoplasms/psychology , Life Expectancy/trends , Patient Preference/psychology , Patient-Centered Care/methods , Quality of Life/psychology , Adult , Aged , Caregivers/standards , Female , Head and Neck Neoplasms/diagnosis , Head and Neck Neoplasms/therapy , Humans , Male , Middle Aged , Prognosis , Qualitative Research , Survival RateABSTRACT
OBJECTIVES: In shared decision making it is important to adequately, timely and actively involve patients in treatment decisions. Sharing prognostic information can be of key importance. This study describes whether and how prognostic information on life expectancy is included during communication on diagnosis and treatment plans between physicians and head and neck (H&N) oncologic patients in different phases of disease. METHODS: A descriptive, qualitative study was performed of nâ¯=â¯23 audiotaped physician-patient conversations in which both palliative and curative treatment options were discussed and questions on prognosis were expected. Verbatim transcribed consultations were systematically analyzed. A distinction was made between prognostic information that was provided (a) quantitatively: by giving numerical probability estimates, such as percentages or years or (b) qualitatively: through the use of words such as 'most likely' or 'highly improbable'. RESULTS: In all consultations, H&N surgeons provided some prognostic information. In 5.9% of the provided prognostic information, a quantitative method was used. In 94.1% prognostic information was provided qualitatively, using six identified approaches. H&N surgeons possibly affect patients' perception of prognostic content with two identified communication styles: directive (more physician-centered) and affective (more patient-centered). CONCLUSION: This study is first in providing examples of how H&N surgeons communicate with their patients regarding prognosis in all stages of disease. They often exclude specific prognostic information. The study outcomes can be used as a first step in developing a guideline for sharing prognostic information in H&N oncologic patients, in order enable the process of shared decision making.