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Head and neck cancer (HNC) patients suffer from a range of health-related quality of life (HRQoL) issues, but little is known about their long-term HRQoL. This study explored associations between treatment group and HRQoL at least 5 years' post-diagnosis in HNC survivors. In an international cross-sectional study, HNC survivors completed the European Organization for Research and Treatment of Cancer (EORTC) quality of life core questionnaire (EORTC-QLQ-C30) and its HNC module (EORTC-QLQ-H&N35). Meaningful HRQoL differences were examined between five treatment groups: (a) surgery, (b) radiotherapy, (c) chemo-radiotherapy, (d) radiotherapy ± chemotherapy and neck dissection and (e) any other surgery (meaning any tumour surgery that is not a neck dissection) and radiotherapy ± chemotherapy. Twenty-six sites in 11 countries enrolled 1105 survivors. They had a median time since diagnosis of 8 years, a mean age of 66 years and 71% were male. After adjusting for age, sex, tumour site and UICC stage, there was evidence for meaningful differences (10 points or more) in HRQoL between treatment groups in seven domains (Fatigue, Mouth Pain, Swallowing, Senses, Opening Mouth, Dry Mouth and Sticky Saliva). Survivors who had single-modality treatment had better or equal HRQoL in every domain compared to survivors with multimodal treatment, with the largest differences for Dry Mouth and Sticky Saliva. For Global Quality of Life, Physical and Social Functioning, Constipation, Dyspnoea and Financial Difficulties, at least some treatment groups had better outcomes compared to a general population. Our data suggest that multimodal treatment is associated with worse HRQoL in the long-term compared to single modality., (© 2024 The Authors. International Journal of Cancer published by John Wiley & Sons Ltd on behalf of UICC.)

Objective: To investigate utilization of mental healthcare among head and neck cancer (HNC) patients from diagnosis to 2 years after treatment, in relation to psychological symptoms, mental disorders, need for mental healthcare, and sociodemographic, clinical and personal factors., Methods: Netherlands Quality of life and Biomedical Cohort study data as measured before treatment, at 3 and 6 months, and at 1 and 2 years after treatment was used (n = 610). Data on mental healthcare utilization (iMCQ), psychological symptoms (Hospital Anxiety and Depression Scale, Cancer Worry Scale), mental disorders (CIDI interview), need for mental healthcare (Supportive Care Needs Survey Short-Form 34, either as continuous outcome indicating the level of need or dichotomized into unmet need (yes/no)) and several sociodemographic, clinical and personal factors were collected. Factors associated with mental healthcare utilization were investigated using generalized estimating equations (p < 0.05)., Results: Of all HNC patients, 5%-9% used mental healthcare per timepoint. This was 4%-14% in patients with mild-severe psychological symptoms, 4%-17% in patients with severe psychological symptoms, 15%-35% in patients with a mental disorder and 5%-16% in patients with an unmet need for mental healthcare. Among all patients, higher symptoms of anxiety, a higher need for mental healthcare, lower age, higher disease stage, lower self-efficacy and higher social support seeking were significantly associated with mental healthcare utilization., Conclusion: Mental health care utilization among HNC patients is limited, and is related to psychological symptoms, need for mental healthcare, and sociodemographic, clinical and personal factors., (© 2023 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Purpose: The aim of this prospective cohort study was to estimate the relationship between the course of HRQOL in the first 2 years after diagnosis and treatment of head and neck cancer (HNC) and personal, clinical, psychological, physical, social, lifestyle, HNC-related, and biological factors., Methods: Data were used from 638 HNC patients of the NETherlands QUality of life and BIomedical Cohort study (NET-QUBIC). Linear mixed models were used to investigate factors associated with the course of HRQOL (EORTC QLQ-C30 global quality of life (QL) and summary score (SumSc)) from baseline to 3, 6, 12, and 24 months after treatment., Results: Baseline depressive symptoms, social contacts, and oral pain were significantly associated with the course of QL from baseline to 24 months. Tumor subsite and baseline social eating, stress (hyperarousal), coughing, feeling ill, and IL-10 were associated with the course of SumSc. Post-treatment social contacts and stress (avoidance) were significantly associated with the course of QL from 6 to 24 months, and social contacts and weight loss with the course of SumSc. The course of SumSc from 6 to 24 months was also significantly associated with a change in financial problems, speech problems, weight loss, and shoulder problems between baseline and 6 months., Conclusion: Baseline clinical, psychological, social, lifestyle, HNC-related, and biological factors are associated with the course of HRQOL from baseline to 24 months after treatment. Post-treatment social, lifestyle, and HNC-related factors are associated with the course of HRQOL from 6 to 24 months after treatment., (© 2023. The Author(s).)

Background: The aim of this prospective cohort study was to investigate swallowing function in relation to personal and clinical factors among patients with head and neck cancer (HNC) from diagnosis up to 2 years after treatment., Methods: The 100 ml water swallow test was measured before treatment, and 3, 6, 12, and 24 months after treatment. Linear mixed-effects model analysis was conducted to investigate changes over time and the association with personal (sex and age) and clinical (tumor site, tumor stage, and treatment modality) factors., Results: Among 128 included patients, number of swallows increased from baseline to 3 months after treatment and decreased to baseline again at 6 months after treatment. The number of swallows was associated with age and treatment modality., Conclusions: In patients with HNC, swallowing (dys)function changes over time with the worst score 3 months after treatment. A higher age and being treated with surgery are factors associated with swallowing dysfunction over time., (© 2022 The Authors. Oral Diseases published by Wiley Periodicals LLC.)

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

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., (© 2023. The Author(s).)

(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.

Psychoneurological symptoms are commonly reported by newly diagnosed head and neck cancer (HNC) patients, yet there is limited research on the associations of these symptoms with biomarkers of stress and inflammation. In this article, pre-treatment data of a multi-center cohort of HNC patients were analyzed using a network analysis to examine connections between symptoms (poor sleep quality, anxiety, depression, fatigue, and oral pain), biomarkers of stress (diurnal cortisol slope), inflammation markers (c-reactive protein [CRP], interleukin [IL]-6, IL-10, and tumor necrosis factor alpha [TNF-α]), and covariates (age and body mass index [BMI]). Three centrality indices were calculated: degree (number of connections), closeness (proximity of a variable to other variables), and betweenness (based on the number of times a variable is located on the shortest path between any pair of other variables). In a sample of 264 patients, poor sleep quality and fatigue had the highest degree index; fatigue and CRP had the highest closeness index; and IL-6 had the highest betweenness index. The model yielded two clusters: a symptoms-cortisol slope-CRP cluster and a IL-6-IL-10-TNF-α-age-BMI cluster. Both clusters were connected most prominently via IL-6. Our findings provide evidence that poor sleep quality, fatigue, CRP, and IL-6 play an important role in the interconnections between psychoneurological symptoms and biomarkers of stress and inflammation in newly diagnosed HNC patients., Competing Interests: The authors declare no conflict of interest.

Purpose: To evaluate the effect of implant-based dental rehabilitation (IDR) on health-related quality of life (HRQoL) in head and neck cancer (HNC) patients after reconstruction with a free vascularized fibula flap (FFF)., Methods: Eligible patients were identified by retrospectively reviewing the medical records of patients treated in Amsterdam UMC-VUmc. HRQoL data were used from OncoQuest, a hospital-based system to collect patient-reported outcome measures in routine care. Data were used of the EORTC QLQ-C30 and QLQ-H&N 35 before FFF reconstruction (T 0 ) and after completing IDR (T 1 ). Data were statistically analysed with the chi-square test, independent samples t test and linear mixed models., Results: Out of 96 patients with maxillofacial FFF reconstruction between January 2006 and October 2017, 57 patients (19 with and 38 without IDR) had HRQoL data at T 0 and T 1 . In the cross-sectional analysis, patients with IDR scored significantly better at T 0 and T 1 on several EORTC domains compared to the patients without IDR. Weight loss was significantly different in the within-subject analysis between T 0 and T 1 for patients with IDR (p = 0.011). However, there were no significant differences in the mean changes of all the EORTC QLQ-C30 and EORTC QLQ-H&N35 scores between the defined timepoints for patients with IDR compared to those without., Conclusions: In this study, no differences were found in the course of HRQoL in HNC patients who had undergone IDR after maxillofacial FFF reconstruction, compared to those who had not. Patients should be preoperatively informed to have realistic expectations regarding the outcome of IDR., (© 2022. The Author(s).)

Purpose: After treatment for head and neck cancer (HNC), patients often experience major problems in masticatory function. The aim of this prospective cohort study among patients with HNC was to investigate which personal and clinical factors are associated with masticatory function from diagnosis up to 2 years after treatment with curative intent., Methods: Masticatory function was measured using the Mixing Ability Test (MAT) before treatment (baseline), and 3, 6, 12, and 24 months after treatment. A linear mixed-effects model with a random intercept and slope was conducted to investigate changes over time and the association with personal (sex, age) and clinical (tumor site, tumor stage, treatment modality) factors as measured at baseline., Result: One-hundred-twenty-five patients were included. The prevalence of masticatory dysfunction was estimated at 29% at M0, 38% at M3, 28% at M6, 26% at M12, and 36% at M24. A higher (worse) MAT score was associated with age, tumor stage, tumor site, timing of assessment, and the interaction between assessment moment and tumor site., Conclusion: In patients with HNC, masticatory function changed over time and dysfunction was associated with a higher age, a tumor in the oral cavity, a higher tumor stage, and a shorter time since treatment. The prevalence of masticatory dysfunction ranged from 26 to 38%., (© 2022. The Author(s).)

Background: To investigate associations between psychological problems and the use of healthcare and informal care and total costs among head and neck cancer (HNC) patients., Method: Data were used of the NETherlands QUality of Life and Biomedical Cohort study. Anxiety and depression disorder (diagnostic interview), distress, symptoms of anxiety and depression (HADS), and fear of cancer recurrence (FCR) and cancer worry scale (CWS) were measured at baseline and at 12-month follow-up. Care use and costs (questionnaire) were measured at baseline, 3-, 6-, 12-, and 24-month follow-up. Associations between psychological problems and care use/costs were investigated using logistic and multiple regression analyses., Results: Data of 558 patients were used. Distress, symptoms of anxiety or depression, FCR, and/or anxiety disorder at baseline were significantly associated with higher use of primary care, supportive care, and/or informal care (odds ratios (ORs) between 1.55 and 4.76). Symptoms of anxiety, FCR, and/or depression disorder at 12-month follow-up were significantly associated with use of primary care, supportive care, and/or informal care (ORs between 1.74 and 6.42). Distress, symptoms of anxiety, and FCR at baseline were associated with higher total costs., Discussion: HNC patients with psychological problems make more use of healthcare and informal care and have higher costs. This is not the result of worse clinical outcomes.

Background: This study assessed the course of fear of cancer recurrence (FCR) in patients newly diagnosed with head and neck cancer (HNC), identified FCR trajectories and factors associated with FCR trajectories., Methods: Six hundred and seventeen HNC patients from the NET-QUBIC cohort study completed the Cancer Worry Scale-6 at diagnosis, 3 and 6 months post-treatment. FCR trajectories were identified using Latent Class Growth Analysis. Associations were explored between FCR trajectories and baseline demographic and medical variables, coping and self-efficacy., Results: Overall, FCR decreased slightly between baseline and 3 months post-treatment and remained stable up to 6 months. Two FCR trajectories were identified: "high stable" (n = 125) and "low declining" (n = 492). Patients with high stable FCR were younger, reported more negative adjustment, passive coping, and reassuring thoughts, and less avoidance., Conclusions: The majority of HNC patients have low declining FCR after diagnosis, but one in five patients experience persistent high FCR up to 6 months post-treatment., (© 2022 The Authors. Head & Neck published by Wiley Periodicals LLC.)

Background: Neurocognition and speech, relevant domains in head and neck cancer (HNC), may be affected pretreatment. However, the prevalence of pretreatment deficits and their possible concurrent predictors are poorly understood., Methods: Using an HNC prospective cohort (Netherlands Quality of Life and Biomedical Cohort Study, N ≥ 444) with a cross-sectional design, we investigated the estimated prevalence of pretreatment deficits and their relationship with selected demographic, behavioral, and disease-related factors., Results: Using objective assessments, rates of moderate-to-severe neurocognitive deficit ranged between 4% and 8%. From patient-reported outcomes, 6.5% of patients reported high levels of cognitive failures and 46.1% reported speech deficits. Patient-reported speech functioning was worse in larynx compared to other subsites. Other nonspeech outcomes were unrelated to any variable. Patient-reported neurocognitive and speech functioning were modestly correlated, especially in the larynx group., Conclusions: These findings indicate that a subgroup of patients with HNC shows pretreatment deficits, possibly accentuated in the case of larynx tumors., (© 2021 The Authors. Head & Neck published by Wiley Periodicals LLC.)

Background: Longitudinal observational cohort studies in cancer patients are important to move research and clinical practice forward. Continued study participation (study retention) is of importance to maintain the statistical power of research and facilitate representativeness of study findings. This study aimed to investigate study retention and attrition (drop-out) and its associated sociodemographic and clinical factors among head and neck cancer (HNC) patients and informal caregivers included in the Netherlands Quality of Life and Biomedical Cohort Study (NET-QUBIC)., Methods: NET-QUBIC is a longitudinal cohort study among 739 HNC patients and 262 informal caregivers with collection of patient-reported outcome measures (PROMs), fieldwork data (interview, objective tests and medical examination) and biobank materials. Study retention and attrition was described from baseline (before treatment) up to 2-years follow-up (after treatment). Sociodemographic and clinical characteristics associated with retention in NET-QUBIC components at baseline (PROMs, fieldwork and biobank samples) and retention in general (participation in at least one component) were investigated using Chi-square, Fisher exact or independent t-tests (p< 0.05)., Results: Study retention at 2-years follow-up was 80% among patients alive (66% among all patients) and 70% among caregivers of patients who were alive and participating (52% among all caregivers). Attrition was most often caused by mortality, and logistic, physical, or psychological-related reasons. Tumor stage I/II, better physical performance and better (lower) comorbidity score were associated with participation in the PROMs component among patients. No factors associated with participation in the fieldwork component (patients), overall sample collection (patients and caregivers) or PROMs component (caregivers) were identified. A better performance and comorbidity score (among patients) and higher age (among caregivers) were associated with study retention at 2-years follow-up., Conclusions: Retention rates were high at two years follow-up (i.e. 80% among HNC patients alive and 70% among informal caregivers with an active patient). Nevertheless, some selection was shown in terms of tumor stage, physical performance, comorbidity and age, which might limit representativeness of NET-QUBIC data and samples. To facilitate representativeness of study findings future cohort studies might benefit from oversampling specific subgroups, such as patients with poor clinical outcomes or higher comorbidity and younger caregivers., (© 2022. The Author(s).)

Purpose: Before and after treatment for head and neck cancer (HNC), many patients have problems with mastication, swallowing, and salivary flow. The aim of this study was to investigate the association between objective test outcomes of mastication, swallowing, and salivary flow versus patient-reported outcomes (PROs) measuring mastication-, swallowing-, and salivary flow-related quality of life., Methods: Data of the prospective cohort "Netherlands Quality of Life and Biomedical Cohort Study" was used as collected before treatment, and 3 and 6 months after treatment. Spearman's rho was used to test the association between objective test outcomes of the mixing ability test (MAT) for masticatory performance, the water-swallowing test (WST) for swallowing performance, and the salivary flow test versus PROs (subscales of the EORTC QLQ-H&N35, Swallow Quality of Life questionnaire (SWAL-QoL-NL) and Groningen Radiation-Induced Xerostomia (GRIX))., Results: Data of 142 patients were used, and in total, 285 measurements were performed. No significant correlations were found between the MAT or WST and subscales of the EORTC QLQ-H&N35. Significant but weak correlations were found between the MAT or WST and 4 subscales of the SWAL-QoL-NL. Weak to moderate correlations were found between the salivary flow test and GRIX at 3 and 6 months after treatment, with the highest correlation between salivary flow and xerostomia during the day (Spearman's rho =  - 0.441, p = 0.001)., Conclusion: The association between objective test outcomes and PROs is weak, indicating that these outcome measures provide different information about masticatory performance, swallowing, and salivary flow in patients with HNC., (© 2021. The Author(s).)

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

Purpose: The aim of this pretest-posttest study was to investigate the reach and effects of My Changed Body (MyCB), an expressive writing activity based on self-compassion, among head and neck cancer (HNC) survivors., Methods: This pilot study had a pretest-posttest design. HNC survivors received an invitation to complete a baseline survey on body image-related distress. At the end of the survey, HNC survivors were asked if they were interested in the intervention study. This entailed the writing activity and a survey 1 week and 1 month post-intervention. The reach was calculated by dividing the number of participants in the intervention study, by the number of (1) eligible HNC survivors and (2) those who filled in the baseline survey. Linear mixed models were used to analyze the effect on body image-related distress. Logistic regression analysis was used to investigate factors associated with the reach and reduced body image-related distress. MyCB was evaluated using study-specific questions., Results: The reach of MyCB was 15-33% (depending on reference group) and was associated with lower education level, more social eating problems, and fewer wound healing problems. Among the 87 participants, 9 (10%) showed a clinically relevant improvement in body image-related distress. No significant effect on body image-related distress was found. Self-compassion improved significantly during follow-up until 1 month post-intervention (p=0.003). Users rated satisfaction with MyCB as 7.2/10., Conclusion: MyCB does not significantly improve body image-related distress, but is likely to increase self-compassion, which sustains for at least 1 month., (© 2021. The Author(s).)

Objectives: To investigate associations between testosterone and patient reported sexual problems and need for sexual care in head and neck cancer patients at time of diagnosis and 6 months after treatment., Patients and Methods: Data and samples were used of 40 patients (20 men, 20 women) before and 6 months after treatment. Outcome measures were total testosterone level (TT) and free testosterone index (FTI), testosterone insufficiency (TI), the EORTC QLQ-HN35 Sexuality subscale, the subscales of the International Index of Erectile Function (IIEF), Female Sexual Function Index (FSFI), and the Sexuality subscale of the Short-Form Supportive Care Needs Survey (SCNS-SF34)., Results: In men, higher FTI before treatment was significantly associated with better IIEF Orgasm (p = 0.020) and at 6 months follow-up with IIEF Desire (p = 0.019). Before treatment, insufficient testosterone was present in 5 males (25%) and in 3 at follow-up (15%) (2 patients who had TI before treatment plus one). In women, higher TT at follow-up was significantly associated with better EORTC Sexuality (p = 0.031) and FSFI Satisfaction (p = 0.020); FTI at follow-up was associated with FSFI Satisfaction (p = 0.012). Before treatment, TI was present in 2 women (10%) and in 3 (15%) at follow-up (the same 2 patients plus one)., Conclusion: This pilot study showed that testosterone seems to be associated with patient reported sexual outcomes among male and female head and neck cancer patients. It is estimated that 10-25% of HNC patients may have testosterone insufficiency before treatment and/or at 6 months after treatment., (Copyright © 2021 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Background: Dysphagia may occur in up to 44% of patients with head and neck cancer (HNC) treated with radiation therapy and up to 84% of patients treated with surgery. To test the extent of dysphagia, the 100 mL water swallow test (WST) was developed. In this study, reliability of the 100 mL WST was determined in patients with HNC and healthy subjects., Methods: Thirty-three patients and 40 healthy subjects performed the WST twice on the same day. To assess reliability, the intraclass correlation coefficient (ICC 2,1 ), standard error of measurement, smallest detectable change, and limits of agreement were calculated., Results: Good to excellent correlations were found for patients with HNC (number of swallows; ICC = 0.923, duration; ICC = 0.893), and excellent correlations for healthy subjects (number of swallows; ICC = 0.950, duration; ICC = 0.916)., Conclusion: The 100 mL WST has a good to excellent reliability in patients with HNC and healthy subjects., (© 2021 The Authors. Head & Neck published by Wiley Periodicals LLC.)

Objectives: Patients with head and neck cancer (HNC) often report disturbances in their sleep quality, impairing their quality of life. This study aims to examine the trajectories of sleep quality from diagnosis up to 6-month after treatment, as well as the pre-treatment risk factors for poor sleep trajectories., Materials and Methods: Sleep quality (Pittsburgh sleep quality index) was measured shortly after diagnosis (pre-treatment), and at 3 and 6 months after finishing treatment. Patients were categorized into 5 trajectory groups. We examined the association of sleep quality trajectories with sociodemographic and clinical characteristics, coping style, HNC symptoms, and psychological distress., Results: Among 412 included patients, about a half either had a persistent good sleep (37.6%) or an improving (16.5%) trajectory. About a third had a persistent poor sleep (21.8%) or worsening (10.9%) sleep trajectory. The remaining patients (13.1%), alternated between good and poor sleep. Using persistent good sleep as a reference outcome, persistent poor sleepers were more likely to be woman (odds ratio [OR] = 1.98, 95% confidence interval [CI] 1.01-3.90), use painkillers prior to treatment (OR = 2.52, 95% CI 1.33-4.77), and have more pre-treatment anxiety symptoms (OR = 1.26, 95% CI 1.15-1.38)., Conclusion: Unfavorable sleep quality trajectories are prevalent among HNC patients from pre-treatment to 6-month after treatment. A periodic sleep evaluation starting shortly after HNC diagnosis is necessary to identify persistent sleep problems, especially among high-risk group., (Copyright © 2021 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Head and neck cancer (HNC) patients often suffer from distress attributed to their cancer diagnosis which may disturb their sleep. However, there is lack of research about poor sleep quality among newly diagnosed HNC patients. Therefore, our aim was to investigate the prevalence and the associated factors of poor sleep quality among HNC patients before starting treatment., Materials and Methods: A cross-sectional study was conducted using the baseline data from NET-QUBIC study, an ongoing multi-center cohort of HNC patients in the Netherlands. Poor sleep quality was defined as a Pittsburgh Sleep Quality Index (PSQI) total score of > 5. Risk factors examined were sociodemographic factors (age, sex, education level, living situation), clinical characteristics (HNC subsite, tumor stage, comorbidity, performance status), lifestyle factors, coping styles, and HNC symptoms., Results: Among 560 HNC patients, 246 (44%) had poor sleep quality before start of treatment. Several factors were found to be significantly associated with poor sleep: younger age (odds ratio [OR] for each additional year 0.98, 95% CI 0.96-1.00), being female (OR 2.6, 95% CI 1.7-4.1), higher passive coping style (OR 1.18, 95% CI 1.09-1.28), more oral pain (OR 1.10, 95% CI 1.01-1.19), and less sexual interest and enjoyment (OR 1.13, 95% CI 1.06-1.20)., Conclusion: Poor sleep quality is highly prevalent among HNC patients before start of treatment. Early evaluation and tailored intervention to improve sleep quality are necessary to prepare these patients for HNC treatment and its consequences.

Technical improvements in head and neck cancer radiotherapy over the last decade have resulted in substantial reductions in dose to organs-at-risk. For a mix of tumors, we saw less xerostomia moving from 3D-conformal to more advanced techniques. For oropharynx-only there were additional improvements, including in global quality-of-life and sticky saliva., (Copyright © 2020 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: Treatment of patients with head and neck cancer can result in disrupted mastication. To measure masticatory performance in people with compromised mastication, the mixing ability test (MAT) was developed., Objective: In this study, the reliability of the MAT was evaluated in patients with head and neck cancer and healthy controls., Methods: Thirty-four patients with head and neck cancer and 42 healthy controls performed the MAT twice on the same day. To assess reliability, the intra-class correlation coefficient (ICC 2,1 ), standard error of measurement (SEM), smallest detectable change (SDC) and limits of agreement (LoA) were calculated., Results: A good (ICC = 0.886) and moderate correlation (ICC = 0.525) were found for patients and healthy controls, respectively. Patients had a worse mixing ability (mean = 19.12, SD = 4.56) in comparison with healthy controls (mean = 16.42, SD = 2.04). The SEM was 0.76 in patients and 1.45 in healthy controls, with a SDC of 2.12 and 4.02, respectively. The LoA was -4.46 to 4.42 in patients and -3.65 to 4.59 in healthy controls., Conclusion: The MAT has a good reliability in patients with head and neck cancer and a moderate reliability in healthy controls., (© 2020 The Authors. Journal of Oral Rehabilitation published by John Wiley & Sons Ltd.)

Purpose: Stepped care (SC), consisting of watchful waiting, guided self-help, problem-solving therapy, and psychotherapy/medication is, compared to care-as-usual (CAU), effective in improving psychological distress. This study presents secondary analyses on subgroups of patients who might specifically benefit from watchful waiting, guided self-help, or the entire SC program., Methods: In this randomized controlled trial, head and neck and lung cancer patients with distress (n = 156) were randomized to SC or CAU. Univariate logistic regression analyses were performed to investigate baseline factors associated with recovery after watchful waiting and guided self-help. Potential moderators of the effectiveness of SC compared to CAU were investigated using linear mixed models., Results: Patients without a psychiatric disorder, with better psychological outcomes (HADS: all scales) and better health-related quality of life (HRQOL) (EORTC QLQ-C30/H&N35: global QOL, all functioning, and several symptom domains) were more likely to recover after watchful waiting. Patients with better scores on distress, emotional functioning, and dyspnea were more likely to recover after guided self-help. Sex, time since treatment, anxiety or depressive disorder diagnosis, symptoms of anxiety, symptoms of depression, speech problems, and feeling ill at baseline moderated the efficacy of SC compared to CAU., Conclusions: Patients with distress but who are relatively doing well otherwise, benefit most from watchful waiting and guided self-help. The entire SC program is more effective in women, patients in the first year after treatment, patients with a higher level of distress or anxiety or depressive disorder, patients who are feeling ill, and patients with less speech problems., Trial: NTR1868.

This systematic review and meta-analysis aim to investigate the prevalence rates of various types of sleep disturbances among head and neck cancer (HNC) patients before, during, and after cancer treatment. We performed a systematic search on PubMed, Embase, CINAHL, and PsycINFO to find studies that reported the prevalence of any type of sleep disturbance among adult HNC patients. Meta-analyses of prevalence were performed using random effects models, with I 2 values to indicate the extent of heterogeneity. In total, 29 studies of accumulatively 2315 HNC patients were included. The quality of the studies was fairly low and the heterogeneity was high. Studies on three types of sleep disturbances were found: insomnia (17 studies), hypersomnolence (12 studies), and sleep-related breathing disturbances (14 studies). The prevalence of insomnia was 29% (95% CI 20-41%) before treatment, 45% (95% CI 33-58%) during treatment, and 40% (95% CI 24-58%) after treatment, while for hypersomnolence the prevalence was 16% (95% CI 7-32%) before treatment and 32% (95% CI 20-48%) after treatment. The prevalence of sleep-related breathing disturbances before and after treatment was 66% (95% CI 44-82%) and 51% (95% CI 34-67%), respectively. These results imply that sleep disturbances are highly prevalent among HNC patients before, during, and after treatment., (Copyright © 2019 Elsevier Ltd. All rights reserved.)

Background: Patients with head and neck cancer (HNC) are vulnerable to fear of cancer recurrence (FCR) and psychiatric morbidity. We investigated the prevalence of high FCR and demographic, clinical, psychological, and psychiatric factors associated with high FCR prior to the start of the treatment., Methods: In a cross-sectional substudy of the large ongoing prospective NET-QUBIC study questionnaires and psychiatric interviews of 216 patients newly diagnosed with HNC were analyzed., Results: High FCR was observed in 52.8% of patients and among those 21.1% also had a lifetime history of selected anxiety or major depressive disorder. FCR was not related to any clinical characteristics; however, younger age, higher anxiety symptoms, introversion, greater needs for support regarding sexuality, and being an exsmoker were significantly associated with higher FCR., Conclusion: Factors associated with high FCR provide us with a better conceptual understanding of FCR in patients newly diagnosed with HNC., (© 2019 The Authors. Head & Neck published by Wiley Periodicals, Inc.)

Objective: To systematically review the literature on factors associated with a clinical diagnosis of depression or symptoms of depression (depression) among head and neck cancer (HNC) patients., Methods: The search was conducted in PubMed, PsycINFO, and CINAHL. Studies were included if they investigated factors associated with depression among HNC patients, they were of prospective or longitudinal nature, and English full text was available. The search, data extraction, and quality assessment were performed by two authors. Based on the data extraction and quality assessment, the level of evidence was determined., Results: In total, 35 studies were included: 21 on factors associated with depression at a single (later) time point, 10 on the course of depression, and four on both. In total, 77 sociodemographic, lifestyle, clinical, patient-reported outcome measures, and inflammatory factors were extracted. Regarding depression at a single time point, there was strong evidence that depression at an earlier time point was significantly associated. For all other factors, evidence was inconclusive, although evidence suggests that age, marital status, education, ethnicity, hospital/region, sleep, smoking, alcohol, surgery, treatment, tumor location, and recurrence are not important associated factors. Regarding the course of depression, we found inconclusive evidence for all factors, although evidence suggests that gender, age, chemotherapy, pain, disease stage, treatment, and tumor location are not important associated factors., Conclusion: Depression at an earlier time point is significantly associated with depression later on. Several sociodemographic and clinical factors seem not to be important factors associated with depression. For other factors, further research is warranted., (© 2019 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd.)

Importance: Head and neck cancer (HNC) and its treatment may negatively alter neurocognitive and speech functioning. However, the prevalence of neurocognitive impairment among patients with HNC before treatment is poorly studied, and the association between neurocognitive and speech functioning is unknown, which hampers good interpretability of the effect of HNC treatment on neurocognitive and speech function., Objectives: To document neurocognitive functioning in patients with HNC before treatment and to investigate the association between neurocognitive and speech functioning., Design, Setting, and Participants: Prospective cohort study of newly diagnosed patients with HNC before treatment using a large sample obtained in a nationwide, multicenter setting (Netherlands Quality of Life and Biomedical Cohort Study in Head and Neck Cancer [NET-QUBIC] project)., Main Outcome and Measures: Objective neuropsychological measures of delayed recall, letter fluency, and executive functioning, as well as patient-reported outcome measures on neurocognitive speech and functioning, were collected before treatment., Results: In total, 254 patients with HNC participated (71.7% male), with a mean (SD) age of 62 (10) years. The response rate ranged from 81.9% (208 of 254) to 84.6% (215 of 254). Objective neurocognitive measures indicated that 4.7% (10 of 212) to 15.0% (32 of 214) of patients were initially seen with moderate to severe cognitive impairment. Mild to moderate impairment was found in 12.3% (26 of 212) to 26.2% (56 of 214) of patients. The most altered domains were delayed recall and letter fluency. Seven percent (15 of 208) of the patients reported high levels of everyday neurocognitive failure, and 42.6% (89 of 209) reported speech problems. Objective neurocognitive function was not significantly associated with patient-reported neurocognitive or speech functioning, but the results from patient-reported outcome measures were significantly correlated., Conclusions and Relevance: Results of this study demonstrate a high prevalence of impaired speech functioning among patients with HNC before treatment, which is in line with previous findings. A novel finding is that neurocognitive impairment is also highly prevalent as objectively measured and as self-perceived. Understanding the reason why patients with HNC are initially seen with neurocognitive impairment before the start of treatment is important because this impairment may complicate patient-clinician interaction and alter treatment adherence and because treatment itself may further worsen cognitive functioning. In addition, low self-perceived neurocognitive and speech functioning before treatment may decrease a patient's confidence in communicative participation and perceived quality of life. Disentangling the associations between objective and patient-reported neurocognitive and speech functions is an important area for future research.

Objective: The objective of the study is to investigate the relation between pretreatment depressive symptoms (DS) and the course of DS during the first year after cancer diagnosis, and overall survival among people with head and neck cancer (HNC)., Methods: Data from the Head and Neck 5000 prospective clinical cohort study were used. Depressive symptoms were measured using the Hospital Anxiety and Depression Scale (HADS) pretreatment, at 4 and 12-month follow-up. Also, socio-demographic, clinical, lifestyle, and mortality data were collected. The association between before start of treatment DS (HADS-depression > 7) and course (never DS, recovered from DS, or persistent/recurrent/late DS at 12-month follow-up) and survival was investigated using Cox regression. Unadjusted and adjusted analyses were performed., Results: In total, 384 of the 2144 persons (18%) reported pretreatment DS. Regarding DS course, 63% never had DS, 16% recovered, and 20% had persistent/recurrent/late DS. People with pretreatment DS had a higher risk of earlier death than people without DS (hazard ratio (HR) = 1.65; 95% confidence interval (CI) 1.33-2.05), but this decreased after correcting for socio-demographic, clinical, and lifestyle-related factors (HR = 1.21; 95% CI 0.97-1.52). Regarding the course of DS, people with persistent/recurrent/late DS had a higher risk of earlier death (HR = 2.04; 95% CI 1.36-3.05), while people who recovered had a comparable risk (HR = 1.12; 95% CI 0.66-1.90) as the reference group who never experienced DS. After correcting for socio-demographic and clinical factors, people with persistent/recurrent/late DS still had a higher risk of earlier death (HR = 1.66; 95% CI 1.09-2.53)., Conclusions: Pretreatment DS and persistent/recurrent/late DS were associated with worse survival among people with HNC., (© 2018 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd.)

Purpose: This study aimed to assess patient-reported levels of physical activity (PA) and its associations with health-related quality of life (HRQoL) adjusted for important demographic, lifestyle-related, and clinical factors, among head and neck (HNC) survivors., Methods: This cross-sectional study included 116 HNC survivors. PA was assessed with the Physical Activity Scale for the Elderly (PASE) and HRQoL with the EORTC-QLQ-C30 and EORTC-HN35. Associations were studied using univariable and multivariable regression analyses., Results: Median PASE score was 100.3 (interquartile range 65.1;170.8) of which 54% were household, 34% leisure-time, and 12% occupational activities. Younger HNC survivors had higher levels of PA. Higher PA was significantly associated with higher global QoL (p < 0.05). Findings for physical function, role function, social function, fatigue, and pain were in line, but not statistically significant (0.05 ≤ p < 0.10)., Conclusions: Among HNC survivors, a large proportion of PA consists of household activities. Younger HNC survivors had higher PA levels, and higher PA levels were associated with higher HRQoL.

The background and purpose of this paper is to investigate adherence, exercise performance levels and associated factors in head and neck cancer (HNC) patients participating in a guided home-based prophylactic exercise program during and after treatment [swallowing sparing intensity modulated radiation therapy (SW-IMRT)]. Fifty patients were included in the study. Adherence was defined as the percentage of patients who kept up exercising; exercise performance level was categorized as low: ≤1, moderate: 1-2, and high: ≥2 time(s) per day, on average. Associations between 6- and 12-week exercise performance levels and age, gender, tumour site and stage, treatment, intervention format (online or booklet), number of coaching sessions, and baseline HNC symptoms (EORTC-QLQ-H&N35) were investigated. Adherence rate at 6 weeks was 70% and decreased to 38% at 12 weeks. In addition, exercise performance levels decreased over time (during 6 weeks: 34% moderate and 26% high; during 12 weeks: 28% moderate and 18% high). The addition of chemotherapy to SW-IMRT [(C)SW-IMRT] significantly deteriorated exercise performance level. Adherence to a guided home-based prophylactic exercise program was high during (C)SW-IMRT, but dropped afterwards. Exercise performance level was negatively affected by chemotherapy in combination with SW-IMRT., Competing Interests: We have full control of all primary data, and we are ready to allow the journal to review data if requested. No competing financial interests exist for either author.

Purpose A stepped care (SC) program in which an effective yet least resource-intensive treatment is delivered to patients first and followed, when necessary, by more resource-intensive treatments was found to be effective in improving distress levels of patients with head and neck cancer or lung cancer. Information on the value of this program for its cost is now called for. Therefore, this study aimed to assess the cost-utility of the SC program compared with care-as-usual (CAU) in patients with head and neck cancer or lung cancer who have psychological distress. Patients and Methods In total, 156 patients were randomly assigned to SC or CAU. Intervention costs, direct medical costs, direct nonmedical costs, productivity losses, and health-related quality-of-life data during the intervention or control period and 12 months of follow-up were calculated by using Trimbos and Institute of Medical Technology Assessment Cost Questionnaire for Psychiatry, Productivity and Disease Questionnaire, and EuroQol-5 Dimension measures and data from the hospital information system. The SC program's value for the cost was investigated by comparing mean cumulative costs and quality-adjusted life years (QALYs). Results After imputation of missing data, mean cumulative costs were -€3,950 (95% CI, -€8,158 to -€190) lower, and mean number of QALYs was 0.116 (95% CI, 0.005 to 0.227) higher in the intervention group compared with the control group. The intervention group had a probability of 96% that cumulative QALYs were higher and cumulative costs were lower than in the control group. Four additional analyses were conducted to assess the robustness of this finding, and they found that the intervention group had a probability of 84% to 98% that cumulative QALYs were higher and a probability of 91% to 99% that costs were lower than in the control group. Conclusion SC is highly likely to be cost-effective; the number of QALYs was higher and cumulative costs were lower for SC compared with CAU.

Background: Recent results of a randomized clinical trial showed that a guided self-help intervention (based on problem-solving therapy) targeting psychological distress among head and neck cancer and lung cancer patients is effective. This study qualitatively explored motivation to start, experiences with and perceived outcomes of this intervention., Methods: Data were collected from semi-structured interviews of 16 patients. All interviews were audio-recorded and transcribed verbatim. Data were analyzed individually by two coders and coded into key issues and themes., Results: Patients participated in the intervention for intrinsic (e.g. to help oneself) and for extrinsic reasons (e.g. being asked by a care professional or to help improve health care). Participants indicated positive and negative experiences with the intervention. Several participants appreciated participating as being a pleasant way to work on oneself, while others described participating as too confrontational. Some expressed their disappointment as they felt the intervention had brought them nothing or indicated that they felt worse temporarily, but most participants perceived positive outcomes of the intervention (e.g. feeling less distressed and having learned what matters in life)., Conclusions: Cancer patients have various reasons to start a guided self-help intervention. Participants appreciated the guided self-help as intervention to address psychological distress, but there were also concerns. Most participants reported the intervention to be beneficial. The results suggest the need to identify patients who might benefit most from guided self-help targeting psychological distress and that interventions should be further tailored to individual cancer patients' requirements., Competing Interests: The authors declare that they have no conflict of interest.

Purpose: The purpose of this study is to assess the psychometric properties of the Dutch version of the 34-item Short-Form Supportive Care Needs Survey (SCNS-SF34) and the newly developed module for head and neck cancer (HNC) patients (SCNS-HNC)., Methods: HNC patients were included from two cross-sectional studies. Content validity of the SCNS-HNC was analysed by examining redundancy and completeness of items. Factor structure was assessed using confirmatory and exploratory factor analyses. Cronbach's alpha, Spearman's correlation, Mann-Whitney U test, Kruskall-Wallis and intraclass correlation coefficients (ICC) were used to assess internal consistency, construct validity and test-retest reliability., Results: Content validity of the SCNS-HNC was good, although some HNC topics were missing. For the SCNS-SF34, a four-factor structure was found, namely physical and daily living, psychological, sexuality and health system and information and patient support (alpha = .79 to .95). For the SCNS-HNC, a two-factor structure was found, namely HNC-specific functioning and lifestyle (alpha = .89 and .60). Respectively, 96 and 89 % of the hypothesised correlations between the SCNS-SF34 or SCNS-HNC and other patient-reported outcome measures were found; 57 and 67 % also showed the hypothesised magnitude of correlation. The SCNS-SF34 domains discriminated between treatment procedure (physical and daily living p = .02 and psychological p = .01) and time since treatment (health system, information and patient support p = .02). Test-retest reliability of SCNS-SF34 domains and HNC-specific functioning domain was above .70 (ICC = .74 to .83), and ICC = .67 for the lifestyle domain. Floor effects ranged from 21.1 to 70.9 %., Conclusions: The SCNS-SF34 and SCNS-HNC are valid and reliable instruments to evaluate the need for supportive care among (Dutch) HNC patients., Competing Interests: The authors declare that they have no conflict of interest.

The objective of this study is to assess swallowing and speech outcome after chemoradiation therapy for head and neck cancer, based on the patient-reported outcome measures Swallowing Quality of Life Questionnaire (SWAL-QOL) and Speech Handicap Index (SHI), both provided with cut-off scores. This is a cross-sectional study. Department of Otolaryngology/Head and Neck Surgery of a University Medical Center. Sixty patients, 6 months to 5 years after chemoradiation for head and neck squamous cell carcinoma. Swallowing Quality of Life Questionnaire (SWAL-QOL) and SHI, both validated in Dutch and provided with cut-off scores. Associations were tested between the outcome measures and independent variables (age, gender, tumor stage and site, and radiotherapy technique, time since treatment, comorbidity and food intake). Fifty-two patients returned the SWAL-QOL and 47 the SHI (response rate 87 and 78 %, respectively). Swallowing and speech problems were present in 79 and 55 %, respectively. Normal food intake was noticed in 45, 35 % had a soft diet and 20 % tube feeding. Patients with soft diet and tube feeding reported more swallowing problems compared to patients with normal oral intake. Tumor subsite was significantly associated with swallowing outcome (less problems in larynx/hypopharynx compared to oral/oropharynx). Radiation technique was significantly associated with psychosocial speech problems (less problems in patients treated with IMRT). Swallowing and (to a lesser extent) speech problems in daily life are frequently present after chemoradiation therapy for head and neck cancer. Future prospective studies will give more insight into the course of speech and swallowing problems after chemoradiation and into efficacy of new radiation techniques and swallowing and speech rehabilitation programs.

Purpose: The purpose of the study is to investigate screening in follow-up care to identify head and neck cancer (HNC) patients with untreated psychological distress., Methods: From November 2009 until December 2012, we investigated the use of OncoQuest (a touch screen computer system to monitor psychological distress (Hospital Anxiety and Depression Scale (HADS)) and quality of life (HRQOL; EORTC QLQ-C30 and H&N35 module) in routine follow-up care. Patients who screened positive for psychological distress (HADS-T >14, HADS-A >7, or HADS-D >7) were asked whether they received psychological or psychiatric treatment., Results: During the study period of 37 months, OncoQuest was used by 720 individual HNC patients, of whom 714 had complete HADS data. Psychological distress was present in 206 patients (29 %). Of those patients who fulfilled in- and exclusion criteria (n = 137), 25 received psychological treatment (18 %). Receipt of psychological treatment was significantly related to a higher score on the HADS total scale (19.6 vs. 16.9; p = 0.019), a lower (worse) score on the EORTC QLQ-C30 scale emotional functioning (46.0 vs. 58.6; p = 0.023), a higher (worse) score on fatigue (58.2 vs. 46.4; p = 0.032), problems with sexuality (44.1 vs. 34.4; p = 0.043), oral pain (43.8 vs. 28.8; p = 0.011) and speech problems (37.0 vs. 25.3; p = 0.042)., Conclusions: Screening for psychological distress via OncoQuest is beneficial because 82 % of HNC patients identified with an increased level of distress who do not yet receive mental treatment were identified. Patients who did receive treatment reported more distress and worse quality of life, which may be explained because patients with more severe problems maybe more inclined to seek help or might be detected easier by caregivers and referred to supportive care more often.

Background: This study investigates cutoff scores for the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30-questions (EORTC QLQ-C30) and head and neck cancer-specific module (QLQ-H&N35) to identify patients with head and neck cancer who may require clinical attention., Methods: Ninety-six patients with head and neck cancer completed the EORTC QLQ-C30/H&N35 and questions on supportive care needs. For all EORTC domains with the ability to discriminate between patients with and without unmet needs (area under the receiver operating characteristic curve [AUC] ≥0.70), the accuracy (eg, sensitivity and specificity) of potential cutoff scores were calculated., Results: Cutoff scores (sensitivity ≥0.80 and specificity ≥0.60) of 90 (functioning domains) and 5 to 10 (symptom domains) were found on 7 of 28 continuous EORTC QLQ-C30/H&N35 domains. Borderline cutoff scores (sensitivity ≥0.70 and specificity ≥0.60 or sensitivity ≥0.80 and specificity ≥0.50) were found on 5 other domains., Conclusions: This study provided cutoff scores on the EORTC QLQ-C30 and H&N35 based on patients' perceptions of their needs for supportive care. Future research is needed on the replicability of these cutoff scores. © 2015 Wiley Periodicals, Inc. Head Neck 38: E1493-E1500, 2016., (© 2015 Wiley Periodicals, Inc.)

Purpose: The aim of this study was to clinically validate a multivariable normal tissue complication probability (NTCP) model for grade 2-4 swallowing dysfunction at 6months after radiotherapy or chemoradiation (SWALM6) in head and neck cancer patients treated with swallowing sparing intensity modulated radiotherapy (SW-IMRT) and to test if SW-IMRT resulted in a reduction of the prevalence of SWALM6., Materials and Methods: The primary endpoint was SWALM6. For all 186 patients, a standard IMRT (parotid sparing) and a SW-IMRT plan (additional constraints for swallowing organs at risk) was created. The difference in NTCP for SWALM6 (ΔNTCPSWALM6=NTCPstandard-NTCPSW-IMRT) was calculated. Patients were treated with SW-IMRT. The external validation of the NTCP model was analyzed by comparing performance measures., Results: The mean ΔNTCPSWALM6 was 4.9% (range 0.01-17.3%), with a significant lower mean predicted NTCPSW-IMRT of 22.6% (95% CI 20.2-24.9%), compared to NTCPstandard of 27.5% (95% CI 24.9-29.9%) (p<0.001). There was a perfect correspondence of NTCPSW-IMRT with the observed prevalence of SWALM6 (22.6%). The overall model performance, discrimination and 'goodness of fit' were good., Conclusion: We externally validated the multivariable NTCP model for SWALM6 in SW-IMRT treated patients, showing reduced swallowing dysfunction by reducing the dose parameters included in this NTCP model., (Copyright © 2015 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.)

Objectives: To identify patterns of long-term, radiation-induced swallowing dysfunction after definitive radiotherapy with or without chemotherapy (RT or CHRT) and to determine which factors may explain these patterns over time., Material and Methods: The study population consisted of 238 consecutive head and neck cancer patients treated with RT or CHRT. The primary endpoint was ⩾grade 2 swallowing dysfunction at 6, 12, 18 and 24months after treatment. Cluster analysis was used to identify different patterns over time. The differences between the mean dose to the swallowing organs at risk for each pattern were determined by using dose maps., Results: The cluster analysis revealed five patterns of swallowing dysfunction: low persistent, intermediate persistent, severe persistent, transient and progressive. Patients with high dose to the upper pharyngeal, laryngeal and lower pharyngeal region had the highest risk of severe persistent swallowing dysfunction. Transient problems mainly occurred after high dose to the laryngeal and lower pharyngeal regions, combined with moderate dose to the upper pharyngeal region. The progressive pattern was mainly seen after moderate dose to the upper pharyngeal region., Conclusions: Various patterns of swallowing dysfunction after definitive RT or CHRT can be identified over time. This could reflect different underlying biological processes., (Copyright © 2015 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.)

Aims and Objectives: To gain insight into cancer survivors' needs towards an eHealth application monitoring quality of life and targeting personalised access to supportive care., Background: Supportive care in cancer addresses survivors' concerns and needs. However, many survivors are not taking advantage of supportive care provided. To enable cancer survivors to benefit, survivors' needs must be identified timely and effectively. An eHealth application could be a solution to meet patients' individual supportive care needs., Design: A qualitative approach., Methods: Thirty cancer survivors (15 head and neck and 15 breast cancer survivors) participated. The majority were female (n = 20·67%). The mean age was 60 (SD 8·8) years. Mean time interval since treatment was 13·5 months (SD 10·5). All interviews were audio-recorded and transcribed verbatim. During the interviews, participants were asked about their unmet needs during follow-up care and a potential eHealth application. Data were analyzed independently by two coders and coded into key issues and themes., Results: Cancer survivors commented that they felt unprepared for the post-treatment period and that their symptoms often remained unknown to care providers. Survivors also mentioned a suboptimal referral pattern to supportive care services. Mentioned advantages of an eHealth application were as follows: insight into the course of symptoms by monitoring, availability of information among follow-up appointments, receiving personalised advice and tailored supportive care., Conclusions: Cancer survivors identified several unmet needs during follow-up care. Most survivors were positive towards the proposed eHealth application and expressed that it could be a valuable addition to follow-up cancer care., Relevance to Clinical Practice: Study results provide care providers with insight into barriers that impede survivors from obtaining optimal supportive care. This study also provides insight into the characteristics needed to design, build and implement an eHealth application targeting personalised access to supportive care from the survivors' perspective. Future studies should address the viewpoints of care providers, and investigate the usability of the eHealth application prototype to facilitate implementation., (© 2015 John Wiley & Sons Ltd.)

The aim of this study was to systematically review available evidence on the association between health-related quality of life (HRQoL) and survival in patients with head and neck cancer (HNC), adjusted for important clinical, demographic and lifestyle-related factors. A systematic literature search in four electronic bibliographic databases was conducted in January 2014. We included studies that provided data on HRQoL, survival, and the association between HRQoL and survival among HNC patients. Two researchers independently rated the quality of the included studies. A best evidence synthesis was applied to draw conclusions. Nineteen studies were included, of which twelve focused on all subscales of a HRQoL questionnaire and seven focused on selected subscales. The mean (SD) quality score was 72 (17)% and 11 (58)% studies were of high quality. According to the best evidence synthesis, we found strong evidence for a positive association between pre-treatment physical functioning and survival and between change in global QoL from pre-treatment to 6 months after treatment and survival. Due to inconsistent findings, we found insufficient evidence for an association with survival of other HRQoL domains, including role, emotional, cognitive and social functioning, mental health and well-being. Future high quality studies with a longitudinal design are needed to examine the complex association between HRQoL and survival., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

Purpose: Large cohort studies are needed taking into account cancer-related, personal, biological, psychobehavioral, and lifestyle-related factors, to guide future research to improve treatment and supportive care. We aimed to evaluate the feasibility of a comprehensive baseline assessment of a cohort study evaluating the course of quality of life (QoL)., Methods: Newly diagnosed head and neck cancer (HNC) patients were asked to participate. Assessments consisted of questionnaires (635 items), a home visit (including a psychiatric interview, physical tests, and blood and saliva collection), and tissue collection. Representativeness of the study sample was evaluated by comparing demographics, clinical factors, depression, anxiety, and QoL between responders and non-responders. Feasibility was evaluated covering the number of questions, time investment, intimacy, and physical burden., Results: During the inclusion period (4 months), 15 out of 26 (60 %) patients agreed to participate. Less women participated, 13 % in responders group versus 63 % in non-responders group (p = 0.008). No other differences were found between responders and non-responders. Responders completed more than 95 % of the questionnaires' items and rated the number of questions, time investment and intimacy as feasible, and the physical and psychological burden as low. It took on average 3 h to complete the questionnaires and 1.5 h for the home visit., Conclusions: This study reveals that a comprehensive assessment including various questionnaires, physical measurements, and biological assessments is feasible according to patients with newly diagnosed HNC. A large prospective cohort study has started aiming to include 739 HNC patients and their informal caregivers in the Netherlands.

Background and Purpose: Curative radiotherapy/chemo-radiotherapy for head and neck cancer (HNC) may result in severe acute and late side effects, including tube feeding dependence. The purpose of this prospective cohort study was to develop a multivariable normal tissue complication probability (NTCP) model for tube feeding dependence 6 months (TUBEM6) after definitive radiotherapy, radiotherapy plus cetuximab or concurrent chemoradiation based on pre-treatment and treatment characteristics., Materials and Methods: The study included 355 patients with HNC. TUBEM6 was scored prospectively in a standard follow-up program. To design the prediction model, the penalized learning method LASSO was used, with TUBEM6 as the endpoint., Results: The prevalence of TUBEM6 was 10.7%. The multivariable model with the best performance consisted of the variables: advanced T-stage, moderate to severe weight loss at baseline, accelerated radiotherapy, chemoradiation, radiotherapy plus cetuximab, the mean dose to the superior and inferior pharyngeal constrictor muscle, to the contralateral parotid gland and to the cricopharyngeal muscle., Conclusions: We developed a multivariable NTCP model for TUBEM6 to identify patients at risk for tube feeding dependence. The dosimetric variables can be used to optimize radiotherapy treatment planning aiming at prevention of tube feeding dependence and to estimate the benefit of new radiation technologies., (Copyright © 2014 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.)

Background: Curative radiotherapy or chemoradiation for head and neck cancer (HNC) may result in severe acute and late side effects, including tube feeding dependence. The purpose of this prospective cohort study was to develop a prediction model for tube feeding dependence 6 months (TUBEM6) after curative (chemo-) radiotherapy in HNC patients., Patients and Methods: Tube feeding dependence was scored prospectively. To develop the multivariable model, a group LASSO analysis was carried out, with TUBEM6 as the primary endpoint (n = 427). The model was then validated in a test cohort (n = 183). The training cohort was divided into three groups based on the risk of TUBEM6 to test whether the model could be extrapolated to later time points (12, 18 and 24 months)., Results: Most important predictors for TUBEM6 were weight loss prior to treatment, advanced T-stage, positive N-stage, bilateral neck irradiation, accelerated radiotherapy and chemoradiation. Model performance was good, with an Area under the Curve of 0.86 in the training cohort and 0.82 in the test cohort. The TUBEM6-based risk groups were significantly associated with tube feeding dependence at later time points (p<0.001)., Conclusion: We established an externally validated predictive model for tube feeding dependence after curative radiotherapy or chemoradiation, which can be used to predict TUBEM6.

Background: During a 6-week course of (chemo)radiation many head and neck cancer patients have to endure radiotherapy-induced toxicity, negatively affecting patients' quality of life. Pretreatment counseling combined with self-help exercises could be provided to inform patients and possibly prevent them from having speech, swallowing, and shoulder problems during and after treatment., Objective: Our goal was to investigate the feasibility of a multimodal guided self-help exercise program entitled Head Matters during (chemo)radiation in head and neck cancer patients., Methods: Head and neck cancer patients treated with primary (chemo)radiation or after surgery were asked to perform Head Matters at home. This prophylactic exercise program, offered in three different formats, aims to reduce the risk of developing speech, swallowing, shoulder problems, and a stiff neck. Weekly coaching was provided by a speech and swallowing therapist. Patients filled out a diary to keep track of their exercise activity. To gain insight into possible barriers and facilitators to exercise adherence, reports of weekly coaching sessions were analyzed by 2 coders independently., Results: Of 41 eligible patients, 34 patients were willing to participate (83% uptake). Of participating patients, 21 patients completed the program (64% adherence rate). The majority of participants (58%) had a moderate to high level of exercise performance. Exercise performance level was not significantly associated with age (P=.50), gender (P=.42), tumor subsite (P=1.00) or tumor stage (P=.20), treatment modality (P=.72), or Head Matters format (Web-based or paper) (P=1.00). Based on patients' diaries and weekly coaching sessions, patients' perceived barriers to exercise were a decreased physical condition, treatment-related barriers, emotional problems, lack of motivation, social barriers, and technical problems. Patients' perceived facilitators included an increased physical condition, feeling motivated, and social and technical facilitators., Conclusions: Head Matters, a multimodal guided self-help exercise program is feasible for head and neck cancer patients undergoing (chemo)radiation. Several barriers (decreased physical condition, treatment-related barriers) and facilitators (increased physical condition, feeling motivated) were identified providing directions for future studies. The next step is conducting a study investigating the (cost-)effectiveness of Head Matters on speech, swallowing, shoulder function, and quality of life.

Background and Purpose: To evaluate the course of health-related quality of life (HRQOL) from diagnosis to 2 years follow-up in patients with head and neck cancer (HNSCC) treated with chemoradiation (CRT)., Materials and Methods: 164 patients completed the EORTC QLQ-C30 and QLQ-H&N35 questionnaires 1 week before and 6 weeks and 6, 12, 18, and 24 months after CRT. Patients were compared to a reference group. A linear mixed-model analysis was used to assess changes in HRQOL over time, and whether this was associated with age, gender, comorbidity, and tumor sublocation., Results: Significant differences for the majority of HRQOL scales were observed between patient and reference group at baseline, and follow-up. The course of HRQOL was different for survivors compared to non-survivors. In survivors, improvement over time was observed (in global quality of life, physical, role, and social function, fatigue, pain, swallowing, speech, social eating, and social contacts), while in non-survivors the pattern over time was either no changes in HRQOL or a deterioration (in physical function, social eating and contacts). In both survivors and non-survivors, emotional functioning improved after treatment, but deteriorated in the longer term. Patients with comorbidity reported worse physical function, and patients with oral/oropharyngeal cancer (compared to hypopharyngeal/laryngeal cancer) reported more oral pain and sexual problems, but fewer speech problems., Conclusions: The course of HRQOL of HNSCC patients during the first 2 years after CRT is different for survivors compared to non-survivors and is associated with comorbidity and tumor subsite., (Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.)

The authors prospectively assessed the independent association between weight loss and deterioration in quality of life (QOL) in patients treated by radiotherapy for head and neck cancer. In 533 head and neck cancer patients treated by curative radiotherapy, changes in weight and QOL were assessed between baseline (before radiotherapy) and follow-up (12 wk after the start of radiotherapy). Patients were categorized into 4 weight loss categories: 0%, 0.1%-5.0%, 5.1%-10.0%, and >10% weight loss. The association between weight loss and change in QOL was analyzed by linear regression analysis, adjusted for sociodemographic and tumor-related characteristics, and additionally for disease specific symptoms and tube feeding. Thirty percent of patients lost 0.1%-5.0% weight, 26% lost 5.1%-10.0% weight, and 24% lost >10% weight. Adjusted regression analyses showed a significant association between weight loss and deterioration of global QOL, physical functioning, social functioning, social eating, and social contact. After additional adjustment for disease-specific symptoms and tube feeding, weight loss (>10%) remained significantly associated with global QOL, social eating, and social contact (P < 0.05). More than 10% weight loss during and directly after radiotherapy has a significant impact on social eating, social contact, and QOL in head and neck cancer patients.

Purpose: The purpose of this study is to evaluate computerized monitoring of speech and swallowing outcomes and its impact on quality of life (QoL) and emotional well-being in head and neck cancer patients in an outpatient clinic., Methods: Sixty-seven patients, treated by single or multimodality treatment, completed the EORTC QLQ-C30 and QLQ-H&N35 questionnaires and the Hospital Anxiety and Depression Scale in an outpatient clinic, using a touch screen computer system (OncoQuest), at baseline (at time of diagnosis) and first follow-up (1 month after end of treatment)., Results: Tumor sites included oral cavity (n = 12), oropharynx (n = 18), hypopharynx (n = 8), and larynx (n = 29). Tumor stage included carcinoma in situ (n = 3), stage I (n = 21), stage II (n = 7), stage III (n = 15), and IV (n = 21). No speech or swallowing problems at baseline or follow-up were noted in 23 % (speech) and 41 % (swallowing) of patients. Twenty-one percent (speech) and 19 % (swallowing) had problems at baseline and returned to normal scores at follow-up, while 16 % (speech) and 19 % (swallowing) had normal scores at baseline and developed problems at follow-up. Forty percent (speech) and 21 % (swallowing) had persistent problems from baseline to follow-up. At baseline, speech problems were significantly related to tumor site and emotional distress. At baseline and follow-up, swallowing problems were significantly related to QoL and emotional distress. At follow-up, speech problems were significantly related to QoL, emotional distress, and swallowing problems., Conclusions: Monitoring speech and swallowing problems through OncoQuest in an outpatient clinic is feasible. Many patients report speech and swallowing problems, negatively affecting their QoL and emotional well-being.

Background and Purpose: The purpose of this large multicentre prospective cohort study was to identify which dose volume histogram parameters and pre-treatment factors are most important to predict physician-rated and patient-rated radiation-induced swallowing dysfunction (RISD) in order to develop predictive models for RISD after curative (chemo) radiotherapy ((CH) RT)., Material and Methods: The study population consisted of 354 consecutive head and neck cancer patients treated with (CH) RT. The primary endpoint was grade 2 or more swallowing dysfunction according to the RTOG/EORTC late radiation morbidity scoring criteria at 6 months after (CH) RT. The secondary endpoints were patient-rated swallowing complaints as assessed with the EORTC QLQ-H&N35 questionnaire. To select the most predictive variables a multivariate logistic regression analysis with bootstrapping was used., Results: At 6 months after (CH) RT the bootstrapping procedure revealed that a model based on the mean dose to the superior pharyngeal constrictor muscle (PCM) and mean dose to the supraglottic larynx was most predictive. For the secondary endpoints different predictive models were found: for problems with swallowing liquids the most predictive factors were the mean dose to the supraglottic larynx and radiation technique (3D-CRT versus IMRT). For problems with swallowing soft food the mean dose to the middle PCM, age (18-65 versus >65 years), tumour site (naso/oropharynx versus other sites) and radiation technique (3D-CRT versus IMRT) were the most predictive factors. For problems with swallowing solid food the most predictive factors were the mean dose to the superior PCM, the mean dose to the supraglottic larynx and age (18-65 versus >65 years). And for choking when swallowing the V60 of the oesophageal inlet muscle and the mean dose to the supraglottic larynx were the most predictive factors., Conclusions: Physician-rated and patient-rated RISD in head and neck cancer patients treated with (CH) RT cannot be predicted with univariate relationships between the dose distribution in a single organ at risk and an endpoint. Separate predictive models are needed for different endpoints and factors other than dose volume histogram parameters are important as well., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)