Patient preference for commonly-used, head and neck cancer-specific quality of life questionnaires in the follow-up setting (Determin): A multi-centre randomised controlled trial and mixed methods study.

BACKGROUND: Quality of life (QoL) assessment forms an integral part of modern cancer care and research. The aim of this study is to determine patients' preferences and willingness to complete commonly used head-and-neck cancer (HNC) QoL questionnaires (QLQs) in routine follow-up clinics. METHODS: This is a randomised control trial of 583 subjects from 17 centres during follow-up after treatment for oral, oropharyngeal or laryngeal cancer. Subjects completed three structured validated questionnaires: EORTC QLQ-HN35; FACT-HN and UW-QOL, and an unstructured patient-generated list. The order of questionnaire presentation was randomised, and subjects were stratified by disease site and stage. Patients self-rated the questionnaires they found most helpful to communicate their health concerns to their clinicians. RESULTS: Of the 558 respondents, 82% (457) found QLQs useful to communicate their health concerns to their clinician (OR = 15.76; 95% CI 10.83-22.94). Patients preferred the structured disease-specific instruments (OR 8.79; 95% CI 5.99-12.91), while the open list was the most disliked (OR = 4.25; 95% CI 3.04-5.94). There was no difference in preference by treatment modality. More women preferred the FACT-HN (OR = 3.01, 95% CI 1.05-8.62), and patients under 70 preferred EORTC QLQ-HN35 (OR = 3.14, 95% CI 1.3-7.59). However, only 55% of patients expressed preference to complete questionnaires routinely at the clinic. CONCLUSIONS: Most patients found QLQs helpful during their follow-up and 55% supported routine questionnaires in follow-up clinics. Males and people over 70 years old were the least willing to complete the routine questionnaires and preferred shorter questionnaires (e.g., UW-QOL). Women preferred FACT-HN, and younger patients preferred EORTC QLQ-HN35. Reasons for the reluctance to complete questionnaires require elucidation.

Comparison of quality of life outcomes in a de-intensification treatment regimen for p16 + oropharyngeal cancer.

BACKGROUND: Platinum and taxane-based neoadjuvant chemotherapy with surgery (NAC + S) is a novel de-intensified treatment modality that is currently under investigation. METHODS: All patients treated for HPV positive OPSCC with NAC + S at a single institution between 2006 and 2020 were contacted to complete the University of Washington Quality of life questionnaire (UW-QOL) at least 2 years following the completion of treatment. RESULTS: The UW-QOL surveys were received from 25 of 48 eligible patients (52.1%). The mean follow-up time was 4.3 years (range 2.0-7.6 years). The overall mean score for the physical subscale was 92.4 (Standard deviation, SD = 10.9), and the social-emotional subscale was 91.1 (11.8). Compared to the normative cohort, the NAC + S cohort had a worse appearance (Mean scores Normative vs. NAC + S: 93 vs. 84.0, p = 0.009). CONCLUSION: NAC + S offers favorable long-term QOL, as evidenced by near-normal scores in most QOL domains.

Quality of life after total laryngectomy: impact of different vocal rehabilitation methods in a middle income country.

INTRODUCTION: The impact of advanced laryngeal cancer and its extensive surgical treatments cause significant morbidity for these patients. Total laryngectomy impacts essential functions such as breathing, communication and swallowing, and may influence the quality of life as well as affecting the social life of laryngeal cancer patients. OBJECTIVE: Describe the quality of life and analyze the factors associated with the reduced quality of life in patients who have undergone total laryngectomy. METHOD: Observational cross-sectional study was carried out to evaluate the quality of life of patients who had undergone total laryngectomy due to laryngeal cancer. The fourth version of the UW-QOL Quality of Life Assessment Questionnaire from Washington University, validated for Portuguese, was used. RESULTS: The study population was 95 patients, and the mean composite score of the QOL was 80.4. In the subjective domains the majority of the patients (38.9%) reported they felt much better at present compared to the month before being diagnosed with cancer. When questioned about how they evaluated their health-related quality of life, there was a predominance of those who considered it good (43.2%), and most considered they had a good quality of life (46.3%) considering personal well-being. The overall quality of life was considered good to excellent by 83.2% of the patients. Patients with tracheoesophageal prosthesis reported a better quality of life, compared to patients using an electrolarynx or esophageal voice. CONCLUSION: The high mean value of the composite score for quality of life revealed that the patients assessed their quality of life positively. The absence of vocal emission was the only variable associated with a lower quality of life within the composite score according to the UW-QOL questionnaire.

Cross-cultural and Moroccan Validation of the University of Washington Quality of Life Questionnaire for Patients With Head and Neck Cancer.

OBJECTIVES: To translate the original English version of the University of Washington Quality of Life (UW-QOL) questionnaire into Moroccan Arabic version and investigate its psychometric validity and reliability for Moroccan-speaking patients with head and neck cancer. METHODS: The UW-QOL was conducted in 104 patients treated for head and neck cancer in the department of head and neck surgery, Ibn Rochd university hospital, Casablanca. A control group of 57 healthy volunteers was also evaluated. The questionnaire was translated into Moroccan language. RESULTS: Cronbach's alpha coefficient was 0.829, suggesting good internal consistency, and test-retest reliability was excellent (intraclass correlation coefficient [ICC] = 0.987). A good correlation was observed between UW-QOL composite scores and European Organization for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLQ-C30) global health status/QOL scores (P < .001). There was also low concordance between the UW-QOL scores and the Physical Component Summary and Mental Component Summary scores of the 36-Item Short-Form questionnaire (SF-36) (P = .017 and P = .014, respectively). CONCLUSIONS: The Moroccan UW-QOL questionnaire appears to be culturally appropriate and psychometrically valid.

A single-item screening question for fear of recurrence in head and neck cancer.

Fear of recurrence (FoR) is the most frequent concern patients wish to discuss in head and neck review clinics. The aim of the study was to design a simple screening question on fear of recurrence to be incorporated into the University of Washington Quality of Life Questionnaire (UW-QOLv4), for use in clinical practice. A cross-sectional survey comprising 528 patients was conducted. 11 % selected the two most severe FoR categories. FoR responses correlated strongly (Spearman r s = -0.82) with the mean score of the seven items of the Fear of Recurrence Questionnaire. There was also a strong association with anxiety and mood dysfunction as measured from the UW-QOL, and with overall QOL. Patients more affected by FoR tended to be younger and post-radiotherapy or chemotherapy. The FoR screening question may be a useful addition to the UW-QOLv4 to help identify patients with significant FoR to receive extra support.

Health related quality of life and patient concerns in patients with osteoradionecrosis.

The number of patients presenting with osteoradionecrosis (ORN) is likely to increase in future and health related quality of life (HRQOL) is a key outcome. This study aimed to report patient concerns and HRQOL in an osteoradionecrosis cohort over 12 years. Patients attended routine follow-up clinics between 2008 to 2020, where patient reported outcome (PRO) assessment was used before consultations as standard practice. The two PROs were the Patient Concerns Inventory (PCI) and the University of Washington quality of life questionnaire (UW-QOL v4). The study sample comprised 109 patients with ORN seen in 445 clinics when PCI and UW-QOL were used. At clinic, patients were in one of six ORN states: before ORN (26 with data), at diagnosis (12), and following treatment either improved (27), progressed (46), stable (63) or resolved (37). Worst HRQOL outcomes were reported in the progressive group with 50% reporting overall QOL as less than good. Pain was a major dysfunction (63%) as was physical and social-emotional functioning and this group reported many PCI issues, median (IQR) 7 (4-11). Kaplan-Meier estimates of survival with 95% CI after diagnosis with ORN were 96% (90-99%) at 12 months, 89% (81-94%) at 24 months and 73% (61-82%) at 60 months. This study indicates that ORN is a chronic condition with long-term survivorship consequences. More data through cohort studies and trials are needed to assist in decision making for individual patients.

How much of a problem is too much saliva for patients following head and neck cancer.

The aim of this paper is to report the clinical characteristic of those patients reporting "I have too much saliva" following treatment for head and neck cancer. As a new addition to the saliva question of the University of Washington quality of life questionnaire (UW-QoL), another aim is to make recommendations on how this new option should be scored and handled. Patients treated with curative intent were recruited between April 2017 and October 2019. Assessment was at the first baseline clinic a median (IQR) of 194 (125-249) days after diagnosis and 103 (71-162) days after the end of treatment. Patients completed the modified UW-QoL version 4, the Patient Concerns Inventory (PCI), Distress Thermometer, and the EQ-5D-5L. In 288 patients, saliva was of normal consistency for 80 (28%), less than normal but enough for 57 (20%), too little for 91 (32%), too much for 45 (16%), and there was no saliva at all for 15 (5%). Of patients with too much saliva, two-thirds (31/45, 69%) had tumours located in the oral cavity and 18/40 (45%) had the highest rates of free flap use during surgery. Salivation response was associated strongly with the other measures of health-related quality of life (HRQoL) and the PCI. Of those with too much saliva their results were similar to or worse than those with too little or no saliva at all. In conclusion, having too much saliva is relatively less frequently reported but is an important HRQoL consideration. Its scoring in the UW-QoL should be at a level similar to that of too little saliva.

Long-term quality of life measured by the University of Washington QoL questionnaire (version 4) in patients with oral cancer treated with or without reconstruction with a microvascular free flap.

We used the University of Washington Quality of Life (UW-QoL) questionnaire (version 4) to assess the long-term quality of life (QoL) of patients with oral squamous cell carcinoma treated with or without reconstruction with a microvascular free flap, and all patients with T2-T4 oral squamous cell carcinoma (SCC) treated in this way were eligible for the study. A total of 139 patients' personal details, medical history, and QoL scores were collected and analysed. The mean (SD) overall QoL score was 73.09 (14.8) for patients with T2-T4 oral SCC. The mean (SD) global QoL scores of patients who had had reconstructions was 75.68 (13.85) and of patients who had not 71.00 (15.34) (t=1.864, df=137, p=0.064). Univariate and multivariate analyses indicated that site of tumour, T stage, and the need for postoperative radiotherapy had significant effects on the global QoL scores. Among patients with T2 oral SCC there was no significant difference between patients who did and did not have reconstructions. However, there were significant differences among patients with T3/T4 SCC in scores for appearance, recreation, mood, anxiety, chewing, swallowing, and speech depending on whether they did or did not have reconstructions. There were significant differences in the domains recreation, chewing, speech, and taste, depending on the primary site of the tumour. We conclude that reconstruction with a microvascular free flap had a beneficial effect on the treatment of SCC and improved the QoL of patients with oral SCC.

Outcomes by area of residence deprivation in a cohort of oral cancer patients: Survival, health-related quality of life, and place of death.

OBJECTIVES: Oral cancer patients from lower socio-economic backgrounds have worse outcomes of survival and health related quality of life. The mechanism of cause is not fully understood. The purpose of the paper is to report treatment selection, survival, health related quality of life, cause and place of death in relation to deprivation status. MATERIALS AND METHODS: 553 patients treated for oral cancer between 2008 and 2012 were identified from records at University hospital. Mortality was tracked via the Office of National Statistics (ONS) and health-related quality of life was measured using the University Washington quality of life questionnaire (UW-QoLv4). Postcodes of residence at diagnosis were used to obtain index of multiple deprivation (IMD) 2010 scores. RESULTS: Nearly half of the sample (47%) lived in the 'most deprived' IMD 2010 quartile of residential areas in England and such patients when treated with curative intent using surgery with or without adjuvant radiotherapy had worse survival than patients living elsewhere, p=0.01 after adjusting for pathological staging and age group. There were no notable differences by IMD group in cancer being mentioned anywhere in part 1 or part 2 of the death certificate or in place of death. After adjustment for patient and clinical factors patients residing in more deprived areas had worse quality of life outcomes in regard to social-emotional functioning and overall quality of life but not in regard to physical oral function. CONCLUSION: Addressing inequalities in health care related to deprivation is a priority for patients with oral cancer.

Influence of deprivation on health-related quality of life of patients with cancer of the head and neck in Merseyside and Cheshire.

The incidence of cancer of the head and neck, and the outcome of treatment in terms of survival and health-related quality of life (HRQoL), is linked to deprivation. We have explored the association of social deprivation with HRQoL and with fear of recurrence in patients treated for cancer of the head and neck in Merseyside and Cheshire. In 2013, we posted cross-sectional surveys to 805 patients treated for oral, oropharyngeal, or laryngeal tumours. We used the University of Washington quality of life score (UW-QoLv4) to measure HRQoL, a 7-item questionnaire to measure fear of recurrence, and the 2010 Index of Multiple Deprivation (IMD) to measure deprivation. There was a 60% (448) response to the survey, with response ranging from 52% (167/322) from those living in the most deprived national quartile of residential areas to 74% (110/148) living in the least deprived quartile. Relative to the national distribution, the sample was notably deprived as 37% (167/448) lived in the most deprived quartile. After adjusting for clinical and personal characteristics, the results suggest a residual association between deprivation and overall quality of life (QoL), particularly socioemotional function. The association seemed weaker in regard to fear of recurrence and physical function. Our findings emphasise the need to explore ways to encourage more patients to attend follow-up appointments as this might improve their QoL, reduce distress, and help them to improve their life-style. It could also have an impact on survival.

How will I be after my operation for oral cancer?

Validated health-related quality of life measures for patients with oral cancer have been available for over a decade. We used the Liverpool head and neck cancer database to identify 1060 patients who had curative operations for primary squamous cell carcinoma of the head and neck at the regional maxillofacial unit between 1995 and 2010. We then produced one-page summary tables for subsites of oral cancer by stage and common treatments based on patient-reported outcomes from the University of Washington quality of life (UWQoL) head and neck cancer questionnaire. Data had been collected in a series of annual surveys. Sites included were buccal and retromolar (n=189), oral tongue (n=358), floor of the mouth (n=321), and other oral sites (n=192). A total of 633 patients completed at least one questionnaire (total 1931) between 9 and 60 months after treatment (71% of those alive at 9 months). Only questionnaires completed around 2 years from diagnosis or operation were analysed. Data include crude survival at 1, 2, and 5 years, the 12 UWQoL domains, which comprise the number of patients who chose the best 2 responses for each, overall health-related QoL, and the number who chose the worst responses (based on an algorithm). The data are sufficiently detailed to be used in discussions with patients about likely outcomes. They can help patients to make decisions about the type of treatment, provide a reference for realistic expectations, and enable them to be better informed when they give their consent.

Longitudinal evaluation of health-related quality of life after osteoradionecrosis of the mandible.

There is a lack of longitudinal data on the effect of osteoradionecrosis (ORN) on health-related quality of life (HRQoL). We report data on HRQoL across groups of patients with ORN at different stages of disease and reconstruction. We identified 71 patients treated for ORN of the mandible, and cross-referenced the data with their medical records. They were divided into 4 groups according to the Notani classification and patients who did not have ORN were used for comparison. Patients with ORN reported the most pain, and rates were relatively high for problems concerning appearance, activity, recreation, swallowing, and chewing. There were significant differences for pain, appearance, swallowing, and chewing between patients who had ORN and those who did not and had not had radiotherapy. On the University of Washington quality of life questionnaire (UWQoL), patients with ORN reported similar levels of morbidity to those who had had radiotherapy but did not have ORN, particularly on the physical and social-emotional subscales. Those with grade III ORN were particularly affected, and the UWQoL scores after mandibular resection and reconstruction were disappointing. HRQoL after composite resection for Notani grade III disease is relatively poor. In patients whose symptoms can be managed without an operation, it seems appropriate to defer resection and reconstruction until there is an appreciable drop in the quality of life, and pain is difficult to control.

Comparison of quality-of-life in tongue cancer patients undergoing tongue reconstruction with lateral upper arm free flap and radial forearm free flap.

Surgery entails radical resection, neck dissection and tongue reconstruction has been commonly used in treatment of T2 and T3 tongue squamous cell carcinoma. Although lateral upper arm free flap (LUFF) and radial forearm free flap (RFFF) are similar in texture and thickness, significant differences can be noticed in the donor-site function and surgical demands. In the treatment of T2 and T3 tongue cancer, the choice of either LUFF or RFFF is still not defined.We aim to investigatethe long-term QOL of patients with moderate tongue defect and reconstruction with LUFF or RFFF, based on which to provide clinical suggestion for tongue reconstructions.Sixty-five patients (T2 or T3 stage, 42 underwent tongue reconstruction with RFFF and 23 with LUFF) treated at the Department of Oral and Maxillofacial Surgery, Hospital of Stomatology, Sun Yat-Sen University from January 2005 to June 2009 were included. The QOL of each patient was determined using the questionnaire designed based on the University of Washington Quality-of-Life (UW-QOL, version 4). The questionnaire was accomplished by a qualified medical staff blinded to the study after telephone communication with each patient. Statistical analysis showed that no significant difference was noticed in the long-term QOL of patients with tongue cancer after tongue reconstruction using LUFF or RFFF, respectively, indicating that similar QOLs were obtained in the long-term follow-up of patients with tongue cancer (T2 or T3 stages) using LUFF and RFFF for reconstruction.

Evaluation of the life quality of the patients with oral cancer / 实用口腔医学杂志

Objective: To evaluate the life quality of the patients with oral cancer. Methods: A questionnaire survey was conducted on 200 patients with oral cancer who met the inclusion criteria by the Chinese version of the University of Washington Quality of Life Questionnaire (UW-QOL, V4. 0) . The data were statistically analyzed by SPSS 20. 0. Results: A total of 200 questionnaires were issued and 145 valid questionnaires (72. 50％) were returned. The scores of somatic function domain and social emotional health domain were 60. 29 ± 15. 62 and 46. 65 ± 23. 21 respectively (P ＜ 0. 05) . Physical health scores and social emotional health scores were positively correlated (r = 0. 584) . Conclusion: Oral cancer patients have poor social and psychological status. Necessary psychological intervention and clinical intervention are of great significance to improve the life quality of the patients. Strengthening of social support can improve their physical health of the patients.

Assessment of quality of life and sociocultural aspects in patients with ameloblastoma after immediate mandibular reconstruction with a fibular free flap.

Our aim was to evaluate the quality of life (QoL) in patients with ameloblastoma who had been treated by immediate mandibular reconstruction with a fibular free flap, and to analyse the association between QoL and their sociocultural and medical characteristics. We assessed the QoL outcomes of 33/45 patients using the University of Washington quality of life (UW-QoL) questionnaire and the 14-item Oral Health Impact Profile (OHIP-14). Thirty-three of the 45 questionnaires were returned (73%). In the UW-QoL the best-scoring domain was "shoulder", whereas the lowest scores were for "chewing" and "activity". In the OHIP-14 the lowest-scoring domain was "handicap", followed by "social disability" and "psychological discomfort". Mandibular reconstruction with a fibular free flap significantly influenced the patients' QoL and oral function. Their sociocultural data showed that most patients had a fairly low level of education.

Development of the Greek version of the University of Washington quality of life questionnaire for patients with head and neck cancer.

The University of Washington quality of life (UW-QOL) questionnaire, created in 1993 to evaluate health related quality of life, has been widely used in English-speaking populations and translated and validated in other languages. The aim of the present study was to carefully translate and psychometrically validate the UW-QOL questionnaire in Greek. The revised version of the questionnaire was obtained by forward and backward translation of the original English version, according to internationally accepted guidelines. Validation was performed in 120 patients with head and neck cancer treated in a Greek Anticancer Institute in Athens, during their follow-up visits. Eligible patients completed the Greek version of the questionnaire and two other previously validated quality of life questionnaires (EORTC QLQ H&N35 and C-30). Related data and the patients' demographics were extracted from the patient's notes. Strong internal consistency (mean Cronbach α value of 0.83) was shown, with good construct validity. Statistically significant differences were noted between tumour staging and treatment modality and global quality of life. Strong correlation was shown between previously validated EORTC questionnaires and the translated UW-QOL questionnaire. In conclusion, the Greek version of the UW-QOL questionnaire appears to be culturally appropriate and psychometrically valid.

What patients consider important: temporal variations by early and late stage oral, oropharyngeal and laryngeal subsites.

Functional outcomes are of high priority to cancer patients and are relevant when considering treatment strategies. This study aimed to collate and analyse importance rankings of UW-QOL over time for patients treated with curative intent for primary head and neck squamous cell carcinoma between 2000 and 2010, and to compare early and late stage oral, oropharyngeal and laryngeal subsites. There were 1614 patients comprising oral cavity 47% (751), oropharyngeal 24% (382), laryngeal 20% (320) and other HNC locations 10% (161). Items of importance remained relatively stable within clinical groups but there were notable differences between groups. For patients with early oral tumours no domain was especially dominant, whereas for late oral tumours swallowing, chewing, speech and saliva were selected more often. Swallowing and saliva were more important in oropharyngeal tumours, as was taste with more advanced oropharyngeal tumours. Speech and activity were important for those with early laryngeal tumours, as were swallowing and speech for more advanced laryngeal tumours. Swallowing and saliva were more important in advanced tumours for all sites. This data confirms the priority patients place on swallowing, chewing, speech, and saliva, therefore curative treatments should optimise these functions wherever possible and provide access to post-treatment interventions as required.

Prospective evaluation of the quality of life of oral tongue cancer patients before and after the treatment.

BACKGROUND: This prospective study was to evaluate the changes in quality of life (QOL) after 12 months post treatment from their pre-treatment levels, using specific questionnaires of well-known acceptability, responsiveness, and validity, with special emphasis on domains such as chewing, swallowing, speech, psychological aspects (mood and anxiety) and pain. METHODS: This prospective analytical study included a total of 72 patients affected by oral tongue cancer (T1-2N0M0) who underwent treatment [wide local excision with selective + radiotherapy (RT)] from 2009 to 2012 at the Department of Oncosurgery and Otorhinolaryngology-Head and Neck Surgery, Sir Ganga Ram Hospital, New Delhi. RESULTS: A total of 39 (54.2%) patients were eligible for the study. Death occurred in 12 patients, four patients had disease recurrence and 17 patients lost to follow up. QOL in five domains was improved, there was significant improvement in pain scores [mean difference (-)17.94], overall activity of the patient was significantly improved (-13.46), recreational activities were also significantly improved (-8.33) and mental status of patient which included the mood and anxiety level were also significantly improved (-13.71 and -11.53) respectively. In seven domains which included the appearance of the patient (32.05), swallowing (16.41), chewing (24.35), speech (29.48), shoulder pain and discomfort (6.92), taste (35.12) and saliva production scores (20.51) were significantly worse. CONCLUSIONS: By our study we can strongly recommend that oral tongue cancers if diagnosed at early stages and without any neck node (T1-2N0M0) can be easily managed without compromising the QOL of the patients significantly.

Translation and validation of the Filipino version of the University of Washington Quality of Life Questionnaire (UW-QOL) for patients with head and neck cancer

Objective@#To translate the University of Washington Quality of Life (UW-QOL) questionnaire into Filipino and to validate it among a sample of patients with head and neck cancer. @*Methods@#Design: Cross-sectional study. Setting: Tertiary Government Training Hospital. Participants: 33 patients.@*Results@#A total of 33 patients were recruited in this study. Eighteen (54.5%) were male, and 15 (45.5%) were female aged 24-79 years old (mean age 52.85 ± 11.81 years old) completed the study. All items in the Filipino translation of the UW-QOL had a content validity index. The raters in face validation had 100% agreement in almost all items except for the appropriateness of font size and space of the questionnaire. The Cronbach’s alpha of the Filipino version of the questionnaire was 0.8596. The alpha score when each of the items was deleted remained within the range of 0.83 – 0.86. The intraclass correlation coefficients of all items were greater than 0.9. For all items, there were no significant difference observed between the test and retest scores. @*Conclusion@#This study showed that the Filipino translation of the UW-QOL is culturally adapted, internally consistent and stable. It is as reliable as the original English version in assessing health related QOL, and valid for assessing HR-QOL among patients with head and neck cancers.