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Translation and validation of the MD Anderson Dysphagia Inventory (MDADI) for Spanish‐speaking patients
Abstract
Background
The main objective of this study was to perform the adaptation and cultural translation and validation of the MD Anderson Dysphagia Inventory (MDADI) questionnaire for the Spanish language.
Methods
A total of 69 patients were diagnosed with head and neck cancer treated with surgery; radiotherapy and chemoradiotherapy were included. MDADI was translated and a feasibility, internal consistency, test‐retest reliability, and construct validity were assessed.
Results
The mean overall score of the MDADI was 51.9 (18‐85). Internal consistency for total score was 0.908. The overall score of intraclass correlation coefficient was 0.98 and kappa coefficient scores were almost perfect (test‐retest reliability). All domains of MDADI were significantly correlated with physical and mental domains of the SF‐12. Construct validity was also evaluated with food texture measures, and with TNM classification.
Conclusion
The translation and validation of the Spanish version of the MDADI was performed and can be considered an important patient‐reported outcomes tool for dysphagia‐related quality of life.
... The M. D. Anderson Dysphagia Inventory (MDADI) is one such tool that has been validated in multiple languages and was developed for use in HNC patients [9]. The MDADI, is the first to specifically assess dysphagia in head and neck cancer patients and has also been widely translated into Spanish, Swedish, Chinese, Portuguese, and Danish among others [10][11][12][13][14][15][16][17][18]. It was also validated in European French by Lechien et al. [19]. ...
... The MDADI-CF was developed with a rigorous translationback-translation method, which has been described as an appropriate technique for study instrument translation and validation, and is widely accepted in the literature [10,20,[23][24][25]. A translation agency with no affiliation to the clinical environment or the authors was employed (www. ...
... Feasibility, internal consistency, floor and ceiling effects, construct validity, and test-retest reliability of the MDADI-CF were assessed. Feasibility was evaluated according to the percentage of missing answers [10]. Internal consistency was investigated for each of the four subdomains and the overall composite MDADI score using Cronbach's alpha coefficient. ...
The MDADI is a validated tool for assessing quality of life in several languages, often used for patients with head and neck cancer (HNC). It has never been translated and validated in Canadian French, which bears significantly different linguistic characteristics compared to European French. Our objective was to validate a Canadian French version of the MDADI (MDADI-CF) for HNC patients suffering from dysphagia. The MDADI-CF was developed using the translation-back-translation method. Participants were recruited from an outpatient clinic: those suffering from dysphagia secondary to HNC comprised the experimental group, while those without dysphagia comprised the control group. They were asked to complete the MDADI-CF and the SWAL-QoL, another similar questionnaire on dysphagia which has been validated in French. A subgroup of patients also received a second MDADI-CF to complete one week later. Feasibility, internal consistency, construct validity, and test–retest reliability were all assessed. 93% of patients completed the questionnaire without leaving any questions blank. Internal consistency analyses demonstrated a Cronbach’s alpha > 0.7 for all subscales of the questionnaire. Convergent validity was confirmed with a high correlation between the MDADI-CF scores and French SWAL-QOL (0.91, p < 0.0001). Discriminant validity was also demonstrated by the significant difference between MDADI-CF scores of patient vs control group (93.3 vs 62.4, p < 0.0001). Test–retest reliability was demonstrated with an intraclass correlation coefficient of 0.918 on the total score between the first and second questionnaire completion. Our results demonstrate that the MDADI-CF I is valid and should be used in evaluating dysphagia in the Canadian Francophone population.
... It can manifest before, during, and after radiotherapy. 9,10 Moreover, the clinical phenotypes of dysphagia (chewing difficulties, nasal regurgitation, oral retention of food bolus, and choking) and its complications (malnutrition and aspiration pneumonia) have a significant impact on the health and QOL of these patients. 8,10 The World Health Organization (WHO) defines QOL as "individuals' understanding of their position in life within their culture and value systems concerning their expectations, goals, concerns, and standards" 11,12 . ...
... The functional subdomain illustrates how the daily activities of the patient are affected by the swallowing disorder, and the physical subdomain indicates the perception of the patient of the swallowing disorder. 9,10,15 The MDADI is scored on a 5-point Likert scale: 1. strongly agree; 2. agree;3. no opinion; 4. Disagree; and 5. firmly disagree. ...
... Similarly, the MDADI-P exhibited divergent validity for the emotional (0.367) and functional (0.327) subdomains, as observed in the original MDADI. 2 The correlations of all subscales of the MDADI-P with the mental and physical subdomains of SF-36 were weak to moderate, similar to the findings of the Swedish, Spanish, and Brazilian versions. 7,9,14 The correlations between the subscales of MDADI-P and the physical components of the SF-36 ranged from 0.222 to 0.413, while the correlations between the mental components of the MDADI-P ranged from 0.179 to 0.359. Additionally, similar to the Spanish versions of the MDADI, the correlations between the physical and mental subdomains of the SF-12 with the subscales of the MDADI were between 0.314 and 0.495, and 0.391 and 0.503, respectively. ...
Introduction Dysphagia is a common issue in patients with head and neck cancer (HNC) and is known to negatively impact their quality of life. To evaluate the impact of dysphagia on the quality of life of HNC patients, the M. D. Anderson Dysphagia Inventory (MDADI) questionnaire was developed.
Objective The present study aimed to culturally adapt and validate the MDADI for Persian-speaking individuals. The MDADI is a self-administered questionnaire designed to assess the impact of dysphagia on the quality of life of HNC patients.
Methods The original MDADI questionnaire was translated into Persian using the forward-backward method, following the guidelines of the World Health Organization (WHO) for cultural adaptation. The content validity of the Persian version, MDADI-P, was assessed by 10 speech-language pathologists using the content validity index (CVI). Seventy-five HNC patients completed the MDADI-P to evaluate its convergent validity, which was determined by comparing the results with the Short-Form 36 (SF-36) questionnaire. Internal consistency and test-retest reliability were assessed using Cronbach α coefficient and intraclass correlation (ICC), respectively.
Results The scale content validity index (S-CVI) for the MDADI-P was 0.90, indicating good content validity. The MDADI-P demonstrated satisfactory internal consistency (Cronbach α coefficient = 0.728) and test-retest reliability (ICC = 0.91). The total MDADI-P score exhibited a significant correlation with the physical and mental components of the SF-36 (0.456 and 0.349, respectively, p < 0.05).
Conclusion The findings of the present study confirm the suitability of the MDADI-P in terms of content validity, construct validity, internal consistency, and test-retest reliability.
... We used the MD Anderson Dysphagia Inventory, which is validated in the Spanish head and neck cancer population. 10 Chen et al. published this selfadministered, psychometrically validated and reliable questionnaire in 2001. 11 It has 20 items divided into 4 domains: the global domain (1 item) that summarises the overall QoL aspects related to swallowing; the emotional domain (6 items) that measures the emotional response to dysphagia; the functional domain (5 items) that evaluates the effect of dysphagia in daily activity; and the physical domain (8 items) that indicates the self-perception of swallowing difficulties. ...
... 11 It has 20 items divided into 4 domains: the global domain (1 item) that summarises the overall QoL aspects related to swallowing; the emotional domain (6 items) that measures the emotional response to dysphagia; the functional domain (5 items) that evaluates the effect of dysphagia in daily activity; and the physical domain (8 items) that indicates the self-perception of swallowing difficulties. 10 Each item scores from 1 (strongly agree) to 5 (strongly disagree) while the global domain is shown separately. The composite score is obtained by adding the score of the last 3 domains, calculating their mean and multiplying this by 20. ...
... So, the composite score ranges from 20 (extremely low functioning) to 100 (high functioning). 10 A score of 80 or more indicates minimal or no swallowing problems 12 ( Figure 2). Hutcheson et al. demonstrated that the composite score shows less variability and a more consistent performance across clinical anchors of swallowing function. ...
Objective
Oropharyngeal dysphagia is caused by difficulty in bolus preparation and transport from the mouth to the oesophagus; this may result in malnutrition and aspiration pneumonia. It has a high prevalence in head and neck cancer patients. The objective of this study is to reduce these complications using a new protocol of diagnosis and evaluation of oropharyngeal dysphagia.
Method
This is a prospective study developed in a secondary hospital. All patients diagnosed with head and neck cancer in 2021 and 2022 are subjected to this protocol: an oropharyngeal dysphagia screening test, a swallowing-related quality of life questionnaire and a flexible endoscopic evaluation of swallow.
Results
A total of 72 evaluations are reported using this protocol, before and after cancer treatment, and only 1 presents with aspiration pneumonia.
Conclusion
Using this protocol, the incidence of aspiration pneumonia can be reduced, and diet recommendations can be given earlier in order to maintain a patient's nutritional requirements.
... Since its foundation, it has been widely incorporated as an integral outcome of interest in various clinical trials in patients with HNSCC [9]. The MDADI has been successfully adapted and depicted to be a psychometrically valid and reliable instrument of dysphagia-related QOL in various Asian [10,11], European [12][13][14][15][16], and Latin American [17] languages. Nonetheless, to date, an Arabic version of the MDADI has not been developed yet to assess the dysphagia-related QOL in Arabic-speaking HNSCC patients. ...
... The E7 'I do not feel self-conscious when I eat' and F2 'I feel free to go out to eat with my friends, neighbors, and relatives' statements are scored in the opposite direction, in which the response of 'strongly disagree' denotes a poorer score and is graded as one point, whereas the response 'strongly agree' denotes a better score and is graded as five points. These two items E7 and F2 can be perplexing to research participants [12], and several previous validation studies modified these statements from a grammatical point of view [15,17] as we have done so in our study, in order to prevent the confusion of research participants. We modified E7 and F2 statements to 'I feel self-conscious when I eat' and 'I do not feel free to go out to eat with my friends, neighbors, and relatives', respectively. ...
... Feasibility was assessed based on the percentage of HNSCC patients with no missing item not answered in the survey [15]. ...
Dysphagia is a common adverse event among head and neck (H&N) cancer patients. We aimed, for the first time, to validate the Arabic version of the MD Anderson Dysphagia Inventory (MDADI) among 82 Saudi Arabian patients with H&N cancer. We followed established validation guidelines and translated the 20-item MDADI using the forward–backward method. Our results revealed 100% feasibility. Test–retest reliability demonstrated acceptable interclass correlation coefficients (ICC) for the subscale domains (emotional = 0.973, physical = 0.971, and functional = 0.956) and composite score (ICC = 0.984). The Cronbach’s alpha coefficients for the emotional, functional, and physical subscales were 0.937, 0.825, and 0.945, respectively (composite score = 0.975). We confirmed concurrent validity by demonstrating significant correlations between the domains of the Arabic MDADI and European Organization for Research and Treatment of Cancer (EORTC) Quality-of-Life Head and Neck Module (QLQ-H&N35). Our study validated the Arabic version of the MDADI among H&N cancer patients from Saudi Arabia.
... Furthermore, the perspectives of healthcare personnel and dysphagia clinicians' emphasizing the physiological outcomes of the disorder, may deviate significantly from the patients' perspectives on living with the disorder [15], indicating a need for the development of disease-specific HRQoL instruments. In recent years, dysphagia-related questionnaires have been developed to assess the impact of the complication on patients' lives [16]. In addition, patients' self-reports, especially QOL questionnaires, have played important roles in improving treatment and therapeutic outcomes [17]. ...
... Of these, 14,428 were directly excluded for not meeting the eligibility criteria. Full-text articles were accessed for the remaining 190 articles, of which 29 articles [14,16,23, met all inclusion criteria. All available literatures written in English up to 24 August 2020 were included. ...
... Twenty-nine studies were finally deemed eligible [14,16,23,, including 30 questionnaires. The number of participants per study ranged from 34 to 520. ...
Dysphagia can have devastating and long-lasting effects on the patient’s health-related quality of life (HRQoL). In recent years, a number of questionnaires for the evaluation of the HRQoL of patients with dysphagia have been developed and have been adapted for use in different countries and cultures. However, problems may arise in the process of cultural adaptation and validation, which can affect the quality of the questionnaires and their measurements. This study was conducted to systematically summarize the cultural adaptation and validation of questionnaires for the evaluation of dysphagia-related HRQoL in different countries, assessing the varieties, measurement properties, and qualities of these questionnaires, with the aim of identifying the status of their adaptation and validation and ways in which they might be improved. Four databases were searched, and relevant articles were screened, with data from eligible reports extracted and reviewed. The methodological quality of the included articles was evaluated using the QualSyst critical appraisal tool. The HRQoL questionnaires for patients with dysphagia were assessed using the quality criteria for the measurement properties of health status questionnaires proposed by Terwee et al. and Timmerman et al. 29 studies published between 2008 and 2020 were included. The questionnaires described in these 29 studies were translated into 19 languages and culturally adapted to 21 countries. The adapted questionnaires were based on the Swallowing quality of life questionnaire (SWAL-QOL) by Mchorney et al., the Dysphagia Handicap Index (DHI) by Silbergleit et al., the M.D. Anderson Dysphagia Inventory (MDADI) by Chen et al., and the Eating Assessment Tool-10 (EAT-10) by Belafsky et al. It was found that the questionnaires were reliable and valid instruments for the assessment of dysphagia-related HRQoL, but the quality criteria for cultural adaptation and validation were not strictly followed, especially in the categories of criterion validity, agreement, responsiveness, and interpretability. In conclusion, although the questionnaires were found to be both reliable and valid, the quality criteria should be considered and strictly followed in the cultural adaptation and validation process in the future.
... The MDADI has been adapted and found to be a psychometrically valid and reliable measure of swallowing-related quality of life in multiple European and Asian languages. [11][12][13][14][15][16][17] Although 12% of all new cases of head and neck cancers worldwide are from Chinese-speaking regions in east and south-east Asia, 18 a Chinese version of the MDADI has not yet been developed to measure swallowing-related quality of life in Chinese head and neck cancer survivors. ...
... Previous studies have suggested that these items can be confusing to respondents. 13 In keeping with other MDADI validation studies, 16,17 we amended these questions grammatically in our study (E7, "I feel self-conscious when I eat"; F2, "I do not feel free to go out to eat with my friends, neighbors, and relatives" to avoid respondent confusion. ...
... A score of eight or above on each subscale signifies possible depression or anxiety 25 . In this study, HADS subscale scores were interpreted in two categories: no mood disorder (score of 0-7) and possible mood disorder (score of [8][9][10][11][12][13][14][15][16][17][18][19][20][21]. The English and Chinese 26 versions that were psychometrically validated in the Singapore population 27 were used in this study. ...
Aims
Patient‐reported outcome measures are important in assessing the impact of dysphagia on quality of life. Our aim was to adapt and examine the cultural validity and reliability of a swallowing‐related quality of life measure, the MD Anderson Dysphagia Inventory (MDADI), in English and Chinese, with head and neck cancer patients.
Methods
We adapted the MDADI to Chinese through formal forward‐backward translation. Sixty‐six head and neck cancer survivors completed the MDADI, Swallowing Quality of Life (SWAL‐QOL) questionnaire and Hospital Anxiety and Depression Scale (HADS) in English or Chinese. Swallowing status was scored on the Functional Oral Intake Scale (FOIS). Seventy‐four percent (n = 49) of participants completed a repeat administration of the MDADI for test–retest reliability analysis.
Results
The MDADI showed high internal consistency reliability (Cronbach's α , 0.82 ≤ α ≤ 0.94), and test–retest reliability in both English (intraclass correlation coefficient, ICC = 0.81) and Chinese (ICC = 0.72). Criterion validity was established through moderate to strong correlations with relevant SWAL‐QOL domains. Convergent validity was determined by significant correlations to the HADS and FOIS. Divergent validity was determined by nonsignificant association to the SWAL‐QOL Sleep domain. The MDADI also presented as hypothesised to most known‐group theoretical constructs.
Conclusions
The MDADI showed good psychometric properties in English and Chinese. This avails a reliable and psychometrically valid MDADI for Chinese speakers.
... MDADI is a valid clinical tool for patients with neurologic swallowing disturbances and head and neck cancer, exhibiting adequate internal consistency, reliability, and discriminative validity [9,10]. MDADI has been translated and validated in Spanish [11], Dutch [12], Italian [13], Swedish [10], Korean [14], and Japanese [15]. Nowadays, there is no validated French version of MDADI available for use in French-speaking countries, which include more than 400 million inhabitants. ...
... The initial version of MDADI has been developed to assess dysphagia's effects on the quality of life of patients with head and neck cancer [9]. From the initial U.S. version, the MDADI was adapted and validated in Spanish [11], Dutch [12], Italian [13], Korean [14], and Japanese [15]. ...
... In this paper, we proposed a French version of MDADI, which appears to be reliable and valid in the assessment of the dysphagia and the detection of aspirations in Frenchspeaking patients. The internal consistency of Fr-MDADI (0.86) was comparable with the internal consistencies of the other versions, which ranged from 0.78 to 0.92 [11][12][13][14][15]. The test-retest reliabilities of Fr-MDADI were 0.849 and 0.848 for composite and global scores, respectively. ...
Objective
To assess the internal consistency, reliability, and clinical validity of a French version of the M.D. Anderson Dysphagia Inventory (Fr-MDADI).Methods
Patients addressed in the Swallowing Clinics of CHU Saint-Pierre Hospital (Brussels) and EpiCURA hospital (Ath, Belgium) for dysphagia completed Fr-MDADI, eating assessment tool-10 (EAT-10), dysphagia handicap index (DHI), and benefited from fiberoptic endoscopic evaluation of swallowing (FEES) and videofluoroscopy. Seventy-two asymptomatic individuals composed the control group. The reliability of Fr-MDADI was assessed through a test–retest procedure. The validity was assessed by comparing Fr-MDADI with EAT-10 scores. Normative value of Fr-MDADI was calculated through the receiver operating characteristic (ROC) curve.ResultsForty-two patients and 77 healthy individuals completed the evaluations (33 males). The main etiology of dysphagia was head and neck cancers. The internal consistency was high regarding the Cronbach’s alpha (0.864). The test–retest reliability was high for Fr-MDADI total scores (rs = 0.849). The Fr-MDADI emotional, functional and physical subscores, and the total score exhibited high positive correlations with EAT-10 (rs = 0.770) and DHI (rs = 0.811), exhibiting high external validity. Patients had significant higher item and total score of Fr-MDADI compared with healthy individuals (control group), which indicated an adequate internal validity. About normative data, a Fr-MDADI > 13 was considered to be reflective of abnormalities. The ‘swallowing-induced cough’ item of the Fr-MDADI was significantly associated with the occurrence of aspirations regarding objective examinations (FEES or videofluoroscopy; p = 0.001).Conclusion
The Fr-MDADI is a reliable and valid self-administered tool in the evaluation of the dysphagia of French-speaking patients.
... On the other hand, structural changes exhibit a more progressive onset, and the patient reports greater difficulty with solid foods. It is essential to use clinical scales that assess the subjective symptoms of the patient to monitor the symptoms such as Validity and Reliability of the Eating Assessment Tool (EAT-10) and the M.D. Anderson Dysphagia inventory (MDADI) [43]. In addition, all patients should have a nutritional assessment, a phono-audiology assessment, evaluation of voice quality and respiratory physiology, as well as a complete examination of cranial nerves V, VII, IX, X, and XII. ...
... Moreover, the measurement of quality of life is an important feature to guide therapeutic decisionmaking in clinical practice [25]. Questionnaires can be used to assess dysphagia in these patients, and some of them are validated in the Spanish Language such as Swallowing Quality of Life questionnaire (SWAL-QOL), the MD Anderson Dysphagia Inventory (MDADI), Dysphagia Handicap Index (DHI), and the Eating Assessment Tool (EAT-10) [43,45]. Several studies suggest that quality of life can be compromised by dysphagia following the administration of CT and RT in the head and neck region [47,48]. ...
Head and neck cancer accounts for 2.8% of all cancers and a large proportion of these patients have a locally advanced stage of the disease, for which chemotherapy and radiation therapy are potentially curative treatments. Dysphagia is one of the most common chemoradiotherapy-related side effects in head and neck cancer since it can lead to life-threatening complications. Reports from the current literature suggest better swallowing outcomes with intensity-modulated radiotherapy (IMRT) compared to three-dimensional conformal radiotherapy (3DCT). However, in low-/middle-income countries, multiple healthcare access barriers to 3DCT that may lead to higher rates of chemo/radiotherapy related adverse events. This narrative review provides a comprehensive appraisal of published peer-reviewed data, as well as a description of the clinical practice in an otolaryngology referral center in Colombia, a low-income country.
... The spanish versions of both questionnaires were used in this study. Their reliability and validity has been verified in previous studies [12,13]. ...
... The composite subscale (CS) is a weighted average of the previously described subscales. The mean score of each subgroup is multiplied by 20 to obtain a score between 20, extremely low functioning, and 100, high functioning [13,16]. ...
Purpose
The aim of this study was to determine the prevalence of dysphagia in patients with cerebellar ataxia, neuropathy and vestibular areflexia syndrome (CANVAS), characterizing this condition, both in its objective dimension and in terms of quality of life (QoL).
Methods
A cross-sectional study was developed in 11 patients diagnosed of CANVAS. In all patients, clinical records were reviewed and the Eating assessment tool 10 (EAT-10) was performed as screening of oropharyngeal dysphagia. To evaluate the QoL impairment secondary to dysphagia, we applied the swallowing quality of life questionnaire (SWAL-QOL) and the MD Anderson Dysphagia Inventory (MDADI). To evaluate the deglutition mechanisms impaired, two objective-instrumental studies were performed: the volume-viscosity swallow test (V-VST) and the fiberoptic endoscopic evaluation of swallowing (FEES).
Results
82% of the patients presented an abnormal EAT-10 score. A correlation was found between the EAT-10 and MDADI and between both QoL questionnaires. After the FEES and V-VST analysis, all 11 patients presented some degree of swallow effectiveness impairment, and most of them safety alterations as well.
Conclusion
CANVAS remains an underestimated and underdiagnosed condition and the prevalence of swallowing disorders in those patients is higher than expected. Despite the possibility that EAT-10 works as a useful screening test to predict the results in the QoL questionnaires, the absence of correlation between QoL test and instrumental results suggests that to properly evaluate the patients swallowing status, objective instrumental procedures must be conducted.
... (1) The Standardized Swallowing Assessment (SSA) [12] and the M.D. Anderson Dysphagia Inventory (MDADI) [13] were used to evaluate the swallowing function of both groups before and after treatment. The SSA scale has a total score ranging from 18 to 46, with higher scores indicating poorer swallowing function. ...
... It has been used widely as a primary PROM and translated into several other languages. [9][10][11] A difference of 10-points on the composite score is considered a clinically meaningful difference, 12 which can be reliably applied to between-group analyses. The Speech Handicap Index (SHI) is a 30-item questionnaire developed and validated in 2008 13 for patients with HNC, which assessing patient self-reported speech functioning and psychosocial functioning related to speech. ...
Background:
The FACE-Q H&N is a patient reported outcome measure covering multiple constructs for patients with head and neck tumors. Additional testing is needed to determine suitability in assessing speech- and swallowing-related quality of life and function.
Methods:
FACE-Q H&N, The M. D. Anderson Dysphagia Inventory (MDADI), and Speech Handicap Index (SHI) scores were collected from two patient cohorts who had undergone jaw reconstruction. Construct validity was assessed using convergent validity testing and known groups testing to assess discriminant validity.
Results:
A priori hypotheses testing demonstrated strong correlations (ρ > 0.6, p < 0.05) between FACE-Q H&N eating and drinking, swallowing and eating distress scales with MDADI subscales, and between FACE-Q H&N speech function and distress scales and the SHI. Known groups testing demonstrated all instruments could delineate outcomes among patients who had radiation, advanced tumors, and tracheostomy.
Conclusion:
The FACE-Q H&N may be an alternative for the SHI and MDADI in this patient cohort.
... 21 The MDADI is validated for, for example, Arabic, 32 Chinese, 33 Danish, 34 English, French, 35 German, 36 Indonesian, 37 Italian, 38 Japanese, 39 Portuguese, 40 Swedish, 41 and Spanish. 42 ...
Nephropathic cystinosis is a rare autosomal recessive lysosomal storage disorder. With the availability of treatment and renal replacement therapy, nephropathic cystinosis has evolved from an early fatal disease to a chronic, progressive disorder with potentially high impairment. We aim to review the literature on the health‐related quality of life and identify appropriate patient‐reported outcome measurements to assess the health‐related quality of life of patients with cystinosis. For this review, we conducted a literature search in PubMed and Web of Science in September 2021. Inclusion and exclusion criteria for the selection of articles were defined a priori. We identified 668 unique articles through the search and screened them based on title and abstract. The full texts of 27 articles were assessed. Finally, we included five articles (published between 2009 and 2020) describing the health‐related quality of life in patients with cystinosis. All studies, apart from one, were conducted in the United States, and no condition‐specific measurement was used. Patients with cystinosis reported a lower health‐related quality of life (for certain dimensions) than healthy subjects. Few published studies address the health‐related quality of life of patients with cystinosis. Such data must be collected standardized and follow the FAIR (Findable, Accessible, Interoperable, and Reusable) principles. To gain a comprehensive understanding of the impact of this disorder on health‐related quality of life, it is necessary to use generic and condition‐specific instruments to measure this, preferably in large samples from longitudinal studies. A cystinosis‐specific instrument for measuring health‐related quality of life has yet to be developed.
... (2) The Functional Oral Intake Scale (FOIS) [14], with 1-7 levels corresponding to a score of 1-7 points, was used to evaluate the oral intake function of patients in the two groups: No oral intake (1 point); Tube dependent with minimal attempts of food or liquid (2 points); Tube dependent with consistent oral intake of food or liquid (3 points); Total oral diet of a single consistency (4 points); Total oral diet with multiple consistencies, but requiring special preparation or compensations (5 points); Total oral diet with multiple consistencies without special preparation, but with specific food limitations (6 points); Total oral diet with no restrictions (7 points). (3) The MD Anderson Dysphagia Inventory (MDADI) [15] was used to evaluate the swallowing function of patients before and after treatment, from global, emotional, functional, and physical subscales. Using Likert's 5-level score, 1 point indicates strongly agree, 5 points indicates strongly disagree. ...
Purpose:
To explore the therapeutic efficacy of neuromuscular electrical stimulation (NMES) combined with swallowing rehabilitation training on the healing effect and quality of life of stroke patients with dysphagia.
Methods:
The clinical data of 63 stroke patients admitted to the First Affiliated Hospital of Zhengzhou University from October 2019 to September 2020 were retrospectively analyzed. The included patients were divided into two groups according to different treatment plans: an observation group (n=33) treated with NMES combined with swallowing rehabilitation training, and a control group (n=30) treated by swallowing rehabilitation training alone. Before and after 2 courses of treatment, the Water swallow test, Functional Oral Intake Scale (FOIS), and MD Anderson Dysphagia Inventory (MDADI) were used to assess the swallowing function of patients in the two groups, and the National Institutes of Health Stroke Scale (NIHSS) was used to evaluate patients' neurological deficit; the SA7550 surface electromyogram (EMG) analysis system was applied to collect surface EMG, and the F113-5 medical X-ray TV system was used to detect the mobility of the hyoid-throat complex; the negative emotions of patients were assessed using the Hamilton Rating Scale for Depression (HAMD) before and after treatment, and the quality of life was evaluated by the Swallowing Quality of Life (SWAL-QOL) questionnaire; and the occurrence of adverse reactions during treatment was recorded and compared between the two groups.
Results:
There was no significant difference in swallowing function, duration of swallowing, maximum amplitude value, and hyoid-throat complex mobility between the two groups before treatment (P>0.05), nor were there any differences in the scores of FOIS, MDADI, NIHSS, HAMD, and SWAL-QOL before treatment (P>0.05). After treatment, however, the above indicators of both groups were significantly improved (P<0.05), and the improvements were more significant in the observation group compared with the control group (P<0.05). Moreover, the incidence of adverse reactions in both groups were relatively low without significant difference between groups (P>0.05).
Conclusion:
NMES combined with swallowing rehabilitation training is effective in the treatment of swallowing dysfunction following stroke. It can effectively improve patients' swallowing function and quality of life, and relieve their negative emotions, with a high safety profile, which is worthy of clinical promotion.
... Higher scores indicate better balance. (7) The M.D. Anderson Dysphagia Inventory (MDADI) [17] was to evaluate the swallowing function of patients before and after treatment. The scale was divided into four dimensions: global, emotional, functional, and physical. ...
Background:
Stroke is a common cerebrovascular disease among the middle-aged and elderly, which can lead to a series of neurological disorders. Acupuncture is an important part of traditional Chinese medicine, with great value in improving the neurological deficits of stroke patients. In addition, rehabilitation therapy is also of great significance for alleviating the neurological deficits of patients and improving their activities of daily living.
Objective:
To explore the effect of acupuncture and moxibustion combined with rehabilitation therapy on the recovery of neurological function and prognosis of stroke patients.
Methods:
The case data of 100 stroke patients treated in the Wuhan Hospital of Traditional Chinese Medicine from January 2019 to July 2021 were analyzed retrospectively. According to the treatment plan patients received, they were divided into the following two groups: an observation group (n = 52) treated with acupuncture combined with rehabilitation therapy and a control group (n = 48) treated with rehabilitation therapy alone. The two groups were compared in terms of the following items: therapeutic efficacy, plasma levels of cortisol (Cor) and neuropeptide Y (NPY), nerve function, motor function, balance ability, self-care ability, swallowing function, negative emotions, and quality of life.
Results:
The therapeutic effect of the observation group was significantly higher than that of the control group (P < 0.05). The levels of Cor and NPY, as well as the neurological function, motor function, balance ability, self-care ability, swallowing function, and negative emotions, were not significantly different between the two groups before treatment (P > 0.05). While after intervention, all the above indexes improved in both groups, with better improvements in the observation group compared with the control group (P < 0.05). And the various dimensions concerning the quality of life of patients were also significantly better in the observation group when compared with the control group.
Conclusion:
Acupuncture of traditional Chinese medicine combined with rehabilitation therapy has outstanding effects in stroke treatment and can effectively improve the neurological function, prognosis, and quality of life of patients, which is worthy of clinical promotion.
... The [9][10][11]16,17 In the present study, we performed an ICC evaluation based on a 2-way mixed effect model, mean rating (k ¼ 2) and absolute consistency. The Indonesian MDADI questionnaire showed excellent reliability for the overall score result (0.985, 95% CI; 0.962-0.993). ...
Introduction Dysphagia is common in head and neck cancer patients; it is associated with significant morbidity, including quality of life. Several instruments can be used to assess the quality of life of dysphagia patients, including the M.D Anderson dysphagia inventory (MDADI) questionnaire, which is sufficiently valid and reliable to improve the quality of life of patients with neurological disorders and head and neck cancer.
Objective The purpose of the present study is to perform adaptation, cultural translation, and validation of the MDADI questionnaire for the Indonesian language.
Methods This cross-sectional study assessed the validity and reliability of the MDADI Indonesian adaptation instrument in head and neck cancer patients with swallowing disorders in the Otorhinolaryngology clinic of the Dr. Sardjito hospital, Yogyakarta, from May to August 2019.
Results There were 40 study subjects, including 31 men and 9 women. The MDADI instrument adapted to Indonesian is valid and reliable as an instrument for assessing the quality of life of patients with head and neck cancer with swallowing disorders, with r-values ranging from 0.314 to 0.939. Internal consistency shows that Cronbach's α is 0.915, and test-retest reliability (intra-class correlation) ranges from 0.919 to 0.985.
Conclusion The translation and validation of the Indonesian MDADI instrument were performed as an instrument for assessing the quality of life of head and neck cancer patients with swallowing disorders.
... Validation for Spanishspeaking patients was first published in 2019. 32 Nonetheless, EAT-10 is widely used and easy to apply. Although this could be considered a bias, no other available screening test was feasible in our outpatient consultations. ...
Objective/Hypothesis
The 10-item Eating-Assessment Tool (EAT-10) is a dysphagia screening test. In HNC patients, screening and diagnosis of dysphagia are not well-established. To determine the metrological properties of the EAT-10 compared with videofluoroscopy in non-surgical HNC-patients and to assess the relationship between EAT-10 scores and patients’ self-reported symptoms.
Study Design
Prospective cohort study.
Methods
Forty-six HNC-patients recently diagnosed and referred to chemoradiotherapy (CRT). Main outcome was evidence of dysphagia according to EAT-10 score, self-perception on a Visual Analog Scale (VAS) of impaired swallowing, severity on the Penetration-Aspiration Scale (PAS), and the Functional Oral Intake Scale (FOIS). Patients were assessed at baseline, before-CRT, after-CRT, and at 3-month follow-up.
Results
A strong baseline correlation between EAT-10, VAS, and FOIS was observed. All 3 values decreased in weeks 6 to 9 after CRT initiation; a poor correlation of EAT-10 with VAS was observed at 3-month follow-up. A receiver operating characteristic curve determined new cut-off points (sensitivity/specificity) for safe swallowing: baseline 3 (86%, 77%); post-CRT, 15 (62.5%, 80%); and 3-month follow-up, 4 (83%, 75%).
Conclusions
New safe-swallow EAT-10-points are suggested for this population during screening and the oncological follow-up. A poor correlation between EAT10-score and patient self-reported symptoms was observed at the end-RT and at 3-month follow-up, highlighting the need for an objective evaluation instrument.
The aim of this study was to translate and adapt the MD Anderson Dysphagia Inventory (MDADI) questionnaire into Finnish and validate it in patients with head and neck cancer (HNC). A total of 94 participants were included: 64 dysphagic HNC patients and 30 non-dysphagic age- and gender-matched controls. The MDADI was formally translated using the forward-backward method and feasibility, test-retest reliability, internal consistency, score distribution, known-group validity, and patient feedback and were analyzed. Criterion and convergent validities were tested against the previously validated dysphagia questionnaire F-EAT-10. The results showed good variability and no floor or ceiling effects in the dysphagic group (age range 31 to 85 years, mean 67.8, SD 11.2). In all MDADI subscales, the internal consistency reliability was high (Cronbach’s alpha > 0.8). Moreover, the intraclass correlation in test-retest (n = 55) was high (> 0.9) in all subscales. The MDADI was able to discriminate between dysphagic and non-dysphagic participants: the mean total score was 73.6 for the dysphagic group and 99.9 for the control group (p > 0.001). The correlations between the MDADI and the F-EAT-10 were strong demonstrating criterion and convergent validities. Patient feedback of the MDADI was positive. In conclusion, the Finnish MDADI is a valid instrument to assess dysphagia-related quality of life in patients with HNC, offering enhanced clinical and research utility.
Supplementary Information
The online version contains supplementary material available at 10.1038/s41598-025-03616-1.
Introduction: Dysphagia is a prevalent symptom of various neurological diseases and is associated with decreased quality of life. The M.D. Anderson Dysphagia Inventory (MDADI) is globally utilized tool to assess the impact of dysphagia on quality of life. However, a Turkish version of the scale is not yet available. This study aimed to translate, culturally adapt, and evaluate the validity and reliability of the Turkish version of the MDADI. Methods: One hundred twenty-four patients who were diagnosed with definite neurological disease completed the study. The cross-cultural adaptation and translation process of the MDADI adhered to the World Health Organization's guidelines using the forward-backward translation method. The feasibility and the floor and ceiling effects were evaluated. Cronbach’s alpha was used to assess internal consistency. The Bland and Altman method and Interclass Correlation Coefficient (ICC) were used to evaluate test-retest reliability. Absolute reliability was determined using the standard error of the measurement (SEM) and minimal detectable change (MDC). Construct validity was assessed using Pearson’s correlation coefficient between the MDADI and the Turkish Swallowing Quality of Life (T-SWAL-QOL) questionnaire. Results: Our study had a feasibility rate of 100%. No floor or ceiling effects were determined for any subscale or composite scores of the T-MDADI. The T-MDADI demonstrated excellent reliability, with Cronbach’s alpha coefficients ranging from 0.89 to 0.96 and ICC values from 0.81 to 0.95, confirming strong internal consistency and test-retest reliability. Measurement precision was supported by a SEM of 3.96 and an MDC of 10.97 for the composite score. In terms of validity, significant correlations were observed between T-MDADI subdomains and T-SWAL-QOL subdomains (r = 0.61–0.80 for food selection, mental health, and social functioning; r = 0.41–0.60 for eating duration and communication; p < 0.01), demonstrating good to very good convergent validity. Conclusion: The T-MDADI demonstrates validity and reliability as a questionnaire for assessing dysphagia-related quality of life in Turkish patients with neurological diseases.
Dysphagia is a major head and neck cancer (HNC) issue. Dysphagia‐related patient‐reported outcome measures (PROMs) are critical for patient‐centred assessment and intervention tailoring. This systematic review aimed to derive a comprehensive inventory of HNC dysphagia PROMs and appraise their content validity and internal structure. Six electronic databases were searched to February 2023 for studies detailing PROM content validity or internal structure. Eligible PROMs were those developed or validated for HNC, with ≥20% of items related to swallowing. Two independent raters screened citations and full‐text articles. Critical appraisal followed COSMIN guidelines. Overall, 114 studies were included, yielding 39 PROMs (17 dysphagia‐specific and 22 generic). Of included studies, 33 addressed PROM content validity and 78 internal structure. Of all PROMs, only the SOAL met COSMIN standards for both sufficient content validity and internal structure. Notably, the development of 18 PROMs predated the publication of COSMIN standards. In conclusion, this review identified 39 PROMs addressing dysphagia in HNC, of which only one met COSMIN quality criteria. Given that half of PROMs were developed prior to COSMIN guidelines, future application of current standards is needed to establish their psychometric quality.
Background
Laryngologists use patient-reported outcome measures (PROM) to determine the efficacy of an intervention or to evaluate a patient's symptomatology. PROMs should be developed for a diverse target audience, including patients of all literacy levels. The American Medical Association (AMA) recommends that PROMs are written at or below the sixth- grade level. In recent studies, readability scores for otolaryngology PROMs in English were above the recommended reading level. To date, there is limited data regarding the readability of Spanish PROMs. Thus, this study aims to report the readability of Spanish language PROMs in laryngology.
Methods
This study analyzed nine Spanish language laryngology PROMs. The authors queried PROMs from PubMed and Google scholar based upon English language laryngology PROM systematic reviews. Common categories included voice, airway, dysphagia, and other laryngology PROMs. Only nine laryngology PROMs were translated and validated in the Spanish language and publicly available. The readability of Spanish PROMs was determined using a multi-lingual readability software by two readability indices: Fernández Huerta and INFLESZ.
Results
The mean and standard deviation (SD) Fernández-Huerta was 75.25 (27.12) and INFLESZ was 71.25 (26.98). The average readability score per PROM in Spanish was: DI (84.19), EAT-10 (11.54), MDADI (64.92), RSI (57.22), SWAL-QoL (70.98), TVQ (87.64), VFI (99.46), VHI-10 (95.04), and VRQoL (88.28).
Conclusion
The mean readability of Spanish language laryngology PROMs was above the recommended reading level. Patient readability should be considered when developing laryngology PROMs translations and validations. Robust development and testing of novel PROMs are important to address the persistent, pervasive risks for Spanish speaking patients.
Culturally competent management of adults with swallowing disorders involves more than simply including ethnically appropriate foods in dysphagia therapy. It requires an understanding of the client's health beliefs, challenges, and unique cultural perspective regarding all aspects of food to ensure unbiased and culturally appropriate services are provided. This chapter begins with an overview of dysphagia management followed by a closer look at cultural beliefs regarding food and ethical conflicts that may arise. The strategies for shared decision-making presented help create a culturally sensitive dynamic between the clinician and the patient/family that positively influence therapy outcomes. The chapter concludes with a case study that highlights the importance of ethnographic interviewing needed to establish understanding and trust between the clinician and an elderly Mexican woman and her family. The strategies and techniques presented here can be applied across all cultures to achieve successful management of dysphagia.
The objectives were to translate and culturally adapt the M.D. Anderson Dysphagia Inventory (MDADI) into Danish and subsequently test the reliability of the Danish version. The MDADI was translated into Danish and cross culturally adapted through cognitive interviews. The final version was test–retest evaluated in a group of head and neck cancer (HNC) patients who responded to the questionnaire twice with a mean of eight days apart. Interclass correlation coefficient, Cronbach’s alpha, floor and ceiling effects, standard error of measurement and minimal detectable change were investigated. Fourteen patients were interviewed on the comprehensibility of the Danish MDADI, and all found the questionnaire meaningful, easy to understand, non-offensive and to include relevant aspects of dysphagia related to HNC. Sixty-four patients were included in the test–retest study. Especially, one item in the emotional scale (E7) appeared to be often misinterpreted, and ceiling effects were found in all four subdomains (global, emotional, functional and physical). The four subdomains and the composite score showed acceptable test–retest reliability and internal consistency in a Danish population of HNC patients. The Danish MDADI is reliable in terms of internal consistency and test–retest reproducibility and can be used in assessing the health-related quality of life in head and neck cancer patients with dysphagia.
Regression methods were used to select and score 12 items from the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) to reproduce the Physical Component Summary and Mental Component Summary scales in the general US population (n = 2,333). The resulting 12-item short-form (SF-12) achieved multiple R squares of 0.911 and 0.918 in predictions of the SF-36 Physical Component Summary and SF-36 Mental Component Summary scores, respectively. Scoring algorithms from the general population used to score 12-item versions of the two components (Physical Component Summary and Mental Component Summary) achieved R squares of 0.905 with the SF-36 Physical Component Summary and 0.938 with the SF-36 Mental Component Summary when cross-validated in the Medical Outcomes Study. Test-retest (2-week) correlations of 0.89 and 0.76 were observed for the 12-item Physical Component Summary and the 12-item Mental Component Summary, respectively, in the general US population (n = 232). Twenty cross-sectional and longitudinal tests of empirical validity previously published for the 36-item short-form scales and summary measures were replicated for the 12-item Physical Component Summary and the 12-item Mental Component Summary, including comparisons between patient groups known to differ or to change in terms of the presence and seriousness of physical and mental conditions, acute symptoms, age and aging, self-reported 1-year changes in health, and recovery from depression. In 14 validity tests involving physical criteria, relative validity estimates for the 12-item Physical Component Summary ranged from 0.43 to 0.93 (median = 0.67) in comparison with the best 36-item short-form scale. Relative validity estimates for the 12-item Mental Component Summary in 6 tests involving mental criteria ranged from 0.60 to 1.07 (median = 0.97) in relation to the best 36-item short-form scale. Average scores for the 2 summary measures, and those for most scales in the 8-scale profile based on the 12-item short-form, closely mirrored those for the 36-item short-form, although standard errors were nearly always larger for the 12-item short-form.
Dysphagia can have severe consequences for the patient's health, influencing health-related quality of life (HRQoL). Sound psychometric properties of HRQoL questionnaires are a precondition for assessing the impact of dysphagia, the focus of this study, resulting in recommendations for the appropriate use of these questionnaires in both clinical practice and research contexts. We performed a systematic review starting with a search for and retrieval of all full-text articles on the development of HRQoL questionnaires related to oropharyngeal dysphagia and/or their psychometric validation from the electronic databases PubMed and Embase published up to June 2011. Psychometric properties were judged according to quality criteria proposed for health status questionnaires. Eight questionnaires were included in this study. Four are aimed solely at HRQoL in oropharyngeal dysphagia: the deglutition handicap index (DHI), dysphagia handicap index (DHI'), M.D. Anderson Dysphagia Inventory (MDADI), and SWAL-QOL, while the EDGQ, EORTC QLQ-STO 22, EORTC QLQ-OG 25 and EORTC QLQ-H&N35 focus on other primary diseases resulting in dysphagia. The psychometric properties of the DHI, DHI', MDADI, and SWAL-QOL were evaluated. For appropriate applicability of HRQoL questionnaires, strong scores on the psychometric criteria face validity, criterion validity, and interpretability are prerequisites. The SWAL-QOL has the strongest ratings for these criteria, while the DHI' is the most easy to apply given its 25 items and the use of a uniform scoring format. For optimal use of HRQoL questionnaires in diverse settings, it is necessary to combine psychometric and utility approaches.
Analysis of quality of life (QOL) has revealed that preservation of swallowing, speech, and breathing functions has a direct impact on QOL and that these functions are important patient-reported outcomes. The purposes of this study were to adapt and culturally validate the M.D. Anderson Dysphagia Inventory (MDADI) to the Brazilian Portuguese language and to evaluate QOL related to dysphagia in patients treated for head and neck cancer. This was a cross-sectional study that included 72 adult patients with a mean age of 63 years who were treated for head and neck cancer. Construct validity and reliability analyses were performed through the comparison of the MDADI with three other health-related QOL questionnaires administered at the time of enrollment and MDADI application 2 weeks thereafter, respectively. Reliability was established by assuring both internal consistency (Cronbach's α) and test-retest reliability (intraclass correlation coefficient, ICC). Test-retest reliability for the total score in the MDADI had an ICC greater than 0.795 (p < 0.001). The MDADI had significant statistical correlations with the other questionnaires. Patients treated for head and neck cancer had a mean total score of 83 on the MDADI, which is indicative of minimal limitation in overall QOL. In conclusion, the present study validates the adaptation of the MDADI to the Brazilian Portuguese language and provides another tool to evaluate the impact of dysphagia on the QOL of head and neck cancer patients.
Chemoradiation (CRT) is a valuable treatment option for advanced hypopharyngeal squamous cell cancer (HSCC). However, long-term toxicity and quality of life (QOL) is scarcely reported. Therefore, efficacy, acute and long-term toxic effects, and long-term QOL of CRT for advanced HSCC were evaluated,using retrospective study and post-treatment quality of life questionnaires. in a tertiary hospital setting. Analysis was performed of 73 patients that had been treated with CRT. Toxicity was rated using the CTCAE score list. QOL questionnaires EORTC QLQ-C30, QLQ-H&N35, and VHI were analyzed. The most common acute toxic effects were dysphagia and mucositis. Dysphagia and xerostomia remained problematic during long-term follow-up. After 3 years, the disease-specific survival was 41%, local disease control was 71%, and regional disease control was 97%. The results indicated that CRT for advanced HSCC is associated with high locoregional control and disease-specific survival. However, significant acute and long-term toxic effects occur, and organ preservation appears not necessarily equivalent to preservation of function and better QOL.
Quality of life is an important outcome measurement in objectifying the current health status or therapy effects in patients with oropharyngeal dysphagia. In this study, the validity and reliability of the Dutch version of the Deglutition Handicap Index (DHI) and the MD Anderson Dysphagia Inventory (MDADI) have been determined for oncological patients with oropharyngeal dysphagia. At Maastricht University Medical Center, 76 consecutive patients were selected and asked to fill in three questionnaires on quality of life related to oropharyngeal dysphagia (the SWAL-QOL, the MDADI, and the DHI) as well as a simple one-item visual analog Dysphagia Severity Scale. None of the quality-of-life questionnaires showed any floor or ceiling effect. The test-retest reliability of the MDADI and the Dysphagia Severity Scale proved to be good. The test-retest reliability of the DHI could not be determined because of insufficient data, but the intraclass correlation coefficients were rather high. The internal consistency proved to be good. However, confirmatory factor analysis could not distinguish the underlying constructs as defined by the subscales per questionnaire. When assessing criterion validity, both the MDADI and the DHI showed satisfactory associations with the SWAL-QOL (reference or gold standard) after having removed the less relevant subscales of the SWAL-QOL. In conclusion, when assessing the validity and reliability of the Dutch version of the DHI or the MDADI, not all psychometric properties have been adequately met. In general, because of difficulties in the interpretation of study results when using questionnaires lacking sufficient psychometric quality, it is recommended that researchers strive to use questionnaires with the most optimal psychometric properties.
Objectives
Dysphagia-related sequelae are common after head and neck cancer treatment. Our aims were 1) to document overall and site-specific dysphagia, stricture, and pneumonia rates in a Medicare population, 2) to calculate treatment-specific rates and adjusted odds of developing these complications, and 3) to track changes in rates between 1992 and 1999.
Methods
Head and neck cancer patients between 1992 and 1999 were identified in combined Surveillance Epidemiology and End Results (SEER) registry and Medicare databases. Multivariate analyses determined odds of dysphagia, stricture, and pneumonia based on modality.
Results
Of 8,002 patients, 40% of experienced dysphagia, 7% stricture, and 10% pneumonia within 3 years of treatment. In adjusted analyses, patients treated with chemoradiation had more than 2.5-times-greater odds of dysphagia than did those treated with surgery alone. Combined therapy was associated with increased odds of stricture (p < 0.05). The odds of pneumonia were increased in patients treated with radiation with or without chemotherapy. Temporally, the dysphagia rates increased 10% during this period (p < 0.05).
Conclusions
Sequelae of head and neck cancer treatment are common and differ by treatment regimen. Those treated with chemoradiation had higher odds of experiencing dysphagia and pneumonia, whereas patients treated with any combined therapy more commonly experienced stricture. These sequelae represent major sources of morbidity and mortality in this population.
Regression methods were used to select and score 12 items from the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) to reproduce the Physical Component Summary and Mental Component Summary scales in the general US population (n=2,333). The resulting 12-item short-form (SF-12) achieved multiple R squares of 0.911 and 0.918 in predictions of the SF-36 Physical Component Summary and SF-36 Mental Component Summary scores, respectively. Scoring algorithms from the general population used to score 12-item versions of the two components (Physical Components Summary and Mental Component Summary) achieved R squares of 0.905 with the SF-36 Physical Component Summary and 0.938 with SF-36 Mental Component Summary when cross-validated in the Medical Outcomes Study. Test-retest (2-week)correlations of 0.89 and 0.76 were observed for the 12-item Physical Component Summary and the 12-item Mental Component Summary, respectively, in the general US population (n=232). Twenty cross-sectional and longitudinal tests of empirical validity previously published for the 36-item short-form scales and summary measures were replicated for the 12-item Physical Component Summary and the 12-item Mental Component Summary, including comparisons between patient groups known to differ or to change in terms of the presence and seriousness of physical and mental conditions, acute symptoms, age and aging, self-reported 1-year changes in health, and recovery for depression. In 14 validity tests involving physical criteria, relative validity estimates for the 12-item Physical Component Summary ranged from 0.43 to 0.93 (median=0.67) in comparison with the best 36-item short-form scale. Relative validity estimates for the 12-item Mental Component Summary in 6 tests involving mental criteria ranged from 0.60 to 107 (median=0.97) in relation to the best 36-item short-form scale. Average scores for the 2 summary measures, and those for most scales in the 8-scale profile based on the 12-item short-form, closely mirrored those for the 36-item short-form, although standard errors were nearly always larger for the 12-item short-form.
To determine associations between objective assessments (swallowing function and weight change) and subjective quality-of-life (QOL) measures.
Observational case series using clinical testing and questionnaires.
University hospital-based tertiary clinical practice.
Convenience sample of 5-year survivors of head and neck cancer (62 nonlaryngectomy survivors were studied).
Objective testing included examination, weight history, videofluoroscopic swallow studies (VFSS), and oropharyngeal swallowing efficiency (OPSE). Subjective testing included QOL questionnaires (University of Washington Quality-of-Life [UWQOL] Scale, Performance Status Scale for Head and Neck Cancer Patients [PSS-HN], Functional Assessment of Cancer Treatment-General [FACT-G] Scales, and Functional Assessment of Cancer Therapy-Head and Neck [FACT-H&N] Scale).
Aspiration (identified by VFSS), weight change, and QOL measures.
Aspiration was associated with the decreased QOL scores in chewing, swallowing, normalcy of diet, and additional concerns of the FACT-H&N Scale. No association was found between aspiration and willingness to eat in public, subjective understandability, or any of the FACT-G scales. Of the nonlaryngectomy survivors, 27 (44%) demonstrated some degree of aspiration during VFSS. Associations were found between aspiration, primary tumor T stage, weight change, and OPSE. Aspirators lost a mean of 10.0 kg from precancer treatment weight, while nonaspirators gained a mean of 2.3 kg (P<.001). Mean OPSE scores were 69 for nonaspirators and 53 for aspirators (P =.01).
Almost half of long-term nonlaryngectomy head and neck cancer survivors demonstrated at least some degree of aspiration. The presence of aspiration is associated with substantial weight loss, advanced initial tumor stage, diminished oropharyngeal swallowing efficiency, and lower scores on a variety of QOL scales.
Context:
Swallowing is a continuous dynamic process, characterized by complex stages, that involves structures of the oral cavity, pharynx, larynx and esophagus. It can be divided into three phases: oral, pharyngeal and esophageal. Dysphagia is characterized by difficulty with, or the inability to swallow food of normal consistencies.
Objective:
To investigate the presence of swallowing difficulties and modifications made to the consistency of the food consumed in cases of total and partial laryngectomy, with or without subsequent radiotherapy, among patients who had not been diagnosed as having dysphagia.
Type of study:
Descriptive study.
Setting:
Voice Clinic of São Paulo Hospital, Universidade Federal de São Paulo/Escola Paulista de Medicina, São Paulo, Brazil.
Method:
36 laryngectomy patients: 25 total and 11 frontolateral cases, were studied. A survey consisting of a 23-item questionnaire was applied by a single professional.
Results:
Among those interviewed, 44% reported having modified the consistency of the food consumed (56% of the total and 20% of the partial frontolateral laryngectomy cases). It was not possible to investigate the influence of radiotherapy on the groups in this study, because the partial frontolateral laryngectomy cases were not exposed to radiotherapy. There was a higher incidence of complaints of swallowing difficulties in total laryngectomy cases (p < 0.027) than in partial frontolateral cases. However, there was no relationship between the surgery and weight loss. We also noted the patients' other problems regarding the eating process, as well as the compensation that they made for such problems.
Discussion:
Research has shown an association between laryngectomy and swallowing difficulties, although there have been no reports of associated changes in eating habits among laryngectomized patients.
Conclusions:
This study showed that difficulty in swallowing is not rare in total and frontolateral laryngectomy cases. Such patients, even those who did not complain of dysphagia, also had minor difficulties while eating, and had to make some adaptations to their meals.
Recently, an increasing number of systematic reviews have been published in which the measurement properties of health status questionnaires are compared. For a meaningful comparison, quality criteria for measurement properties are needed. Our aim was to develop quality criteria for design, methods, and outcomes of studies on the development and evaluation of health status questionnaires.
Quality criteria for content validity, internal consistency, criterion validity, construct validity, reproducibility, longitudinal validity, responsiveness, floor and ceiling effects, and interpretability were derived from existing guidelines and consensus within our research group.
For each measurement property a criterion was defined for a positive, negative, or indeterminate rating, depending on the design, methods, and outcomes of the validation study.
Our criteria make a substantial contribution toward defining explicit quality criteria for measurement properties of health status questionnaires. Our criteria can be used in systematic reviews of health status questionnaires, to detect shortcomings and gaps in knowledge of measurement properties, and to design validation studies. The future challenge will be to refine and complete the criteria and to reach broad consensus, especially on quality criteria for good measurement properties.
Objective
To perform translation, cross-cultural adaptation, and validation of the Penn Acoustic Neuroma Quality-of-Life Scale (PANQOL) to the Spanish language.
Study Design
Prospective study.
Setting
Tertiary neurotologic referral center.
Subjects and Methods
PANQOL was translated and translated back, and a pretest trial was performed. The study included 27 individuals diagnosed with vestibular schwannoma. Inclusion criteria were adults with untreated vestibular schwannoma, diagnosed in the past 12 months. Feasibility, internal consistency, test-retest reliability, construct validity, and ceiling and floor effects were assessed for the present study.
Results
The mean overall score of the PANQOL was 69.21 (0-100 scale, lowest to highest quality of life). Cronbach’s α was 0.87. Intraclass correlation coefficient was performed for each item, with an overall score of 0.92. The κ coefficient scores were between moderate and almost perfect in more than 92% of patients. Anxiety and energy domains of the PANQOL were correlated with both physical and mental components of the SF-12. Hearing, balance, and pain domains were correlated with the SF-12 physical component. Facial and general domains were not significantly correlated with any component of the SF-12. Furthermore, the overall score of the PANQOL was correlated with the physical component of the SF-12.
Conclusion
Feasibility, internal consistency, reliability, and construct validity outcomes in the current study support the validity of the Spanish version of the PANQOL.
Background:
Combined-modality treatment of head and neck cancer is becoming more common, driven by the idea that organ(s) preservation should maintain patient appearance and the function of organ(s) involved. Even if treatments have improved, they can still be associated with acute and late adverse effects. The aim of this systematic review was to retrieve current data on how swallowing disorders, dysgeusia, oral mucositis, and xerostomia affect nutritional status, oral intake and weight loss in head and neck cancer (HNC) patients.
Methods:
A systematic literature search covered four relevant electronic databases from January 2005 to May 2015. Retrieved papers were categorised and evaluated considering their methodological quality. Two independent reviewers reviewed manuscripts and abstracted data using a standardised form. Quality assessment of the included studies was performed using the Edwards Method Score.
Results:
Of the 1459 abstracts reviewed, a total of 25 studies were included. The most studied symptom was dysphagia, even if symptoms were interconnected and affected one other. In most of the selected studies the level of evidence was between 2 and 3, and their quality level was from medium to low.
Conclusions:
There are limited data about dysgeusia, oral mucositis and xerostomia outcomes available for HNC patients. There is a lack of well-designed clinical trials and multicenter-prospective cohort studies, therefore further research is needed to ascertain which aspects of these symptoms should be measured.
Objective: The Short Form-36 Health Survey (SF-36) is one of the most widely used and evaluated generic health-related quality of life (HRQL) questionnaires. After almost a decade of use in Spain, the present article critically reviews the content and metric properties of the Spanish version, as well as its new developments. Methods: A review of indexed articles that used the Spanish version of the SF-36 was performed in Medline (PubMed), the Spanish bibliographic databases IBECS and IME. Articles that provided information on the measurement model, reliability, validity, and responsiveness to change of the instrument were selected. Results: Seventy-nine articles were found, of which 17 evaluated the metric characteristics of the questionnaire. The reliability of the SF-36 scales was higher than the suggested standard (Cronbach's alpha) of 0.7 in 96% of the evaluations. Grouped evaluations obtained by meta-analysis were higher than 0.7 in all cases. The SF-36 showed good discrimination among severity groups, moderate correlations with clinical indicators, and high correlations with other HRQL instruments. Moreover, questionnaire scores predicted mortality and were able to detect improvement due to therapeutic interventions such as coronary angioplasty, benign prostatic hyperplasia surgery, and non-invasive positive pressure home ventilation. The new developments (norm-based scoring, version 2, the SF-12 and SF-8) improved both the metric properties and interpretation of the questionnaire. Conclusions: The Spanish verion is a suitable instrument for use in medical research, as well as in clinical practice.
Background:
This study investigated the quality of life of Chinese patients with malignant tumors who had undergone immediate free flap reconstruction surgery. In addition, we compared 2 groups of patients: those who had received radial forearm free flap surgery and others who had received free anterolateral thigh perforator flap surgery.
Methods:
Quality of life was assessed using the Medical Outcomes Study-Short Form-36 (MOS SF-36) and the University of Washington Quality of Life (UW-QOL) questionnaires 12 months after reconstruction.
Results:
A total of 121 of 163 questionnaires were returned (74.2%). There were significant differences between the 2 groups in the T classification (p < .005). Patients reconstructed with free anterolateral thigh perforator flaps performed better in the appearance and shoulder domains, and the role emotion and social functioning domains.
Conclusions:
Using either radial forearm free flaps or free anterolateral thigh perforator flaps for reconstruction of head and neck defects after cancer resection significantly influences a patient's quality of life.
Article
Many quantities of interest in medicine, such as anxiety or degree of handicap, are impossible to measure explicitly. Instead, we ask a series of questions and combine the answers into a single numerical value. Often this is done by simply adding a score from each answer. For example, the mini-HAQ is a measure of impairment developed for patients with cervical myelopathy.1 This has 10 items (table 1)) recording the degree of difficulty experienced in carrying out daily activities. Each item is scored from 1 (no difficulty) to 4 (can't do). The scores on the 10 items are summed to give the mini-HAQ score.
View this table:View PopupView InlineTable 1
Mini-HAQ scale in 249 severely impaired subjects
When items are used to form a scale they need to have internal consistency. The items should all measure the same thing, so they should be correlated with one another. A useful coefficient for assessing internal consistency is Cronbach's alpha.2 The formula is:
[This figure is not available.]
where k is the number of items, si2 is the variance of the ith item and sT2 is the variance of the total score formed by summing all the items. If the items are not simply added to make the score, but first multiplied by weighting coefficients, we multiply the item by its coefficient before calculating the variance si2. Clearly, we must have at least two items-that is k >1, or will be undefined.
The coefficient works because the variance of the sum of a group of independent variables is the sum of their variances. If the variables are positively correlated, the variance of the sum will be increased. If the items making up the score are all identical and so perfectly correlated, all the si2 will be equal and sT2 = k2 si2, so that si2/sT2 = 1/k and = 1. On the other hand, if the items are all independent, then sT2 = si2 and = 0. Thus will be 1 if the items are all the same and 0 if none is related to another.
For the mini-HAQ example, the standard deviations of each item and the total score are shown in the table. We have si2 = 11.16, sT2 = 77.44, and k = 10. Putting these into the equation, we have
[This figure is not available.]
which indicates a high degree of consistency.
For scales which are used as research tools to compare groups, may be less than in the clinical situation, when the value of the scale for an individual is of interest. For comparing groups, values of 0.7 to 0.8 are regarded as satisfactory. For the clinical application, much higher values of are needed. The minimum is 0.90, and =0.95, as here, is desirable.
In a recent example, McKinley et al devised a questionnaire to measure patient satisfaction with calls made by general practitioners out of hours.3 This included eight separate scores, which they interpreted as measuring constructs such as satisfaction with communication and management, satisfaction with doctor's attitude, etc. They quoted for each score, ranging from 0.61 to 0.88. They conclude that the questionnaire has satisfactory internal validity, as five of the eight scores had >0.7. In this issue Bosma et al report similar values, from 0.67 to 0.84, for assessments of three characteristics of the work environment.4
Cronbach's alpha has a direct interpretation. The items in our test are only some of the many possible items which could be used to make the total score. If we were to choose two random samples of k of these possible items, we would have two different scores each made up of k items. The expected correlation between these scores is .
References1.↵Casey ATH, Crockard HA, Bland JM, Stevens J, Moskovich R, Ransford AO.Development of a functional scoring system for rheumatoid arthritis patients with cervical myelopathy Ann Rheum Dis (in press).2.↵Cronbach LJ.Coefficient alpha and the internal structure of tests.Psychometrika1951; 16:297–333.3.↵McKinley RK, Manku Scott T, Hastings AM, French DP, Baker R.Reliability and validity of a new measure of patient satisfaction with out of hours primary medical care in the United Kingdom: development of a patient questionnaire.BMJ1997; 314:193–8.OpenUrlFREE Full Text4.↵Bosma H, Marmot MG, Hemingway H, Nicholson AC, Brunner E, Stansfield SA.Low job control and risk of coronary heart disease in Whitehall II (prospective cohort) study.BMJ1997; 314:558–65.
Objectives:
We conducted a literature review to respond to regulatory concerns about the quality of translated patient-reported outcome questionnaires. Our main objective was to answer two questions: What do the methods have in common (and how do they differ)? Is there evidence of the superiority of one method over another?
Methods:
We identified 891 references by searching MEDLINE, Embase, and the Mapi Research Trust's database with "quality-of-life,"questionnaires,"health status indicators" matched with "translating,"translation issues,"cross-cultural research," and "cross-cultural comparison." Articles were included if they proposed, compared or criticized translation methods.
Results:
Forty-five articles met our inclusion criteria: 23 representing 17 sets of methods, and 22 reviews. Most articles recommend a multistep approach involving a centralized review process. Nevertheless, each group proposes its own sequence of translation events and weights each step differently. There is evidence demonstrating that a rigorous and a multistep procedure leads to better translations. Nevertheless, there is no empirical evidence in favor of one specific method.
Conclusions:
We need more empirical research on translation methodologies. Several points emerge from this review. First, producing high-quality translations is labor-intensive. Second, the availability of standardized guidelines and centralized review procedures improves the efficiency of the production of translations. Although we did not find evidence in favor of one method, we strongly advise researchers to adopt a multistep approach. In line with the recent Food and Drug Administration recommendations, we developed a checklist summarizing the steps used for translations, which can be used to evaluate the rigor of the applied methodologies.
The aim of this study was to validate the Swedish version of the dysphagia-specific quality-of-life questionnaire, the M. D. Anderson Dysphagia Inventory (MDADI). Patients with oropharyngeal dysphagia due to neurologic disease (n = 30) and head and neck (H&N) cancer patients with post-treatment subjective dysphagia (n = 85) were compared to an age- and gender-matched nondysphagic control group (n = 115). A formal forward–backward translation was performed and followed international guidelines. Validity and reliability were tested against the Short-Form 36 (SF-36) and Hospital Anxiety and Depression Scale (HADS). Internal-consistency reliability was calculated by means of Cronbach’s α coefficient. Test–retest reliability was assessed by intraclass correlation (ICC). Convergent and discriminant validity were assessed by correlations between MDADI, SF-36, and HADS. Known-group validity was examined and statistically tested. Of 126 eligible patients, 115 agreed to participate (response rate = 91.3%). The age of the participants ranged between 37 and 92 years. Most of the MDADI items showed good variability and only minor floor or ceiling effects in solitary items were found. The internal-consistency reliability (Cronbach’s α) of the MDADI total score was 0.88 (after correction for systematic errors in the subjects’ responses to two reversed questions). All estimates reached over the satisfactory >0.70 reliability standard for group-level comparison. ICC ranged between 0.83 and 0.97 in the test–retest. The mean MDADI total score was 66.9 (SD = 14.7) for the H&N cancer patients, 65.0 (16.9) for the neurologic patients, and 97.5 (4.4) for the control group (P
Dysphagia is commonly seen in patients undergoing radiation-based therapy for locally advanced squamous carcinoma of the head and neck. Within 4 to 5 weeks of starting therapy, patients develop mucositis, radiation dermatitis, and edema of the soft tissues. Resulting pain, copious mucous production, xerostomia, and tissue swelling contribute to acute dysphagia. As the acute effects resolve, late effects including fibrosis, lymphedema, and damage to neural structures become manifest. Both acute and late effects result in adverse sequelae including aspiration, feeding tube dependence, and nutritional deficiencies. Early referral for evaluation by speech-language pathologists is critical to (1) ensure adequate assessment of swallow function, (2) determine whether further testing is needed to diagnose or treat the swallowing disorder, (3) generate a treatment plan that includes patient education and swallow therapy, (4) work with dieticians to ensure adequate and safe nutrition, and (5) identify patients with clinically significant aspiration.
This paper presents a general statistical methodology for the analysis of multivariate categorical data arising from observer reliability studies. The procedure essentially involves the construction of functions of the observed proportions which are directed at the extent to which the observers agree among themselves and the construction of test statistics for hypotheses involving these functions. Tests for interobserver bias are presented in terms of first-order marginal homogeneity and measures of interobserver agreement are developed as generalized kappa-type statistics. These procedures are illustrated with a clinical diagnosis example from the epidemiological literature.
Health status measures offer scientific, humanistic, and economic benefits for clinical medicine. The main problem is the many intellectual and pragmatic obstacles that block successful development of these measures. The inventory of such problems includes the following: definition of health; medical components of health status; who makes the choice about what to include and emphasize; attributes to be rated by patients or clinicians; indexes to be created from those attributes (including mega-variable indexes, global indexes, and oligo-category indexes); different measurements of the same entity; and clinimetric problems in nonclinimetric models. Several solutions to these multiple, complex difficulties can be offered: 1) ensure that a specific purpose, focus, and setting are clearly identified for every health status index; 2) recognize that an off-the-shelf index with high statistical scores for so-called reliability and validity may not be pertinent for a given current situation in which it is to be used; 3) avoid indexes involving combinations of excessive numbers of variables; 4) let patients choose the most significant foci and components of the indexes; 5) seek greater communication and understanding among multidisciplinary collaborators, who may have many differences in the ethos and goals with which they approach the construction of health status indexes; and 6) recognize that the construction of suitable health status indexes is an outstanding challenge in basic scientific inquiry, and, in this spirit, support major alterations in the current ideology for conceptualization and funding of what is basic science in clinical medicine.
Clinicians and researchers without a suitable health-related quality of life (HRQOL) measure in their own language have two choices: (1) to develop a new measure, or (2) to modify a measure previously validated in another language, known as a cross-cultural adaptation process. We propose a set of standardized guidelines for this process based on previous research in psychology and sociology and on published methodological frameworks. These guidelines include recommendations for obtaining semantic, idiomatic, experiential and conceptual equivalence in translation by using back-translation techniques and committee review, pre-testing techniques and re-examining the weight of scores. We applied these guidelines to 17 cross-cultural adaptation of HRQOL measures identified through a comprehensive literature review. The reporting standards varied across studies but agreement between raters in their ratings of the studies was substantial to almost perfect (weighted kappa = 0.66-0.93) suggesting that the guidelines are easy to apply. Further research is necessary in order to delineate essential versus optional steps in the adaptation process.
To design a reliable and validated self-administered questionnaire whose purpose is to assess dysphagia's effects on the quality of life (QOL) of patients with head and neck cancer.
Cross-sectional survey study.
Focus groups were convened for questionnaire development and design. The M. D. Anderson Dysphagia Inventory (MDADI) included global, emotional, functional, and physical subscales. One hundred consecutive adult patients with a neoplasm of the upper aerodigestive tract who underwent evaluation by our Speech Pathology team completed the MDADI and the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36). Speech pathologists completed the Performance Status Scale for each patient. Validity and reliability properties were calculated. Analysis of variance was used to assess how well the MDADI discriminated between groups of patients.
The internal consistency reliability of the MDADI was calculated using the Cronbach alpha coefficient. The Cronbach alpha coefficients of the MDADI subscales ranged from 0.85 to 0.93. Test-retest reliability coefficients of the subscales ranged from 0.69 to 0.88. Spearman correlation coefficients between the MDADI subscales and the SF-36 subscales demonstrated construct validity. Patients with primary tumors of the oral cavity and oropharynx had significantly greater swallowing disability with an adverse impact on their QOL compared with patients with primary tumors of the larynx and hypopharynx (P<.001). Patients with a malignant lesion also had significantly greater disability than patients with a benign lesion (P<.001).
The MDADI is the first validated and reliable self-administered questionnaire designed specifically for evaluating the impact of dysphagia on the QOL of patients with head and neck cancer. Standardized questionnaires that measure patients' QOL offer a means for demonstrating treatment impact and improving medical care. The development and validation of the MDADI and its use in prospective clinical trials allow for better understanding of the impact of treatment of head and neck cancer on swallowing and of swallowing difficulty on patients' QOL.
To evaluate the quality of life (QOL) associated with dysphagia after head-and-neck cancer treatment.
Of a total population of 104, a retrospective analysis of 73 patients who complained of dysphagia after primary radiotherapy (RT), chemoradiotherapy, and postoperative RT for head-and-neck malignancies were evaluated. All patients underwent a modified barium swallow examination to assess the severity of dysphagia, graded on a scale of 1-7. QOL was evaluated by the University of Washington (UW) and Hospital Anxiety and Depression questionnaires. The QOL scores obtained were compared with those from the 31 patients who were free of dysphagia after treatment. The QOL scores were also graded according to the dysphagia severity.
The UW and Hospital Anxiety and Depression scores were reduced and elevated, respectively, in the dysphagia group compared with the no dysphagia group (p = 0.0005). The UW scores were also substantially lower among patients with moderate-to-severe (Grade 4-7) compared with no or mild (Grade 2-3) dysphagia (p = 0.0005). The corresponding Hospital Anxiety (p = 0.005) and Depression (p = 0.0001) scores were also greater for the moderate-to-severe group. The UW QOL subscale scores showed a statistically significant decrease for swallowing (p = 0.00005), speech (p = 0.0005), recreation/entertainment (p = 0.0005), disfigurement (p = 0.0006), activity (p = 0.005), eating (p = 0.002), shoulder disability (p = 0.006), and pain (p = 0.004).
Dysphagia is a significant morbidity of head-and-neck cancer treatment, and the severity of dysphagia correlated with a compromised QOL, anxiety, and depression. Patients with moderate-to-severe dysphagia require a team approach involving nutritional support, physical therapy, speech rehabilitation, pain management, and psychological counseling.
The Short Form-36 Health Survey (SF-36) is one of the most widely used and evaluated generic health-related quality of life (HRQL) questionnaires. After almost a decade of use in Spain, the present article critically reviews the content and metric properties of the Spanish version, as well as its new developments.
A review of indexed articles that used the Spanish version of the SF-36 was performed in Medline (PubMed), the Spanish bibliographic databases IBECS and IME. Articles that provided information on the measurement model, reliability, validity, and responsiveness to change of the instrument were selected.
Seventy-nine articles were found, of which 17 evaluated the metric characteristics of the questionnaire. The reliability of the SF-36 scales was higher than the suggested standard (Cronbach's alpha) of 0.7 in 96% of the evaluations. Grouped evaluations obtained by meta-analysis were higher than 0.7 in all cases. The SF-36 showed good discrimination among severity groups, moderate correlations with clinical indicators, and high correlations with other HRQL instruments. Moreover, questionnaire scores predicted mortality and were able to detect improvement due to therapeutic interventions such as coronary angioplasty, benign prostatic hyperplasia surgery, and non-invasive positive pressure home ventilation. The new developments (norm-based scoring, version 2, the SF-12 and SF-8) improved both the metric properties and interpretation of the questionnaire.
The Spanish version of the SF-36 and its recently developed versions is a suitable instrument for use in medical research, as well as in clinical practice.
There is a perception that a total laryngectomy has a devastating effect on patients and their families, but only a few studies have addressed long-term quality of life (QOL) after laryngectomy.
A cross-sectional study of 49 patients more than 2 years since laryngectomy was performed with a general health status instrument (Short Form-12, version 2 [SF-12 v2.]) and a disease-specific QOL instrument (University of Washington Quality of Life questionnaire, version 4 [UW-QOL v4.]) in a national meeting of laryngectomy survivors.
As measured by the UW-QOL, patients identified speech, appearance, and activity as the most important problems after total laryngectomy, but surprisingly, no correlation was seen between speech and overall QOL. Age was a predictor of appearance and anxiety, women were more likely to report difficulties swallowing, irradiated patients reported more difficulties with speech and anxiety, and patients who received chemotherapy were more likely to report difficulties with mood. The SF-12 captured no differences between normal subjects and laryngectomees in the physical summary domain (p = .21); however, laryngectomees scored better in the mental domain (p = .004). Laryngectomees had lower scores in physical function (p = .005) and role physical (p = .036).
Long-term QOL is not decreased after total laryngectomy when it is measured with general health instruments and compared with the normal population, but impairment in physical scales is found when disease-specific questionnaires or subscale scores are included. Age, sex, radiation therapy, and chemotherapy are independent predictors of UW-QOL subscales. Voice handicap is identified as a problem but is not predictive of overall QOL. A strong relationship exists between UW-QOL and SF-12.
To assess the relationship for oropharyngeal (OP) cancer and nasopharyngeal (NP) cancer between the dose received by the swallowing structures and the dysphagia related quality of life (QoL).
Between 2000 and 2005, 85 OP and 47 NP cancer patients were treated by radiation therapy. After 46 Gy, OP cancer is boosted by intensity-modulated radiation therapy (IMRT), brachytherapy (BT), or frameless stereotactic radiation/cyberknife (CBK). After 46 Gy, the NP cancer was boosted with parallel-opposed fields or IMRT to a total dose of 70 Gy; subsequently, a second boost was given by either BT (11 Gy) or stereotactic radiation (SRT)/CBK (11.2 Gy). Sixty OP and 21 NP cancer patients responded to functional and QoL questionnaires (i.e., the Performance Status Scales, European Organization for Research and Treatment of Cancer H&N35, and M.D. Anderson Dysphagia Inventory). The swallowing muscles were delineated and the mean dose calculated using the original three-dimensional computed tomography-based treatment plans. Univariate analyses were performed using logistic regression analysis.
Most dysphagia problems were observed in the base of tongue tumors. For OP cancer, boosting with IMRT resulted in more dysphagia as opposed to BT or SRT/CBK. For NPC patients, in contrast to the first booster dose (46-70 Gy), no additional increase of dysphagia by the second boost was observed.
The lowest mean doses of radiation to the swallowing muscles were achieved when using BT as opposed to SRT/CBK or IMRT. For the 81 patients alive with no evidence of disease for at least 1 year, a dose-effect relationship was observed between the dose in the superior constrictor muscle and the "normalcy of diet" (Performance Status Scales) or "swallowing scale" (H&N35) scores (p < 0.01).
Treatment techniques and site considerations regarding dysphagia-related quality of life in cancer of the oropharynx and nasopharynx
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Translation and validation of the MD Anderson Dysphagia Inventory (MDADI) for Spanish-speaking
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