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1.
Cell ; 186(6): 1097-1098, 2023 03 16.
Article in English | MEDLINE | ID: mdl-36931239

ABSTRACT

Translating scientific findings from English to other native languages is essential to make sure that they can be integrated into timely and informed dialogue with policymakers and a diverse range of audiences who are affected by the science. Here, we present innovative approaches how to enhance access to scientific knowledge in non-English languages.


Subject(s)
Language , Translating , Knowledge , Science
2.
Nature ; 630(8018): 841-846, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38839963

ABSTRACT

The development of neural techniques has opened up new avenues for research in machine translation. Today, neural machine translation (NMT) systems can leverage highly multilingual capacities and even perform zero-shot translation, delivering promising results in terms of language coverage and quality. However, scaling quality NMT requires large volumes of parallel bilingual data, which are not equally available for the 7,000+ languages in the world1. Focusing on improving the translation qualities of a relatively small group of high-resource languages comes at the expense of directing research attention to low-resource languages, exacerbating digital inequities in the long run. To break this pattern, here we introduce No Language Left Behind-a single massively multilingual model that leverages transfer learning across languages. We developed a conditional computational model based on the Sparsely Gated Mixture of Experts architecture2-7, which we trained on data obtained with new mining techniques tailored for low-resource languages. Furthermore, we devised multiple architectural and training improvements to counteract overfitting while training on thousands of tasks. We evaluated the performance of our model over 40,000 translation directions using tools created specifically for this purpose-an automatic benchmark (FLORES-200), a human evaluation metric (XSTS) and a toxicity detector that covers every language in our model. Compared with the previous state-of-the-art models, our model achieves an average of 44% improvement in translation quality as measured by BLEU. By demonstrating how to scale NMT to 200 languages and making all contributions in this effort freely available for non-commercial use, our work lays important groundwork for the development of a universal translation system.


Subject(s)
Multilingualism , Natural Language Processing , Neural Networks, Computer , Translating , Benchmarking
3.
Nature ; 620(7975): 855-862, 2023 Aug.
Article in English | MEDLINE | ID: mdl-37532930

ABSTRACT

Patients from historically under-represented racial and ethnic groups are enrolled in cancer clinical trials at disproportionately low rates in the USA1-3. As these patients often have limited English proficiency4-7, we hypothesized that one barrier to their inclusion is the cost to investigators of translating consent documents. To test this hypothesis, we evaluated more than 12,000 consent events at a large cancer centre and assessed whether patients requiring translated consent documents would sign consent documents less frequently in studies lacking industry sponsorship (for which the principal investigator pays the translation costs) than for industry-sponsored studies (for which the translation costs are covered by the sponsor). Here we show that the proportion of consent events for patients with limited English proficiency in studies not sponsored by industry was approximately half of that seen in industry-sponsored studies. We also show that among those signing consent documents, the proportion of consent documents translated into the patient's primary language in studies without industry sponsorship was approximately half of that seen in industry-sponsored studies. The results suggest that the cost of consent document translation in trials not sponsored by industry could be a potentially modifiable barrier to the inclusion of patients with limited English proficiency.


Subject(s)
Clinical Trials as Topic , Communication Barriers , Consent Forms , Drug Industry , Research Personnel , Translations , Humans , Consent Forms/economics , Translating , Clinical Trials as Topic/economics , Drug Industry/economics , Research Personnel/economics
5.
Nature ; 566(7743): 195-204, 2019 02.
Article in English | MEDLINE | ID: mdl-30760912

ABSTRACT

Machine learning approaches are increasingly used to extract patterns and insights from the ever-increasing stream of geospatial data, but current approaches may not be optimal when system behaviour is dominated by spatial or temporal context. Here, rather than amending classical machine learning, we argue that these contextual cues should be used as part of deep learning (an approach that is able to extract spatio-temporal features automatically) to gain further process understanding of Earth system science problems, improving the predictive ability of seasonal forecasting and modelling of long-range spatial connections across multiple timescales, for example. The next step will be a hybrid modelling approach, coupling physical process models with the versatility of data-driven machine learning.


Subject(s)
Big Data , Computer Simulation , Deep Learning , Earth Sciences/methods , Forecasting/methods , Pattern Recognition, Automated/methods , Facial Recognition , Female , Geographic Mapping , Humans , Knowledge , Regression, Psychology , Reproducibility of Results , Seasons , Spatio-Temporal Analysis , Time Factors , Translating , Uncertainty , Weather
6.
J Gen Intern Med ; 39(7): 1095-1102, 2024 May.
Article in English | MEDLINE | ID: mdl-38347346

ABSTRACT

BACKGROUND: Machine translation (MT) apps are used informally by healthcare professionals in many settings, especially where interpreters are not readily available. As MT becomes more accurate and accessible, it may be tempting to use MT more widely. Institutions and healthcare professionals need guidance on when and how these applications might be used safely and how to manage potential risks to communication. OBJECTIVES: Explore factors that may hinder or facilitate communication when using voice-to-voice MT. DESIGN: Health professionals volunteered to use a voice-to-voice MT app in routine encounters with their patients. Both health professionals and patients provided brief feedback on the experience, and a subset of consultations were observed. PARTICIPANTS: Doctors, nurses, and allied health professionals working in the Primary Care Division of the Geneva University Hospitals, Switzerland. MAIN MEASURES: Achievement of consultation goals; understanding and satisfaction; willingness to use MT again; difficulties encountered; factors affecting communication when using MT. KEY RESULTS: Fourteen health professionals conducted 60 consultations in 18 languages, using one of two voice-to-voice MT apps. Fifteen consultations were observed. Professionals achieved their consultation goals in 82.7% of consultations but were satisfied with MT communication in only 53.8%. Reasons for dissatisfaction included lack of practice with the app and difficulty understanding patients. Eighty-six percent of patients thought MT-facilitated communication was easy, and most participants were willing to use MT in the future (73% professionals, 84% patients). Experiences were more positive with European languages. Several conditions and speech practices were identified that appear to affect communication when using MT. CONCLUSION: While professional interpreters remain the gold standard for overcoming language barriers, voice-to-voice MT may be acceptable in some clinical situations. Healthcare institutions and professionals must be attentive to potential sources of MT errors and ensure the conditions necessary for safe and effective communication. More research in natural settings is needed to inform guidelines and training on using MT in clinical communication.


Subject(s)
Communication Barriers , Translating , Humans , Male , Female , Adult , Middle Aged , Physician-Patient Relations , Mobile Applications , Switzerland , Aged , Health Personnel , Communication
7.
J Surg Res ; 300: 93-101, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38805846

ABSTRACT

INTRODUCTION: Patients use the internet to learn more about health conditions. Non-English-speaking patients may face additional challenges. The quality of online breast cancer information, the most common cancer in women, is uncertain. This study aims to examine the quality of online breast cancer information for English and non-English-speaking patients. METHODS: Three search engines were queried using the terms: "how to do a breast examination," "when do I need a mammogram," and "what are the treatment options for breast cancer" in English, Spanish, and Chinese. For each language, 60 unique websites were included and classified by type and information source. Two language-fluent reviewers evaluated website quality using the Journal of American Medical Association benchmark criteria (0-4) and the DISCERN tool (1-5), with higher scores representing higher quality. Scores were averaged for each language. Health On the Net code presence was noted. Inter-rater reliability between reviewers was assessed. RESULTS: English and Spanish websites most commonly originated from US sources (92% and 80%, respectively) compared to Chinese websites (33%, P < 0.001). The most common website type was hospital-affiliated for English (43%) and foundation/advocacy for Spanish and Chinese (43% and 45%, respectively). English websites had the highest and Chinese websites the lowest mean the Journal of American Medical Association (2.2 ± 1.4 versus 1.0 ± 0.8, P = 0.002) and DISCERN scores (3.5 ± 0.9 versus 2.3 ± 0.6, P < 0.001). Health On the Net code was present on 16 (8.9%) websites. Inter-rater reliability ranged from moderate to substantial agreement. CONCLUSIONS: The quality of online information on breast cancer across all three languages is poor. Information quality was poorest for Chinese websites. Improvements to enhance the reliability of breast cancer information across languages are needed.


Subject(s)
Breast Neoplasms , Internet , Humans , Breast Neoplasms/diagnosis , Breast Neoplasms/therapy , Female , Multilingualism , Consumer Health Information/standards , Consumer Health Information/statistics & numerical data , Language , Translating
8.
Ann Fam Med ; 22(4): 288-293, 2024.
Article in English | MEDLINE | ID: mdl-39038965

ABSTRACT

PURPOSE: Person-centered care is foundational to good quality primary care and has positive effects on health outcomes and patient satisfaction. The Person-Centered Primary Care Measure (PCPCM) is a recently developed, patient-reported survey able to assess person-centeredness and has demonstrated strong validity and reliability. Little is known, however, about the feasibility of the PCPCM in non-English-speaking settings. We aimed to translate the questionnaire into Dutch, psychometrically evaluate the translated version, and ensure its feasibility for patients in Dutch primary care. METHODS: We translated the PCPCM into Dutch using forward-backward translations. We conducted psychometric evaluations to ensure its feasibility among Dutch-speaking primary care patients, with special attention to low literacy populations. Next, we assessed structural validity, convergent validity using the Quality of Care Through the Patient's Eyes (QUOTE) questionnaire, and internal consistency in a cross-sectional study in primary care. RESULTS: Translation and adaptation for low literacy populations required 4 iterations. In 4 general practices, 205 patients completed the survey. Confirmatory factor analyses could not confirm the 1-factor solution. The 3-factor solution was found to be a more optimal fit: comprehensiveness of care, personal relation, and contextual care. Internal reliability was high (Cronbach's α were 0.82, 0.73, and 0.86, respectively). We found a strong correlation between the total PCPCM and QUOTE scores (Spearman's ρ = 0.65, P <.001), indicating good convergent validity. CONCLUSION: The Dutch version of the PCPCM has acceptable validity and reliability for measuring person-centeredness in primary care among Dutch-speaking populations including those with low literacy.


Subject(s)
Patient-Centered Care , Primary Health Care , Psychometrics , Translations , Humans , Netherlands , Female , Male , Reproducibility of Results , Middle Aged , Surveys and Questionnaires/standards , Adult , Cross-Sectional Studies , Aged , Patient Satisfaction/statistics & numerical data , Factor Analysis, Statistical , Translating , Quality of Health Care
9.
Headache ; 64(7): 772-782, 2024.
Article in English | MEDLINE | ID: mdl-38785395

ABSTRACT

OBJECTIVE: This study is part of the ODIN-migraine (Optimization of Diagnostic Instruments in migraine) project. It is a secondary, a priori analysis of previously collected data, and aimed to assess the psychometric properties and factor structure of the Cogniphobia Scale for Headache Disorders (CS-HD). We aimed to construct a German-language version and a short version. BACKGROUND: Cogniphobia is the fear and avoidance of cognitive exertion, which the patient believes triggers or exacerbates headache. High cogniphobia may worsen the course of a headache disorder. METHODS: The 15-item CS-HD was translated into German and back translated in a masked form by a professional translator. Modifications were discussed and carried out in an expert panel. A cross-sectional online survey including the CS-HD and further self-report questionnaires was conducted in a sample of N = 387 persons with migraine (364/387 [94.1%] female, M = 41.0 [SD = 13.0] years, migraine without aura: 152/387 [39.3%], migraine with aura: 85/387 [22.0%], and chronic migraine: 150/387 [38.8%]). RESULTS: Exploratory factor analysis resulted in two clearly interpretable factors (interictal and ictal cogniphobia). Confirmatory factor analysis yielded an acceptable to good model fit (χ2(89) = 117.87, p = 0.022, χ2/df = 1.32, RMSEA = 0.029, SRMR = 0.055, CFI = 0.996, TLI = 0.995). Item response theory-based analysis resulted in the selection of six items for the short form (CS-HD-6). Reliability was acceptable to excellent (interictal cogniphobia subscale: ω = 0.92 [CS-HD] or ω = 0.77 [CS-HD-6]; ictal cogniphobia subscale: ω = 0.77 [CS-HD] or ω = 0.73 [CS-HD-6]). The pattern of correlations with established questionnaires confirmed convergent validity of both the CS-HD and the CS-HD-6. CONCLUSION: Both the CS-HD and the CS-HD-6 have good psychometric properties and are suitable for the assessment of cogniphobia in migraine.


Subject(s)
Headache Disorders , Psychometrics , Humans , Female , Male , Adult , Psychometrics/instrumentation , Psychometrics/standards , Middle Aged , Cross-Sectional Studies , Headache Disorders/diagnosis , Germany , Surveys and Questionnaires/standards , Migraine Disorders/diagnosis , Reproducibility of Results , Phobic Disorders/diagnosis , Translating
10.
Neuropediatrics ; 55(3): 171-177, 2024 06.
Article in English | MEDLINE | ID: mdl-38490253

ABSTRACT

BACKGROUND: The Pediatric Quality of Life Inventory™ (PedsQL™) Neuromuscular Module (PedsQL™ 3.0 NM) evaluates the health-related quality of life in children who are affected by neuromuscular diseases. This study's aim is to assess the adaptation of the PedsQL™ 3.0 NM Turkish version (PedsQL™ 3.0 NM-TR) for 2- to 4-year-olds in spinal muscular atrophy (SMA). METHODS: The procedure of translating the PedsQL™ 3.0 NM into Turkish was conducted in accordance with the translation methodology outlined by the PedsQL™ measurement model. The PedsQL™ 3.0 NM-TR was administered to 54 parents of children with SMA aged 2 to 4 years. The test-retest reliability and intraclass correlation coefficient (ICC) were measured for reliability analysis. Cronbach's α coefficient and item score correlations were calculated for internal consistency. Concurrent construct validity was evaluated by Pearson correlations between the outcomes of the PedsQL™ 4.0 Generic Core Scale (PedsQL™ 4.0 GCS) and the PedsQL™ 3.0 NM. RESULTS: The PedsQL™ 3.0 NM-TR total score shows excellent reliability. The Cronbach's α values for the PedsQL™ 3.0 NM ranged between 0.871 and 0.906, while those for the PedsQL™ 4.0 GCS ranged between 0.843 and 0.897. Test-retest ICC values for the PedsQL™ 3.0 NM-TR ranged between 0.812 and 0.917, and for the PedsQL™ 4.0 GCS ranged between 0.773 and 0.899. The relationship between the PedsQL™ 3.0 NM-TR and the subscores of the PedsQL™ 4.0 GCS demonstrated a range of correlations from excellent to fair, indicating the interplay between two scales. CONCLUSION: This study established the PedsQL™ 3.0 NM-TR as reliable, valid, and feasible for use in children aged 2 to 4 years with SMA.


Subject(s)
Muscular Atrophy, Spinal , Quality of Life , Humans , Child, Preschool , Reproducibility of Results , Female , Male , Turkey , Muscular Atrophy, Spinal/diagnosis , Muscular Atrophy, Spinal/physiopathology , Translations , Translating , Surveys and Questionnaires/standards , Psychometrics/standards , Psychometrics/instrumentation
11.
Nature ; 563(7729): 59-64, 2018 11.
Article in English | MEDLINE | ID: mdl-30356211

ABSTRACT

With the rapid development of artificial intelligence have come concerns about how machines will make moral decisions, and the major challenge of quantifying societal expectations about the ethical principles that should guide machine behaviour. To address this challenge, we deployed the Moral Machine, an online experimental platform designed to explore the moral dilemmas faced by autonomous vehicles. This platform gathered 40 million decisions in ten languages from millions of people in 233 countries and territories. Here we describe the results of this experiment. First, we summarize global moral preferences. Second, we document individual variations in preferences, based on respondents' demographics. Third, we report cross-cultural ethical variation, and uncover three major clusters of countries. Fourth, we show that these differences correlate with modern institutions and deep cultural traits. We discuss how these preferences can contribute to developing global, socially acceptable principles for machine ethics. All data used in this article are publicly available.


Subject(s)
Accidents, Traffic , Artificial Intelligence/ethics , Harm Reduction , Internet , Morals , Motor Vehicles , Public Opinion , Robotics/ethics , Data Collection , Decision Making , Female , Humans , Internationality , Male , Motor Vehicles/ethics , Pedestrians , Robotics/methods , Translating
12.
Acta Derm Venereol ; 104: adv38889, 2024 Jun 19.
Article in English | MEDLINE | ID: mdl-38898676

ABSTRACT

A Swedish translation of the patient-reported outcome measure for assessing long-term control of atopic dermatitis, Recap of atopic eczema (RECAP), has not been validated. Cross-cultural translation and multi-centre validation of the translated RECAP questionnaire were therefore performed. Disease severity was assessed using the validated Investigator Global Assessment Scale for atopic dermatitis (vIGA-ADTM). The Swedish RECAP was completed by 208 individuals aged 16 years or older with a median age of 36 years (interquartile range [IQR] 27-48). The participants considered the questionnaire suitable for assessing eczema control. The median RECAP score (range 0-28) was 12 (IQR 5-19). The mean and median vIGA-ADTM scores (range 0-4) were 2 (standard deviation [SD] 2) and 3 (IQR 2-4), respectively. A correlation between RECAP and the vIGA-ADTM was observed (p < 0.001). There was no significant change in scores for participants who answered the questionnaire twice within 14 days. Over time, improved or worsened eczema, as evaluat-ed by vIGA-ADTM, affected RECAP scores significantly (p < 0.001). The study suggests that RECAP can assess AD control in a Swedish clinical setting and shows -acceptable reliability.


Subject(s)
Dermatitis, Atopic , Patient Reported Outcome Measures , Severity of Illness Index , Humans , Dermatitis, Atopic/diagnosis , Adult , Female , Sweden , Male , Middle Aged , Reproducibility of Results , Young Adult , Adolescent , Predictive Value of Tests , Cultural Characteristics , Translating , Surveys and Questionnaires , Time Factors , Cross-Cultural Comparison
13.
BMC Psychiatry ; 24(1): 236, 2024 Mar 28.
Article in English | MEDLINE | ID: mdl-38549105

ABSTRACT

BACKGROUND: The Jenkins Sleep Scale is a widely used self-report questionnaire that assesses sleep quality and disturbances. This study aimed to translate the scale into Arabic and evaluate its psychometric properties in an Arabic-speaking population. METHODS: The Jenkins Sleep Scale was translated into Arabic using forward and backward translation procedures. The Arabic version was administered to a convenience sample of 420 adults along with the Pittsburgh Sleep Quality Index (PSQI) and Athens Insomnia Scale (AIS) for validation purposes. Reliability was examined using Cronbach's alpha and McDonald's omega coefficients. Confirmatory factor analysis (CFA) was also conducted to test the unidimensional factor structure. Convergent validity was assessed using correlations with PSQI and AIS scores. RESULTS: The Cronbach's alpha and McDonald's omega values for the Arabic Jenkins Sleep Scale were 0.74 and 0.75, respectively, indicating good internal consistency. The 2-week and 4-week test-retest intraclass correlation coefficients were both 0.94 (p < 0.001), indicating excellent test-retest reliability. The CFA results confirmed the unidimensional factor structure (CFI = 0.99, TLI = 0.96, RMSEA = 0.08). The measurement model had an equivalent factor structure, loadings, intercepts, and residuals across sex, age, and marital status. Significant positive correlations were found between the Arabic Jenkins scale score and the PSQI (r = 0.80, p < 0.001) and AIS (r = 0.74, p < 0.001), supporting convergent validity. CONCLUSION: The Arabic version of the Jenkins Sleep Scale demonstrated good psychometric properties. The findings support its use as a valid and reliable measure for evaluating sleep quality and disturbances among Arabic-speaking populations.


Subject(s)
Sleep Initiation and Maintenance Disorders , Sleep , Adult , Humans , Psychometrics , Reproducibility of Results , Surveys and Questionnaires , Self Report , Sleep Initiation and Maintenance Disorders/diagnosis , Translating
14.
BMC Psychiatry ; 24(1): 456, 2024 Jun 18.
Article in English | MEDLINE | ID: mdl-38890686

ABSTRACT

BACKGROUND: Through the years, studying negative behaviors of the worldwide population seized the spotlight from many researchers who focused on building scales in order the measure the level of worries, fear and even depression of such stressed individuals. By definition, "Future anxiety" (FA) is fueled by negative thoughts leading to intense fear of unknown future events. The Dark Future scale (DFS) measures the level of anxiety experienced towards the future. Our aim was to examine the psychometric properties of a novel Arabic translation of the DFS. METHODS: A sample of 684 Arabic-speaking young adults (65.6% women) filled the DFS, TEMPS-M (temperaments) and DASS-8 (psychological distress). RESULTS: Confirmatory factor analyses (CFA) supported a unidimensional model of the DFS score, with all 5 items retained. This scale had good reliability. Moreover, concurrent validity demonstrated significant associations between DFS scores and psychological distress, depressive, cyclothymic, irritable and anxious temperament. Scores achieved scalar invariance across gender, with women having greater exposure to anxiety about the future. CONCLUSION: Overall, these findings led to the conclusion that the Arabic DFS is a psychometrically valid tool for the assessment of FA. The DFS is a brief, reliable and easy to apply scale that would help researchers in psychology and psychiatry in assessing anxiety about future.


Subject(s)
Anxiety , Psychometrics , Humans , Female , Male , Young Adult , Adult , Reproducibility of Results , Anxiety/psychology , Adolescent , Translations , Psychiatric Status Rating Scales , Factor Analysis, Statistical , Surveys and Questionnaires/standards , Psychological Distress , Translating
15.
BMC Psychiatry ; 24(1): 507, 2024 Jul 16.
Article in English | MEDLINE | ID: mdl-39014380

ABSTRACT

BACKGROUND: The Arab world is one of the global regions the most directly concerned by, and suffering from climate change's adverse consequences. As such, there appears to be a strong need for an understanding of how Arab people may emotionally respond to climate change. Providing valid and reliable measures of climate change anxiety (CCA) can help gain a clear overview of the situation in Arab countries, and allow to intervene timely and effectively to mitigate any adverse effects on Arab people's mental health. To this end, the present study sought to validate the Arabic language version of the Climate Change Anxiety Scale (CCAS) in a sample of native Arabic-speaking adults from the general population of Lebanon. METHODS: This study adopted a cross-sectional approach and enrolled 763 adults between July and September 2023. RESULTS: A confirmatory analysis of the one-factor model showed poor fit indices as follows: CFI = 0.90, GFI = 0.83, SRMR = 0.048 and RMSEA 0.131 [90% CI 0.123, 0.138). The two-factor model showed a satisfactory fit with a high CFI of and a GFI of 0.91 and a SRMR of 0.04 and RMSEA of 0.05 [90% CI 0.04, 0.06]. Both McDonald's omega and Cronbach alpha values were high for the overall CCAS score (α = 0.96 and ω = 0.96) in the whole sample. Configural, metric and scalar invariance across gender was demonstrated. No significant difference was found between males and females in terms of total CCAS scores (24.53 ± 10.59 vs. 26.03 ± 11.17, t(761) = -1.82, p = .069). Higher CCA, functional impairment and cognitive impairment scores were significantly associated with higher depression, anxiety and stress. CONCLUSION: The reliability and validity of the CCAS in its Arabic version were proven. The availability of this self-report measure could offer a chance to assess CCA among Adults speaking Arabic, and to spread its future use for screening and research purposes.


Subject(s)
Anxiety , Climate Change , Psychometrics , Humans , Male , Female , Adult , Anxiety/psychology , Anxiety/diagnosis , Lebanon , Cross-Sectional Studies , Middle Aged , Reproducibility of Results , Psychiatric Status Rating Scales/standards , Translations , Arabs/psychology , Young Adult , Translating , Aged , Language
16.
Neurol Sci ; 45(3): 1217-1224, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37801235

ABSTRACT

OBJECTIVE: Cluster headache is associated with a decreased quality of life (QoL). The increased focus on patient-reported outcome measures (PROMS) has led to the creation of a tailored Cluster Headache Quality of Life scale (CHQ). Our objective was to create and authenticate a Dutch version of the CHQ (CHQ-D). METHODS: The TRAPD model (Translation, Review, Adjudication, Pretesting, Documentation) was used to translate the CHQ from English to Dutch and ensure cross-cultural adaption. Pre-testing was performed in n = 31 participants, and validity was in a new sample of n = 40 participants who completed the CHQ twice at a 2-day interval. Intraclass correlation coefficient (ICC) and Cronbach's alpha were used to assess the validity and reproducibility of the CHQ-D. RESULTS: To produce the CHQ-D, we made five modifications based on pretesting. Participants finished the questionnaire in a median time of 10 min (IQR:10.0, 17.5) and 90% within 20 min. The majority of participants (74.2%) did not find it burdensome at all. The reliability of the CHQ-D was excellent (Cronbach's alpha: 0.94; ICC: 0.94). CONCLUSION: The CHQ-D is a valid and practical instrument for QoL in individuals with cluster headache. We aim to use CHQ-D as PROM in clinical research in the Netherlands to enforce international collaborations and comparisons of studies.


Subject(s)
Cluster Headache , Quality of Life , Humans , Cluster Headache/diagnosis , Reproducibility of Results , Psychometrics , Surveys and Questionnaires , Translating
17.
Neurol Sci ; 45(6): 2835-2843, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38217788

ABSTRACT

OBJECTIVE: Epilepsy surgery can be proposed as a treatment option in people with focal epilepsy, however satisfaction with epilepsy surgery in Italy remains unknown. We aimed to validate in Italy an instrument to measure patient satisfaction with epilepsy surgery, the 19-item Epilepsy Surgery Satisfaction Questionnaire (ESSQ-19). METHODS: Consecutive patients with epilepsy who received epilepsy surgery between the years 2018-2021 at Modena Academic Hospital were recruited and provided clinical and demographic data. The Italian version of the ESSQ-19 and other three questionnaires were completed to assess construct validity. To evaluate the validity and reliability of the tool Spearman's rank correlation, and internal consistency analysis were performed. RESULTS: 66 out of 79 eligible patients participated in the study (22 females; median age 37 years). The mean values of satisfaction for each domain of the IT-ESSQ-19 were: seizure control 83.4; (SD 16.7), psychosocial functioning 79.3 (SD 17.1), surgical complications 90.8 (SD 14.9), and recovery from surgery 81.4 (SD 16.9). The mean summary score was 83.7 (SD 13.3). The questionnaire was shown to have high internal consistency in the four domains (Cronbach's alpha = 0.82-0.93), and no significant floor/ceiling effects of the summary score. The ESSQ-19 scores significantly correlated with other instruments to support construct validity. It also demonstrated good discriminant validity for being seizure free [AUC 0.72; 95% CI = 0.56-0.88], and to endorse depression [AUC 0.76, 95% CI = 0.56-0.96]. SIGNIFICANCE: The Italian version of the ESSQ-19 is a reliable and valid self-reported questionnaire for assessing patient satisfaction with epilepsy surgery.


Subject(s)
Epilepsy , Patient Satisfaction , Humans , Female , Male , Italy , Adult , Reproducibility of Results , Epilepsy/surgery , Epilepsy/psychology , Surveys and Questionnaires/standards , Middle Aged , Translations , Young Adult , Psychometrics/standards , Neurosurgical Procedures , Translating , Language
18.
Neurol Sci ; 45(7): 3147-3152, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38383749

ABSTRACT

OBJECTIVE: This study aimed to develop a Japanese version of the New Freezing of Gait Questionnaire (NFOG-Q) and investigate its validity and reliability. METHODS: After translating the NFOG-Q according to a standardised protocol, 56 patients with Parkinson's disease (PD) were administered it. Additionally, the MDS-UPDRS parts II and III, Hoehn and Yahr (H&Y) stage, and number of falls over 1 month were evaluated. Spearman's correlation coefficients (rho) were used to determine construct validity, and Cronbach's alpha (α) was used to examine reliability. RESULTS: The interquartile range of the NFOG-Q scores was 10.0-25.3 (range 0-29). The NFOG-Q scores were strongly correlated with the MDS-UPDRS part II, items 2.12 (walking and balance), 2.13 (freezing), 3.11 (freezing of gait), and 3.12 (postural stability) and the postural instability and gait difficulty score (rho = 0.515-0.669), but only moderately related to the MDS-UPDRS item 3.10 (gait), number of falls, disease duration, H&Y stage, and time of the Timed Up-and-Go test (rho = 0.319-0.434). No significant correlations were observed between age and the time of the 10-m walk test. The internal consistency was excellent (α = 0.96). CONCLUSIONS: The Japanese version of the NFOG-Q is a valid and reliable tool for assessing the severity of freezing in patients with PD.


Subject(s)
Gait Disorders, Neurologic , Parkinson Disease , Humans , Male , Female , Aged , Parkinson Disease/diagnosis , Parkinson Disease/physiopathology , Parkinson Disease/complications , Gait Disorders, Neurologic/diagnosis , Gait Disorders, Neurologic/physiopathology , Reproducibility of Results , Surveys and Questionnaires/standards , Japan , Middle Aged , Translating , Severity of Illness Index , Aged, 80 and over , East Asian People
19.
BMC Womens Health ; 24(1): 413, 2024 Jul 23.
Article in English | MEDLINE | ID: mdl-39039453

ABSTRACT

BACKGROUND: Polycystic ovary syndrome is a metabolic disorder prevalent among females of reproductive age. The symptoms of PCOS profoundly affect the quality of life of these females. Outcome measures specific to PCOS are crucial to the management of these patients. The MCPOSQ is a validated tool to measure the health-related quality of life specific to PCOS. The purpose of this study was to translate the modified polycystic ovary syndrome quality of life questionnaire (MPCOSQ) and to determine the reliability and validity of the modified polycystic ovary syndrome quality of life questionnaire Urdu version (MPCOSQ-U). METHODOLOGY: This cross-sectional study was conducted in Islamabad/Rawalpindi. The MPCOSQ was translated to Urdu and validated by expert gynaecologists. The MPCOSQ-U and SF-36 were administered to one hundred eighty females with PCOS. The MPCOSQ-U was evaluated for internal consistency, test-retest reliability, factor analysis, face validity, content validity and construct validity. RESULTS: The average age (years) of the females was 25.27(1.83). The MPCOSQ-U showed excellent test-retest reliability and internal consistency (ICC2,1=0.95, Cronbach's α = 0.97). The content validity index (CVI) was 0.92. There was a statistically significant but weak positive correlation between MPCOSQ-U and SF-36 (r = .186, p = .012). CONCLUSION: The Urdu version of the modified version of the polycystic ovarian syndrome quality of life questionnaire is a validated and reliable tool to assess the quality of life of Pakistani females with PCOS. This is an important step to cover the language barrier, which influences the outcome assessment in PCOS.


Subject(s)
Polycystic Ovary Syndrome , Psychometrics , Quality of Life , Humans , Polycystic Ovary Syndrome/psychology , Female , Quality of Life/psychology , Psychometrics/methods , Psychometrics/instrumentation , Adult , Surveys and Questionnaires , Cross-Sectional Studies , Reproducibility of Results , Translations , Young Adult , Pakistan , Translating
20.
BMC Public Health ; 24(1): 1570, 2024 Jun 11.
Article in English | MEDLINE | ID: mdl-38862965

ABSTRACT

BACKGROUND: Community interpreters (CIPs) play a crucial role in various community services, including healthcare, when service providers and users do not share a common language. However, there is a lack of evidence-based data on this population globally. This explorative cross-sectional study aims to gain a better understanding of CIPs and their work in Germany. METHODS: A nationwide online survey was conducted among CIPs in Germany to collect data on their qualification background, working conditions, mental health, interpreting-related psychosocial distress and sociodemographics. Participants were recruited through interpreting pools, training institutions and migrant organizations. Data were analyzed descriptively, dependent t-test, multiple logistic and hierarchical stepwise regression analyses were performed to predict participation in interpreting-specific training, interpreting competence and interpreting-related psychosocial distress. RESULTS: Across all 16 federal states, N = 873 responses were used for analysis. Most participants are female (74%), born abroad (77%) and have a high level of education (69%). The vast majority interpret occasionally in their leisure time (44%) and are self-employed/freelance (51%). 34% interpret solely or additional on a voluntary basis (unpaid). The median hours of interpreting per month are 10 h, 75% do not exceed 30 h. On average interpreters work in four different settings. 69% attended any kind of interpreting training with a median of 25 h in total. Interpreting in more settings emerged as an associated factor with participation in training. Of those who have never attended any training, 69% consider themselves as rather/very competent in interpreting. Interpreting more frequently, having less severe anxiety symptoms, getting higher and more often paid and being less satisfied with the payment is associated with self-reported interpreting competence. In total, 36% reported moderate or severe psychosocial distress regarding interpreting. Higher general psychosocial distress and depressive symptoms, higher interpreting frequency and lower payment satisfaction were found to be associated with higher distress regarding interpreting. Additionally, factors such as precarious work conditions, lack of recognition and discrimination (e.g. racism and sexism) were reported as distressing. CONCLUSION: This study provides a first comprehensive evidence-based national database on CIPs in Germany. The findings can be valuable for the development of qualifications, guidelines, policies and the process of professionalizing the field of CIPs.


Subject(s)
Translating , Humans , Cross-Sectional Studies , Germany , Female , Adult , Male , Middle Aged , Surveys and Questionnaires , Communication Barriers , Young Adult
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