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- Self-evaluation of communication experiences after laryngectomy (SECEL): translation and psychometric properties in european portuguesePublication . Guimarães, Isabel; Torrejano, Gabriela; Aires, Raquel; Freitas, Susana; Gonçalves, Filomena; Correia, Paula; Romeiro, Cláudia; Silvestre, Inês; Bom, Rita; Martins, Paulo; Santos, Ana RitaIntroduction: The patients’ perception of how communication dysfunction may cause a disadvantage is important information for the clinical decision-making process. Objectives: This study aimed to translate the self-evaluation of communication experiences after laryngectomy (SECEL) to the European Portuguese (EP) and to assess its feasibility, acceptability, reliability, and validity. Material and methods: A cross-sectional study was carried out, and a cluster sample of seven ENT outpatient clinics was drawn. The EP-SECEL was filled in by 129 people with laryngectomy, aged 29–81 years and 25 of those completed it in the second time. Patients have also filled in the European Organization for Research Treatment of Cancer Quality of Life Questionnaire (EORCT), the core quality of life questionnaire (QLQ-C30) and the 35-item Head and Neck module (H&N35). Results: The EP-SECEL has the same conceptual meaning, semantics, idiomatic, format and score equivalence as the original one. Psychometric analyses revealed that it is feasible (missing <1%, to fill out took about 15 minutes for most patients), acceptable (floor and ceiling effects inferior to 15%), reliable (excellent internal consistency, Cronbach’s alpha = 0.90, and moderate test-retest, Spearman’s rhô = 0.64), well-constructed (66% of the total variance is explained by exploratory factor analysis), significantly convergent (correlates with the EORTC QLQ-C30 and H&N35) and validly discriminates people with total and partial laryngectomy as well as people with different primary means-of-communication. Conclusions: This study supports that the EP-SECEL has sufficient psychometric qualities to be considered an adequate tool to be recommended for assessing health-related quality of life among laryngectomy patients.
- Predictors of drooling severity in people with Parkinson’s diseasePublication . Nascimento, David; Meira, Bruna; Garcez, Luís; Abreu, Daisy; Outeiro, Tiago; Guimarães, Isabel; Ferreira, Joaquim J.Background Drooling, defned as the unintentional loss of saliva from the anterior oral cavity, remains poorly understood in terms of the underlying clinical factors in people with Parkinson’s disease (PwP). This study aims to clarify these factors by analyzing predictors and secondarily the correlates with the severity of drooling in PwP. Methods We conducted a cross-sectional study involving 42 PwP with drooling and 59 without drooling. Clinical assess ments were performed, and the primary outcome was the item 2.2 Saliva and drooling of the Movement Disorder Society Unifed Parkinson’s Disease Rating Scale. The Mann–Whitney test was used to compare the distribution diferences in clinical variables between PwP with and without drooling. The Spearman test was used to examine correlations with drooling, and ordinal logistic regression was used to examine predictors of drooling. Results PwP with drooling showed signifcantly greater impairments in axial signs, posture, facial expression, speech, swallowing, oromotor, motor and non-motor domains than PwP without drooling. Longer disease duration, higher disease severity, levodopa equivalent daily dose, axial signs, unstimulated salivary fow rate, and impairments in speech, posture, facial expression, swallowing, oromotor, motor and non-motor domains were signifcantly correlated with a higher score on the item 2.2. Male sex, poorer swallowing, oromotor and speech functions were strong predictors of higher scores on the item 2.2 Saliva and drooling. Conclusions Male PwP with swallowing disorders, oromotor and speech impairments are signifcantly more likely to have severe drooling. Targeted interventions aimed at these swallowing, oromotor, and speech impairments may ofer promising approaches to reducing drooling severity in PwP.
- A criança com respiração oral crónica: emissão de ar nasal, motricidade orofacial e impacto na qualidade de vidaPublication . Bom, Rita; Nogueira Leitão Lima Grilo, Ana Margarida; Guimarães, IsabelIntrodução: A obstrução sistemática das vias aéreas superiores (VAS) é frequente em idades pediátricas, tem implicações na emissão de ar nasal e apresenta sintomas como, predomínio da respiração oral e alteração da motricidade orofacial, com impacto na qualidade de vida da criança. Objetivos: Medir a emissão de ar nasal em crianças com obstrução das VAS. Especificamente, verificar a relação entre a emissão de ar nasal, idade, sexo e motricidade orofacial e determinar o impacto dos sintomas nasais na qualidade de vida. Material e Métodos:Estudo transversal exploratório. Foi realizada a avaliação funcional da emissão de ar nasal (recurso a placa metálica), avaliação oromotora (utilizado o Protocolo de Avaliação da motricidade OroFacial, versão 2, PAOF-2) e perceção do impacto dos sintomas nasais na qualidade de vida (versão portuguesa do Nasal Obstruction Symptom Evaluation NOSE). Resultados: Participaram 62 crianças entre os 4;00 e os 9;11 anos. O valor médio total da emissão de ar nasal foi de 8.10 cm2, sem diferenças significativas quanto à idade, mas significativamente inferior no sexo masculino para a narina esquerda. Verificou-se correlação moderada significativa entre a emissão de ar nasal e a motricidade orofacial aos 4 anos e no sexo masculino. As crianças com mais sintomas evidenciaram maior impacto negativo significativo na qualidade de vida do que as com menos sintomas. Conclusão: A obstrução das VAS na criança relacionou-se com a motricidade orofacial tendo efeito na idade (4 anos) e no sexo masculino. O impacto negativo na qualidade de vida relacionou-se com maior número de sintomas.
- Economic burden of Parkinson’s disease and research trends: a bibliometric analysisPublication . Cunha, Maura; Almeida, Helena; Guimarães, Isabel; Ferreira, LaraBackground Parkinson’s disease (PD) is a neurodegenerative disorder associated with a range of motor and non-motor symptom leading to progressive disability that signifcantly impacts on health related-quality of life (HRQoL) and imposes a substantial economic burden. The overall trend and impact of research production on the economic burden of PD have not yet been documented. In this study, the objective is to describe, map and analyse the evolution and trend of research on the economic burden in PD. Therefore, the initial research questions were: (1) what are the main research keywords on costs in the feld of Parkinson’s disease? and (2) how do an author’s studies on the economic burden and costs of Parkinson’s disease infuence scientifc production? Methods: The data used were retrieved from the Web of Science over the past 25 years, from 1997 to 2022. A bibliometric analysis was performed on the basis of the number of articles, citations, published journals, authors, countries scientifc production and keywords plus. Results: A total of 140 articles that met the criteria were collected and analysed, covering 736 authors, 41 journals and 34 countries. The most productive country was the United States of America (80.71%) and, among the journals, the Movement Disorders journal was the one with the largest growth (n=27). According to the thematic map, the terms “quality of life”, “impact” and “illness” were considered as having a high level of centrality, a moderate density and a high frequency. In addition, the terms “quality-of-life”, “impact” and illness were the most relevant words. Conclusions This study provides an overview of global research trends on the economic burden of PD.
- Body image concerns in people who underwent a total laryngectomyPublication . Guimarães, Isabel; Torrejano, Gabriela; Aires, Raquel; Gonçalves, Filomena; Freitas, Susana Vaz; Correia, Paula; Romeiro, Cláudia; Silvestre, Inês; Bom, Rita; Martins, Paulo; Santos, Ana R.Abstract: Background: Body image is a potential psychological burden after total laryngectomy (TL) with devastating effects on patients’ health-related quality of life (HRQOL) and communication. This study focused on TL patients to determine the prevalence of dissatisfied body image and whether they have poorer HRQOL and difficulty adjusting to their new voice than TL patients with satisfied body image. It also aimed to investigate the potential predictors of body image. Methods: A multicenter cross-sectional study was conducted. For TL patients, the Body Image Scale (BIS), the European Organization for Research on Cancer Quality of Life Questionnaire, Core and Neck Module (EORTC QLQ C30 and EORCT H&N35), and the Self-Experiences of Communication after Laryngeal cancer (SECEL) were used. Patients were categorized as dissatisfied with their body image if the BIS score was ≥8. Multiple regression analysis was performed using the BIS as the dependent measure and HRQOL (QLQ C30 and H& N35) and communication (SECEL) as independent variables. Results: Overall, 31.3% of TL patients had dissatisfied body image, significantly worse HRQOL, and difficulty adjusting to their new voice than patients with satisfied body image. The regression model showed that social eating and socializing (H&N35) and adjustment to their new voice (SECEL) were independent predictors of body image. The model explained 52% of the variance. Conclusions: Screening TL patients at risk for body image concerns may help develop effective interventions to optimize HRQOL and patient communication.
- Voice handicap index: european portuguese versions, validity, and usefulnessPublication . Guimarães, Isabel; Torrejano, GabrielaAims: With regard to the Voice Handicap Index (VHI) in European Portuguese, the aims of this study were to: (i) Identify the versions currently in use; (ii) Analyze the process used for the linguistic cultural adaptation and the clinimetric properties; and (iii) Determine the clinical and scientifc usefulness. Study design: Systematic literature review. Materials and Methods: Two independent researchers searched the databases, open access repositories, and archives of two Portuguese scientifc journals. Clinimetric properties and clinical and scientifc usefulness were analyzed according to the international guidelines for patient reported outcome measures (PROMs). Results: In total, fve questionnaires were identifed in EP: the original VHI, two abbreviated versions - VHI-9i and VHI-10, and two adapted versions - pediatric (pVHI) and VHI for singers (SVHI). The VHI is unique as it provides evidence of all the ten recommended clinimetric properties. Conclusions: The VHI is recommended for clinical assessment and research, while the others have the potential to be recommended.
- Voice handicap index: versões em português europeu, validade e utilidadePublication . Guimarães, Isabel; Torrejano, GabrielaObjetivos: Relativamente ao Voice Handicap Index (VHI) em português europeu (PE) pretende-se: (i) Identifcar as versões em uso; (ii) Analisar os processos de adaptação linguístico-cultural e as propriedades clinimétricas e, (iii) Determinar a utilidade clínica e científca. Desenho do Estudo: Revisão sistemática da literatura. Material e Métodos: Dois investigadores independentes pesquisaram nas bases de dados, repositórios de acesso aberto e os arquivos de duas revistas científicas portuguesas. A análise foi realizada de acordo com as orientações internacionais para patient reported outcome measurements (PROMs). Resultados: Foram identifcados em PE o original VHI, as versões reduzidas - VHI-9 e VHI-10 -, e as versões pediátrica (pVHI) e para cantores (SVHI). O VHI é o único que apresenta evidência das propriedades clinimétricas essenciais. Conclusões: O VHI é recomendado para utilização na avaliação e na investigação, enquanto os restantes têm potencialidade para virem a ser recomendados.
- Voice handicap index: cut-off points for screening european portuguese with voice disordersPublication . Guimarães, Isabel; Torrejano, Gabriela; Aires, Raquel; Caetano, Mariana; Fernandes, António; Martins, Paulo; Luís, LeonorSummary: Objectives. To determine cut-off values of the Voice Handicap Index (VHI) and the shortened version (VHI-10) for European Portuguese (EP) with voice disorders. In addition, to analyze the discriminatory power of individual items of the VHI-10 and the ability to detect differences in various Ear Nose and Throat (ENT) diagnoses. Study Design. Cross-sectional cohort study. Methods. All participants completed the EP VHI and a 4-point self-assessment of voice disorder severity. The case group (subjects with voice disorders) underwent assessment through strobovideolaryngoscopy examinations by ENT surgeons and perceptual analyses by speech-language pathologists (SLPs). In contrast, the control group was evaluated solely by SLPs. Data were analyzed using a receiver-operating characteristic curve to determine the accuracy and cut-off values of the VHI and VHI-10. Results. The study involved a sample of 350 adults (171 cases and 179 controls), predominantly women aged 18–88 years. The area under curve (AUC) for VHI and VHI-10 was 0.997 [95% confidence interval (CI): 0. 992–1] and 0.998 [95% CI: 0.995–0.999], respectively. Optimal cut-off values were identified as 13.5 for VHI (0. 994 sensitivity and 0.989 specificity) and 5.5 for VHI-10 (0.977 sensitivity and 0.955 specificity). Each individual item within the VHI-10 significantly contributed to the overall assessment, exhibiting varying discriminatory power ranging from excellent (AUC = 0.937) to poor (AUC = 0.637). Significant differences were found in the case group between neurogenic disorders and healthy larynx (P = 0.014), structural and physiologic minor laryngeal abnormalities (P = 0.006), and inflammatory disorders (P = 0.043). Conclusions. The VHI and the VHI-10 exhibited accurate screening properties for predicting EP speakers with voice disorders.
- The reflux symptom score-12: cross-cultural adaptation and validation for european portuguese speakers with laryngopharyngeal refluxPublication . Guimarães, Isabel; Batista, Ana P.; Quintal, Aldora; Bom, Rita; Romeiro, Cláudia; Saraiva, Madalena; Cunha, Maura; Ferreira, Daniela B.; Correia, Paula; Almeida, Lina; Torrejano, GabrielaAbstract: Objectives. To translate and cross-culturally adapt the 12-item reflux symptom score (RSS-12) to European Portuguese (EP) and determine its clinimetric properties for symptomatic individuals with laryngopharyngeal reflux (LPR). Study design. Multinational cross-sectional cohort study. Methods. The English RSS-12 was cross-culturally adapted according to the recommendations of the international guidelines. The validation study included the completion of the RSS-12, reflux symptom index, and voice handicap index by symptomatic and asymptomatic subjects with LPR. The RSS-12 was completed a second time by symptomatic subjects. Nine clinimetric properties were analyzed according to the international guidelines for validation of patient-reported outcome measures. Results. The EP RSS-12 is equivalent to the English version (content, depth, and scoring). A total of 155 adults (84 with LPR symptoms) aged 21–78 years participated in the validation study. Statistical analyses revealed high internal consistency (Cronbach alpha > 0.90), high test-retest reliability (intraclass correlation coefficient > 0.70, P < 0.001), low measurement error (Standard measure error of 5.21 for RSS and 1.59 for quality of life), good content validity (omission data < 1% and item-total correlations > 0.652), good construct validity (61.9% of the total item variance with moderate item loadings), strong concurrent validity with reflux symptom index (rp = 0.772, P < 0.001) and moderate validity with voice handicap index (rp = 0.531, P < 0. 001), and signi5cantly known-groups validity (P < 0.001). The EP RSS-12 showed cross-cultural validity with French and Persian versions and high predictive validity with a cut-off value > 8 for a sensitivity of 91.7% and a specificity of 91.5%. Conclusions. The EP RSS-12 retained the features of the English version and is a reliable and valid patient-reported outcome measure for EP individuals with LPR in the study.
- Communication strategies for adults in palliative care: the speech-language therapists’ perspectivePublication . Dias, Cátia; Rodrigues, Inês Tello; Gonçalves, Hernâni; Duarte, IvoneBackground Communication disorders are a challenge that many patients in palliative care (PC) may encounter. This intervention area is emerging for the speech-language therapist (SLT), the professional who works in preventing, assessing, diagnosing, and treating human communication disorders. This study aims to identify and classify the communication strategies considered most important by SLTs for use in PC and evaluate whether there are any differences in perception regarding the importance of strategies between SLTs with and without PC experience. Methods This cross-sectional quantitative study was conducted using a survey, which employed a well-structured, self-completion questionnaire previously validated by a panel of experts with over six years of PC experience. Results The strategies rated as most important within each group were the following: (i) adjust the patient’s position and minimise environmental noise; (ii) establish eye contact and adjust the pace of speech; (iii) adjust the language level and raise one topic at a time; (iv) use images of the patient’s interests and their personal objects; (v) use orality and multimodal form; (vi) use simplified language and structured pauses; and (vii) use tables with images and books with pictures. Conclusions Verbal and non-verbal strategies were rated as highly important. There was no evidence of differences in perception in terms of importance between the SLTs with or without experience in PC, but more studies are needed to support this aspect. The patient’s communication ability is one of the cornerstones of PC quality. Through their actions, speech-language professionals could empower the patient with strategies so that they can autonomously and self-determinedly express their experiences and most significant needs.