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OBJECTIVES: To investigate the perspectives and experiences of parents of infants with ankyloglossia in Australia. METHOD: Two hundred and sixty-seven parents across Australia responded to an online survey including their experiences of having a child with ankyloglossia. Descriptive statistics were used to analyse quantitative data. RESULTS: Participants were from all Australian states and territories, with the majority residing in New South Wales and Victoria. Ankyloglossia diagnoses typically occurred within the first two weeks of life, driven mainly by difficulties with feeding. Lactation consultants played a prominent role in diagnosis, particularly in rural areas. Surgical interventions were common, with frenotomy using scissors or scalpel being the primary treatment. Aftercare recommendations, including stretching the frenotomy wound, were prevalent. Most parents received education about ankyloglossia, primarily through verbal and written information. Parents generally reported high satisfaction with the effectiveness of treatments, favouring surgical interventions. However, satisfaction with health professionals' support did not consistently correlate with the likelihood of consenting to the treatment again, and those who conducted their own research on ankyloglossia expressed lower satisfaction with health professionals' support. CONCLUSIONS: The experiences of Australian parents in their infant's diagnosis, management and education of ankyloglossia varied greatly. Clinical guidelines for all relevant health professionals are needed to ensure standardised diagnosis and management processes. In future, this will help guide evidence-based diagnosis and intervention for infants with ankyloglossia.
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Anquiloglosia , Padres , Humanos , Padres/psicología , Femenino , Anquiloglosia/cirugía , Masculino , Australia , Recién Nacido , Encuestas y Cuestionarios , Cuidadores/psicología , Lactante , AdultoRESUMEN
AIM AND RATIONALE: Problems with manual dexterity and cognition impact the everyday performance of people with multiple sclerosis (PwMS). Accumulated findings point to the relationship between deficits in manual dexterity and auditory domains of cognition with a lack of evidence on visuospatial and verbal aspects of cognitive functioning. Therefore, this study explores the relationship between manual dexterity and cognition in a cohort of PwMS. METHOD: This cross-sectional study collected data from 63 PwMS aged 22 to 55 through a convenient sampling method. Participants were diagnosed with relapsing-remitting multiple sclerosis (RRMS). Cognition was measured using a multi-domain computerized cognitive testing, NeuroTrax, and manual dexterity was measured using a 9-hole peg assessment. Spearman correlation was used to identify the correlation among cognition subtests as well as with manual dexterity. Linear regression analysis was also conducted to identify whether manual dexterity predicts cognitive functioning. RESULTS: A significant negative correlation was found between 9-hole peg scores and global cognitive scores (GCS), r = -0.34, p = 006. The manual dexterity scores were also shown to predict GCS, R2= 0.165, p = 0.001. CONCLUSION: Manual dexterity was found to not only predict cognitive dysfunction but was also associated with multiple cognitive domains. Understanding the relationship between manual dexterity and cognition and the inferred progression of deficits can assist clinicians to provide interventions at earlier stages of disease progression to potentially increase daily functioning and quality of life (QoL).
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Esclerosis Múltiple Recurrente-Remitente , Humanos , Masculino , Femenino , Adulto , Estudios Transversales , Persona de Mediana Edad , Adulto Joven , Esclerosis Múltiple Recurrente-Remitente/fisiopatología , Esclerosis Múltiple Recurrente-Remitente/complicaciones , Pruebas Neuropsicológicas , Disfunción Cognitiva/etiología , Disfunción Cognitiva/fisiopatología , Cognición/fisiología , Destreza Motora/fisiología , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/fisiopatologíaRESUMEN
INTRODUCTION: The retention of resuscitation skills is a widespread concern, with a rapid decay in competence frequently following training. Meanwhile, training programmes continue to be disconnected with real-world expectations and assessment designs remain in conflict with the evidence for sustainable learning. This study aimed to evaluate a programmatic assessment pedagogy which employed entrustment decision and the principles of authentic and sustainable assessment (SA). METHODS: We conducted a prospective sequential explanatory mixed methods study to understand and address the sustainable learning challenges faced by final-year undergraduate paramedic students. We introduced a programme of five authentic assessments based on actual resuscitation cases, each integrating contextual elements that featured in these real-life events. The student-tutor consensus assessment (STCA) tool was configured to accommodate an entrustment scale framework. Each test produced dual student led and assessor scores. Students and assessors were surveyed about their experiences with the assessment methodologies and asked to evaluate the programme using the Ottawa Good Assessment Criteria. RESULTS: Eighty-four students participated in five assessments, generating dual assessor-only and student-led results. There was a reported mean score increase of 9% across the five tests and an 18% reduction in borderline or below scores. No statistical significance was observed among the scores from eight assessors across 420 unique tests. The mean student consensus remained above 91% in all 420 tests. Both student and assessor participant groups expressed broad agreement that the Ottawa criteria were well-represented in the design, and they shared their preference for the authentic methodology over traditional approaches. CONCLUSION: In addition to confirming local sustainability issues, this study has highlighted the validity concerns that exist with conventional resuscitation training designs. We have successfully demonstrated an alternative pedagogy which responds to these concerns, and which embodies the principles of SA, quality in assessment practice, and the real-world expectations of professionals.
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Competencia Clínica , Evaluación Educacional , Resucitación , Humanos , Estudios Prospectivos , Evaluación Educacional/métodos , Competencia Clínica/normas , Resucitación/educación , Resucitación/normas , Femenino , Masculino , Técnicos Medios en Salud/educación , Evaluación de Programas y Proyectos de Salud/métodos , AdultoRESUMEN
BACKGROUND: Dysphagia affects over half of adults after stroke. Dysphagia rehabilitation aims to improve swallowing and reduce negative outcomes for these adults. However, significant variability exists in dysphagia rehabilitation. Research is needed to explore the underlying clinician-specific and workplace factors that contribute to variability in dysphagia rehabilitation after stroke. AIM: To explore factors influencing speech pathology practice in dysphagia rehabilitation after stroke. METHODS & PROCEDURES: We used a phenomenological approach with an interpretivist perspective. Twenty speech pathologists working in dysphagia rehabilitation participated from different workplace settings around Australia. Five semi-structured focus groups were conducted online. Data were inductively analysed using thematic analysis with a coding reliability method. OUTCOMES & RESULTS: Four themes were discussed within focus groups: (1) relationship between experienced and less experienced clinicians: 'Following what other people have done', (2) need for collaborative learning: 'A safe space to share and train', (3) variation between settings impacts on continuity of care: 'There's a difference between community and acute', and (4) working effectively with multidisciplinary teams (MDT): 'An MDT which can listen to the voice of speech pathology'. CONCLUSIONS & IMPLICATIONS: Relationships between senior and junior speech pathologists, within speech pathology and MDT, and across inpatient and community settings influenced speech pathology practice. Flattened hierarchies in speech pathology, collaborative learning in workplaces, mutual respect within teams and connection across inpatient and community settings could improve the quality and consistency of dysphagia rehabilitation after stroke. WHAT THIS PAPER ADDS: What is already known on this subject Dysphagia rehabilitation can improve swallowing after a stroke. However, dysphagia rehabilitation is characterised by variability in clinical practice. Clinician-specific and workplace factors influence clinical practice and may contribute to variability in dysphagia rehabilitation. What this study adds Professional relationships influence speech pathologists' clinical practice, including relationships between senior and junior clinicians, between inpatient and community settings and with peers and multidisciplinary teams. Workplace norms and hierarchies, poor continuity of care between settings and competing priorities from other disciplines can hinder dysphagia rehabilitation. However, collaborative learning, positive workplace cultures and respectful transdisciplinary care can improve the quality and consistency of clinical practice. What are the clinical implications of this work? Flattening hierarchies in the workplace can foster a safe learning space. Further, questioning workplace norms and seeking out peer learning within and across settings can build clinical skills and confidence. Developing positive workplace cultures that support continuous development may be key for empowering speech pathologists to provide high-quality and consistent dysphagia rehabilitation.
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Trastornos de Deglución , Grupos Focales , Investigación Cualitativa , Patología del Habla y Lenguaje , Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular , Humanos , Trastornos de Deglución/rehabilitación , Trastornos de Deglución/etiología , Patología del Habla y Lenguaje/métodos , Rehabilitación de Accidente Cerebrovascular/métodos , Accidente Cerebrovascular/complicaciones , Femenino , Masculino , Adulto , Australia , Persona de Mediana Edad , Grupo de Atención al PacienteRESUMEN
BACKGROUND: Spectral Optical Coherence Tomography (OCT) and Visual Evoked Potentials (VEPs) have both emerged as potentially useful biomarkers of cognitive decline in people with multiple sclerosis (PwMS). Their combined use may provide additional predictive value for identifying disease impact, progression, and remyelination capacity above-and-beyond what is captured using either approach alone. OBJECTIVE: We examined the relationship between OCT/VEP measures and cognitive functioning in 205 PwMS. OCT measures included Retinal Nerve Fiber Layer Volume (RNFLV), Papillo-Macular Bundle Volume (PBMV), and Macular Volume (MV). VEP measures included latency of the P100, and inter-ocular latency. Cognitive performance was evaluated across seven separate domains of performance, and for overall cognition, using the NeuroTrax computerized testing battery. RESULTS: Both OCT and VEP measures were significantly correlated with cognitive performance across several domains. Linear regression models that controlled for the influence of visual acuity revealed (1) that reduced MV was significantly predictive of poorer visual-spatial functioning, and (2) that delayed VEP latency was significantly predictive of performance in global cognitive functioning and visual-spatial functioning, after controlling for multiple comparisons. Among PwMS with normal visual acuity, PwMS with a combination of both relatively low MV and delayed VEP latency tended to have poorer performance in the domains of global, executive, and visual-spatial functioning compared to PwMS with both high MV and normal VEP latency. CONCLUSION: Approaches that combine the use of OCT and VEP measures can enhance insight into underlying factors that contribute to variance in cognitive functioning in PwMS.
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Esclerosis Múltiple , Humanos , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/diagnóstico por imagen , Potenciales Evocados Visuales , Tomografía de Coherencia Óptica/métodos , Retina/diagnóstico por imagen , CogniciónRESUMEN
BACKGROUND: Multiple Sclerosis (MS), a chronic disease of the central nervous system (CNS), affects functional ability and quality of life (QoL). Depression, fatigue, and disability status are among the many factors that have been shown to impact QoL in people with MS, but the extent to which MS-related cognitive impairment is related to QoL is understudied in the literature. OBJECTIVE: The purpose of this study was to determine relevant predictors of QoL from a wide list of symptoms including physical disability, and a multi-dimensional computerized cognitive assessment battery (CAB), depression, fatigue, and demographic variables (including employment status). In addition, the unique predictive power of cognitive impairment on QoL was explored in relation to other common factors of disease impact. METHODS: 171 people with MS (PwMS) were evaluated with a computerized assessment battery (CAB), EDSS examination, and validated Patient Reported Outcome (PRO) measures (Multiple Sclerosis Impact Scale, MSIS-29; Beck Depression Inventory - Second Edition BDI-2; and the Modified Fatigue Impact Scale, MFIS). RESULTS: 171 PwMS were included [Age: 46.02 years ± 9.85, 124 (72.5%) female]. Depression and fatigue scores were highly correlated with MSIS-29. EDSS, unemployment, memory, executive functioning, and motor skills were moderately correlated with MSIS-29. Predictors of QoL were EDSS, depression, fatigue, executive functioning, and attention. Attention and executive functioning were predictive of QoL even after controlling for demographic variables, fatigue, depression, and physical disability status. CONCLUSION: Findings indicate the need for comprehensive and quantified evaluation of all factors associated with disease burden, which will ultimately serve to improve the QoL in PwMS through more targeted and patient-centered care.
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Disfunción Cognitiva , Esclerosis Múltiple , Humanos , Femenino , Persona de Mediana Edad , Masculino , Esclerosis Múltiple/diagnóstico , Calidad de Vida/psicología , Depresión/psicología , Disfunción Cognitiva/complicaciones , Fatiga/psicologíaRESUMEN
Purpose: To explore the perspectives and practices of speech-language pathologists on dosage of swallowing exercises in stroke rehabilitation.Method: Online focus groups involved 20 speech-language pathologists working in various settings across Australia. Focus group data were recorded, deidentified, and analysed using inductive thematic analysis guided by an interpretivist phenomenological approach.Result: Analysis resulted in four main themes: (1) "Getting the most bang for your buck": Importance of dosage in swallowing, (2) "No patient is identical": Personalising swallowing exercise dosage to the patient, (3) "You've got what you should do, and then what you can do": Gap between recommendations and practical application, and (4) "Not much guidance out there about dosage": More research needed to guide dosage. Speech-language pathologists agreed that dosage was theoretically important for swallowing exercises, but practical application of dosage was impacted by patient factors, limited access to resources, and lack of research-based guidelines.Conclusion: Speech-language pathologists reported trying to provide optimal care despite multiple barriers to prescribing dosages of swallowing exercises in practice. Personalising exercise dosage to the patient, creative clinician strategies, improved and equitable access to resources, and research-based guidelines on swallowing exercise dosages are needed to address these barriers.
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OBJECTIVES: To investigate the opinions and practices of health professionals involved in ankyloglossia diagnosis and management in Australia. METHOD: Two hundred and thirty-seven health professionals across Australia responded to an online survey including their diagnostic and management practice of ankyloglossia. Descriptive statistics, content analysis and thematic analysis were used to analyse quantitative data and open-ended responses, respectively. RESULTS: Most (91.6%) respondents reported they are responsible for the assessment and diagnosis of ankyloglossia in their clinical practice. A majority (56.7%) reported using more than one assessment tool in clinical practice. Less than half (46.4%) reported providing treatment to manage ankyloglossia. Surgical management was used by 44.5%, and 56.4% used non-surgical management as their primary treatment of ankyloglossia. Of the total sample, 26.6% had completed no further training or professional development in the field. 46% of respondents stated they always educate parents about ankyloglossia diagnoses, whereas 29.5% reported they always educate parents about management of ankyloglossia. Of respondents, a high level of confidence was reported by 62.6% of health professionals in the assessment of infants with ankyloglossia. Of those who perform surgical management, 53.7% reported feeling extremely confident in their skills. Fifty-two percent of respondents reported they were dissatisfied with the current service delivery for infants with ankyloglossia. CONCLUSIONS: The diagnosis, management and education practices varied greatly amongst health professionals in Australia. Clinical guidelines for all relevant health professionals are needed to ensure standardised diagnosis and management processes. In future, this will help guide evidence-based diagnosis and intervention for infants with ankyloglossia.
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Anquiloglosia , Lactante , Humanos , Anquiloglosia/cirugía , Encuestas y Cuestionarios , Australia , Padres , Personal de Salud , Frenillo Lingual/cirugíaRESUMEN
PURPOSE: To investigate the prevalence and management of ankyloglossia for infants in Central Australia. METHOD: Retrospective chart review consisting of a medical file audit of infants (n = 493) <2 years old diagnosed with ankyloglossia from January 2013 to December 2018 in the primary hospital in Central Australia. Patient characteristics, reason for diagnosis, reason for procedure and outcomes of procedures routinely recorded in the patient clinical files were recorded. RESULTS: The overall prevalence of ankyloglossia in this population was 10.2%. Frenotomy was performed in 97.9% of infants diagnosed with ankyloglossia. Infants with ankyloglossia were more likely to be male (58% vs 42%), diagnosed and managed with a frenotomy on the third day of life. Most ankyloglossia diagnoses were identified by a midwife (>92%). Most frenotomy procedures were completed by lactation consultants who were also midwives (99%) using blunt-ended scissors. More infants were classified with posterior ankyloglossia than anterior ankyloglossia (23% vs 15%). A frenotomy procedure resolved feeding issues in 54% of infants with ankyloglossia. CONCLUSIONS: The prevalence of ankyloglossia and rate of frenotomy procedures were high when compared to previous reports in the general population. Frenotomy for ankyloglossia in infants with breastfeeding difficulties was found to be effective in more than half of the reported sample, improving breastfeeding and decreasing maternal nipple pain. A standardised approach and validated screening or comprehensive assessment tool for the identification of ankyloglossia is indicated. Guidelines and training for relevant health professionals on non-surgical management of the functional limitations of ankyloglossia are also recommended.
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Anquiloglosia , Femenino , Lactante , Humanos , Masculino , Preescolar , Anquiloglosia/cirugía , Frenillo Lingual/cirugía , Estudios Retrospectivos , Prevalencia , Resultado del Tratamiento , Lactancia Materna , Australia/epidemiologíaRESUMEN
INTRODUCTION: Multiple Sclerosis (MS) is a chronic inflammatory and degenerative disease of the central nervous system (CNS). The severity of disability in people with MS (PwMS) is generally measured with the Expanded Disability Status Scale (EDSS). A variant of MS known as 'benign MS' (BMS) has been defined as an EDSS score of 3 or lower, combined with a disease duration of 10 years or longer; however, there is disagreement in the field about whether BMS really exists. Given that the EDSS does not capture cognitive issues, communication dysfunction, fatigue, depression, or anxiety properly, its ability to accurately represent disability in all PwMS, including BMS, remains questionable. METHODS: In this study, 141 persons with BMS (PwBMS) were included, consisting of 115 females (82%) and 26 males (18%) with a mean age of 50.8 (±8.68). A computerized test battery (NeuroTrax®) was used to assess cognition, covering seven cognitive domains (memory, executive function, visual-spatial processing, verbal function, attention, information processing, and motor skills). Fatigue was measured using the Fatigue Severity Scale (FSS). The Beck Depression Inventory (BDI) was used to assess symptoms of depression. Cognitive impairment was defined for this study as when someone has a score lower than 85 in at least two subdomains of the cognitive test battery. Rates of impairment were compared to 158 persons with non-benign MS (PwNBMS; with a disease duration of 10 years and longer and an EDSS score higher than 3) and 487 PwMS with a disease duration of fewer than 10 years. RESULTS: Cognitive impairment was found in 38% of PwBMS and in 66% of PwNBMS (p<0.001). In PwBMS, the lowest rate of impairment was found in the verbal function domain (18%) and the highest rate of impairment in the domain of information processing (32%). Fatigue and depression were found in 78% and 55% of all PwBMS, with no difference in these rates between PwBMS and PwNBMS (p = 0.787 and p = 0.316 resp.) CONCLUSION: Cognitive impairment, fatigue and depression are common among people with an EDSS-based definition of benign MS. These aspects should be incorporated into a new and better definition of truly benign MS.
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Disfunción Cognitiva , Esclerosis Múltiple , Masculino , Femenino , Humanos , Persona de Mediana Edad , Depresión/etiología , Depresión/psicología , Disfunción Cognitiva/diagnóstico , Disfunción Cognitiva/etiología , Fatiga/diagnóstico , Fatiga/etiología , CogniciónRESUMEN
BACKGROUND: Neurologists' perceptions of the presence of cognitive impairment (CI) in people with multiple sclerosis (PwMS) may not always align with findings of objective cognitive assessment. The accuracy of self-reported CI in PwMS can also be highly variable across individuals, and may not align with objective measurement of cognitive disturbances. Research suggests that additional factors impact perceived cognitive ability, such as depression and fatigue. Objective cognitive screening regardless of patient or neurologist perception has been recommended but still is often limited in routine care. Moreover, comprehensive neuropsychological assessment is even less routinely done. OBJECTIVE: To explore how neurologists' perceptions of PwMS' CI compare to the perception of the patient by determining whether PwMS and their clinicians are accurate in detecting the presence and degree of CI as defined by a multi-domain validated computerized test battery in PwMS, as well as investigate what factors influence perception of CI in each group. METHODS: PwMS completed a computerized multi-domain cognitive testing battery, and self-reported measures of disease impact (MSIS-29), fatigue (MFIS), and depression (BDI-II). Disability was assessed by the clinician using the Expanded Disability Status Scale (EDSS). Clinicians and patients also provided an estimation of cognitive deficits along a Likert scale. RESULTS: In this cohort of PwMS (N=202, age range: 20 to 88, gender: 71% female), their level of accuracy in detecting attention deficits (k = -.028, p = .010) was low but statistically significant. In contrast, clinicians' accuracy in detecting global CI (k = -.037, p < .001) and a number of specific domain deficits was moderate. Fatigue (p < .001) and cognitive performance (p = .012) significantly predicted patient perceived cognitive deficits. Clinician perceived cognitive performance was significantly predicted by multiple factors: cognitive scores (p < .001), physical disability (p = .011), age (p = .021), and depression (p = .038). CONCLUSION: The need to objectively screen for CI in PwMS, regardless of perception, can be aided by a better understanding of the agreement and discrepancies between the patient and clinician regarding perceived cognitive disturbances and the presence of CI defined by a multi-dimensional objective screening battery.
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Trastornos del Conocimiento , Disfunción Cognitiva , Esclerosis Múltiple , Humanos , Femenino , Adulto Joven , Adulto , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años , Masculino , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/psicología , Disfunción Cognitiva/diagnóstico , Disfunción Cognitiva/etiología , Trastornos del Conocimiento/diagnóstico , Trastornos del Conocimiento/etiología , Fatiga/diagnóstico , Fatiga/etiología , Fatiga/psicología , PercepciónRESUMEN
PURPOSE: To investigate the dosages of swallowing exercises reported in intervention studies on post-stroke dysphagia through systematic review. METHODS: Five electronic databases were searched from inception until February 2022 with reference tracing of included studies. Studies were included, where adults with post-stroke dysphagia received rehabilitative, behavioural swallowing exercises, pre/post outcomes were reported, and intervention dosage was described in detail, including frequency, intensity, time, and type of exercise. Two reviewers independently screened studies and rated quality using ASHA Levels of Evidence tool. Data was tabulated and narratively described. RESULTS: 54 studies were included with a total 1501 participants. Studies included 28 randomised controlled trials, 8 non-randomised controlled trials, 12 pre/post studies, 3 retrospective case controls and 3 case studies. Results showed inconsistent reporting of intervention dosage, with intensity the least consistently reported dosage component. While swallowing intervention was most commonly provided five times per week for four weeks, there was a wide breadth of type, frequency, intensity and duration of swallowing exercises reported. Dosage under-reporting and variation was particularly observed in "standard care" co-interventions or control groups. Study strengths included following PRISMA guidelines, providing a comprehensive review of swallowing exercise methodology and dosages, and including non-English studies. The limitation was lack of meta-analysis due to the heterogeneity of included studies. CONCLUSIONS: Dosages of swallowing exercises are inconsistently reported and vary significantly in post-stroke dysphagia studies. Results indicate the need for consistent and comprehensive dosage reporting in dysphagia studies, and for further research into evidence-based principles to optimise swallowing exercise dosages. SYSTEMATIC REVIEW REGISTRATION NUMBER: 131294.
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Trastornos de Deglución , Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular , Adulto , Humanos , Trastornos de Deglución/etiología , Deglución , Estudios Retrospectivos , Accidente Cerebrovascular/complicacionesRESUMEN
This study investigated how swallowing exercise dosage is recorded, and what swallowing exercise dosages are reported in a stroke rehabilitation setting. We additionally explored the relation between mean daily swallowing repetitions and likelihood of improvement in functional swallowing status and considered how swallowing exercise dosages in practice compared to evidence-based principles of neural plasticity and strength training. We audited medical records for 42 patients with post-stroke dysphagia admitted to an inpatient rehabilitation unit over 18 months. Data were collected on participant characteristics, swallowing exercises and dosages, and clinical outcomes. The relation between dosage and outcomes was investigated using logistic regression analysis. On average, patients were seen for a median of 2.4 swallowing intervention sessions per week (IQR: 1.7) over 21 days (IQR: 16) and received a median 44.5 swallowing exercise repetitions per session (IQR: 39.6). Results indicated variable reporting of swallowing exercise dosages. Frequency, intervention duration, exercise type, and number of repetitions were routinely recorded in medical records, while intensity, session length, content, and adherence to home exercise programs were not. Frequency of swallowing intervention was lower in practice compared to research studies, and swallowing exercises did not follow specificity or progressive resistance principles. Likelihood of improvement in swallowing status was partially explained by age (B = -.015, p = .007) but not by mean daily swallowing exercise repetitions. This study illustrates dosages of swallowing exercises used in clinical practice. Results highlight the need for improved consideration and reporting of dosage, and application of evidence-based principles to swallowing exercise dosages.
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Trastornos de Deglución , Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular , Humanos , Rehabilitación de Accidente Cerebrovascular/métodos , Trastornos de Deglución/rehabilitación , Deglución , Terapia por Ejercicio/métodosRESUMEN
BACKGROUND: There is growing recognition that communication can be affected in multiple sclerosis (MS) and can negatively impact relationships, employment and psychological well-being. Some persons with MS (PwMS) implement strategies to facilitate their communication; however, some do not. Most PwMS who report communication changes do not engage with speech-language pathology (SLP) services. This raises concerns that a large portion of communication changes associated with MS go under-recognized and unmanaged. Little is known about what PwMS want and need to facilitate effective communication. AIM: To explore what PwMS want and need to better manage their communication changes. METHODS & PROCEDURES: Three focus groups were conducted online using Zoom, with a total of 12 PwMS. Participants were an opportunistic sample of PwMS within Australia recruited via advertisements distributed to various MS organizations and clinics. Data were transcribed verbatim and analysed using thematic content analysis to provide a qualitative analysis of the data. OUTCOMES & RESULTS: Two main themes emerged: (1) accessible knowledge and a holistic approach; and (2) partnerships. Specifically, the identified wants and needs of participants included: (1) assessment; (2) information; (3) raising awareness; (4) support groups; (5) a whole-person approach to intervention; (6) geographically and economically accessible and navigable services; (7) effective patient-physician interactions; and (8) a multidisciplinary team-based approach (e.g., SLP, psychology, neuropsychology, occupational therapy). CONCLUSIONS & IMPLICATIONS: This study identified a wide range of unmet wants and needs of PwMS related to communication changes. Participants wanted improved collaborative partnerships with healthcare professionals to better manage their communication changes. For example, healthcare professionals could ask PwMS about potential communication changes, provide education and make appropriate referrals. Education and information provision could focus on communication changes in MS, factors that trigger or exacerbate communication changes, impacts, self-management strategies, and available supports and services. Specific implications for clinical practice and future research are suggested in this paper, including ideas for patient education materials and content, suggestions for communication-specific screening and information that could be shared in patient-physician interactions, the development of guidelines to systematically screen, assess, manage and monitor communication changes in MS, and the design of evidence-based communication interventions for this clinical population. The results from this study can be used to guide the design of supports and services to help PwMS better manage communication changes, with the aim to reduce the negative impacts. WHAT THIS PAPER ADDS: What is already known on this subject PwMS can experience communication changes across a range of domains, including speech, voice, fluency, expressive and receptive language, and cognitive-linguistic functions. These changes can have profound and far-reaching negative impacts on educational and vocational outcomes, social participation, relationships, psychological well-being, and quality of life. Most PwMS who report communication changes do not engage with SLP services. There has been little research exploring what PwMS want and need to help manage their communication changes. What this paper adds to the existing knowledge This research is the first study of its kind that sets out specifically to explore what PwMS want and need to better manage their communication changes. This study increases our understanding of, and provides valuable insights into, the specific types of supports and services PwMS desire to access, and the partnerships and kinds of interactions PwMS dream of having with healthcare professionals to manage these changes. This information can facilitate the development of future interventions to manage communication changes in MS. What are the potential or actual clinical implications of this work? PwMS wanted healthcare professionals to ask about potential communication changes, provide education and make appropriate referrals. When providing education and information on communication changes in MS, healthcare professionals should focus on covering symptoms, triggers, impacts, self-management strategies, and available supports and services. There is a timely need to develop guidelines and interventions to manage communication changes in MS to reduce their negative impacts.
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Esclerosis Múltiple , Comunicación , Grupos Focales , Personal de Salud/psicología , Humanos , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/terapia , Calidad de VidaRESUMEN
As a global health emergency, the rapid spread of the novel coronavirus disease (COVID-19) led to the implementation of widespread restrictions (e.g., quarantine, physical/social distancing measures). However, while these restrictions reduce the viral spread of COVID-19, they may exacerbate behavioural and cognitive symptoms in dementia patients and increase pressure on caregiving. Here, we aimed to assess the impact of COVID-19 and related restrictions on both carers and people living with dementia across the world. We conducted an international survey (Australia, Germany, Spain, and the Netherlands) to assess the impact of COVID-19 on carers and people living with dementia. People with dementia experienced worsened neuropsychiatric symptoms since the outbreak of COVID-19, most commonly, depression, apathy, delusions, anxiety, irritability, and agitation. Regression analyses revealed that limited understanding of the COVID-19 situation and not living with the carer was associated with worsened neuropsychiatric symptoms. Carers also reported a decline in their own mental health, increased stress and reduced social networks as a result of COVID-19 and related restrictions. Regression analyses revealed uncertainty about the future and loneliness were associated with worsened carer mental health. Findings from this study will inform strategies for the development of support services and compassionate protocols that meet the evolving needs of those living with dementia and their carers.
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COVID-19/psicología , Cuidadores/psicología , Demencia/psicología , Salud Mental/estadística & datos numéricos , Encuestas y Cuestionarios , Adulto , Anciano , Anciano de 80 o más Años , Ansiedad/psicología , Australia , COVID-19/epidemiología , COVID-19/virología , Demencia/terapia , Femenino , Alemania , Humanos , Masculino , Salud Mental/normas , Persona de Mediana Edad , Países Bajos , Pandemias/prevención & control , Cuarentena/psicología , Análisis de Regresión , SARS-CoV-2/fisiología , EspañaRESUMEN
BACKGROUND: The relationship between swallowing outcomes and radiotherapy dose to dysphagia and aspiration-related structures (DARS) may be different following definitive versus postoperative radiotherapy (PORT) for mucosal head and neck cancer (HNC) and has not been well-studied. METHOD: Patient- and clinician-reported swallowing measures were prospectively collected at six time points from baseline to 24 months postradiotherapy HNC. Radiotherapy plans were retrospectively analyzed to assess dose delivered to DARS. The association between swallowing outcomes and participant demographics, tumor characteristics, and radiotherapy dose in definitive and postoperative treatment cohorts was assessed. RESULTS: Ninety-three participants who received radiotherapy for HNC were included in the analysis (n = 49 definitive radiotherapy for laryngeal/pharyngeal primary tumors and n = 44 postoperative PORT for predominantly oral cavity/salivary gland tumors). Participants undergoing PORT had lower doses to DARS than those undergoing definitive RT. High dose to the pharyngeal constrictors and base of tongue for definitive RT and the esophageal inlet, supraglottic larynx and cervical esophagus for the PORT group were associated with worse swallowing function. CONCLUSION: Radiation dose to DARS is associated with post-treatment swallowing outcomes. These dose/outcome relationships may vary between the definitive and postoperative settings.
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Trastornos de Deglución , Neoplasias de Cabeza y Cuello , Exposición a la Radiación , Radioterapia de Intensidad Modulada , Deglución , Trastornos de Deglución/etiología , Neoplasias de Cabeza y Cuello/radioterapia , Neoplasias de Cabeza y Cuello/cirugía , Humanos , Dosificación Radioterapéutica , Radioterapia de Intensidad Modulada/efectos adversos , Estudios RetrospectivosRESUMEN
Purpose: Transoral robotic surgery (TORS) is most commonly undertaken as a minimally invasive approach for early staged oropharyngeal cancers (OPC), with good expectations for a functional recovery. A small number of patients, however, require TORS for recurrent or advanced OPC tumours. Their prospects for longer term recovery of communication and swallowing are both unreported and hypothesised to be poorer than the majority of TORS cases. This case-series describes the recovery of swallowing and communication function post-TORS for this unique group of patients.Method: Consecutive recruitment was carried out prospectively at a quaternity oncology referral centre. Participants were aged 18 years and older, with reconstruction involving a free-flap and tracheostomy. Patients were assessed using Fibreoptic Endoscopic Evaluation of Swallowing, and clinician and patient-reported outcomes 12-months post-TORS. Their pre-operative baseline and three-month post-TORS FOIS scores were collated retrospectively.Result: Six participants were recruited over an 18-month period of which three patients underwent TORS for recurrent, and three for advanced OPC. Those with recurrent-OPC did not return to their baseline diet and demonstrated post-swallow silent aspiration of pharyngeal residue. Three of the six were rehabilitated back to their baseline intelligibility (100%).Conclusion: TORS in the recurrent OPC setting appears congruent with high rates of silent aspiration and prolonged reliance on a feeding tube due to oropharyngeal dysphagia, as well as compromised intelligibility. This is the first study that evaluates this instrumentally and provides clinically relevant evidence to inform practice.
Asunto(s)
Neoplasias Orofaríngeas , Procedimientos Quirúrgicos Robotizados , Comunicación , Deglución , Humanos , Neoplasias Orofaríngeas/patología , Neoplasias Orofaríngeas/cirugía , Estudios Retrospectivos , Procedimientos Quirúrgicos Robotizados/efectos adversos , Resultado del TratamientoRESUMEN
Infant dysphagia is commonly managed using thickened formulas. Substantial research investigates thickening of a variety of beverages for adults and children, yet few studies address the unique considerations of thickened formula for infants. Understanding the consistency and behaviour of thickened formula will guide clinicians and parents to make informed decisions to minimise risk of aspiration. To investigate the effect of time and storage temperature on the flow properties of thickened formula, four formulas and two thickeners currently utilised at a major metropolitan children's hospital in Australia were tested in combinations, at refrigerated and room temperatures. Their flow properties were measured at three time-points (baseline, 1 h, 24 h) using the International Dysphagia Diet Standardisation Initiative (IDDSI) Flow Test, the current clinical standard for classifying drinks based on flow properties. A combination of paired t tests, Wilcoxon Signed-Rank tests, repeated measures analysis of variance (ANOVA) and Cohen's d was used to statistically compare flow properties and determine the significance of the observed data. At baseline, 98% (n = 48) of the thickened formula bottles were measured as thinner than the "mildly thick" IDDSI category to which they were prepared. Conversely, at 24 h, 17% were measured thicker than "mildly thick" whilst 10% measured too thin for the category "mildly thick". Refrigerated samples increased in thickness more significantly over time compared to those stored at room temperature. Two of the formulas, when thickened, resulted in a foamy mixture non-compatible with IDDSI Flow Test measurement. As a result, these two formulas were not subjected to further testing. All the tested commercial products behaved differently to each other and were unstable over varying times and temperatures. This finding indicates the need for improved guidelines regarding preparation and storage of thickened fluids. Further investigation is recommended into the chemical processes underlying the observed deviations.
Asunto(s)
Trastornos de Deglución , Bebidas/análisis , Niño , Trastornos de Deglución/terapia , Aditivos Alimentarios/análisis , Humanos , Lactante , Temperatura , ViscosidadRESUMEN
Purpose: Communication changes in multiple sclerosis (MS) are under-explored and under-recognised. Persons with MS (PwMS) are experts in their condition and play a valuable role in informing clinicians and researchers of their condition. This study aimed to investigate the perspectives of PwMS on: (1) MS-related communication changes, (2) the impact of these communication changes across key aspects of a person's life, including work/studies, relationships, and general quality of life, and (3) strategies used to facilitate communication in daily interactions.Method: Two-hundred and sixty PwMS were recruited internationally and completed an online questionnaire. Content analysis was used to analyse open-ended questionnaire responses.Result: One-hundred and ninety-seven (75.8%) participants reported communication changes, including language, cognitive, speech, voice, and fluency changes. Participants described a variety of personal and environmental factors that influence communication negatively, such as fatigue, stress, and heat. Communication changes were reported to impact on psychological wellbeing, interpersonal relationships, participation and identity in the workforce and career pathways, and tertiary studies. Around 40% of participants reported using a range of overt and covert strategies to manage communication changes. Only 11.2% (n = 22/197) of participants who reported communication changes accessed speech-language pathology (SLP) services.Conclusion: PwMS can experience a wide spectrum of communication changes. These communication changes can have a profound and far-reaching impact on psychological wellbeing and societal participation. Engagement with SLP services is limited compared to the reported prevalence of communication changes. There is a need to raise awareness of the role of SLP in service provision for PwMS to manage communication changes. This paper discusses and provides suggestions for SLP services for PwMS with communication changes. There is a timely need to develop evidence-based interventions to support PwMS manage communication changes and reduce their impact.
Asunto(s)
Esclerosis Múltiple , Comunicación , Humanos , Lenguaje , Esclerosis Múltiple/complicaciones , Calidad de Vida , Encuestas y CuestionariosRESUMEN
BACKGROUND: Persons with multiple sclerosis (MS) can experience language-related symptoms such as difficulty with word finding, understanding verbal information, and structuring discourse. These symptoms have negative psychological and interpersonal consequences. Studies exploring characteristics of language impairment in MS are limited. The aim of this study was to investigate what symptom-related (eg, fatigue), demographic (eg, age), clinical (eg, MS type), social network, and quality of life (QOL) variables are associated with language impairment in MS. METHODS: Participants were recruited internationally to complete an online questionnaire. A forward stepwise regression analysis was run with the dependent variable being a language impairment index from the Communication and Language Assessment questionnaire for persons with Multiple Sclerosis (CLAMS). Nineteen independent variables were entered into the regression. RESULTS: Two hundred and two participants completed the questionnaire. The CLAMS language impairment score was significantly associated with self-reported cognitive impairment, speech and voice impairment, yes/no response to a binary question on presence of language impairment, group membership and participation, and QOL. The adjusted R2 value was 0.717 (P < .001). CONCLUSIONS: Self-reported language impairment in MS is significantly associated with several symptom-related, social network, and QOL variables. These results provide an early model of language impairment in MS to guide future studies of treatment approaches and causative relationships between variables.