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Young people leaving state care often experience hardship in many areas of their life. At a population level, their outcomes in early adulthood are poorer compared to general populations. Effective preparation for leaving care and post-care support systems is vital to improving outcomes. Individual and systemic support for young people to acquire Independent Living Skills (ILS) in the following eight ILS domains have been identified: Financial Management, Knowledge of Accessing Available Supports, Managing Housing, Education Planning, Job Seeking, Health Risk Management, Domestic and Self-help Task, and Managing Relationships. This systematic review aims to identify, summarise, and appraise longitudinal studies that address ILS across these ILS domains to understand better how outcomes could be improved. Seven databases (CINAHL, Embase, ProQuest, PsychINFO, PubMed, Scopus, and Web of Science) were searched on 20th July 2023. In total, twenty-seven studies published between 1994 and 2022 from various countries met the eligibility criteria. The included studies reported on 2-4 waves and adopted different methodological approaches. Study quality was scored using Qualsyst. Study characteristics and details of the interventions are presented in tables. Studies cover overlapping ILS domains, which are mapped in a matrix. Results revealed that nearly three-quarters (74% or 20 out of 27) of studies explored four or fewer of the eight ILS domains. The most frequent ILS domain covered was 'Knowledge of Accessing Available Supports' (19/27 studies). The main conclusion considers the concept of independence as a misnomer, with ILS covering multiple, intersecting, and interdependent domains, which ultimately help and hinder one another. Further research is required to adopt a more comprehensive approach encompassing all the domains to better inform policy, programs, and practice. A limitation is that a meta-analysis was not conducted for this review. This study registered a 'Protocol' with OSF Registries (DOI: 10.17605/OSF.IO/MJ3ZX) on June 5th, 2022.
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Vida Independente , Humanos , Estudos Longitudinais , Adolescente , Adulto JovemRESUMO
[This corrects the article DOI: 10.1371/journal.pone.0249088.].
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Background/Objectives: The Dysphagia Handicap Index (DHI) is commonly used in oropharyngeal dysphagia (OD) research as a self-report measure of functional health status and health-related quality of life. The DHI was developed and validated using classic test theory. The aim of this study was to use item response theory (Rasch analysis) to evaluate the psychometric properties of the DHI. Methods: Prospective, consecutive patient data were collected at dysphagia or otorhinolaryngology clinics. The sample included 256 adults (53.1% male; mean age 65.2) at risk of OD. The measure's response scale, person and item fit characteristics, differential item functioning, and dimensionality were evaluated. Results: The rating scale was ordered but showed a potential gap in the rating category labels for the overall measure. The overall person (0.91) and item (0.97) reliability was excellent. The overall measure reliably separated persons into at least three distinct groups (person separation index = 3.23) based on swallowing abilities, but the subscales showed inadequate separation. All infit mean squares were in the acceptable range except for the underfitting for item 22 (F). More misfitting was evident in the Z-Standard statistics. Differential item functioning results indicated good performance at an item level for the overall measure; however, contrary to expectation, an OD diagnosis presented only with marginal DIF. The dimensionality of the DHI showed two dimensions in contrast to the three dimensions suggested by the original authors. Conclusions: The DHI failed to reproduce the original three subscales. Caution is needed using the DHI subscales; only the DHI total score should be used. A redevelopment of the DHI is needed; however, given the complexities involved in addressing these issues, the development of a new measure that ensures good content validity may be preferred.
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PURPOSE: Oropharyngeal dysphagia is a common swallowing impairment post-stroke managed by speech language pathologists (SLP). This article aims to demonstrate a local know-do gap assessment for usual dysphagia care for patients undergoing inpatient stroke rehabilitation in primary healthcare in Norway, which included an assessment of the functional level of the patients and characteristics and outcomes of treatment. MATERIALS AND METHODS: In this observational study, we assessed the outcomes and interventions of patients admitted to inpatient rehabilitation following stroke. The patients received usual care from SLPs while the research team administered a dysphagia assessment protocol that included assessment of several swallowing domains including oral intake, swallowing, patient self-reported functional health status and health-related quality of life, and oral health. The treating SLPs documented the treatments provided in a treatment diary. RESULTS: Of 91 patients who consented, 27 were referred for SLP and 14 received treatment. During the median treatment period of 31.5 days (IQR = 8.8-57.0), patients received 7.0 treatment sessions (IQR = 3.8-13.5) of 60 minutes (IQR = 55-60). The patients who received SLP treatment demonstrated no/minor disorders (n = 7) and moderate/severe disorders (n = 7). Dysphagia treatments primarily included oromotor training and advice on bolus modification and were provided without association to dysphagia severity. Patients with moderate/severe swallowing impairments received slightly more SLP sessions over a longer time. CONCLUSIONS: This study identified gaps between current and best practices and opportunities to improve assessment, decision-making, and implement evidence-based practices.
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Transtornos da Comunicação , Transtornos de Deglutição , Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Humanos , Transtornos de Deglutição/diagnóstico , Transtornos de Deglutição/etiologia , Transtornos de Deglutição/terapia , Reabilitação do Acidente Vascular Cerebral/métodos , Pacientes Internados , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/terapia , Qualidade de Vida , Transtornos da Comunicação/complicações , Atenção Primária à SaúdeRESUMO
RATIONALE: Children with neurodevelopmental disorders such as attention-deficit hyperactivity disorder (ADHD), autism, developmental language disorder (DLD), intellectual disability (ID), and social (pragmatic) communication disorder (SPCD) experience difficulties with social functioning due to differences in their social, emotional and cognitive skills. Previous systematic reviews have focussed on specific aspects of social functioning rather than broader peer functioning and friendships. OBJECTIVE: To systematically review and methodologically appraise the quality and effectiveness of existing intervention studies that measured friendship outcomes for children with ADHD, autism, DLD, ID, and SPCD. METHOD: Following PRISMA guidelines, we searched five electronic databases: CINAHL, Embase, Eric, PsycINFO, and PubMed. Two independent researchers screened all abstracts and disagreements were discussed with a third researcher to reach consensus. The methodological quality of studies was assessed using the Cochrane Risk of Bias Tool for Randomised Trials. RESULTS: Twelve studies involving 15 interventions were included. Studies included 683 children with a neurodevelopmental disorder and 190 typically-developing children and diagnosed with either autism or ADHD. Within-group meta-analysis showed that the pooled intervention effects for friendship across all interventions were small to moderate (z = 2.761, p = 0.006, g = 0.485). The pooled intervention effect between intervention and comparison groups was not significant (z = 1.206, p = 0.400, g = 0.215). CONCLUSION: Findings provide evidence that some individual interventions are effective in improving social functioning and fostering more meaningful friendships between children with neurodevelopmental disorders and their peers. Effective interventions involved educators, targeted child characteristics known to moderate peer functioning, actively involved peers, and incorporated techniques to facilitate positive peer perceptions and strategies to support peers. Future research should evaluate the effectiveness of friendship interventions for children with DLD, ID and SPCD, more comprehensively assess peer functioning, include child self-report measures of friendship, and longitudinally evaluate downstream effects on friendship.
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Transtorno do Deficit de Atenção com Hiperatividade , Transtornos do Neurodesenvolvimento , Criança , Humanos , Amigos , Transtorno do Deficit de Atenção com Hiperatividade/terapia , Transtorno do Deficit de Atenção com Hiperatividade/psicologia , Grupo Associado , Ajustamento Social , Transtornos do Neurodesenvolvimento/terapiaRESUMO
To date, no consensus exists on the complex clinical decision-making processes involved in oropharyngeal dysphagia, or swallowing disorders. This study aimed to develop an international consensus on a clinical decision tree for the disease trajectory of oropharyngeal dysphagia in adults, taking into account physiological impairments of swallowing, risk factors for the development of complications from oropharyngeal dysphagia, and prognostic factors for treatment outcomes. Using the Delphi technique, consensus was achieved among dysphagia experts across 31 countries, resulting in a total of 10 physiological impairments, 23 risk factors and 21 prognostic factors identified as relevant factors in the clinical decision-making process. Factors most contributing to the severity of oropharyngeal dysphagia were 'Aspiration', 'Incomplete ejection or failure to eject aspirated materials from the airways', 'Weak or absent cough', 'Choking' and 'Sensory deficits in the oropharynx'. To connect the existing theoretical framework to clinical practice, future research will develop the current findings by corroborating the domains based on relevant factors for clinical decision making and those that contribute to the severity of oropharyngeal dysphagia.
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The provision of quality healthcare relies on scales and measures with robust evidence of their psychometric properties. Using measurement instruments with poor reliability, validity, or feasibility, or those that are not appropriate for the target diagnostic group or construct/dimension under consideration, may be unfavorable for patients, unproductive, and hinder empirical advancement. Resources from the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) group can assist in identifying and developing psychometrically sound measures. The COSMIN initiative is the only international, research-based practice taxonomy and methodological guidelines for measurement in healthcare. This manuscript aims to provide an accessible introduction to theories, principles and practices of psychometrics, instrument properties, and scale development, with applied examples from the COSMIN recommendations. It describes why measurement in healthcare is critical to good practice, explains the concepts of the latent variable and hypothetical construct and their importance in healthcare assessments, explores issues of flawed measurement and briefly explains key theories relevant to psychometrics. The paper also outlines a ten-step process to develop and validate a new measurement instrument, with examples drawn from a recently developed visuoperceptual measure for analysis of disordered swallowing to demonstrate key concepts and provides a guide for understanding properties of and terminology related to measurement instruments. This manuscript serves as a resource for healthcare clinicians, educators, and researchers who seek to develop and validate new measurement instruments or improve the properties of existing ones. It highlights the importance of using psychometrically sound measurement instruments to ensure high-quality healthcare assessments.
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Visuoperceptual evaluation of fiberoptic endoscopic evaluation of swallowing (FEES) is a commonly used assessment in dysphagia or swallowing disorders. Currently, no international consensus exists regarding which visuoperceptual measures to use for the analysis of FEES recordings. Moreover, existing visuoperceptual FEES measures are limited by poor and incomplete psychometric data, identifying an urgent need for developing a visuoperceptual measure to interpret FEES recordings. Following the COSMIN group's (COnsensus-based Standards for the selection of health Measurement INstruments) psychometric taxonomy and guidelines, this study aimed to establish the content validity of a new visuoperceptual FEES (V-FEES) measure in adults with oropharyngeal dysphagia. Using the Delphi technique, international consensus was achieved among dysphagia experts across 21 countries, resulting in a new prototype measure for V-FEES, comprising 30 items, 8 function testing items (i.e., specific tasks performed by patients while observing and rating items), and 36 unique operationalisations (i.e., defining items into measurable factors that could be measured empirically using visuoperceptual observation). This study supports good content validity for V-FEES, including participants' feedback on the relevance, comprehensiveness, and comprehensibility of the included items. Future studies will continue the instrument development process and determine the remaining psychometric properties using both the classic test theory (CTT) and item response theory (IRT) models.
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INTRODUCTION: This study examined speech-language pathologist (SLP)'s use of standardized language measures when assessing school-aged children. METHOD: A total of 335 SLPs provided information in a web-based survey regarding the standardized language measures they use for school-aged children. SLPs were asked to identify the domains targeted, purposes of use, and reasons for which regularly used standardized measures were chosen for use. RESULTS: Findings indicated that SLPs collectively use many standardized measures, although only a small number are used regularly. SLPs reported using standardized measures to assess domains that measures are not ideally designed for and for purposes that the measures are not ideally suited to assessing. SLPs reported selecting diagnostic measures based on psychometric properties but not for screening measures. Reasons for choice varied depending on the particular measure. CONCLUSION: Overall, findings indicated that SLPs need to place greater focus on evidence-based practice recommendations when selecting standardized measures for use with school-aged children. Implications for clinical practice and future directions are discussed.
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Patologia da Fala e Linguagem , Fala , Humanos , Criança , Patologistas , Inquéritos e Questionários , CogniçãoRESUMO
BACKGROUND: Evidence-based interventions are essential for school-aged children with intellectual disabilities to facilitate development and promote future independence. METHODS: Using a PRISMA approach, systematic screening of five databases was undertaken. Original randomised controlled studies with psychosocial-behavioural interventions were included where participants were school aged (5-18 yrs) with documented intellectual disability. Study methodology was assessed using the Cochrane RoB 2 tool. RESULTS: Two thousand three hundred and three records were screened with 27 studies included. Studies mainly included primary school participants with mild intellectual disabilities. Most interventions focused on intellectual skills (e.g., memory, attention, literacy and mathematics) followed by adaptive skills (e.g., daily living, communication, social and education/vocation) and some focused on a combination of these. CONCLUSION: This review highlights the gap in evidence-base for social, communication and education/vocation interventions with school-aged children with moderate and severe intellectual disability. Future RCTs that bridge this knowledge gap across ages and ability are required for best practice.
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Deficiência Intelectual , Criança , Humanos , Terapia Comportamental , Escolaridade , Instituições AcadêmicasRESUMO
PURPOSE: To identify the qualifications, professional roles and service practices of nurses, occupational therapists (OTs) and speech-language pathologists (SLPs) in the management of adults with oropharyngeal dysphagia (OD) in the Nordic countries. METHODS: A web-based survey was developed that consisted of 50 questions on respondent demographics, education, experience, roles and service practices provided for adults with OD. The survey was distributed to practicing nurses, OTs, and SLPs in five Nordic countries via professional associations, social media, online networks and snowballing. RESULTS: Data from 396 nurses, OTs and SLPs whom provided services for adults with OD revealed that the majority of respondents worked in acute care and inpatient rehabilitation facilities. Most respondents had minimal undergraduate education and practical clinical training in OD. Notable variances in roles and service practices in OD between professions and countries were found. OTs were the primary service provider for OD management in Denmark, while SLPs had this role in the other Nordic countries. Nurses were mainly involved in screening and some compensatory treatments in most Nordic countries. Limited use of evidence-based screening, non-instrumental or instrumental clinical assessments and rehabilitative therapeutic methods was evident. CONCLUSIONS: Study results highlight challenges in education and training of professionals responsible for the management of adults with OD in the Nordic countries. Increased use of evidence-based assessment and exercise-based treatments to improve swallowing are warranted. Adherence to European and international clinical practice guidelines for the management of adults with OD is recommended.
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This systematic review on non-instrumental clinical assessment in adult oropharyngeal dysphagia (OD) provides an overview of published measures with reported reliability and validity. In alignment with PRISMA, four databases (CINAHL, Embase, PsycINFO, and PubMed) were searched, resulting in a total of 16 measures and 32 psychometric studies included. The included measures assessed any aspect of swallowing, consisted of at least one specific subscale relating to swallowing, were developed by clinical observation, targeted adults, and were developed in English. The included psychometric studies focused on adults, reported on measures for OD-related conditions, described non-instrumental clinical assessments, reported on validity or reliability, and were published in English. Methodological quality was assessed using the standard quality assessment QualSyst. Most measures targeted only restricted subdomains within the conceptual framework of non-instrumental clinical assessments. Across the 16 measures, hypothesis testing and reliability were the most reported psychometrics, whilst structural validity and content validity were the least reported. Overall, data on the reliability and validity of the included measures proved incomplete and frequently did not meet current psychometric standards. Future research should focus on the development of comprehensive non-instrumental clinical assessments for adults with OD using contemporary psychometric research methods.
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Aims: Child maltreatment (CM) is a global public health and social problem, resulting in serious long-term health and socioeconomic consequences. As parents are the most common perpetrators of CM, parenting interventions are appropriate strategies to prevent CM. However, research on parenting interventions on CM has been hampered by lack of consensus on what measures are most responsive to detect a reduction in parental maltreating behaviours after parenting intervention. This systematic review aimed to evaluate the responsiveness of all current parent- or caregiver-reported CM measures. Methods: A systematic search was conducted in CINAHL, Embase, ERIC, PsycINFO, PubMed and Sociological Abstracts. The quality of studies and responsiveness of the measures were evaluated using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines for systematic reviews of patient-reported outcome measures. Only measures developed and published in English were included. Studies reporting data on responsiveness of the included measures were selected. Results: Sixty-nine articles reported on responsiveness of 15 identified measures. The study quality was overall adequate. The responsiveness of the measures was overall insufficient or not reported; high-quality evidence on responsiveness was limited. Conclusions: Only the Physical Abuse subscale of the ISPCAN Child Abuse Screening Tool for use in Trials (ICAST-Trial) can be recommended as most responsive for use in parenting interventions, with high-quality evidence supporting sufficient responsiveness. All other overall scales or subscales of the 15 included measures were identified as promising based on current data on responsiveness. Additional psychometric evidence is required before they can be recommended.
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Cuidadores , Maus-Tratos Infantis , Criança , Humanos , Revisões Sistemáticas como Assunto , Pais , Poder Familiar , Maus-Tratos Infantis/prevenção & controleRESUMO
Oropharyngeal dysphagia (OD) is prevalent in the elderly and persons with complex medical conditions, resulting in considerable medical and psychosocial consequences and reduced quality of life. Many prevalence studies regard OD in relation to age or diagnosis. Knowledge on the prevalence of OD in different healthcare settings is lacking. This systematic review aimed to estimate the prevalence of OD in adults admitted to hospitals, rehabilitation facilities, nursing homes, and palliative care facilities through meta-analyses. A systematic literature search was completed including all dates up to March 30, 2021. The methodology and reporting were based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). Forty-four out of 1,956 screened articles were deemed eligible. Considerable heterogeneity in definitions of OD and type and quality of selected outcome measures were observed. Overall within-group pooled prevalence estimates for OD determined by meta-analysis were 36.5% (95% CI 29.9 - 43.6) in the hospital setting, 42.5% (95% CI 35.8 - 49.5) in the rehabilitation setting, and 50.2% (95% CI 33.3-67.2) in nursing homes. No OD prevalence data were identified for palliative care facilities. Results for between-group analyses of OD prevalence estimates in the hospital setting were non-significant for type of assessment method, diagnostic group, and type of hospital ward, but indicated significantly higher prevalence estimates in nursing homes when using screening compared to patient-report. Future research should provide OD prevalence data for palliative care, achieve consensus in OD-related terminology when performing prevalence studies, and use screening and assessments with optimal diagnostic performance and psychometric properties.
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Transtornos de Deglutição , Humanos , Adulto , Idoso , Transtornos de Deglutição/epidemiologia , Transtornos de Deglutição/diagnóstico , Prevalência , Qualidade de Vida/psicologia , Hospitais , Atenção à SaúdeRESUMO
Dysphagia care and management may differ between countries and healthcare settings. This study aims to describe the management and care of dysphagia in rehabilitation centres and health houses across Norway. Two national surveys were developed targeting either managers or healthcare professionals. Both surveys focused on staff and client populations; screening and assessment of dysphagia; dysphagia management and interventions; staff training and education; and self-perceived quality of dysphagia care. A total of 71 managers and clinicians from 45 out of 68 identified rehabilitation centres and health houses in Norway completed the surveys. The resulting overall response rate was 72.1%. Significant differences in dysphagia care and management were identified between rehabilitation services across Norway. Rehabilitation centres and health houses often had neither a speech therapist among their staff nor had access to external healthcare professionals. Screening was most frequently performed using non-standardised water swallows and only limited data were available on non-instrumental assessments. None of the respondents reported having access to instrumental assessments. Dysphagia interventions mainly consisted of compensatory strategies, including bolus modification, with very infrequent use of rehabilitative interventions, such as swallow manoeuvres. Although almost half of all respondents perceived the overall quality of care for clients with eating and swallowing problems as good, lack of awareness of dysphagia and its symptoms, consequences and options for treatment may have influenced quality ratings. There is a need to raise awareness of dysphagia and provide training opportunities for healthcare professionals in both screening and assessment, and dysphagia care and management.
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Introduction. Patient self-evaluation is an important aspect in the assessment of dysphagia and comprises both Functional Health Status (FHS) and Health-Related Quality of Life (HR-QoL). As many measures combine both FHS and HR-QoL, disease-related functioning cannot be distinguished from disease-related quality of life as experienced by the patient. Moreover, current patient self-reported measures are limited by poor and incomplete data on psychometric properties. Objective. This study aimed to establish content validity for the development of two new self-reported measures on FHS and HR-QoL in adults with oropharyngeal dysphagia (OD), in line with the psychometric taxonomy and guidelines from the COSMIN group (COnsensus-based Standards for the selection of health Measurement INstruments). Methods. Using the Delphi technique, international expert consensus was achieved; participants and patients with dysphagia evaluated relevance, comprehensiveness, and comprehensibility of definitions of relevant constructs (i.e., dysphagia, FHS and HR-QoL) and potential items. Results. A total of 66 Delphi participants from 45 countries achieved consensus across two rounds. The Delphi study resulted in two prototype measures, the Functional health status measure of Oropharyngeal Dysphagia (FOD) and the health-related Quality of life measure of Oropharyngeal Dysphagia (QOD), consisting of 37 and 25 items, respectively. Minimal revisions were required based on feedback by patients. Conclusions. This study provides evidence of good content validity for both newly developed prototype measures FOD and QOD. Future studies will continue the process of refining the measures, and evaluate the remaining psychometric properties using both Classic Test Theory (CTT) and Item Response Theory (IRT) models.
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Swallowing is a complex function that relies on both brainstem and cerebral control. Cerebral neurofunctional evaluations are mostly based on functional magnetic resonance imaging (fMRI) and positron emission tomography (PET), performed with the individual laying down; which is a non-ecological/non-natural position for swallowing. According to the PRISMA guidelines, a review of the non-invasive non-radiating neurofunctional tools, other than fMRI and PET, was conducted to explore the cerebral activity in swallowing during natural food intake, in accordance with the PRISMA guidelines. Using Embase and PubMed, we included human studies focusing on neurofunctional imaging during an ecologic swallowing task. From 5948 unique records, we retained 43 original articles, reporting on three different techniques: electroencephalography (EEG), magnetoencephalography (MEG) and functional near infra-red spectroscopy (fNIRS). During swallowing, all three techniques showed activity of the pericentral cortex. Variations were associated with the modality of the swallowing process (volitional or non-volitional) and the substance used (mostly water and saliva). All techniques have been used in both healthy and pathological conditions to explore the precise time course, localization or network structure of the swallowing cerebral activity, sometimes even more precisely than fMRI. EEG and MEG are the most advanced and mastered techniques but fNIRS is the most ready-to-use and the most therapeutically promising. Ongoing development of these techniques will support and improve our future understanding of the cerebral control of swallowing.
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Our systematic review and meta-analysis of pharyngeal electrical stimulation (PES) and neuromuscular electrical stimulation (NMES) in patients with oropharyngeal dysphagia (OD) is the first paper (Part I) [...].
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People with oropharyngeal dysphagia (OD) are at risk of developing aspiration pneumonia. However, there is no "best practice" for oral health interventions to improve swallowing-related outcomes, the incidence of aspiration pneumonia, and oral health in people with OD. Systematic literature searches were conducted for oral health interventions in OD in PubMed, Embase, CINAHL, and PsycINFO until July 2021. Original articles published in English and reporting pre- and post-intervention measurements were included. The methodology and reporting were guided by the PRISMA checklist. The methodological quality of the eight included studies was rated using the QualSyst critical appraisal tool. The oral health interventions in people with OD were diverse. This study shows little evidence that regular oral care and the free water protocol or oral disinfection reduced the incidence of aspiration pneumonia in people with OD. Oral cleaning, twice a day with an antibacterial toothpaste in combination with intraoral cleaning or the free water protocol, proved to be the most promising intervention to improve oral health. The effect of improved oral health status on swallowing-related outcomes could not be established. Increasing awareness of the importance of oral health and implementing practical oral care guidelines for people involved in the daily care of people with OD are recommended.
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Dysphagia (swallowing disorders) and dysphonia (voice disorders) are both common disorders within the area of laryngology [...].