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Aphasia research has traditionally been considered a (unidisciplinary) niche topic in medical science. The international Collaboration of Aphasia Trialists (CATs) is a global collaboration of multidisciplinary aphasia researchers. Over the past 10 years, CATs has collectively taken a rigorous approach to systematically address persistent challenges to aphasia research quality. This article summarizes the achievements over the past decade. CATs' achievements include: standardizing terminology, advancing aphasia research design by aphasia expert consensus recommendations, developing a core data set and intervention descriptors, facilitating the involvement of people with the language impairment aphasia in the research process, translating, and adapting assessment tools into global languages, encouraging data sharing, developing innovative secondary data analysis methodologies and promoting the transparency and accessibility of high quality aphasia research reports. CATs' educational and scientific achievements over the past 10 years far exceed what individual researchers in the field could have ever achieved.
Subject(s)
Aphasia , Stroke , Humans , Stroke/complications , Aphasia/therapy , Language Therapy , Language , ConsensusABSTRACT
INTRODUCTION AND AIMS: Stroke survivors with aphasia (impaired language/communication) have poor outcomes and gaps in the clinical implementation of best practice contribute to this. Little is known, however, about speech pathologist perspectives on the touchpoints (key moments shaping experiences) in the clinical care pathway that have the greatest impact on service delivery nor how this varies by geographical location. We explored the experiences of speech pathologists who provide aphasia services to establish priorities for improvement and design. METHODS AND ANALYSIS: This is the initial experience gathering and priority identification stage of an experience-based co-design (EBCD) project. Speech pathologists were recruited from 21 geographically diverse Hospital and Health Services in Queensland, Australia. Speech pathologists working in acute, rehabilitation and community services shared positive and negative experiences of delivering aphasia care in interviews and focus groups. Experiential data were analysed using qualitative thematic analysis to determine touchpoints. Priorities for service design were identified using an adapted nominal group technique. RESULTS: Speech pathologists (n = 62) participated in 16 focus groups and nine interviews and shared 132 experiences of delivering aphasia care. Providing care in teams with poor awareness of the impacts of aphasia was identified as a key challenge, as poor patient-provider communication was perceived to increase risk of adverse outcomes for patients. Speech pathologists identified areas for improvement related to their own professional needs (e.g., greater access to clinical supervision); collaborative health care (e.g., better coordination and interdisciplinary care to increase therapy time); and the service context and environment (e.g., psychological services able to support diverse communication needs). CONCLUSIONS: Speech pathologist delivery of aphasia services could be improved through increased access to clinical supervision, opportunities for peer debriefing and interdisciplinary care. Priorities for service design varied by geographical location and included: education to support care transitions (remote areas), improved referral pathways and service linkage (regional areas) and dedicated aphasia staffing (metropolitan areas). PATIENT OR PUBLIC CONTRIBUTION: A consumer advisory committee comprising people with aphasia (n = 3, authors K.M., K.D. and B.A.), their significant others (n = 2, authors J.D. and P.M.), and a Cultural Capability Officer (author G.B.) guided this research. The team: (1) reviewed participant information; (2) co-designed surveys and workshop resources; (3) copresented research outcomes and contributed to publications. Research questions and study design (e.g., analysis methods and assessment measures) were developed by the research team (authors L.A., V.J.P., D.A.C. and S.J.W.).
Subject(s)
Aphasia , Focus Groups , Qualitative Research , Speech-Language Pathology , Humans , Aphasia/therapy , Queensland , Interviews as Topic , Female , Male , Stroke/therapy , Stroke/complicationsABSTRACT
INTRODUCTION: Outcome measurement instruments (OMIs) are used to gauge the effects of treatment. In post-stroke aphasia rehabilitation, benchmarks for meaningful change are needed to support the interpretation of patient outcomes. This study is part of a research programme to establish minimal important change (MIC) values (the smallest change above which patients perceive themselves as importantly changed) for core OMIs. As a first step in this process, the views of people with aphasia and clinicians were explored, and consensus was sought on a threshold for clinically meaningful change. METHODS: Sequential mixed-methods design was employed. Participants included people with post-stroke aphasia and speech pathologists. People with aphasia were purposively sampled based on time post-stroke, age and gender, whereas speech pathologists were sampled according to their work setting (hospital or community). Each participant attended a focus group followed by a consensus workshop with a survey component. Within the focus groups, experiences and methods for measuring meaningful change during aphasia recovery were explored. Qualitative data were transcribed and analysed using reflexive thematic analysis. In the consensus workshop, participants voted on thresholds for meaningful change in core outcome constructs of language, communication, emotional well-being and quality of life, using a six-point rating scale (much worse, slightly worse, no change, slightly improved, much improved and completely recovered). Consensus was defined a priori as 70% agreement. Voting results were reported using descriptive statistics. RESULTS: Five people with aphasia (n = 4, > 6 months after stroke; n = 5, < 65 years; n = 3, males) and eight speech pathologists (n = 4, hospital setting; n = 4, community setting) participated in one of four focus groups (duration: 92-112 min). Four themes were identified describing meaningful change as follows: (1) different for every single person; (2) small continuous improvements; (3) measured by progress towards personally relevant goals; and (4) influenced by personal factors. 'Slightly improved' was agreed as the threshold of MIC on the anchor-rating scale (75%-92%) within 6 months of stroke, whereas after 6 months there was a trend towards supporting 'much improved' (36%-66%). CONCLUSION: Our mixed-methods research with people with aphasia and speech pathologists provides novel evidence to inform the definition of MIC in aphasia rehabilitation. Future research will aim to establish MIC values for core OMIs. PATIENT OR PUBLIC CONTRIBUTION: This work is the result of engagement between people with lived experience of post-stroke aphasia, including people with aphasia, family members, clinicians and researchers. Engagement across the research cycle was sought to ensure that the research tasks were acceptable and easily understood by participants and that the outcomes of the study were relevant to the aphasia community. This engagement included the co-development of a plain English summary of the results. Advisors were remunerated in accordance with Health Consumers Queensland guidelines. Interview guides for clinicians were piloted by speech pathologists working in aphasia rehabilitation.
Subject(s)
Aphasia , Benchmarking , Focus Groups , Stroke Rehabilitation , Humans , Aphasia/rehabilitation , Aphasia/psychology , Male , Female , Middle Aged , Aged , Quality of Life , Outcome Assessment, Health Care , Adult , Stroke/complications , Stroke/psychology , Qualitative Research , Surveys and QuestionnairesABSTRACT
OBJECTIVE: To identify and agree on what outcome domains should be measured in research and clinical practice when working with stroke survivors who have dysarthria. DESIGN: Delphi process, two rounds of an online survey followed by two online consensus meetings. SETTING: UK and Australia. PARTICIPANTS: Stroke survivors with experience of dysarthria, speech and language therapists/pathologists working in stroke and communication researchers. METHODS: Initial list of outcome domains generated from existing literature and with our patient and public involvement group to develop the survey. Participants completed two rounds of this survey to rate importance. Outcomes were identified as 'in', 'unclear' or 'out' from the second survey. All participants were invited to two consensus meetings to discuss these results followed by voting to identify critically important outcome domains for a future Core Outcome Set. All outcomes were voted on in the consensus meetings and included if 70% of meeting participants voted 'yes' for critically important. RESULTS: In total, 148 surveys were fully completed, and 28 participants attended the consensus meetings. A core outcome set for dysarthria after stroke should include four outcome domains: (a) intelligibility of speech, (b) ability to participate in conversations, (c) living well with dysarthria, (d) skills and knowledge of communication partners (where relevant). CONCLUSIONS: We describe the consensus of 'what' speech outcomes after stroke are valued by all stakeholders including those with lived experience. We share these findings to encourage the measurement of these domains in clinical practice and research and for future research to identify 'how' best to measure these outcomes.
Subject(s)
Delphi Technique , Dysarthria , Stroke Rehabilitation , Stroke , Humans , Dysarthria/etiology , Dysarthria/rehabilitation , Stroke/complications , Female , Male , Outcome Assessment, Health Care , Middle Aged , Australia , Consensus , Aged , Surveys and Questionnaires , United KingdomABSTRACT
BACKGROUND: Based on stakeholder conversations, speech and language therapists have anecdotally observed cases of dysphagia with suspected laryngeal hypersensitivity. These presentations have been coined as 'muscle tension dysphagia' often with concurrent laryngeal sensitivity symptoms. However, the role of laryngeal hypersensitivity in dysphagia is not fully understood. Knowledge user engagement highlights a lack of clarity around diagnosis and investigative approaches, limited clinical guidance and inconsistent practice, which leads to inequity in service delivery and care. AIM: To identify and present the published literature regarding the definitions and clinical identification tools used during the management of laryngeal hypersensitivity related dysphagia. METHODS & PROCEDURES: A scoping review was conducted following Joanna Briggs Institute methodology and EQUATOR PRISMA-ScR guidance. Patient and stakeholder engagement was embedded at each review stage. The protocol was registered with the Open Science Framework: DOI 10.17605/OSF.IO/CUXYN. A multidatabase search strategy identified literature published between 2012 and 2022. A narrative description was used to report the study findings. OUTCOMES & RESULTS: The search identified 2590 citations. The full paper screening was completed on 88 studies, with 17 studies included in data extraction. There was a wide range of terminology and assessment approaches which varied across different clinical settings. The most cited term was 'muscle tension dysphagia'. The most common assessments tools were videofluoroscopy, fibreoptic endoscopic evaluation of swallowing and videostroboscopy, predominantly used in speech and language therapy and/or Ear, Nose and Throat settings. Gastroesophageal and respiratory investigations were less frequently cited. MAIN CONTRIBUTION: This review details the current evidence related to the terminology and assessment tools cited in laryngeal hypersensitivity related dysphagia to improve clinician knowledge and understanding. Patient and stakeholder involvement indicated that future research needs to: optimize consensus of terminology, and improve consistent identification methods, service provision and treatment approaches. CONCLUSIONS & IMPLICATIONS: This review highlights the lack of consistent terminology across the literature. A wide range of assessment tools report nonspecific positive clinical features and a lack of significant instrumental assessment findings. Patients and stakeholders identify the research priorities should improve clinician awareness, knowledge, guidance and evidence to support patient care. WHAT THIS PAPER ADDS: What is already known on the subject Swallowing difficulties can occur in adults for a number of different reasons, such as neurological, respiratory or physiological conditions. Swallowing difficulties with no evidence of biomechanical or structural impairment on instrumental assessment and of unknown cause (termed idiopathic functional dysphagia or medically unexplained dysphagia) is a poorly understood phenomenon. More recently, concurrent oropharyngeal dysphagia and laryngeal hypersensitivity and/or muscle tension have been posited as a potential underlying mechanism. What this study adds to the existing knowledge This scoping review contributes to our expanding knowledge of the role of laryngeal hypersensitivity in dysphagia by providing an overview of the current evidence related to the terminology and assessment tools reported in the literature. Embedded patient and stakeholder involvement further deepens real-world insights into the increased referrals for these individuals with increasing uncertainty in how to best assess, manage and support patients. Patients equally have reported that reduced professional awareness and inequalities in service delivery pathways result in poor patient experience and quality of life, and healthcare economic burden. What are the potential or actual clinical implications of this work? This scoping review draws our attention to an area of practice which has received little attention in both clinical practice and academic research. First, the study raises awareness of this population and the impact for services, speech and language therapists and clinicians; and second, highlights evidence-practice gaps with seldom consistency in the use of terminology and assessment approaches. The study provides priority research themes to expand our knowledge and understanding, as guided by the literature and patient and stakeholder input.
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BACKGROUND: Aphasia impacts communication and relationships. While counselling is increasingly recognised as a component of the speech-language therapy role, the success of conversation partner training is typically measured in terms of communication alone. This scoping review aimed to describe how successful conversation is currently measured with couples-with and without aphasia, to inform the development of an ecologically valid measure for couples with aphasia. METHODS AND PROCEDURES: The scoping review was reported in alignment with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Extensions for Scoping Reviews (PRISMA-SCR). MEDLINE, EMBASE, CINAHL and PsycINFO databases were searched for conversation treatment studies for couples with and without aphasia. Patient-reported outcome measures (PROMs) were extracted from included studies and screened against the three-tier model of situated language to shortlist those that measure everyday communication. Items within shortlisted PROMs were further described using the refined International Classification of Functioning, Disability and Health linking rules. RESULTS: Following screening and full-text review, 46 studies were included, consisting of 24 studies conducted with couples with aphasia and 22 studies conducted with couples without aphasia. For couples with aphasia, 13 PROMs were identified that measured everyday communication. Of these, 23% were dyadic (i.e., measured from the perspectives of both members of the couple); however, they usually only appraised the communication behaviours of the person with aphasia. For couples without aphasia, eight PROMs were identified that measured everyday communication; all were dyadic and measured both attitudes and communication behaviours of both partners. CONCLUSION: Conversation relies on the interaction of two people, and success in conversation is best rated by those having the conversation. The use of PROMs is recommended as part of person and relationship-centred practice; however, there is currently no validated PROM for conversation in aphasia that considers the perspectives and behaviours of both the person with aphasia and their communication partner. The PROM items identified in this study will form the basis of future research to develop a PROM for couples' conversations in aphasia. WHAT THIS PAPER ADDS: What is already known on the subject Communication partner training (CPT) for couples, where one person has aphasia, can improve conversation skills and enhance relationships. Clinician-rated measures, such as conversation analysis, have been used to measure the outcomes of CPT. However, there is a lack of person-centred or self-rated outcome measurement instruments. that is, patient-reported outcome measures (PROMs) for couples' conversations in aphasia. What this paper adds to existing knowledge We have identified outcome measurement instruments used in conversation treatment studies for couples with and without aphasia. We found that most PROMs used in aphasia treatment studies were not dyadic, that is, they did not include the self-report of both communication partners. In contrast, the PROMs used with couples without aphasia were dyadic and contained items that measured a more complex range of both partners' emotions, behaviours and attitudes. What are the potential or actual clinical implications of this work? This study provides insights into the content and characteristics of PROMs for couples' conversation therapy and may assist clinicians in selecting outcome measurement instruments in their practice.
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BACKGROUND: A purpose-built outcome measure for assessing communication effectiveness in patients with an artificial airway is needed. OBJECTIVES: The objective of this study was to develop the Communication with an Artificial airway Tool (CAT) and to test the feasibility and to preliminary evaluate the clinical metrics of the tool. METHODS: Eligible patients with an artificial airway in the Intensive Care Unit were enrolled in the pilot study (Crit-CAT). The CAT was administered at least twice before and after the communication intervention. Item correlation analysis was performed. Participant and family member acceptability ratings and feedback were solicited. A qualitative thematic analysis was undertaken. RESULTS: Fifteen patients with a mean age of 53 years (standard deviation [SD]: 19.26) were included. The clinician-reported scale was administered on 50 attempts (100%) with a mean completion time of 4.5 (SD: 0.77) minutes. The patient-reported scale was administered on 46 out of 49 attempts (94%) and took a mean of 1.5 (SD: 0.39) minutes to complete. The CAT was feasible for use in the Intensive Care Unit, with patients with either an endotracheal or tracheostomy tube, whilst receiving invasive mechanical ventilation or not, and while using either verbal or nonverbal modes of communication. Preliminary establishment of responsiveness, validity, and reliability was made. The tool was acceptable to participants and their family members. CONCLUSION: The clinician-reported and patient-reported components of the study were feasible for use. The CAT has the potential to enable quantifiable comparison of communication interventions for patients with an artificial airway. Future research is required to determine external validity and reliability.
Subject(s)
Communication , Respiration, Artificial , Humans , Middle Aged , Pilot Projects , Feasibility Studies , Reproducibility of ResultsABSTRACT
OBJECTIVE: To describe the costs of hospital care for acute stroke for patients with aphasia or dysarthria. DESIGN: Observational study from the Stroke123 project. SETTING: Data from patients admitted with stroke (2009-2013) from 22 hospitals in Queensland participating in the Australian Stroke Clinical Registry (AuSCR) were linked to administrative datasets. PARTICIPANTS: Communication impairments were identified using International Classification of Diseases, 10th Revision, Australian Modification codes. Overall, 1043 of 4195 (25%) patients were identified with aphasia (49% were women; median age 78 years; 83% with ischemic stroke), and 1005 (24%) with dysarthria (42% were women; median age 76 years; 85% with ischemic stroke). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Linked patient-level, hospital clinical costing related to the stroke, were adjusted to 2013/2014 Australian dollars (AU$, US$ conversion x 0.691) using recommended national price indices and multivariable regression analysis with clustering by hospital performed. RESULTS: Compared with patients without aphasia, the median hospital costs/patient were greater for those with aphasia for medical (aphasia AU$2273 vs AU$1727, P<.001), nursing (aphasia AU$3829 vs AU$2748, P<.001) and allied health services (aphasia AU$1138 vs AU$720, P<.001). Similarly, costs were greater for patients with dysarthria compared with those without dysarthria. Adjusted median total costs were AU$2882 greater for patients with aphasia compared with patients without aphasia (95% confidence interval, AU$1880-3884), and AU$843 greater for patients with dysarthria compared with those without dysarthria (95% confidence interval, AU$-301 to 1987). CONCLUSIONS: People with communication impairment after stroke incur greater hospital costs, in particular for medical, allied health, and nursing resources.
Subject(s)
Aphasia , Communication Disorders , Ischemic Stroke , Stroke , Humans , Female , Aged , Male , Dysarthria/etiology , Australia , Stroke/complications , Aphasia/etiology , Communication Disorders/etiology , Hospitalization , CommunicationABSTRACT
INTRODUCTION: Breast screening is an effective way to improve the early detection of breast cancer and reduce mortality. Unfortunately, low uptake of screening is often reported. This study aimed to explore the support needs of women residing in Newport West, Wales, to participate in breast screening. METHODS: Group Concept Mapping, a structured participatory consensus approach, was used as the method. Participants completed three activities either online or offline: brainstorming to generate statements, sorting statements into themed categories; rating statements for perceived importance and accessibility (easy to get). RESULTS: Thirty-seven participants from seven ethnic groups took part. Sixty-three statements (items of support) were generated and sorted into seven conceptually similar clusters (themes) (Trusting that I will be respected; Reassurance about my experience; Accessibility and convenience; Practical support; Addressing cultural diversity; Information tailored to individual needs; Raising awareness and understanding of breast screening). The 'Trusting that I will be respected' cluster was rated most important, while the 'Practical support' cluster was rated least accessible. Some disparity between responses was found based on ethnicity, language, disability and previous attendance of breast screening. CONCLUSIONS: Women require a range of support to participate in breast screening. The results highlight the importance of ensuring women feel and are respected, instilling trust in the staff performing the screening, offering reassurance about positive experiences of breast screening and providing practical support, especially individualized/targeted support for people who do not speak and/or read English and those with a disability. PATIENT OR PUBLIC CONTRIBUTION: The public contributed to the development of the information sheet, consent form, recruitment and data collection method.
Subject(s)
Breast Neoplasms , Humans , Female , Wales , Consensus , Breast Neoplasms/diagnosis , EthnicityABSTRACT
OBJECTIVE: To establish international, multidisciplinary expert consensus on minimum participant characteristic reporting standards in aphasia research (DESCRIBE project). METHODS: An international, three-round e-Delphi exercise and consensus meeting, involving multidisciplinary researchers, clinicians and journal editors working academically or clinically in the field of aphasia. RESULTS: Round 1 of the DESCRIBE e-Delphi exercise (n = 156) generated 113 items, 20 of which reached consensus by round 3. The final consensus meeting (n = 19 participants) established DESCRIBE's 14 participant characteristics that should be reported in aphasia studies: age; years of education; biological sex; language of treatment/testing; primary language; languages used; history of condition(s) known to impact communication/cognition; history of previous stroke; lesion hemisphere; time since onset of aphasia; conditions arising from the neurological event; and, for communication partner participants, age, biological sex and relationship to person with aphasia. Each characteristic has been defined and matched with standard response options to enable consistent reporting. CONCLUSION: Aphasia research studies should report the 14 DESCRIBE participant characteristics as a minimum. Consistent adherence to the DESCRIBE minimum reporting standard will reduce research wastage and facilitate evidence-based aphasia management by enabling replication and collation of research findings, and translation of evidence into practice.
Subject(s)
Aphasia , Stroke , Humans , Consensus , Delphi Technique , ExerciseABSTRACT
OBJECTIVE: To explore how stakeholders in rehabilitation conceptualise 'successful rehabilitation', to inform the development of a minimum dataset and core outcomes for sub-acute rehabilitation. DESIGN: Qualitative consensus study using the nominal group technique. SETTING: Online focus groups. PARTICIPANTS: Consumer representatives (n = 7), clinicians (n = 15), and health service managers (n = 9) from Australia. INTERVENTION: Participants responded to the question, 'What does successful rehabilitation look like?'. Following item generation, they prioritised their top five responses, allocating 100 points across items to denote relative importance. MAIN MEASURES: Prioritised responses were analysed across stakeholder groups using qualitative content analysis. RESULTS: Ten themes were identified. 'Successful rehabilitation' is: (1) person and family centred; (2) effective; (3) inter-professional; (4) accessible; (5) goal oriented with meaningful outcomes; (6) connected to the continuum of care; (7) evidence-based and supportive of innovation and research; (8) appropriately funded and skilled; (9) satisfying and engaging; and (10) safe. CONCLUSIONS: Stakeholder-defined 'successful rehabilitation' aligned with principles of value-based care and evidence-based rehabilitation. Provision and receipt of person and family centred care was the most important indicator of successful rehabilitation. Measures of success should include indicators of structure, process, outcome, and experience, and be conducted at multiple time-points.
Subject(s)
Health Services , Humans , Treatment Outcome , Qualitative Research , Focus Groups , ConsensusABSTRACT
BACKGROUND: Evidence-based recommendations for a core outcome set (COS; minimum set of outcomes) for aphasia treatment research have been developed (the Research Outcome Measurement in Aphasia-ROMA, COS). Five recommended core outcome constructs: communication, language, quality of life, emotional well-being and patient-reported satisfaction/impact of treatment, were identified through three international consensus studies. Constructs were paired with outcome measurement instruments (OMIs) during an international consensus meeting (ROMA-1). Before the current study (ROMA-2), agreement had not been reached on OMIs for the constructs of communication or patient-reported satisfaction/impact of treatment. AIM: To establish consensus on a communication OMI for inclusion in the ROMA COS. METHODS & PROCEDURES: Research methods were based on recommendations from the Core Outcome Measures in Effectiveness Trials (COMET) Initiative. Participants with expertise in design and conduct of aphasia trials, measurement instrument development/testing and/or communication outcome measurement were recruited through an open call. Before the consensus meeting, participants agreed on a definition of communication, identified appropriate OMIs, extracted their measurement properties and established criteria for their quality assessment. During the consensus meeting they short-listed OMIs and participants without conflicts of interest voted on the two most highly ranked instruments. Consensus was defined a priori as agreement by ≥ 70% of participants. OUTCOMES & RESULTS: In total, 40 researchers from nine countries participated in ROMA-2 (including four facilitators and three-panel members who participated in pre-meeting activities only). A total of 20 OMIs were identified and evaluated. Eight short-listed communication measures were further evaluated for their measurement properties and ranked. Participants in the consensus meeting (n = 33) who did not have conflicts of interest (n = 29) voted on the top two ranked OMIs: The Scenario Test (TST) and the Communication Activities of Daily Living-3 (CADL-3). TST received 72% (n = 21) of 'yes' votes and the CADL-3 received 28% (n = 8) of 'yes' votes. CONCLUSIONS & IMPLICATIONS: Consensus was achieved that TST was the preferred communication OMI for inclusion in the ROMA COS. It is currently available in the original Dutch version and has been adapted into English, German and Greek. Further consideration must be given to the best way to measure communication in people with mild aphasia. Development of a patient-reported measure for satisfaction with/impact of treatment and multilingual versions of all OMIs of the COS is still required. Implementation of the ROMA COS would improve research outcome measurement and the quality, relevance, transparency, replicability and efficiency of aphasia treatment research. WHAT THIS PAPER ADDS: What is already known on this subject International consensus has been reached on five core constructs to be routinely measured in aphasia treatment studies. International consensus has also been established for OMIs for the three constructs of language, quality of life and emotional well-being. Before this study, OMIs for the constructs of communication and patient-reported satisfaction/impact of treatment were not established. What this paper adds to existing knowledge We gained international consensus on an OMI for the construct of communication. TST is recommended for inclusion in the ROMA COS for routine use in aphasia treatment research. What are the potential or actual clinical implications of this work? The ROMA COS recommends OMIs for a minimum set of outcomes for adults with post-stroke aphasia within phases I-IV aphasia treatment research. Although not intended for clinical use, clinicians may employ the instruments of the ROMA COS, considering the quality of their measurement properties. The systematic inclusion of a measure of communication, such as TST, in clinical practice could ultimately support the implementation of research evidence and best practices.
Subject(s)
Aphasia , Communication , Quality of Life , Adult , Humans , Activities of Daily Living , Aphasia/diagnosis , Aphasia/therapy , Delphi Technique , Language , Outcome Assessment, Health Care/methods , Research Design , Treatment OutcomeABSTRACT
Many people with aphasia (language impairment post-stroke) want to know their prognosis for recovery, yet current understanding of their experience of receiving prognoses is limited. Such insight is necessary to inform clinical practice in formulating and delivering aphasia prognoses, especially given the psycho-emotional distress and secondary adverse effects on recovery associated with conversations about prognosis. We sought an in-depth understanding of the perspectives of people with aphasia in relation to receiving prognoses post-stroke, with the aim of informing an evidence-based approach to aphasia prognostication in clinical practice. Semi-structured interviews, facilitated by communication support strategies, were conducted one-to-one with eight people with aphasia (ranging from mild to very severe) 3-12 months post-stroke. Reflexive thematic analysis was used to analyse the qualitative data, yielding two over-arching themes: (1) How would you know without knowing me?; (2) I need to know, but I don't want to know. Our findings illustrate issues of mistrust within the patient-clinician relationship, and complex emotions relating to hope and post-stroke adjustment. The present insight into the lived experience of receiving aphasia prognoses highlights the need for focused consideration of personal definitions of normalcy, measures for fostering trust, and the role of prognostic uncertainty.
Subject(s)
Aphasia , Stroke Rehabilitation , Stroke , Humans , Aphasia/etiology , Aphasia/complications , Stroke/complications , Stroke/psychology , Stroke Rehabilitation/psychology , Communication , PrognosisABSTRACT
BACKGROUND: The existing United Kingdom (UK) allied health professional (AHP) workforce in critical care does not meet national standards, with widespread variation in the source of funding, service availability, and regularity of input. OBJECTIVES: The aim of this subanalysis was to determine the impact of protected services on the involvement of AHPs on direct and nondirect aspects of patient care. METHODS: This is a subanalysis of the previously published AHPs in critical care UK-wide workforce survey, an observational study using online surveys distributed to 245 critical care units across the UK. RESULTS/FINDINGS: Services with protected funding provided more daily input within critical care. This was most apparent for occupational therapy where daily input varied from 82.1% of units with protected services compared to just 10.3% in those without (p < 0.001). For all professions, most notably occupational therapy and speech and language therapy, protected services increased the regularity in which specific interventions were completed and had impact on involvement in nonclinical aspects of care including involved in multidisciplinary team meetings, clinical governance, and research. CONCLUSIONS: The absence of protected AHP services reduces compliance with national standards for therapy workforce. Based on these findings, UK and international critical care guidelines should promote protected AHP services for critical care.
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Critical Care , Intensive Care Units , Humans , United Kingdom , Surveys and Questionnaires , WorkforceABSTRACT
BACKGROUND: Increased understanding of whether individuals who have recovered from COVID-19 are protected from future SARS-CoV-2 infection is an urgent requirement. We aimed to investigate whether antibodies against SARS-CoV-2 were associated with a decreased risk of symptomatic and asymptomatic reinfection. METHODS: A large, multicentre, prospective cohort study was done, with participants recruited from publicly funded hospitals in all regions of England. All health-care workers, support staff, and administrative staff working at hospitals who could remain engaged in follow-up for 12 months were eligible to join The SARS-CoV-2 Immunity and Reinfection Evaluation study. Participants were excluded if they had no PCR tests after enrolment, enrolled after Dec 31, 2020, or had insufficient PCR and antibody data for cohort assignment. Participants attended regular SARS-CoV-2 PCR and antibody testing (every 2-4 weeks) and completed questionnaires every 2 weeks on symptoms and exposures. At enrolment, participants were assigned to either the positive cohort (antibody positive, or previous positive PCR or antibody test) or negative cohort (antibody negative, no previous positive PCR or antibody test). The primary outcome was a reinfection in the positive cohort or a primary infection in the negative cohort, determined by PCR tests. Potential reinfections were clinically reviewed and classified according to case definitions (confirmed, probable, or possible) and symptom-status, depending on the hierarchy of evidence. Primary infections in the negative cohort were defined as a first positive PCR test and seroconversions were excluded when not associated with a positive PCR test. A proportional hazards frailty model using a Poisson distribution was used to estimate incidence rate ratios (IRR) to compare infection rates in the two cohorts. FINDINGS: From June 18, 2020, to Dec 31, 2020, 30 625 participants were enrolled into the study. 51 participants withdrew from the study, 4913 were excluded, and 25 661 participants (with linked data on antibody and PCR testing) were included in the analysis. Data were extracted from all sources on Feb 5, 2021, and include data up to and including Jan 11, 2021. 155 infections were detected in the baseline positive cohort of 8278 participants, collectively contributing 2 047 113 person-days of follow-up. This compares with 1704 new PCR positive infections in the negative cohort of 17 383 participants, contributing 2 971 436 person-days of follow-up. The incidence density was 7·6 reinfections per 100 000 person-days in the positive cohort, compared with 57·3 primary infections per 100 000 person-days in the negative cohort, between June, 2020, and January, 2021. The adjusted IRR was 0·159 for all reinfections (95% CI 0·13-0·19) compared with PCR-confirmed primary infections. The median interval between primary infection and reinfection was more than 200 days. INTERPRETATION: A previous history of SARS-CoV-2 infection was associated with an 84% lower risk of infection, with median protective effect observed 7 months following primary infection. This time period is the minimum probable effect because seroconversions were not included. This study shows that previous infection with SARS-CoV-2 induces effective immunity to future infections in most individuals. FUNDING: Department of Health and Social Care of the UK Government, Public Health England, The National Institute for Health Research, with contributions from the Scottish, Welsh and Northern Irish governments.
Subject(s)
Antibodies, Viral/blood , COVID-19/epidemiology , COVID-19/immunology , Health Personnel , Adult , Asymptomatic Infections , COVID-19/diagnosis , COVID-19 Nucleic Acid Testing , England , Female , Follow-Up Studies , Humans , Male , Middle Aged , Pandemics , Prospective Studies , Reinfection , Risk Factors , SARS-CoV-2ABSTRACT
OBJECTIVE: In clinical practice and research, standardised sets of data and outcomes are routinely collected to facilitate data comparison, benchmarking and quality improvement. Most existing data sets are condition-specific and cannot be applied to all patients in a given clinical setting. This review aimed to determine whether the development of a minimum data set for subacute rehabilitation is feasible by collating and comparing existing rehabilitation minimum data sets and core outcome sets. DATA SOURCES: Published literature was identified through database searches (Scopus, PubMed, EMBASE, CINAHL and the COMET Initiative) in September 2021. Additional data sets were identified through a grey literature search. REVIEW METHODS: This review was conducted in alignment with the PRISMA-ScR recommendations. Datasets were included if they were published in English, designed for adults, and intended for use in subacute rehabilitation. Data were extracted and taxonomically organised to identify commonalities. Items present in ≥50% of data sets were considered common. RESULTS: Twenty minimum data sets and seven core outcome sets were included. There were 29 common minimum data set domains, with 19 relating to Patient Information, seven relating to Outcomes, two relating to Service Delivery and one relating to Provider Demographics. Four common domains were identified within the Core Outcome Set analysis, which all related to Life Impact, specifically Physical Functioning (86%), Emotional Functioning/Wellbeing (57%), Social Functioning (86%) and Global Quality of Life (100%). CONCLUSION: Common item domains in conditions requiring subacute rehabilitation have been identified, suggesting that development of a dataset for subacute rehabilitation may be feasible.
Subject(s)
Medicine , Quality of Life , Adult , Humans , Outcome Assessment, Health CareABSTRACT
OBJECTIVE: To synthesize information about the constructs measured, measurement instruments used, and the timing of assessment of cognitive-communication disorders (CCDs) in pediatric traumatic brain injury (TBI) research. METHODS AND PROCEDURES: Scoping review conducted in alignment with Arksey and O'Malley's five-stage methodological framework and reported per the PRISMA extension for Scoping Reviews. Inclusion criteria: (a) cohort description, case-control, and treatment studies; (b) participants with TBI aged 5-18 years; (c) communication or psychosocial outcomes; and (d) English full-text journal articles. The first author reviewed all titles, abstracts, and full-text articles; 10% were independently reviewed. OUTCOMES AND RESULTS: Following screening, a total of 687 articles were included and 919 measurement instruments, measuring 2134 unique constructs, were extracted. The Child Behavior Checklist was the most used measurement instrument and 'Global Outcomes/Recovery' was the construct most frequently measured. The length of longitudinal monitoring ranged between ≤3 months and 16 years. CONCLUSIONS AND IMPLICATIONS: We found considerable heterogeneity in the constructs measured, the measurement instruments used, and the timing of CCD assessment in pediatric TBI research. A consistent approach to measurement may support clinical decision-making and the efficient use of data beyond individual studies in systematic reviews and meta-analyses.
Subject(s)
Brain Injuries, Traumatic , Communication Disorders , Child , Humans , Brain Injuries, Traumatic/complications , Brain Injuries, Traumatic/diagnosis , Communication Disorders/diagnosis , Communication Disorders/etiology , Clinical Decision-Making , CognitionABSTRACT
COVID-19 has had an impact globally with millions infected, high mortality, significant economic ramifications, travel restrictions, national lockdowns, overloaded healthcare systems, effects on healthcare workers' health and well-being, and large amounts of funding diverted into rapid vaccine development and implementation. Patients with COVID-19, especially those who become severely ill, have frequently developed dysphagia and dysphonia. Health professionals working in the field have needed to learn about this new disease while managing these patients with enhanced personal protective equipment. Emerging research suggests differences in the clinical symptoms and journey to recovery for patients with COVID-19 in comparison to other intensive care populations. New insights from outpatient clinics also suggest distinct presentations of dysphagia and dysphonia in people after COVID-19 who were not hospitalized or severely ill. This international expert panel provides commentary on the impact of the pandemic on speech pathologists and our current understanding of dysphagia and dysphonia in patients with COVID-19, from acute illness to long-term recovery. This narrative review provides a unique, comprehensive critical appraisal of published peer-reviewed primary data as well as emerging previously unpublished, original primary data from across the globe, including clinical symptoms, trajectory, and prognosis. We conclude with our international expert opinion on what we have learnt and where we need to go next as this pandemic continues across the globe.
Subject(s)
COVID-19 , Deglutition Disorders , Dysphonia , Humans , COVID-19/complications , COVID-19/epidemiology , Pandemics/prevention & control , Dysphonia/epidemiology , Dysphonia/etiology , Deglutition Disorders/epidemiology , Deglutition Disorders/etiology , Communicable Disease ControlABSTRACT
This study aims to provide insight into speech-language pathologists' experiences of and preparation for interprofessional collaborative practice across various settings and geographical locations in the United States. We disseminated an online survey via Qualtrics© to reach a representative sample of speech-language pathologists. We questioned respondents about the extend to which they engage in interprofessional collaborative practice, professionals with whom they engage in interprofessional collaborative practice, preparation for interprofessional collaborative practice, and barriers to engaging in interprofessional collaborative practice. Responses from 296 participants were analyzed to describe details regarding speech-language pathologists' experiences in interprofessional collaboration. Quantitative data included means, ranges, standard deviations, and frequency counts. Open-ended responses underwent analysis through a consensual qualitative approach. Most speech-language pathologists in this study (59%) reported feeling prepared for interprofessional collaboration. Participants reported that they engage in interprofessional collaborative practice with other professionals from disciplines such as nursing, occupational therapy, teaching, physical therapy, and school psychology. To best prepare students for future speech-language pathology practice, participants recommended that students engage in interprofessional education to learn about collaborating with these disciplines. These results could have implications for future design and implementation of interprofessional education activities for students and practicing clinicians.
Subject(s)
Interprofessional Relations , Speech-Language Pathology , Humans , United States , Pathologists , Speech , Speech-Language Pathology/education , LearningABSTRACT
BACKGROUND: Inconsistent and poorly coordinated systems of tracheostomy care commonly result in frustrations, delays, and harm. Quality improvement strategies described by exemplar hospitals of the Global Tracheostomy Collaborative have potential to mitigate such problems. This 3 yr guided implementation programme investigated interventions designed to improve the quality and safety of tracheostomy care. METHODS: The programme management team guided the implementation of 18 interventions over three phases (baseline/implementation/evaluation). Mixed-methods interviews, focus groups, and Hospital Anxiety and Depression Scale questionnaires defined outcome measures, with patient-level databases tracking and benchmarking process metrics. Appreciative inquiry, interviews, and Normalisation Measure Development questionnaires explored change barriers and enablers. RESULTS: All sites implemented at least 16/18 interventions, with the magnitude of some improvements linked to staff engagement (1536 questionnaires from 1019 staff), and 2405 admissions (1868 ICU/high-dependency unit; 7.3% children) were prospectively captured. Median stay was 50 hospital days, 23 ICU days, and 28 tracheostomy days. Incident severity score reduced significantly (n=606; P<0.01). There were significant reductions in ICU (-;0.25 days month-1), ventilator (-;0.11 days month-1), tracheostomy (-;0.35 days month-1), and hospital (-;0.78 days month-1) days (all P<0.01). Time to first vocalisation and first oral intake both decreased by 7 days (n=733; P<0.01). Anxiety decreased by 44% (from 35.9% to 20.0%), and depression decreased by 55% (from 38.7% to 18.3%) (n=385; both P<0.01). Independent economic analysis demonstrated £33 251 savings per patient, with projected annual UK National Health Service savings of £275 million. CONCLUSIONS: This guided improvement programme for tracheostomy patients significantly improved the quality and safety of care, contributing rich qualitative improvement data. Patient-centred outcomes were improved along with significant efficiency and cost savings across diverse UK hospitals. CLINICAL TRIAL REGISTRATION: IRAS-ID-206955; REC-Ref-16/LO/1196; NIHR Portfolio CPMS ID 31544.