This study highlights the unique contribution of autobiographical accounts in developing our understanding of living with dysphagia following stroke. The findings emphasize the significant emotional and social impact of dysphagia during the stroke recovery process and add further depth to our understanding of the experience of this clinical group. Implications for Rehabilitation Autobiographical accounts often hold valuable first-hand information on patient perspectives and journeys, which when viewed through the eyes of a qualitative researcher, can add depth to our understanding of particular healthcare experiences. Persons who experience dysphagia as a result of stroke travel a complex rehabilitation journey, involving the interaction of many physical, emotional and social considerations. Healthcare professionals should be aware of not only the physical, but also the significant psychosocial consequences of living with dysphagia following stroke. Further research is required in this field, so that the experiences of these persons can be better understood and findings can be used to contribute to high-quality and evidence-based service delivery.
Background There is increasing recognition that dysphagia has significant implications for a person's psychological well‐being, social participation and quality of life (QOL). However, a paucity of research exists regarding the clinical management of this area. To inform future research and the development of appropriate and beneficial resources and guidelines, a better understanding of the current practice of speech and language therapists (SLTs) in this area would be useful. This information will highlight current challenges to clinical practice and the ongoing development needs of the profession, which are, as of yet, undocumented. Aims To determine the practices of SLTs when addressing QOL issues in individuals with dysphagia, the beliefs of SLTs regarding the impact of dysphagia on QOL, the current trends in assessing and managing QOL in dysphagia, and if variations in beliefs and practices in this area exist. Methods & Procedures An anonymous cross‐sectional, non‐experimental survey study was used. The survey consisted of 18 questions exploring participants’ beliefs and opinions regarding dysphagia and QOL, current clinical practice in the area, perceived facilitators and barriers, and education, training and development needs. The survey was created on Survey Monkey and disseminated by e‐mail link to SLT professional bodies. Purposive and snowball sampling were used and participants self‐selected based on the information provided alongside the e‐mail link. Inclusion criteria for the study were a qualification in speech and language therapy, proficiency in the English language, and access to a computer with the internet. Outcomes & Results A total of 148 SLTs working across the UK, Ireland and South Africa completed the survey. Over 90% of respondents believe that dysphagia has a negative impact on QOL, but only 25% are currently satisfied with the amount of clinical time they can dedicate to this area. Staffing, resources, a lack of best‐practice guidelines and disease‐specific QOL assessment tools were cited as contributing factors. A number of facilitators and barriers to best practice were also highlighted. Based on these findings, professional development actions for the future are suggested. Conclusions & Implications SLTs believe they have an important role to play in supporting QOL issues in dysphagia. However, it is reported that the area is currently under‐developed, under‐resourced and under‐supported. Increased awareness raising of the role of SLT, alongside the development of best‐practice guidelines and disease‐specific QOL assessment tools, will enhance the quality of care that can be offered in this area.
SUMMARY There is significant evidence for genetic and phenotypic heterogeneity in X linked retinitis pigmentosa (XLRP). We have studied the linkage of XLRP in four Irish families to a number of polymorphic DNA markers. We report linkage between the DXS7 (L1-28) locus and the XLRP locus (Z=3-445, 0=0-00). Combined with the previously published data on British and Danish families, the genetic distance between the DXS7 and XLRP loci is now estimated at 5 cM with a maximum lod score of 13-026 and a 1-lod confidence interval of 075 to 9-5 cM. Linkage was also observed between 754 and XLRP (Z=3-41, 0=0-00) and between pERT87 and XLRP (Z=1*37, 0=0.1). The heterogeneity of XLRP is discussed in relation to these observations.
Patient reported outcome measures (PROMs) are commonly used to evaluate the impact of a health condition on quality of life (QOL). This study aimed to identify the range of PROMs that are currently in common use in clinical trials in dysphagia following stroke and to qualitatively analyse these PROMs by mapping the content to both the International Classification of Functioning and Disability Framework (ICF) and the Core Outcome Measures in Effectiveness Trials (COMET) Taxonomy for outcome classification. With consideration for the PRISMA-ScR checklist, a scoping review was conducted to identify commonly used PROMs in randomised controlled trials reported in persons with dysphagia stroke. A search of five databases was conducted. Studies were excluded if they included pediatric participants i.e. < 18 years of age, or if the text was not available in the English language. 110 papers met the inclusionary criteria. Twelve of these 110 papers included a dysphagia PROM. Two PROMs were identified as being in common use—the SWAL-QOL and the EAT-10. These two tools consisted of 47 items and 78 meaningful concepts, which were subsequently mapped to the ICF and the COMET Taxonomy. Mapping to the ICF showed that neither tool directly assessed the impact of ‘Environmental Factors’ on the experience of dysphagia. Mapping to the COMET Taxonomy showed that neither tool considered the impact of ‘Role Functioning’ on the person’s experience of dysphagia. The development of a suitable and appropriate patient-reported assessment tool for use in those with dysphagia following stroke is warranted.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
customersupport@researchsolutions.com
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.