Alterations and Preservations: Practices and Perspectives of Speech-Language Pathologists Regarding the Intervention of Thickened Liquids for Swallowing Problems.

PURPOSE: The intervention of thickened liquids (TL) is commonly used to reduce aspiration in people with dysphagia. Speech-language pathologists (SLPs) have traditionally believed it is an effective intervention. Recent articles highlight limited evidence, poor acceptance, and a variety of unintended consequences. This study explores if current debates have been reflected in SLP practices and perspectives. METHOD: An e-survey was developed. Participants were recruited via professional associations in Australia, New Zealand, Ireland, the United Kingdom, and the United States. Descriptive and inferential statistics were used to explore the data. Principal component analysis was used to summarize SLP practices and perspectives. RESULTS: The 370 respondents represented mainly experienced, confident, hospital-based clinicians. While 20% of respondents frequently recommend TL, 61% believe it to be a burdensome treatment. "Best treatment" and "It works" beliefs continue to underpin decision making. Those who recommend TL most often are most influenced by penetration, coughing, and their own clinical experience. They are more likely to believe TL is evidence based and effective, reduces aspiration, and improves hydration. Person-centeredness is important among all respondents, although significant numbers would implement TL against patient wishes. Improvements in aspiration status and quality of life rank highly as reasons to discontinue TL. CONCLUSIONS: The results of this study suggest that fewer respondents are regularly using TL. Divergent groups are evident with those frequently employing and believing in the efficacy of TL and those who do not. While current debates are influencing practice, there clearly remains a significant number of SLPs continuing to recommend TL. This study's findings highlight both alterations and preservations in the discipline's approach to TL and calls for SLPs to reframe our thinking regarding this intervention as well as consider alternative options in this treatment space. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.24317110.

Informed or misinformed consent and use of modified texture diets in dysphagia.

BACKGROUND: Use of modified texture diets-thickening of liquids and modifying the texture of foods-in the hope of preventing aspiration, pneumonia and choking, has become central to the current management of dysphagia. The effectiveness of this intervention has been questioned. We examine requirements for a valid informed consent process for this approach and whether the need for informed consent for this treatment is always understood or applied by practitioners. MAIN TEXT: Valid informed consent requires provision of accurate and balanced information, and that agreement is given freely by someone who knows they have a choice. Current evidence, including surveys of practitioners and patients in different settings, suggests that practice in this area is often inadequate. This may be due to patients' communication difficulties but also poor communication-and no real attempt to obtain consent-by practitioners before people are 'put on' modified texture diets. Even where discussion occurs, recommendations may be influenced by professional misconceptions about the efficacy of this treatment, which in turn may poison the well for the informed consent process. Patients cannot make appropriate decisions for themselves if the information provided is flawed and unbalanced. The voluntariness of patients' decisions is also questionable if they are told 'you must', when 'you might consider' is more appropriate. Where the decision-making capacity of patients is in question, inappropriate judgements and recommendations may be made by substitute decision makers and courts unless based on accurate information. CONCLUSION: Research is required to examine the informed consent processes in different settings, but there is ample reason to suggest that current practice in this area is suboptimal. Staff need to reflect on their current practice regarding use of modified texture diets with an awareness of the current evidence and through the 'lens' of informed consent. Education is required for staff to clarify the importance of, and requirements for, valid informed consent and for decision making that reflects people's preferences and values.

Ethical considerations in the care of people with eating, drinking and swallowing difficulties.

PURPOSE OF REVIEW: Eating, drinking and swallowing difficulties are low on the list of clinical headlines. Until something affects the process and then we see how pervasive and devastating such issues are. Recent guidelines have been published looking at national competencies to be structured into preregistration education. Professional bodies have addressed the topic from a risk perspective, which may be counter to the patient-centred approach of shared decision making. Our review places the literature in the wider, historical context of bioethics and our experience regarding ethical challenges as we strive to support our patients. RECENT FINDINGS: Recent literature addressing ethical care for a person with eating, drinking and swallowing difficulties, highlights shared decision-making. This is guided by patient preference, professional roles and approaches, cultural context and informed consent. Studies highlight the importance of appropriate communication and documentation, and ethical decision-making steps. SUMMARY: We hope to widen clinicians' perspectives and reflection on factors influencing these challenges (including own biases), and how to address them so that the patient and the clinician are satisfied. Ethical approaches require skills and knowledge, and critically also time. Resources should be allocated at the service level to ensure a robust process of informed consent and decision making.

Eating, Drinking, and Swallowing Difficulties: The Impacts on, and of, Religious Beliefs.

Eating, drinking, and swallowing (EDS) are fundamental to the biomechanical model of the body. They are the processes by which the body obtains fuel essential for existence but are so much more than this mere function. What, when, and how we eat, with whom, even what we do not eat, and when we do not eat, are not physiological restrictions. The Equality Act 2010 prohibits discrimination of patients based on a list of protected characteristics, including religion. There is a paucity of literature addressing religion and EDS issues despite most religions having laws regarding food sourcing, preparation, consumption, and fasting. The diverse perspectives of our patients may influence engagement with services unless we appreciate the significance of the interplay of EDS and religious belief. Our paper addresses religion and EDS with a focus on the activities that lead up to food or drink consumption. Religion, as with many important aspects of humanity, is a highly individual experience. Thus, we need to establish what is important to each person that we deal with, whilst using general knowledge of a religion to guide us. An informed multidisciplinary team including stakeholders from chaplaincy services is critical for optimal patient care.

Research priorities to improve the health of children and adults with dysphagia: a National Institute of Health Research and Royal College of Speech and Language Therapists research priority setting partnership.

OBJECTIVE: To conduct the first UK-wide research priority setting project informing researchers and funders of critical knowledge gaps requiring investigation to improve the health and well-being of patients with eating, drinking and swallowing disorders (dysphagia) and their carers. DESIGN: A priority setting partnership between the National Institute of Health Research (NIHR) and the Royal College of Speech and Language Therapists using a modified nominal group technique. A steering group and NIHR representatives oversaw four project phases: (1) survey gathering research suggestions, (2) verification and aggregation of suggestions with systematic review research recommendations, (3) multistakeholder workshop to develop research questions, (4) interim priority setting via an online ranking survey and (5) final priority setting. SETTING: UK health services and community. PARTICIPANTS: Patients with dysphagia, carers and professionals who work with children and adults with dysphagia from the UK. RESULTS: One hundred and fifty-six speech and language therapists submitted 332 research suggestions related to dysphagia. These were mapped to 88 research recommendations from systematic reviews to form 24 'uncertainty topics' (knowledge gaps that are answerable by research). Four patients, 1 carer and 30 healthcare professionals collaboratively produced 77 research questions in relation to these topics. Thereafter, 387 patients, carers and professionals with experience of dysphagia prioritised 10 research questions using an interim prioritisation survey. Votes and feedback for each question were collated and reviewed by the steering and dysphagia reference groups. Nine further questions were added to the long-list and top 10 lists of priority questions were agreed. CONCLUSION: Three top 10 lists of topics grouped as adults, neonates and children, and all ages, and a further long list of questions were identified by patients, carers and healthcare professionals as research priorities to improve the lives of those with dysphagia.

Is Dysphagia Under Diagnosed or is Normal Swallowing More Variable than We Think? Reported Swallowing Problems in People Aged 18-65 Years.

PURPOSE: Dysphagia prevalence in younger community dwelling adults and across nations is sparse. We investigated the prevalence of swallowing problems in an unselected cohort of people aged 18-65 years. METHODS: The EAT-10 Assessment Tool was converted into an anonymized online survey. Invitations were e-mailed to author contacts and onwards dispersal encouraged. Analysis was performed using non-parametric test for group comparison (Mann-Whitney U) and Spearman's rho correlation. RESULTS: From March 2014 to October 2017: 2054 responses (32 reported ages outside of 18-65 or undeclared) from Africa, Asia, Australasia/Oceania, Europe, and North and South America. Responses: 1,648 female, 364 male, (10 reported as both), median age 34, (range 18-65, mean 37.12, SD 12.40) years. Total EAT-10 scores: median 0 (range 0-36, mean 1.57, SD 3.49). EAT-10 score ≥ 3 (337) median 5 (range 3-36, mean 7.02 SD 5.91). Median age 36 (range 19-65, mean 37.81, SD 13.21) years. Declared sex was not statistically significantly associated with non-pathological vs. pathological EAT-10 score (p = 0.665). Female scores (median 0.00, mean 1.56, SD 3.338) were significantly higher than for males (median 0.00, mean 1.62, SD 4.161): U (Nfemale = 1648, Nmale = 364) = 275,420.000, z = - 2.677, p = 0.007. Age and EAT-10 score were not associated: females rs = - 0.043, p = 0.079, N = 1648, males rs = - 0.003, p = 0.952, N = 364. Considerable impact on people: "I take ages to eat a main course … This is embarrassing and I often leave food even though I am still hungry." (no diagnosis, EAT-10 = 17). CONCLUSION: Concerns regarding swallowing exist in people undiagnosed with dysphagia, who may feel uncomfortable seeking professional help. Dysphagia may be under reported resulting in a hidden population. Subtle changes are currently seen as subtle markers of COVID-19. Further work is required to ensure that what is an essentially normal swallow does not become medicalized.

Specifications Grading: What It Is, and Lessons Learned.

Traditional point-based grading is failing students entering a competency-based workforce: Employers require concrete skills and knowledge, not "high" grades. In the specifications approach, learning outcomes are explicitly linked to the grading system. The basic components of the approach include clear alignment of learning outcomes to certification standards, bundled sequences of assessments tied to basic and advanced competency/learning outcomes, pass/fail grading with no partial credit, opportunities to revise unacceptable work, and detailed expectations of performance on assessments. This article describes the specifications approach and provides examples highlighting how to (1) align course learning objectives with a grading system, (2) implement a pass/fail approach even for complex assessment, (3) define specifications, (4) create and sequence bundles of assessments, and (5) provide instructor support through feedback and tokens.

Ethical Issues in Dysphagia Management.

Dysphagia management is complex and requires balancing individuals' preferences, quality of life, and medical consequences. Ethical challenges are not uncommon given the complexity of dysphagia. Professionals must engage in ethical reflection and shared decision-making when managing dysphagia. Recognizing one's own presuppositions and beliefs may be fundamental to ensuring an ethical approach. The goal of this article is to apply principles of ethics using hypothetical case studies of dysphagia. To this end, we will describe the challenges of working with the disorder of dysphagia; the influence of culture on decision-making about eating and feeding; the importance of information disclosure and respect for individuals' refusal of recommendations; and the interplay of ethical reflection, evidence, and clinical judgment when making complex dysphagia management decisions. These concepts should be kept in mind to ensure compassionate and competent care of the person with eating, drinking, or swallowing problems and their family caregivers.

Complexity of Clinical Decision Making: Consent, Capacity, and Ethics.

Speech-language pathologists (SLPs), and really their patients, are often faced with challenging clinical decisions to be made. Patients may decline interventions recommended by the SLP and are often inappropriately labeled "noncompliant." The inappropriateness of this label extends beyond the negative charge; the patient's right to refuse is, in fact, protected by law. Anecdotal exchanges, social media platforms, and American Speech-Language-Hearing Association forums have recently revealed that many SLPs are struggling with the patient's right to decline. Many are not comfortable with the informed consent process and what entails patients' capacity to make their own medical decisions. Here, we discuss the basics of clinical decision-making ethics with intent to minimize the clinician's discomfort with the right to refuse those thickened liquids and eliminate the practice of defensive medicine.

Update on Didactic and Clinical Education in Fluency Disorders: 2013-2014.

Purpose: This study surveyed didactic and clinical education in fluency disorders at undergraduate and graduate institutions in the United States that provide education in speech-language pathology to determine whether a previously observed reduction in requirements has continued since prior surveys (Yaruss, 1999; Yaruss & Quesal, 2002). Method: The study involved a detailed questionnaire that was sent to 282 communication science and disorders departments. Questions examined didactic and clinical education, as well as faculty knowledge about fluency disorders. Results: Comparisons with prior surveys revealed several findings, including (a) on average, programs have increased academic coursework and incorporated more practical sessions and competency-based testing in the classroom; (b) the number of faculty who possess extensive clinical experience with fluency disorders has decreased; and (c) although an increase in clinical requirements in fluency disorders was detected, the number of programs providing minimal education about fluency disorders remains high. Conclusion: Given an expanding scope of practice, many programs have continued to try to provide adequate education about fluency disorders. Still, direct clinical experiences are limited, and faculty expertise in this area has continued to decrease. To raise students' confidence and competence in fluency disorders, efforts beyond graduate work-or systemic changes in the profession-may be necessary.

Speaker and Observer Perceptions of Physical Tension during Stuttering.

PURPOSE: Speech-language pathologists routinely assess physical tension during evaluation of those who stutter. If speakers experience tension that is not visible to clinicians, then judgments of severity may be inaccurate. This study addressed this potential discrepancy by comparing judgments of tension by people who stutter and expert clinicians to determine if clinicians could accurately identify the speakers' experience of physical tension. METHOD: Ten adults who stutter were audio-video recorded in two speaking samples. Two board-certified specialists in fluency evaluated the samples using the Stuttering Severity Instrument-4 and a checklist adapted for this study. Speakers rated their tension using the same forms, and then discussed their experiences in a qualitative interview so that themes related to physical tension could be identified. RESULTS: The degree of tension reported by speakers was higher than that observed by specialists. Tension in parts of the body that were less visible to the observer (chest, abdomen, throat) was reported more by speakers than by specialists. The thematic analysis revealed that speakers' experience of tension changes over time and that these changes may be related to speakers' acceptance of stuttering. CONCLUSION: The lack of agreement between speaker and specialist perceptions of tension suggests that using self-reports is a necessary component for supporting the accurate diagnosis of tension in stuttering.

A preliminary investigation of daily variability of stuttering in adults.

PURPOSE: Variability in frequency of stuttering has made the results of treatment outcome studies difficult to interpret. Many factors that affect variability have been investigated; yet the typical range of variability experienced by speakers remains unknown. This study examined the day-to-day variability in the percentage of syllables containing stuttered and nonstuttered disfluencies in the speech of six adult speakers in three spontaneous speaking situations and two reading tasks. METHODS: The frequency of moments stuttering during the tasks were compared within and between speakers and days to document the degree of variability in stuttering frequency and explore whether there were any consistent patterns. The Stuttering Severity Instrument-Fourth Edition (SSI-4) and Overall Assessment of the Speaker's Experience of Stuttering for Adults (OASES-A) were also tested for day-to-day variability. Correlations between frequency, severity, and life impact were made. RESULTS: The primary result of this study was the large range over which frequency of stuttering varied from day to day for the same individual. This variability did not correlate with any measures of stuttering severity but did correlate with life impact as measured by the OASES-A. No global pattern was detected in variability from day to day within or between participants. However, there were significantly more nonstuttered disfluencies present during the spontaneous speaking tasks than during the reading tasks. The day-to-day variability in the life impact of the disorder (OASES-A) was less than the day-to-day variability in observable stuttering behavior (percentage of syllables stuttered and SSI-4). CONCLUSION: Frequency of stuttering varies significantly from situation to situation and day to day, with observed variability exceeding the degree of change often reported in treatment outcomes studies from before to after treatment. This variability must be accounted for in future clinical and scientific work.

Gastroesophageal and extraesophageal reflux symptoms: similarities and differences.

OBJECTIVES/HYPOTHESIS: The association between extraesophageal reflux (EER) and symptoms of gastroesophageal reflux disease (GERD) is inadequately understood. We used the Comprehensive Reflux Symptom Scale (CReSS) to evaluate EER and reflux-symptom prevalence in gastroenterology and otolaryngology outpatients and symptom awareness among UK gastroenterologists. STUDY DESIGN: Cross-sectional cohort survey. METHODS: Six hundred thirty-nine participants were surveyed: 103 controls, 359 patients undergoing esophagogastroduodenoscopy (EGD), and 177 otolaryngology clinic patients with throat symptoms. Participants completed the CReSS questionnaire. The study was undertaken in the Endoscopy Unit and the Department of Otolaryngology-Head and Neck Surgery, Newcastle upon Tyne Hospitals, Newcastle-upon-Tyne, United Kingdom. Registered members of the British Gastroenterology Society were asked to rate how frequently reflux patients might complain of each CReSS item. RESULTS: The median CReSS total in volunteers (4) was significantly lower (P < .002) than in ear, nose, and throat (ENT) patients (26) or EGD patients with (42) or without (32) esophageal inflammation. All items were scored as ≥1 by >15% of ENT patients and 28% of EGD patients. Three major, robust CReSS factors: esophageal, pharyngeal, and upper airway emerged. Of 259 gastroenterologists, >20% scored 8 of the 34 symptoms as never being reported by reflux patients. CONCLUSIONS: Endorsement of each EER CReSS item by 28% to 58% of patients with endoscopic evidence of GERD supports the Montreal consensus on an EER-GERD continuum. Gastroenterologists vary considerably in their appreciation of EER symptom relevance. The advantages of CReSS include standardized, comprehensive capture of patient experience; discriminant validity of ENT and GERD patients from volunteers; and discrete esophageal, pharyngeal, and upper airway subscales. LEVEL OF EVIDENCE: 4.

Beginning of the end? Ending the therapeutic relationship in palliative care.

Hersh (2010) raises important issues regarding the ending of the therapeutic relationship. In this paper, we will explore this concept in relation to speech-language pathology (SLP) and palliative care. Palliative care aims to affirm life and minimize the complications of life limiting disease. Speech-language pathologists (SLPs) work with people with progressive and life limiting disease as rehabilitation experts but often work independently of specialist palliative care teams. Rehabilitation may seem incongruent with palliation but SLPs have a vital role in the empowerment of patients with communication difficulties and symptom reduction through specialist dysphagia management and communication therapy. This is vital in the last months and weeks of life. Starting and closing episodes of care remains a challenging area for therapists. SLP membership of palliative care multidisciplinary teams is limited and there may be a lack of understanding between professionals regarding the SLP role. In this paper we will use case studies and the palliative care literature to define a role for rehabilitation and the transition from supportive to palliative rehabilitation and closing episodes of care.

Oropharyngeal dysphagia assessment and treatment efficacy: setting the record straight (response to Campbell-Taylor).

In September 2008, an article was published in the Journal of the American Medical Directors Association criticizing current dysphagia assessment and management practices performed by speech-language pathologists in Long-Term Care (LTC) settings. In the same issue, an editorial invited dialogue on the points raised by Campbell-Taylor. We are responding to this call for dialogue. We find Campbell-Taylor's interpretation of the literature to be incomplete and one-sided, leading to misleading and pessimistic conclusions. We offer a complementary perspective to balance this discussion on the 4 specific questions raised: (1) Is the use of videofluoroscopy warranted for evaluating dysphagia in the LTC population? (2) How effective are thickened liquids and other interventions for preventing aspiration and do they contribute to reduction of morbidity? (3) Can aspiration be prevented and is its prevention important? and (4) Is there sufficient evidence to justify dysphagia intervention by speech language pathologists?

Oral-motor dysfunction at 10 months corrected gestational age in infants born less than 37 weeks preterm.

Feeding difficulties are common in preterm infants. These may be associated with inadequate dietary intake, poor growth, and parental anxiety. Oral-motor dysfunction has been observed in preterm infants during sucking and the early stages of weaning but has not been rigorously studied in later infancy when eating a range of food consistencies. We aimed to establish if oral-motor dysfunction during feeding occurs in preterm infants in later infancy and to explore the relationships with specific neonatal risk factors: gestational age at birth, prolonged supplementary oxygen requirement, and delay in establishing full oral feeding. Infants born less than 37 weeks gestational age were evaluated once at 10 months corrected gestational age using a validated feeding assessment (Schedule for Oral Motor Assessment). Fifteen infants were enrolled (9 males, 6 females; median gestational age at birth = 33 weeks, range = 25-36 weeks; median birth weight = 1890 g, range = 710-2950 g). Oral-motor dysfunction was observed in three infants all born after 31 weeks gestation. No relationship was found with the neonatal risk factors. This study indicates that oral-motor dysfunction may occur in later infancy and is not easily predicted from specific neonatal risk factors. Further study is required to evaluate the true prevalence and the health implications of oral-motor dysfunction in this population in later infancy.

A pilot study exploring the factors that influence the decision to have PEG feeding in patients with progressive conditions.

This original pilot study was conducted to explore and understand the factors that influence a patient's decision-making when considering percutaneous endoscopic gastrostomy placement for nonoral nutrition and hydration supplementation. Seven patients living with progressive dysphagic symptoms who had made a decision about percutaneous endoscopic gastrostomy placement were interviewed and their responses analyzed using the constant comparison method. All participants felt they had no option other than to accept the percutaneous endoscopic gastrostomy. The impact of visible physical deterioration and medical opinion were the most powerful influences on patients' decisions. Patients' perception of their involvement in the decision varied. This was linked to the amount and timing of information supplied and support they felt they received. Few patients have prior knowledge of tube feeding and rely heavily on medical advice. Effective communication by healthcare professionals can promote an environment that is supportive of patients' involvement in decisions. Adequate preparation time is vital if patients are to stop feeling uninvolved or peripheral to the decision-making process. Multidisciplinary teams need to address their working practices so that they do not intimidate patients, but rather empower patients in their decision-making.