Background
There is growing recognition that communication can be affected in multiple sclerosis (MS) and can negatively impact relationships, employment and psychological well‐being. Some persons ...with MS (PwMS) implement strategies to facilitate their communication; however, some do not. Most PwMS who report communication changes do not engage with speech–language pathology (SLP) services. This raises concerns that a large portion of communication changes associated with MS go under‐recognized and unmanaged. Little is known about what PwMS want and need to facilitate effective communication.
Aim
To explore what PwMS want and need to better manage their communication changes.
Methods & Procedures
Three focus groups were conducted online using Zoom, with a total of 12 PwMS. Participants were an opportunistic sample of PwMS within Australia recruited via advertisements distributed to various MS organizations and clinics. Data were transcribed verbatim and analysed using thematic content analysis to provide a qualitative analysis of the data.
Outcomes & Results
Two main themes emerged: (1) accessible knowledge and a holistic approach; and (2) partnerships. Specifically, the identified wants and needs of participants included: (1) assessment; (2) information; (3) raising awareness; (4) support groups; (5) a whole‐person approach to intervention; (6) geographically and economically accessible and navigable services; (7) effective patient–physician interactions; and (8) a multidisciplinary team‐based approach (e.g., SLP, psychology, neuropsychology, occupational therapy).
Conclusions & Implications
This study identified a wide range of unmet wants and needs of PwMS related to communication changes. Participants wanted improved collaborative partnerships with healthcare professionals to better manage their communication changes. For example, healthcare professionals could ask PwMS about potential communication changes, provide education and make appropriate referrals. Education and information provision could focus on communication changes in MS, factors that trigger or exacerbate communication changes, impacts, self‐management strategies, and available supports and services. Specific implications for clinical practice and future research are suggested in this paper, including ideas for patient education materials and content, suggestions for communication‐specific screening and information that could be shared in patient–physician interactions, the development of guidelines to systematically screen, assess, manage and monitor communication changes in MS, and the design of evidence‐based communication interventions for this clinical population. The results from this study can be used to guide the design of supports and services to help PwMS better manage communication changes, with the aim to reduce the negative impacts.
What this paper adds
What is already known on this subject
PwMS can experience communication changes across a range of domains, including speech, voice, fluency, expressive and receptive language, and cognitive–linguistic functions. These changes can have profound and far‐reaching negative impacts on educational and vocational outcomes, social participation, relationships, psychological well‐being, and quality of life. Most PwMS who report communication changes do not engage with SLP services. There has been little research exploring what PwMS want and need to help manage their communication changes.
What this paper adds to the existing knowledge
This research is the first study of its kind that sets out specifically to explore what PwMS want and need to better manage their communication changes. This study increases our understanding of, and provides valuable insights into, the specific types of supports and services PwMS desire to access, and the partnerships and kinds of interactions PwMS dream of having with healthcare professionals to manage these changes. This information can facilitate the development of future interventions to manage communication changes in MS.
What are the potential or actual clinical implications of this work?
PwMS wanted healthcare professionals to ask about potential communication changes, provide education and make appropriate referrals. When providing education and information on communication changes in MS, healthcare professionals should focus on covering symptoms, triggers, impacts, self‐management strategies, and available supports and services. There is a timely need to develop guidelines and interventions to manage communication changes in MS to reduce their negative impacts.
CME/CNE Information
Activity Available Online: To access the article, post-test, and evaluation online, go to https://www.highmarksce.com/mscare.
Target Audience: The target audience for this ...activity is physicians, physician assistants, nursing professionals, speech pathologists, and other health care providers involved in the management of patients with multiple sclerosis (MS).
Learning Objectives: 1) Identify several variables that may place a person with MS at risk of language symptoms. 2) Describe the role of frontline health care providers in management of language and communication symptoms in patients with MS.
Accreditation Statement:
In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Delaware Media Group. The CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.
Physician Credit: The CMSC designates this journal-based activity for a maximum of 0.75 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
Nurse Credit: The CMSC designates this enduring material for 0.75 contact hour (none in the area of pharmacology).
Disclosures: Francois Bethoux, MD, Editor in Chief of the International Journal of MS Care (IJMSC), has served as Physician Planner for this activity. He has disclosed relationships with Springer Publishing (royalty), Qr8 (receipt of intellectual property rights/patent holder), Biogen (receipt of intellectual property rights/patent holder, speakers’ bureau), GW Biosciences (consulting fee), MedRhythms (consulting fee, contracted research), Genentech (consulting fee), Helius Medical Technologies (consulting fee), Osmotica (consulting fee), and Adamas Pharmaceuticals (contracted research). Laurie Scudder, DNP, NP, has served as Reviewer for this activity. She has disclosed no relevant financial relationships. Sarah El-Wahsh, BAppSc (Sp Path) (Hons 1), has disclosed no relevant financial relationships. Rob Heard, PhD, has disclosed no relevant financial relationships. Hans Bogaardt, PhD, has disclosed no relevant financial relationships. Fiona Kumfor, PhD, has disclosed no relevant financial relationships. Kirrie J. Ballard, PhD, has disclosed founding a start-up unrelated to the topic of this article; to date, the start-up designs apps for delivering speech therapy to children with developmental speech disorders. The peer reviewers for IJMSC have disclosed no relevant financial relationships. The staff at IJMSC, CMSC, and Delaware Media Group who are in a position to influence content have disclosed no relevant financial relationships. Note: Financial relationships may have changed in the interval between listing these disclosures and publication of the article.
Method of Participation:
Release Date: April 1, 2021
Valid for Credit Through: April 1, 2022
In order to receive CME/CNE credit, participants must: 1) Review the continuing education information, including learning objectives and author disclosures.2) Study the educational content.3) Complete the post-test and evaluation, which are available at https://www.highmarksce.com/mscare.
Statements of Credit are awarded upon successful completion of the evaluation and the post-test with a passing score of >70%. The post-test may be retaken if necessary. There is no fee to participate in this activity.
Disclosure of Unlabeled Use: This educational activity may contain discussion of published and/or investigational uses of agents that are not approved by the FDA. The CMSC and Delaware Media Group do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of the CMSC or Delaware Media Group.
Disclaimer: Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any medications, diagnostic procedures, or treatments discussed in this publication should not be used by clinicians or other health care professionals without first evaluating their patients’ conditions, considering possible contraindications or risks, reviewing any applicable manufacturer’s product information, and comparing any therapeutic approach with the recommendations of other authorities.
Background
Oropharyngeal dysphagia and laryngeal dysfunction are two lesser known complications after lung and heart transplantation. The presence of these features places this immunocompromised ...population at high risk of pulmonary complications and subsequent medical deterioration. Early identification of swallowing and voice dysfunction would be beneficial to optimize management.
Aims
To examine the association between patient risk factors and postoperative outcomes with referral to speech pathology (SP) following signs of swallowing and voice dysfunction.
Methods & Procedures
A retrospective review was conducted on demographic data, patient risk factors and postoperative course in 284 patients following lung and/or heart transplantation between 2010 and 2013. Variables were analysed for any association between pre‐ and postoperative factors and SP referral.
Outcomes & Results
A total of 24% were referred to SP with a mean age of 47 years. Binary logistic regression identified a statistically significant association between the number of intubations (odds ratio (OR) = 2.066, p = 0.028), intubation duration (OR = 1.004, p < 0.01), length of stay in the intensive care unit (ICU) (OR = 1.068, p < 0.01), and number of ICU admissions (OR = 1.384, p = 0.046) and SP referral. Intubation time and the total days in ICU were greater for patients referred to SP. Mortality also increased for these variables and for the numbers of reintubations and readmissions. Analysis of pre‐operative risk factors revealed cerebrovascular disease to be a significant predictor of SP referral (OR = 6.747, p = 0.032).
Conclusions & Implications
This study demonstrates significant clinical indicators for referral to SP for the management of oropharyngeal dysphagia and laryngeal dysfunction in patients after lung or heart transplantation. Further studies are needed to investigate the most efficacious intervention approaches to manage swallowing and voice dysfunction in these patients.
Abstract Objective Voice rehabilitation after total laryngectomy is challenging. In order to investigate and understand the function of the neoglottis sophisticated measurements need to be made. ...During voice production, aerodynamic energy is transformed into sound energy. In non-laryngectomized patients, the voice production efficiency is called the vocal efficiency. Vocal efficiency is an indication of how efficient the transformation of energy takes place. Vocal efficiency is calculated by dividing the output sound power by the aerodynamic power. Patients and methods In a group of eight laryngectomees with tracheoesophageal voice, we measured aerodynamic and acoustic quantities and calculated vocal efficiency. We used a computer setup with airflow transducers, pressure transducers, mikrotip transducers and sound intensity measurement to allow calculation of the needed parameters. Results The tables show the results of the power used and produced in various phonatory tasks. Relatively high levels of aerodynamic power are interpreted as increased effort to speak. Conclusion The aerodynamic power is an indication of the effort needed for voice generation. The efficiency of TE-voice production is lower compared to laryngeal voice production but does show an increase when sound intensity increases, a known phenomenon in healthy laryngeal voice production.
Objectives:
After laryngectomy, pulmonary protection is mostly acquired by means of a heat and moisture exchanger (HME) that is placed on an airtight seal around the stoma. The effects of HMEs on the ...tracheal climate have been well described, and the filtration effect of an HME with an electrostatic filter has been described in vitro. The effects of HME use in patients have been documented in several trials in different countries. The follow-up time of the patients in these trials, however, is limited. Less is known about long-term use of HMEs, and studies describing long-term compliance with HME use are scarce. This study investigated the long-term use of HMEs in laryngectomees.
Methods:
Questionnaires were sent to 195 laryngectomees, and 75 questionnaires were returned.
Results:
More than 85% of the respondents used an HME, of whom 77% were compliant users (ie, use for more than 20 hours per day). The incidence of pulmonary illnesses (either before or after surgery) was about 25%. More than 90% of the respondents were heavy smokers before laryngectomy. One third of the respondents are regularly exposed to dusty environments. Compliant HME users tend to make less use of external humidifiers and vaporizers, and have better pulmonary status and lower health-care costs. Regarding quality of life, patients who use a FreeHands device tended to have more frequent social contacts (r = 0.251; p = 0.030). The prevalence of depression is high, pointing to an urgent need to recognize and treat psychiatric problems such as depression and suicidal ideation in this patient group.
Conclusions:
These findings have implications for any postlaryngectomy research that uses pulmonary parameters.
Purpose Speech-language pathologists are playing a crucial role in the assessment and management of patients infected with severe acute respiratory syndrome coronavirus 2. Our goal was to synthesize ...peer-reviewed literature and association guidelines from around the world regarding dysphagia assessment and management for this specific population. Method A review of publications available in the PubMed database and official guidelines of international groups was performed on May 23, 2020. The information was synthesized and categorized into three content areas for swallowing: clinical evaluation, instrumental assessment, and rehabilitation. Results Five publications were identified in the PubMed database. Following title, abstract, and full-text review, only three publications met inclusion criteria: two reviews and one narrative report. Additionally, 19 international guidelines were reviewed. To assess swallowing, a modified clinical evaluation was recommended and only following a risk assessment. Instrumental assessments were often considered aerosol generating, especially transnasal procedures such as endoscopy and manometry. For this reason, many associations recommended that these examinations be performed only when essential and with appropriate personal protective equipment. Guidelines recommended that intervention should focus on compensatory strategies, including bolus modification, maneuvers/postural changes, and therapeutic exercises that can be conducted with physical distancing. Respiratory training devices were not recommended during rehabilitation. Conclusions International associations have provided extensive guidance regarding the level of risk related to the management of dysphagia in this population. To date, there are no scientific papers offering disease and/or recovery profiling for patients with dysphagia and coronavirus disease 2019. As a result, research in this area is urgently needed.
Pulmonary Rehabilitation After Total Laryngectomy Parrilla, Claudio; Minni, Antonio; Bogaardt, Hans ...
Annals of otology, rhinology & laryngology,
09/2015, Letnik:
124, Številka:
9
Journal Article
Recenzirano
Background:
Both the immediate beneficial physiological changes in a laboratory setting and the long-term clinical outcomes of heat and moisture exchanger (HME) use are well described. So far, there ...has not been any research published that provides detailed insight in the pattern of changes in both respiratory function and patients’ experiences with HMEs in the first weeks of use.
Methods:
A multicenter time-series study design with a 2-week double baseline period. All patients used the XtraHME for 12 weeks afterward. Data were collected 2 weeks, 6 weeks, and 12 weeks after the start of HME use.
Results:
Data of 30 patients were analyzed. Pulmonary symptoms decreased significantly during the 12 weeks of HME use. After 2 weeks, a significant decrease in daily coughs and daily forced expectorations was seen. The general quality of life showed a significant increase throughout the study. More general physical complaints also significantly decreased with HME use. Patient satisfaction with the HME was high.
Conclusions:
This study shows that there is a significant influence of the XtraHME on pulmonary status that can already be observed after 2 weeks of using the XtraHME and continues to improve further after 6 weeks of XtraHME use.
Purpose: With an ageing population, speech-language pathologists (SLPs) can expect to encounter legal and ethical challenges associated with palliative and end-of-life care more frequently. An ...awareness of the medico-legal and ethical framework for palliative dysphagia management will better equip SLPs to work effectively in this area.
Method: This narrative review examines a range of legislation, legal, ethical and SLP literature that is currently available to orient SLPs to legal and ethical palliative dysphagia management in the Australian context.
Result: Relevant legal and ethical considerations in palliative and end-of-life care are described.
Conclusion: SLPs have a role in palliative dysphagia management, however, this can involve unique legal and ethical challenges. The legal position on provision and cessation of nutrition and hydration differs between Australian States and Territories. Decisions by the courts have established a body of relevant case law. This article introduces SLPs to some of the important considerations for legal and ethical palliative care, but is not intended to be directive. SLPs are encouraged to explore their local options for ethical and medico-legal guidance. It is hoped that increasing SLPs awareness of many of the concepts discussed in this article enhances the provision of high-quality patient-centred care.
•Dominant hand manual dexterity was correlated with memory, executive function, processing speed, attention, and motor skills among people with multiple sclerosis (PwMS).•Non-dominant hand manual ...dexterity was correlated with memory, executive function, attention, and motor skills among PwMS.•Manual dexterity deficit was found to predict cognitive dysfunction among PwMS.
Problems with manual dexterity and cognition impact the everyday performance of people with multiple sclerosis (PwMS). Accumulated findings point to the relationship between deficits in manual dexterity and auditory domains of cognition with a lack of evidence on visuospatial and verbal aspects of cognitive functioning. Therefore, this study explores the relationship between manual dexterity and cognition in a cohort of PwMS.
This cross-sectional study collected data from 63 PwMS aged 22 to 55 through a convenient sampling method. Participants were diagnosed with relapsing-remitting multiple sclerosis (RRMS). Cognition was measured using a multi-domain computerized cognitive testing, NeuroTrax, and manual dexterity was measured using a 9-hole peg assessment. Spearman correlation was used to identify the correlation among cognition subtests as well as with manual dexterity. Linear regression analysis was also conducted to identify whether manual dexterity predicts cognitive functioning.
A significant negative correlation was found between 9-hole peg scores and global cognitive scores (GCS), r = -0.34, p = 006. The manual dexterity scores were also shown to predict GCS, R2= 0.165, p = 0.001.
Manual dexterity was found to not only predict cognitive dysfunction but was also associated with multiple cognitive domains. Understanding the relationship between manual dexterity and cognition and the inferred progression of deficits can assist clinicians to provide interventions at earlier stages of disease progression to potentially increase daily functioning and quality of life (QoL).
Persons with multiple sclerosis (MS) can experience language-related symptoms such as difficulty with word finding, understanding verbal information, and structuring discourse. These symptoms have ...negative psychological and interpersonal consequences. Studies exploring characteristics of language impairment in MS are limited. The aim of this study was to investigate what symptom-related (eg, fatigue), demographic (eg, age), clinical (eg, MS type), social network, and quality of life (QOL) variables are associated with language impairment in MS.
Participants were recruited internationally to complete an online questionnaire. A forward stepwise regression analysis was run with the dependent variable being a language impairment index from the Communication and Language Assessment questionnaire for persons with Multiple Sclerosis (CLAMS). Nineteen independent variables were entered into the regression.
Two hundred and two participants completed the questionnaire. The CLAMS language impairment score was significantly associated with self-reported cognitive impairment, speech and voice impairment, yes/no response to a binary question on presence of language impairment, group membership and participation, and QOL. The adjusted
value was 0.717 (
< .001).
Self-reported language impairment in MS is significantly associated with several symptom-related, social network, and QOL variables. These results provide an early model of language impairment in MS to guide future studies of treatment approaches and causative relationships between variables.
PDF
