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1.
Dysphagia ; 39(4): 666-683, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38180625

RESUMEN

The last two decades have seen increasing use of long-term ventilation (LTV) as an intervention in childhood. Children who use LTV have many risk factors for feeding and swallowing difficulties, including their underlying respiratory and/or neurological etiology, long hospitalizations, medical interventions, and limited exposure to oral feeding experiences. This review aimed to answer two questions: 1) 'What specific swallowing and feeding characteristics do these children experience?'; and 2) 'What impacts do these swallowing and feeding characteristics have on health status and quality of life?'. Texts were identified across bibliographic databases, reference lists, and grey literature. Studies were analyzed according to ventilation, feeding and swallowing, assessment and intervention, and quality of life parameters. Overall, 1919 papers were screened, with 31 papers included in the final data extraction process. A range of feeding and swallowing characteristics were observed, including oral secretion management difficulties, oral aversion, swallowing difficulties, and clinical signs of aspiration. Non-oral feeding was found to be the primary feeding method used. Little information on health status and quality of life was reported in scoping review texts. Children with LTV needs present with a range of feeding and swallowing concerns, and non-oral feeding is common. Further research is needed to understand the feeding and swallowing journey of this population. This will assist in future service planning and delivery, and in turn contribute to improving patient outcomes and quality of life.


Asunto(s)
Trastornos de Deglución , Deglución , Calidad de Vida , Respiración Artificial , Humanos , Trastornos de Deglución/terapia , Trastornos de Deglución/etiología , Trastornos de Deglución/fisiopatología , Niño , Deglución/fisiología , Respiración Artificial/efectos adversos , Respiración Artificial/métodos , Preescolar , Femenino , Masculino
2.
Dev Med Child Neurol ; 65(9): 1199-1205, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-36798989

RESUMEN

AIM: To agree wording of level descriptors for a measure of functional outcome of children's eating and drinking. METHOD: An online, modified Delphi method was used to gather feedback on current level descriptor wording and generate rewording suggestions. Thirty speech and language therapists, working in a variety of settings and geographical locations, were invited to be part of the Delphi expert panel. Content analysis was used to evaluate participants' comments and develop consensus level descriptors. Consensus for acceptable wording was set at 80% agreement. Face validity was assessed using 5-point Likert scales. RESULTS: Nineteen expert speech and language therapists (median experience 18 years) completed round one; 15 out of 19 completed round two. Level descriptor rating reached 80% agreement in two rounds. Additionally, 93% of participants agreed the scale would accurately capture change in their setting, with 87% likely to use the scale in practice. INTERPRETATION: This study has produced agreed wording for a functional measure of eating and drinking activity suitable for use with paediatrics feeding disorders, regardless of disease aetiology, presentation, age, or setting. Potential for widespread use is supported. Further evaluation of the tool's reliability and validity is required.


Asunto(s)
Consenso , Humanos , Niño , Reproducibilidad de los Resultados , Técnica Delphi
3.
Health Expect ; 26(2): 613-629, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36647692

RESUMEN

INTRODUCTION: Using co-design processes, we aimed to develop an evidence-based decision guide for family carers and hospital professionals to support decision-making about eating and drinking for hospital patients with severe dementia. METHODS: Following a systematic review, we interviewed people with mild dementia, family carers and hospital professionals in England. We then held co-design workshops with family carers and hospital professionals. In parallel with the workshops, we used a matrix to synthesize data from all studies and to develop a decision guide prototype. The prototype was iteratively refined through further co-design workshops and discussions among researchers and Patient and Public Involvement (PPI) representatives. We conducted user testing for final feedback and to finalize the decision guide. RESULTS: Most participants acknowledged the limited benefits of tube feeding and would not use or want it for someone with severe dementia. However, they found decision-making processes and communication about nutrition and hydration were emotionally demanding and poorly supported in acute hospitals. The co-design groups developed the aims of the decision guide to support conversations and shared decision-making processes in acute hospitals, and help people reach evidence-based decisions. It was designed to clarify decision-making stages, provide information and elicit the values/preferences of everyone involved. It encouraged person-centred care, best-interests decision-making and multidisciplinary team working. From user testing, family carers and hospital professionals thought the decision guide could help initiate conversations and inform decisions. The final decision guide was disseminated and is being used in clinical practice in England. CONCLUSION: We used rigorous and transparent processes to co-design the decision guide with everyone involved. The decision guide may facilitate conversations about nutrition and hydration and help people reach shared decisions that meet the needs and preferences of people with severe dementia. Future evaluation is required to test its real-world impacts. PATIENT OR PUBLIC CONTRIBUTION: People with mild dementia, family carers and hospital professionals contributed to the design of the decision guide through the interviews and co-design workshops. PPI members helped design study procedures and materials and prepare this manuscript.


Asunto(s)
Demencia , Humanos , Demencia/psicología , Cuidadores/psicología , Inglaterra , Hospitales
4.
Age Ageing ; 50(5): 1820-1828, 2021 09 11.
Artículo en Inglés | MEDLINE | ID: mdl-34120181

RESUMEN

BACKGROUND: Eating and drinking problems are common among people living with later-stage dementia, yet few studies have explored their perspectives. OBJECTIVE: This study aimed to explore how people living with mild dementia understand possible future eating and drinking problems and their perspectives on assistance. DESIGN: Qualitative study using semi-structured interviews. SETTING: Community. METHODS: We conducted semi-structured interviews with 19 people living with mild dementia. Interviews were transcribed verbatim and analysed thematically. RESULTS: Five themes were identified: (i) awareness of eating and drinking problems; (ii) food and drink representing an individual's identity and agency; (iii) delegating later decisions about eating and drinking to family carers; (iv) acceptability of eating and drinking options; and (v) eating and drinking towards the end of life. For people living with mild dementia, possible later eating and drinking problems could feel irrelevant and action may be postponed until they occur. Fears of being a burden to family and of being treated like a child may explain reluctance to discuss such future problems. People living with mild dementia might wish to preserve their agency and maintain good quality of life, rather than be kept alive at later stages by artificial nutrition and hydration. CONCLUSION: For people with mild dementia, eating and drinking problems may seem unrelated to them and so get left undiscussed. Negative connotations regarding eating and drinking problems may hinder the discussion. The optimal time to discuss possible future problems with eating and drinking with people with mild dementia may need an individual approach.


Asunto(s)
Demencia , Calidad de Vida , Cuidadores , Demencia/diagnóstico , Demencia/terapia , Humanos , Estado Nutricional , Investigación Cualitativa
5.
Cochrane Database Syst Rev ; 8: CD013503, 2021 08 13.
Artículo en Inglés | MEDLINE | ID: mdl-34387363

RESUMEN

BACKGROUND: The balance of benefits and harms associated with enteral tube feeding for people with severe dementia is not clear. An increasing number of guidelines highlight the lack of evidenced benefit and potential risks of enteral tube feeding. In some areas of the world, the use of enteral tube feeding is decreasing, and in other areas it is increasing. OBJECTIVES: To assess the effectiveness and safety of enteral tube feeding for people with severe dementia who develop problems with eating and swallowing or who have reduced food and fluid intake. SEARCH METHODS: We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's register, MEDLINE, Embase, four other databases and two trials registers on 14 April 2021. SELECTION CRITERIA: We included randomised controlled trials (RCTs), or controlled non-randomised studies. Our population of interest was adults of any age with a diagnosis of primary degenerative dementia of any cause, with severe cognitive and functional impairment, and poor nutritional intake. Eligible studies evaluated the effectiveness and complications of enteral tube feeding via a nasogastric or gastrostomy tube, or via jejunal post-pyloric feeding, in comparison with standard care or enhanced standard care, such as an intervention to promote oral intake. Our primary outcomes were survival time, quality of life, and pressure ulcers. DATA COLLECTION AND ANALYSIS: Three review authors screened citations and two review authors assessed full texts of potentially eligible studies against inclusion criteria. One review author extracted data, which were then checked independently by a second review author. We used the 'Risk Of Bias In Non-randomised Studies of Interventions' (ROBINS-I) tool to assess the risk of bias in the included studies. Risk of confounding was assessed against a pre-agreed list of key potential confounding variables. Our primary outcomes were survival time, quality of life, and pressure ulcers. Results were not suitable for meta-analysis, so we presented them narratively. We presented results separately for studies of percutaneous endoscopic gastrostomy (PEG) feeding, nasogastric tube feeding and studies using mixed or unspecified enteral tube feeding methods. We used GRADE methods to assess the overall certainty of the evidence related to each outcome for each study. MAIN RESULTS: We found no eligible RCTs. We included fourteen controlled, non-randomised studies. All the included studies compared outcomes between groups of people who had been assigned to enteral tube feeding or oral feeding by prior decision of a healthcare professional. Some studies controlled for a range of confounding factors, but there were high or very high risks of bias due to confounding in all studies, and high or critical risks of selection bias in some studies. Four studies with 36,816 participants assessed the effect of PEG feeding on survival time. None found any evidence of effects on survival time (low-certainty evidence). Three of four studies using mixed or unspecified enteral tube feeding methods in 310 participants (227 enteral tube feeding, 83 no enteral tube feeding) found them to be associated with longer survival time. The fourth study (1386 participants: 135 enteral tube feeding, 1251 no enteral tube feeding) found no evidence of an effect. The certainty of this body of evidence is very low. One study of PEG feeding (4421 participants: 1585 PEG, 2836 no enteral tube feeding) found PEG feeding increased the risk of pressure ulcers (moderate-certainty evidence). Two of three studies reported an increase in the number of pressure ulcers in those receiving mixed or unspecified enteral tube feeding (234 participants: 88 enteral tube feeding, 146 no enteral tube feeding). The third study found no effect (very-low certainty evidence).  Two studies of nasogastric tube feeding did not report data on survival time or pressure ulcers. None of the included studies assessed quality of life. Only one study, using mixed methods of enteral tube feeding, reported on pain and comfort, finding no difference between groups. In the same study, a higher proportion of carers reported very heavy burden in the enteral tube feeding group compared to no enteral tube feeding. Two studies assessed the effect of nasogastric tube feeding on mortality (236 participants: 144 nasogastric group, 92 no enteral tube feeding). One study of 67 participants (14 nasogastric, 53 no enteral tube feeding) found nasogastric feeding was associated with increased mortality risk. The second study found no difference in mortality between groups. The certainty of this evidence is very low. Results on mortality for those using PEG or mixed methods of enteral tube feeding were mixed and the certainty of evidence was very low. There was some evidence from two studies for enteral tube feeding improving nutritional parameters, but this was very low-certainty evidence. Five studies reported a variety of harm-related outcomes with inconsistent results. The balance of evidence suggested increased risk of pneumonia with enteral tube feeding. None of the included studies assessed behavioural and psychological symptoms of dementia. AUTHORS' CONCLUSIONS: We found no evidence that tube feeding improves survival; improves quality of life; reduces pain; reduces mortality; decreases behavioural and psychological symptoms of dementia; leads to better nourishment; improves family or carer outcomes such as depression, anxiety, carer burden, or satisfaction with care; and no indication of harm. We found some evidence that there is a clinically significant risk of pressure ulcers from enteral tube feeding. Future research should focus on better reporting and matching of control and intervention groups, and clearly defined interventions, measuring all the outcomes referred to here.


Asunto(s)
Demencia/complicaciones , Nutrición Enteral , Desnutrición/prevención & control , Adulto , Cuidadores , Gastrostomía , Humanos , Intubación Gastrointestinal/efectos adversos , Ensayos Clínicos Controlados Aleatorios como Asunto , Resultado del Tratamiento
6.
Dysphagia ; 36(2): 281-292, 2021 04.
Artículo en Inglés | MEDLINE | ID: mdl-32445060

RESUMEN

Dysphagia is common after stroke, leading to adverse outcome. The Effortful Swallow (ES) is recommended to improve swallowing but it is not known if dysphagic patients can increase muscle activity during the exercise or if age affects performance. Providing surface electromyographic (sEMG) biofeedback during dysphagia therapy may enhance exercise completion, but this has not been investigated and the technique's acceptability to patients is not known. Aims: To determine if age or post-stroke dysphagia affect the ability to increase submental muscle activity during the ES, if sEMG biofeedback improves ES performance and if sEMG is an acceptable addition to therapy. In a Phase I study submental sEMG amplitudes were measured from 15 people with dysphagia < 3 months post-stroke and 85 healthy participants aged 18-89 years during swallowing (NS) and when they performed the ES with and without sEMG biofeedback. Participant feedback was collected via questionnaire. Measurements were compared with repeated measures ANOVA and age effects were examined with linear regression. Both groups produced significantly greater muscle activity for the ES than NS (p < 0.001) and significantly increased activity with biofeedback (p < 0.001) with no effect of age. Participant feedback about sEMG was very positive; over 98% would be happy to use it regularly. The ES is a physiologically beneficial dysphagia exercise, increasing muscle activity during swallowing. sEMG biofeedback further enhances performance and is considered an acceptable technique by patients. These findings support the potential application of sEMG biofeedback and the ES in dysphagia therapy in stroke, justifying further investigation of patient outcome.


Asunto(s)
Trastornos de Deglución , Envejecimiento Saludable , Biorretroalimentación Psicológica , Deglución , Trastornos de Deglución/etiología , Trastornos de Deglución/terapia , Electromiografía , Humanos
7.
J Adv Nurs ; 77(2): 664-680, 2021 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-33249602

RESUMEN

AIMS: To synthesize the qualitative evidence of the views and experiences of people living with dementia, family carers, and practitioners on practice related to nutrition and hydration of people living with dementia who are nearing end of life. DESIGN: Systematic review and narrative synthesis of qualitative studies. DATA SOURCES: MEDLINE, Embase, PsycINFO, CINAHL. REVIEW METHODS: Databases were searched for qualitative studies from January 2000-February 2020. Quantitative studies, or studies reporting on biological mechanisms, assessments, scales or diagnostic tools were excluded. Results were synthesized using a narrative synthesis approach with thematic analysis. RESULTS: Twenty studies were included; 15 explored the views of practitioners working with people living with dementia in long-term care settings or in hospitals. Four themes were developed: challenges of supporting nutrition and hydration; balancing the views of all parties involved with 'the right thing to do'; national context and sociocultural influences; and strategies to support nutrition and hydration near the end of life in dementia. CONCLUSION: The complexity of supporting nutrition and hydration near the end of life for someone living with dementia relates to national context, lack of knowledge, and limited planning while the person can communicate. IMPACT: This review summarizes practitioners and families' experiences and highlights the need to include people living with dementia in studies to help understand their views and preferences about nutrition and hydration near the end of life; and those of their families supporting them in the community. The review findings are relevant to multidisciplinary teams who can learn from strategies to help with nutrition and hydration decisions and support.


Asunto(s)
Demencia , Fluidoterapia , Apoyo Nutricional , Calidad de Vida , Cuidado Terminal , Adulto , Anciano , Australia , Muerte , Humanos , Estudios Retrospectivos
8.
BMC Cancer ; 20(1): 360, 2020 Apr 29.
Artículo en Inglés | MEDLINE | ID: mdl-32349693

RESUMEN

BACKGROUND: Dysphagia or difficulty in swallowing affects quality of life for most patients with head and neck cancer. SIP SMART - [Swallowing Intervention Package: Self-Monitoring, Assessment, Rehabilitation Training] aims to improve post-treatment swallowing outcomes through a targeted and tailored pre-treatment intervention. This feasibility study assessed 1) recruitment and retention, 2) patient acceptability of randomisation and participation, 3) patient adherence, and 4) sought to identify a suitable primary outcome for a definitive trial, including sample size estimation. METHODS: This two-arm parallel group non-blinded randomised feasibility trial took place within a head and neck centre at a teaching hospital in London, UK. Patients newly diagnosed with stage III/IV head and neck cancer were recruited and underwent 6-month follow-up. Patients were randomised to SIP-SMART or usual care via an online web-based system. SIP SMART comprised two 45-min consultations including a baseline clinical and instrumental swallowing assessment, relevant educational information, targeted swallowing exercises, and specific behaviour change strategies to increase exercise adherence. Usual care comprised a single session including a baseline clinical assessment and generic information about the likely impact of treatment on swallowing. RESULTS: A total of 106 patients were identified at pre-screening, 70 were assessed for eligibility. Twenty-six patients did not meet eligibility criteria [0.37, 95% CI 0.27 to 0.49]. Five of 44 [0.11, 95% CI 0.05 to 0.24] eligible patients were not approached by researchers during clinic. Seven [0.18, 95% CI 0.08 to 0.33] of the 39 approached declined participation. Target recruitment (32 consented patients) was achieved within the timeframe. At 6-months 29/32 [0.91, 95% CI 0.76 to 0.97] patients remained in the trial. Acceptability of randomisation and participation in the intervention was favourable, and adherence to the exercises exceeded the pre-defined 35% minimum criterion. The MD Anderson Dysphagia Inventory swallow related quality of life measure was selected as the most suitable primary outcome for sample size estimation. No adverse effects arose from the intervention, or study participation. CONCLUSIONS: A definitive trial of the SIP SMART intervention compared to usual care is feasible and can be undertaken with patients with head and neck cancer treated within the NHS. TRIAL REGISTRATION: ISRCTN40215425, registered retrospectively.


Asunto(s)
Trastornos de Deglución/rehabilitación , Terapia por Ejercicio/métodos , Neoplasias de Cabeza y Cuello/rehabilitación , Trastornos de Deglución/fisiopatología , Trastornos de Deglución/terapia , Intervención Educativa Precoz , Estudios de Factibilidad , Femenino , Estudios de Seguimiento , Neoplasias de Cabeza y Cuello/fisiopatología , Neoplasias de Cabeza y Cuello/terapia , Humanos , Masculino , Persona de Mediana Edad , Cooperación del Paciente , Pronóstico , Calidad de Vida , Estudios Retrospectivos
9.
Clin Linguist Phon ; 33(10-11): 1063-1070, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31035809

RESUMEN

Intelligibility of speech is a key outcome in speech and language therapy (SLT) and research. SLT students frequently participate as raters of intelligibility but we lack information about whether they rate intelligibility in the same way as the general public. This paper aims to determine if there is a difference in the intelligibility ratings made by SLT students (trained in speech related topics) compared to individuals from the general public (untrained). The SLT students were in year 2 of a BSc programme or the first 6 months of a MSc programme. We recorded 10 speakers with Parkinson's disease (PD) related speech reading aloud the words and sentences from the Assessment of Intelligibility of Dysarthric Speech. These speech recordings were rated for intelligibility by 'trained' raters and 'untrained' raters. The effort required to understand the speech was also reported. There were no significant differences in the measures of intelligibility from the trained and untrained raters for words or sentences after adjusting for speaker by including them as a covariate in the model. There was a slight increase in effort reported by the untrained raters for the sentences. This difference in reported effort was not evident with the words. SLT students can be recruited alongside individuals from the general public as naïve raters for evaluating intelligibility in people with speech disorders.


Asunto(s)
Disartria/fisiopatología , Variaciones Dependientes del Observador , Enfermedad de Parkinson/complicaciones , Inteligibilidad del Habla/fisiología , Patología del Habla y Lenguaje/educación , Estudiantes , Percepción Auditiva/fisiología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Lectura , Percepción del Habla/fisiología
10.
Cochrane Database Syst Rev ; 9: CD011077, 2018 09 24.
Artículo en Inglés | MEDLINE | ID: mdl-30251253

RESUMEN

BACKGROUND: People with dementia can have feeding and swallowing difficulties (dysphagia). Modification of the consistency of food or fluids, or both, is a common management strategy. However, diet modification can affect quality of life and may lead to dehydration and malnutrition. Evidence on the benefits and risks of modifying food and fluids is mandatory to improve the care of people with dementia and dysphagia. OBJECTIVES: To determine the effectiveness and adverse effects associated with modifying the consistency of food and fluids in improving oral intake and eliminating aspiration in adults with dysphagia and dementia. SEARCH METHODS: We searched ALOIS (the Specialised Register of the Cochrane Dementia and Cognitive Improvement Group), the Cochrane Library, MEDLINE via Ovid SP, Embase via Ovid SP, PsycINFO via Ovid SP, CINAHL via EBSCOhost, LILACS via BIREME, ClinicalTrials.gov and the World Health Organization (WHO) Portal on 9 May 2018. We also checked the reference lists of relevant articles to identify any additional studies. SELECTION CRITERIA: We included randomised controlled trials (RCTs), quasi-RCTs and cluster-RCTs published in any language that measured any of the outcomes of interest. We included trials with adults with a clinical diagnosis of dementia with symptoms and signs of dysphagia confirmed on instrumental assessment. We included participants with all types, stages and severities of dementia. Control groups received either no intervention or interventions not involving diet modification or modification to sensory properties of food. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed for inclusion all potential studies identified. Data were extracted independently along with assessment of methodological quality using standard Cochrane methods. We contacted study authors for additional unpublished information. MAIN RESULTS: No trials on modification of food met the inclusion criteria. We included two studies that examined modification to fluids. Both were part of the same large multicentre trial and included people with dementia and people with or without dementia and Parkinson's disease. Participation in the second trial was determined by results from the first trial. With unpublished data supplied by study authors, we examined data from participants with dementia only. The first study, a cross-over trial, investigated the immediate effects on aspiration of two viscosities of liquids (nectar thick and honey thick) compared to regular liquids in 351 participants with dementia using videofluoroscopy. Regular liquids with a chin down head posture, as well as regular liquids without any intervention were also compared. The sequence of interventions during videofluoroscopy may have influenced response to intervention. The second study, a parallel designed RCT, compared the effect of nectar and honey thick liquids with a chin down head posture over a three-month period in a subgroup of 260 participants with dementia. Outcomes were pneumonia and adverse intervention effects. Honey thick liquids, which are more consistent with descriptors for 'spoon thick' or 'extremely thick' liquids, showed a more positive impact on immediate elimination of aspiration during videofluoroscopy, but this consistency showed more adverse effects in the second follow-up study. During the second three-month follow-up trial, there were a greater number of incidents of pneumonia in participants receiving honey thick liquids than those receiving nectar thick liquids or taking regular liquids with a chin down posture. There were no deaths classified as 'definitely related' to the type of fluids prescribed. Neither trial addressed quality of life. Risk of bias for both studies is high. The overall quality of evidence for outcomes in this review is low. AUTHORS' CONCLUSIONS: We are uncertain about the immediate and long-term effects of modifying the consistency of fluid for swallowing difficulties in dementia as too few studies have been completed. There may be differences in outcomes depending on the grade of thickness of fluids and the sequence of interventions trialled in videofluoroscopy for people with dementia. Clinicians should be aware that while thickening fluids may have an immediate positive effect on swallowing, the long-term impact of thickened fluids on the health of the person with dementia should be considered. Further high-quality clinical trials are required.


Asunto(s)
Bebidas/normas , Trastornos de Deglución/fisiopatología , Deglución/fisiología , Demencia/fisiopatología , Manipulación de Alimentos , Calidad de los Alimentos , Neumonía por Aspiración/prevención & control , Adulto , Trastornos de Deglución/complicaciones , Deshidratación/etiología , Deshidratación/prevención & control , Demencia/complicaciones , Fluoroscopía/métodos , Humanos , Desnutrición/etiología , Desnutrición/prevención & control , Ensayos Clínicos Controlados Aleatorios como Asunto
11.
BMC Cancer ; 17(1): 43, 2017 01 10.
Artículo en Inglés | MEDLINE | ID: mdl-28068939

RESUMEN

BACKGROUND: Dysphagia is a significant side-effect following treatment for head and neck cancers, yet poor adherence to swallowing exercises is frequently reported in intervention studies. Behaviour change techniques (BCTs) can be used to improve adherence, but no review to date has described the techniques or indicated which may be more associated with improved swallowing outcomes. METHODS: A systematic review was conducted to identify behavioural strategies in swallowing interventions, and to explore any relationships between these strategies and intervention effects. Randomised and quasi-randomised studies of head and neck cancer patients were included. Behavioural interventions to improve swallowing were eligible provided a valid measure of swallowing function was reported. A validated and comprehensive list of 93 discrete BCTs was used to code interventions. Analysis was conducted via a structured synthesis approach. RESULTS: Fifteen studies (8 randomised) were included, and 20 different BCTs were each identified in at least one intervention. The BCTs identified in almost all interventions were: instruction on how to perform the behavior, setting behavioural goals and action planning. The BCTs that occurred more frequently in effective interventions, were: practical social support, behavioural practice, self-monitoring of behaviour and credible source for example a skilled clinician delivering the intervention. The presence of identical BCTs in comparator groups may diminish effects. CONCLUSIONS: Swallowing interventions feature multiple components that may potentially impact outcomes. This review maps the behavioural components of reported interventions and provides a method to consistently describe these components going forward. Future work may seek to test the most effective BCTs, to inform optimisation of swallowing interventions.


Asunto(s)
Terapia Conductista , Trastornos de Deglución/terapia , Terapia por Ejercicio , Neoplasias de Cabeza y Cuello/complicaciones , Conductas Relacionadas con la Salud , Trastornos de Deglución/etiología , Trastornos de Deglución/fisiopatología , Trastornos de Deglución/psicología , Humanos , Cooperación del Paciente , Pronóstico
12.
Dysphagia ; 32(4): 559-569, 2017 08.
Artículo en Inglés | MEDLINE | ID: mdl-28424898

RESUMEN

Poor patient adherence to swallowing exercises is commonly reported in the dysphagia literature on patients treated for head and neck cancer. Establishing the effectiveness of exercise interventions for this population may be undermined by patient non-adherence. The purpose of this study was to explore the barriers and facilitators to exercise adherence from a patient perspective, and to determine the best strategies to reduce the barriers and enhance the facilitators. In-depth interviews were conducted on thirteen patients. We used a behaviour change framework and model [Theoretical domains framework and COM-B (Capability-opportunity-motivation-behaviour) model] to inform our interview schedule and structure our results, using a content analysis approach. The most frequent barrier identified was psychological capability. This was highlighted by patient reports of not clearly understanding reasons for the exercises, forgetting to do the exercises and not having a system to keep track. Other barriers included feeling overwhelmed by information at a difficult time (lack of automatic motivation) and pain and fatigue (lack of physical capability). Main facilitators included having social support from family and friends, the desire to prevent negative consequences such as long-term tube feeding (reflective motivation), having the skills to do the exercises (physical capability), having a routine or trigger and receiving feedback on the outcome of doing exercises (automatic motivation). Linking these findings back to the theoretical model allows for a more systematic selection of theory-based strategies that may enhance the design of future swallowing exercise interventions for patients with head and neck cancer.


Asunto(s)
Trastornos de Deglución/psicología , Terapia por Ejercicio/psicología , Ejercicio Físico/psicología , Neoplasias de Cabeza y Cuello/psicología , Cooperación del Paciente/psicología , Trastornos de Deglución/etiología , Trastornos de Deglución/terapia , Femenino , Neoplasias de Cabeza y Cuello/complicaciones , Humanos , Masculino , Persona de Mediana Edad , Motivación , Investigación Cualitativa , Apoyo Social
14.
Dysphagia ; 30(1): 2-26, 2015 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-25343878

RESUMEN

Texture modification has become one of the most common forms of intervention for dysphagia, and is widely considered important for promoting safe and efficient swallowing. However, to date, there is no single convention with respect to the terminology used to describe levels of liquid thickening or food texture modification for clinical use. As a first step toward building a common taxonomy, a systematic review was undertaken to identify empirical evidence describing the impact of liquid consistency and food texture on swallowing behavior. A multi-engine search yielded 10,147 non-duplicate articles, which were screened for relevance. A team of ten international researchers collaborated to conduct full-text reviews for 488 of these articles, which met the study inclusion criteria. Of these, 36 articles were found to contain specific information comparing oral processing or swallowing behaviors for at least two liquid consistencies or food textures. Qualitative synthesis revealed two key trends with respect to the impact of thickening liquids on swallowing: thicker liquids reduce the risk of penetration-aspiration, but also increase the risk of post-swallow residue in the pharynx. The literature was insufficient to support the delineation of specific viscosity boundaries or other quantifiable material properties related to these clinical outcomes. With respect to food texture, the literature pointed to properties of hardness, cohesiveness, and slipperiness as being relevant both for physiological behaviors and bolus flow patterns. The literature suggests a need to classify food and fluid behavior in the context of the physiological processes involved in oral transport and flow initiation.


Asunto(s)
Deglución , Alimentos , Dureza , Humanos , Factores de Riesgo , Viscosidad
15.
Dysphagia ; 29(1): 52-60, 2014 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-23860585

RESUMEN

This study examined the oral feeding in a group of adults with Down syndrome. None of the 23 participants in the study had reported oral feeding difficulties, and all independently ate a full oral diet (food and liquids). Observations were made during the consumption of one meal and one drink. The eating and drinking behaviours observed included eating rate and ability to keep food in the mouth, and these were considered in conjunction with oral and pharyngeal phase skills and difficulties. Coughing, an overt sign of possible aspiration with its attendant risk of upper respiratory tract infection, was seen in 56.5 % of participants. In addition, several of the observed oral feeding behaviours of this group of individuals may be socially unacceptable and therefore likely to compromise quality of life. A number of behaviours with implications for both health and quality of life may be amenable to simple behaviour modification or to changes to the environment. Further study into the causes of these oral feeding difficulties, their implications for social integration, and their potential remediation is required.


Asunto(s)
Trastornos de Deglución/etiología , Deglución/fisiología , Síndrome de Down/complicaciones , Ingestión de Alimentos/fisiología , Conducta Alimentaria/psicología , Calidad de Vida , Adulto , Trastornos de Deglución/fisiopatología , Trastornos de Deglución/psicología , Síndrome de Down/fisiopatología , Síndrome de Down/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Grabación en Video , Adulto Joven
16.
PLoS One ; 19(2): e0287872, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38386657

RESUMEN

BACKGROUND: The last three decades have seen a growth in the number of children requiring long-term ventilation. Children with long-term ventilation present with underlying respiratory and neurological conditions that place them at risk of feeding and swallowing difficulties. To date, a scoping review or systematic review investigating the feeding and swallowing outcomes of children with long-term ventilation needs has not been conducted. AIMS: This paper describes a protocol for a scoping review of the feeding and swallowing outcomes of children receiving long-term ventilation. METHODS: This scoping review protocol will utilize the Joanna Briggs Institute scoping review methodology guideline. Our review will focus on the feeding and swallowing outcomes of children aged 0 to 18 years with long-term ventilation needs. A full search strategy initially created by the authors and a research librarian was conducted on the PubMed database. Following this, pilot testing took place to determine discrepancies in eligibility criteria. A full search strategy will be conducted across several databases. A data extraction form has been developed by the authors and will be used during the scoping review process. DISCUSSION: This protocol has been created to provide a rigorous and comprehensive basis for undertaking a scoping review. All necessary steps have been completed in order to commence the scoping review. REGISTRATION: This scoping review protocol was registered on Open Science Framework on the 26th November 2021 (Registration DOI 10.17605/OSF.IO/NQBPD).

17.
Orphanet J Rare Dis ; 19(1): 253, 2024 Jul 04.
Artículo en Inglés | MEDLINE | ID: mdl-38965635

RESUMEN

INTRODUCTION: Eating, drinking and swallowing difficulties are commonly reported morbidities for individuals born with OA/TOF. This study aimed to determine the nature and prevalence of eating, drinking and oro-pharyngeal swallowing difficulties reported in this population. METHOD: A systematic review and meta-proportional analysis were conducted (PROSPERO: CRD42020207263). MEDLINE, EMBASE, CINAHL, Pubmed, Scopus, Web of Science databases and grey literature were searched. Quantitative and qualitative data were extracted relating to swallow impairment, use of mealtime adaptations and eating and drinking-related quality of life. Quantitative data were summarised using narrative and meta-proportional analysis methods. Qualitative data were synthesised using a meta-aggregation approach. Where quantitative and qualitative data described the same phenomenon, a convergent segregated approach was used to synthesise data. RESULTS: Sixty-five studies were included. Six oro-pharyngeal swallow characteristics were identified, and pooled prevalence calculated: aspiration (24%), laryngeal penetration (6%), oral stage dysfunction (11%), pharyngeal residue (13%), nasal regurgitation (7%), delayed swallow initiation (31%). Four patient-reported eating/drinking difficulties were identified, and pooled prevalence calculated: difficulty swallowing solids (45%), difficulty swallowing liquids (6%), odynophagia (30%), coughing when eating (38%). Three patient-reported mealtime adaptations were identified, and pooled prevalence calculated: need for water when eating (49%), eating slowly (37%), modifying textures (28%). Mixed methods synthesis of psychosocial impacts identified 34% of parents experienced mealtime anxiety and 25% report challenging mealtime behaviours reflected in five qualitative themes: fear and trauma associated with eating and drinking, isolation and a lack of support, being aware and grateful, support to cope and loss. CONCLUSIONS: Eating and drinking difficulties are common in adults and children with repaired OA/TOF. Oro-pharyngeal swallowing difficulties may be more prevalent than previously reported. Eating, drinking and swallowing difficulties can impact on psychological well-being and quality of life, for the individual and parents/family members. Long-term, multi-disciplinary follow-up is warranted.


Asunto(s)
Trastornos de Deglución , Atresia Esofágica , Humanos , Trastornos de Deglución/etiología , Atresia Esofágica/cirugía , Fístula Traqueoesofágica/cirugía , Calidad de Vida , Ingestión de Alimentos/fisiología , Ingestión de Líquidos/fisiología
18.
BMJ ; 386: e078341, 2024 07 10.
Artículo en Inglés | MEDLINE | ID: mdl-38986549

RESUMEN

OBJECTIVES: To assess the clinical effectiveness of two speech and language therapy approaches versus no speech and language therapy for dysarthria in people with Parkinson's disease. DESIGN: Pragmatic, UK based, multicentre, three arm, parallel group, unblinded, randomised controlled trial. SETTING: The speech and language therapy interventions were delivered in outpatient or home settings between 26 September 2016 and 16 March 2020. PARTICIPANTS: 388 people with Parkinson's disease and dysarthria. INTERVENTIONS: Participants were randomly assigned to one of three groups (1:1:1): 130 to Lee Silverman voice treatment (LSVT LOUD), 129 to NHS speech and language therapy, and 129 to no speech and language therapy. LSVT LOUD consisted of four, face-to-face or remote, 50 min sessions each week delivered over four weeks. Home based practice activities were set for up to 5-10 mins daily on treatment days and 15 mins twice daily on non-treatment days. Dosage for the NHS speech and language therapy was determined by the local therapist in response to the participants' needs (estimated from prior research that NHS speech and language therapy participants would receive an average of one session per week over six to eight weeks). Local practices for NHS speech and language therapy were accepted, except for those within the LSVT LOUD protocol. Analyses were based on the intention to treat principle. MAIN OUTCOME MEASURES: The primary outcome was total score at three months of self-reported voice handicap index. RESULTS: People who received LSVT LOUD reported lower voice handicap index scores at three months after randomisation than those who did not receive speech and language therapy (-8.0 points (99% confidence interval -13.3 to -2.6); P<0.001). No evidence suggests a difference in voice handicap index scores between NHS speech and language therapy and no speech and language therapy (1.7 points (-3.8 to 7.1); P=0.43). Patients in the LSVT LOUD group also reported lower voice handicap index scores than did those randomised to NHS speech and language therapy (-9.6 points (-14.9 to -4.4); P<0.001). 93 adverse events (predominately vocal strain) were reported in the LSVT LOUD group, 46 in the NHS speech and language therapy group, and none in the no speech and language therapy group. No serious adverse events were recorded. CONCLUSIONS: LSVT LOUD was more effective at reducing the participant reported impact of voice problems than was no speech and language therapy and NHS speech and language therapy. NHS speech and language therapy showed no evidence of benefit compared with no speech and language therapy. TRIAL REGISTRATION: ISRCTN registry ISRCTN12421382.


Asunto(s)
Disartria , Terapia del Lenguaje , Enfermedad de Parkinson , Logopedia , Humanos , Enfermedad de Parkinson/complicaciones , Disartria/etiología , Disartria/terapia , Disartria/rehabilitación , Masculino , Femenino , Logopedia/métodos , Anciano , Terapia del Lenguaje/métodos , Reino Unido , Persona de Mediana Edad , Resultado del Tratamiento , Entrenamiento de la Voz , Medicina Estatal
19.
Int J Lang Commun Disord ; 48(4): 394-401, 2013.
Artículo en Inglés | MEDLINE | ID: mdl-23889835

RESUMEN

BACKGROUND: Entry to speech and language therapy (SLT) undergraduate pre-registration programmes in the UK is usually achieved through qualifications attained at school (e.g. A-levels). A smaller number of people who did not succeed academically at school enter through qualifications achieved post-schooling, e.g. Access to Higher Education courses. This second group of students are attractive recruits to SLT training programmes as they bring different experiences and backgrounds to the programme and to the SLT profession. However, there are no published studies that explore the academic performance or degree and employment outcomes of students who enter university through this route. AIMS: To investigate the success of non-traditional entry students, specifically those with Access qualifications, on one pre-registration SLT undergraduate degree at a university in the UK. Success is measured in terms of module results, obtaining a degree, the ability to register as an SLT and first employment destination post-graduation. METHODS & PROCEDURES: University applications were reviewed and students who entered via an Access course were identified for a ten-year period. Results for modules, individual assessments and final degree classification were obtained from their files and were compared against the mean score of traditional entry students on the years of the course covered by this study using a series of one sample t-tests. OUTCOMES & RESULTS: The students who entered through the non-traditional academic route are generally successful in completing their degree and in registering to work as an SLT. However, as a group they perform less well on the degree overall, on individual modules and on written examinations and they do not close this performance gap over the four years of the degree. In contrast, however, they perform on a par with their peers on other types of assessment (e.g. clinical placement, case study, data exercise). The Access students were more likely than traditional entry students to be working as an SLT six-months post-qualification. CONCLUSIONS & IMPLICATIONS: These results suggest that some types of assessment may be more effective at tapping the skills of students from non-traditional academic backgrounds, and that more tailored support could be provided for this group of students in tackling university written examinations throughout all years of the programme. Despite limited preparation for university-level study and mixed performance on assessment, students from non-traditional academic backgrounds can do well at university and successfully gain employment as SLTs.


Asunto(s)
Terapia del Lenguaje/educación , Criterios de Admisión Escolar , Logopedia/educación , Estudiantes , Adolescente , Adulto , Curriculum , Escolaridad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Reino Unido , Universidades , Adulto Joven
20.
BMJ Paediatr Open ; 7(1)2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-37012004

RESUMEN

BACKGROUND: Children with medical complexity is an increasing population whose parents and healthcare providers face multiple decisions. Shared decision-making is a process where patients, their families and healthcare providers collaborate to make decisions based on clinical evidence and informed preferences of the family. Shared decision-making has benefits for the child, family and healthcare providers, including improved parental understanding of the child's difficulties, increased participation, improved coping skills and more efficient healthcare use. It is, however, poorly implemented. AIMS AND METHODS: A scoping review was conducted to explore shared decision-making for children with medical complexity in community health services, including how shared decision-making is defined in research, how it is implemented, including barriers and facilitators and recommendations for research. Six databases were systematically searched for papers published in English up to May 2022: Medline, CINAHL, EMBASE, PsycINFO, PubMed, Cochrane Database of Systematic Reviews and sources of grey literature. The review is reported according to the Preferred Reporting Items for Scoping Reviews. RESULTS: Thirty sources met the inclusion criteria. Most factors can either be a facilitator or barrier to shared decision-making depending on the context. Two significant barriers to shared decision-making in this population include uncertainty about the child's diagnosis, prognosis, and treatment options and the presence of hierarchy and power imbalance during clinical encounters with healthcare providers. Further influencing factors include continuity of care, the availability of accurate, accessible, adequate, and balanced information and the interpersonal and communication skills of parents and healthcare providers. CONCLUSION: Uncertainty about diagnosis, prognosis and treatment outcomes for children with medical complexity are additional challenges to the known barriers and facilitators to shared decision-making in community health services. Effective implementation of shared decision-making requires advancement of the evidence base for children with medical complexity, reducing power imbalance in clinical encounters, improving continuity of care, and improving the availability and accessibility of information resources.


Asunto(s)
Toma de Decisiones Conjunta , Toma de Decisiones , Humanos , Niño , Revisiones Sistemáticas como Asunto , Participación del Paciente , Servicios de Salud Comunitaria
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