£25 and a biscuit: Women's Health Research and Public Engagement in the UK.

It is over a  year since the Department of Health launched the Women's Health Strategy for England and included the rally cry of "women's voices". However, methods and modes of the inclusion of women in their own health and health research still fall short. Patient and public engagement and involvement (PPIE) in women's health research is considered a hallmark of a moral, ethical, and democratic society. Despite the call for the inclusion of "women's voices" and "women's stories", approaches to PPIE often remain tokenistic and don't address issues of representation, equality, and diversity or respond to wider racial inequalities in health. This past August marked the 103rd birthday of the late Henrietta Lacks who died of cervical cancer. Clones of her cells (HeLa cells) obtained without consent, continue to be used in laboratories around the world and serves as an ongoing reminder of dynamics and power in health research relationships with the public today. Historically, women have been mistreated and excluded from research and the reality that Black women in the UK remain 3.7 times more likely to die in childbirth makes the effectiveness of our research pathways critical (MBRRACE-UK, https://www.npeu.ox.ac.uk/mbrrace-uk ). PPIE holds much potential to contribute to the improvement of shortcomings in maternity and women's health, but not without deeper understanding of the ways in which engagement intrinsically, works. This article raises criticism of the current quality of engagement in women's health research and calls for a redesign of our frameworks and the need to explore new configurations of the relationship between women's health, research, and people.

It is one year since the Department of Health launched the Women's Health Strategy for England and included the rally cry of "women's voices". However, methods and modes of the inclusion of women in their own health and health research still fall short. Patient and public engagement and involvement (PPIE) in women's health research is considered a hallmark of a moral, ethical, and democratic society. Despite the call for the inclusion of "women's voices" and "women's stories", approaches to PPIE often remain tokenistic and don't address issues of representation, equality, and diversity, or respond wider racial inequalities in health. This past August marked the 103rd birthday of the late Henrietta Lacks who died of cervical cancer. Clones of her cells (HeLa cells) obtained without consent, continue to be used in laboratories around the world and serves as an ongoing reminder of dynamics and power in health research relationships with the public today. Historically, women have been mistreated and excluded from research and the reality that Black women in the UK remain 3.7 times more likely to die in childbirth makes the effectiveness of our research pathways critical [9]. PPIE holds much potential to contribute to the improvement of shortcomings in maternity and women's health, but not without deeper understanding of the ways in which engagement intrinsically, works. This article raises criticism of the current quality of engagement in women's health research and calls for a redesign of our frameworks and the need to explore new configurations of the relationship between women's health, research, and people.

Outcome monitoring and risk stratification after cardiac procedure in neonates, infants, children and young adults born with congenital heart disease: protocol for a multicentre prospective cohort study (Children OMACp).

INTRODUCTION: Congenital heart disease (CHD) represents the most common birth defect, affecting from 0.4% to 1.2% of children born in developed countries. The survival of these patients has increased significantly, but CHD remains one of the major causes of neonatal and childhood death. The aetiology of CHD is complex, with some evidence of both genetic and environmental causes. However, there is still lack of knowledge regarding modifiable risk factors and molecular and genetic mechanisms underlying the development of CHD. This study aims to develop a prospective cohort of patients undergoing cardiac procedures that will bring together routinely collected clinical data and biological samples from patients and their biological mothers, in order to investigate risk factors and predictors of postoperative-outcomes, as well as better understanding the effect of the surgical intervention on the early and long-term outcomes. METHODS AND ANALYSIS: Children OMACp (OMACp, outcome monitoring after cardiac procedure in congenital heart disease) is a multicentre, prospective cohort study recruiting children with CHD undergoing a cardiac procedure. The study aims to recruit 3000 participants over 5 years (2019-2024) across multiple UK sites. Routine clinical data will be collected, as well as participant questionnaires collecting sociodemographic, NHS resource use and quality of life data. Biological samples (blood, urine and surgical waste tissue from patients, and blood and urine samples from biological mothers) will be collected where consent has been obtained. Follow-up outcome and questionnaire data will be collected for 5 years. ETHICS AND DISSEMINATION: The study was approved by the London-Brent Research Ethics Committee on 30 July 2019 (19/SW/0113). Participants (or their parent/guardian if under 16 years of age) must provide informed consent prior to being recruited into the study. Mothers who wish to take part must also provide informed consent prior to being recruited. The study is sponsored by University Hospitals Bristol and Weston Foundation Trust and is managed by the University of Bristol. Children OMACp is adopted onto the National Institute for Health Research Clinical Research Network portfolio. Findings will be disseminated through peer-reviewed publications, presentation at conference, meetings and through patient organisations and newsletters. TRIAL REGISTRATION NUMBER: ISRCTN17650644.

Electronic Patient Reported Outcomes for Miscarriage Research in Tommy's Net.

The Tommy's National Centre for Miscarriage Research aims to support the diagnosis and treatment for couples suffering from recurrent miscarriage. Tommy's Net is an electronic data gathering tool, collecting miscarriage data and links with hospital Clinical Information System databases. The gathering of patient reported data is an important aspect, especially as data relating to pregnancy and miscarriage events are often left unreported. METHODS: Both traditional paper-based and electronic patient reported outcome (ePRO) solutions have been explored to improve response rates, minimize data redundancy and reduce burden on staff. Popular ePRO survey solutions have been compared, including REDCap, SurveyMonkey, Qualtrics and LimeSurvey. RESULTS: LimeSurvey was selected as the most appropriate solution as it provided self-hosting capability, SMS integration and ease of use. CONCLUSION: We have implemented a LimeSurvey based ePRO system for collection of baseline and follow-up data for participants on the Tommy's study.

The characteristics, life circumstances and self-concept of 13 year olds with and without disabilities in Ireland: A secondary analysis of the Growing Up in Ireland (GUI) study.

BACKGROUND: Population-based studies provide important data to inform policy and service planning for vulnerable children in society. The aim of this study was to characterise social and educational circumstances and self-concept among a nationally representative sample of 13 year olds with developmental disabilities in Ireland. METHODS: A cross-sectional, secondary analysis of data collected from the Growing Up in Ireland (GUI) study was conducted. Descriptive statistics were used to calculate the reported prevalence of disabilities as reported by parents. Differences across the groups (those with and without disabilities) were analysed in relation to gender, socio-economic and school factors. Special education support received in school was described. The association between low self-concept scores (as measured by the Piers Harris Self-Concept Scales 2) and disability type was examined by use of multi-level logistic regression. RESULTS: Seventeen percent (17.36%) of the sample was reported to have a diagnosis of one or more developmental disabilities. Those with a disability were more likely to live in poorer households, have poorer health status, to experience more episodes of bullying at school, and to have more negative views of school (p<0.05) than their typically-developing peers. Forty nine percent of children with developmental disabilities were not receiving support in school as reported by parents. Discrepancies in the nature of support received were identified across disability types. Adjusting for individual and school level factors, a disability diagnosis was associated with increased odds of low self-concept scores on three of five self-concept domains. Further associations were identified which differed across disability type. CONCLUSIONS: The findings show that 13 year olds with a disability in Ireland have complex social and educational needs. Findings also suggest significant levels of unmet educational need across this age group. Apparent inequities in access to support in school require further investigation. Reliable measures to provide robust prevalence figures about childhood disabilities in Ireland are needed.

Consequential differences in perspectives and practices concerning children with developmental language disorders: an integrative review.

BACKGROUND: Inter-professional collaboration (IPC) has been recommended for many years as a means by which the needs of children with developmental language disorders (DLD) can be met at school. However, effective IPC remains difficult to achieve and our knowledge of how to support it is limited. A shared understanding between those involved has been identified as critical to IPC. AIMS: To examine the literature, as one source of data, for evidence of a shared understanding between the fields of speech and language therapy (SLT) and education about children with DLD and how such needs can best be met at school. METHODS & PROCEDURES: An integrative review of the literature was undertaken. A systematic search of the published, peer-reviewed literature (between 2006 and 2016) was conducted for empirical and theoretical papers and a manual search was undertaken to obtain a representative sample of policy/professional guidelines. A total of 81 papers across SLT and education were included in the review. The papers were scrutinized using a qualitative content analysis. MAIN CONTRIBUTION: Although some commonality between perspectives in the literature was identified, differences between the fields dominated. These differences related to how DLD is conceptualized; how children's needs are assessed; which outcomes are prioritized and how best these outcomes can be achieved. We also found differences about what constitutes useful knowledge to guide practice. We suggest that the nature of the differences we identified in the literature may have negative implications for practitioners wishing to collaborate to meet the needs of children with DLD in school. The perspectives of practising SLTs and teachers need to be sought to determine whether the findings from the literature reflect dilemmas in practice. CONCLUSIONS: Effective IPC is essential to meet the needs of children with DLD in school; yet, it remains difficult to achieve. Our review of the literature across SLT and education indicates evidence of a lack of shared understanding about DLD. If these differences are also evident in practice, then a conceptual model to support IPC may be warranted.

Therapeutic exercises for affecting post-treatment swallowing in people treated for advanced-stage head and neck cancers.

BACKGROUND: Head and neck cancer treatment has developed over the last decade, with improved mortality and survival rates, but the treatments often result in dysphagia (a difficulty in swallowing) as a side effect. This may be acute, resolving after treatment, or remain as a long-term negative sequela of head and neck cancer (HNC) treatment. Interventions to counteract the problems associated with dysphagia include swallowing exercises or modification of diet (bolus texture, size), or both. OBJECTIVES: To determine the effects of therapeutic exercises, undertaken before, during and/or immediately after HNC treatment, on swallowing, aspiration and adverse events such as chest infections, aspiration pneumonia and profound weight loss, in people treated curatively for advanced-stage (stage III, stage IV) squamous cell carcinoma of the head and neck. SEARCH METHODS: The Cochrane ENT Information Specialist searched the ENT Trials Register; Cochrane Central Register of Controlled Trials (CENTRAL 2016, Issue 6); MEDLINE; PubMed; Embase; CINAHL; LILACS; KoreaMed; IndMed; PakMediNet; Web of Science; ClinicalTrials.gov; ICTRP; speechBITE; Google Scholar; Google and additional sources for published and unpublished trials. The date of the search was 1 July 2016. SELECTION CRITERIA: We selected randomised controlled trials (RCTs) of adults with head and neck cancer (stage III, stage IV) who underwent therapeutic exercises for swallowing before, during and/or immediately after HNC treatment to help produce safe and efficient swallowing. The main comparison was therapeutic exercises versus treatment as usual (TAU). Other possible comparison pairs included: therapeutic exercises versus sham exercises and therapeutic exercises plus TAU versus TAU. TAU consisted of reactive management of a patient's dysphagia, when this occurred. When severe, this included insertion of either a percutaneous endoscopic gastroscopy or nasogastric tube for non-oral feeding. DATA COLLECTION AND ANALYSIS: We used the standard methodological procedures expected by Cochrane. Our primary outcomes were: safety and efficiency of oral swallowing, as measured by reduced/no aspiration; oropharyngeal swallowing efficiency (OPSE) measures, taken from videofluoroscopy swallowing studies; and adverse events, such as chest infections, aspiration pneumonia and profound weight loss. Secondary outcomes were time to return to function (swallowing); self-reported changes to quality of life; changes to psychological well-being - depression, anxiety and stress; patient satisfaction with the intervention; patient compliance with the intervention; and cost-effectiveness of the intervention. MAIN RESULTS: We included six studies (reported as seven papers) involving 326 participants whose ages ranged from 39 to 83 years, with a gender bias towards men (73% to 95% across studies), reflecting the characteristics of patients with HNC. The risk of bias in the studies was generally high.We did not pool data from studies because of significant differences in the interventions and outcomes evaluated. We found a lack of standardisation and consistency in the outcomes measured and the endpoints at which they were evaluated.We found no evidence that therapeutic exercises were better than TAU, or any other treatment, in improving the safety and efficiency of oral swallowing (our primary outcome) or in improving any of the secondary outcomes.Using the GRADE system, we classified the overall quality of the evidence for each outcome as very low, due to the limited number of trials and their low quality. There were no adverse events reported that were directly attributable to the intervention (swallowing exercises). AUTHORS' CONCLUSIONS: We found no evidence that undertaking therapeutic exercises before, during and/or immediately after HNC treatment leads to improvement in oral swallowing. This absence of evidence may be due to the small participant numbers in trials, resulting in insufficient power to detect any difference. Data from the identified trials could not be combined due to differences in the choice of primary outcomes and in the measurement tools used to assess them, and the differing baseline and endpoints across studies.Designing and implementing studies with stronger methodological rigour is essential. There needs to be agreement about the key primary outcomes, the choice of validated assessment tools to measure them and the time points at which those measurements are made.

A Study of Healthy Adults' Oro-lingual Effort During Swallowing Using OroPress, A New Portable Wireless Measurement Tool.

OroPress is a new, low profile, portable, wireless tool that enables stable measurement of tongue pressure during isometric ('pushing') tasks and, more importantly, during swallowing. Using this tool, a pressure-time product, the OroPress Absolute (OPA) parameter, has been developed as a representative measure of lingual effort during swallowing. In a sample of 57 adults aged 20-80+ years, of both sexes and without dysphagia, tongue-palate contact pressures generated while swallowing 5 ml, 10 ml of water and 5 ml custard, were recorded using OroPress. Data were examined for effects of gender, age and bolus condition (consistency, volume). OPA was tested for stability of measure and then correlated with the criterion standard, peak pressure recorded when swallowing (PMax(SW)). Swallowing pressures (PMax(SW), OPA) were positively correlated with bolus viscosity. No significant age and gender differences were found. Excellent stability of measure (test, re-test reliability) was demonstrated and OPA was positively correlated with PMax(SW). OroPress produces valid, reliable and reproducible measurements and improved accuracy of oro-lingual pressure measurement during swallowing. With such a tool, interventions/therapy can be proactive and principled as outcomes are better validated. To enhance specificity of intervention, measurement parameters need to reflect the pressure and temporal qualities of swallow function. OPA has the potential to describe differences in effort made, and ability to sustain pressures, in adults without dysphagia. The results of these studies will enable more accurate examination of the oral phase of swallowing as we establish this highly accurate sensor as a criterion standard for oro-lingual pressure measurement in clinical populations.

Adverse pregnancy outcomes following syphilis treatment in pregnancy in the UK.

Syphilis infection in pregnancy is known to cause a number of severe adverse pregnancy outcomes, including second-trimester miscarriage, stillbirth, very pre-term delivery and neonatal death, in addition to congenital syphilis. A retrospective review of women with positive syphilis serology and a pregnancy outcome between 2005 and 2012 in Leeds, UK, was performed. In all, 57 cases of positive syphilis serology in pregnancy were identified: 24 with untreated syphilis treated in the current pregnancy (Group 1); seven with reported but unconfirmed prior treatment who were retreated (Group 2); and 26 adequately treated prior to pregnancy (Group 3). The rate of severe adverse pregnancy outcomes in Group 1 at 21% was significantly higher than the 0% outcome of Group 3 (p = 0.02). The severe adverse pregnancy outcomes were two second-trimester miscarriages, two pre-term births at 25 and 28 weeks and one stillbirth at 32 weeks. There were no cases of term congenital syphilis or term neonatal death, but we observed high rates of other adverse pregnancy outcomes despite treatment during pregnancy. Rapid referral for treatment is needed before 18 weeks in order to minimise adverse pregnancy outcomes.

Long-term swallowing after chemoradiotherapy: Prospective study of functional and patient-reported changes over time.

BACKGROUND: This prospective study evaluated long-term swallowing outcomes and associated risk factors 5 years postchemoradiotherapy for head and neck cancer. METHODS: Following an earlier study of 69 patients, 39 patients had patient-reported activity and quality of life (QOL) data collected. Twenty-one patients also underwent a videofluoroscopy swallowing study (VFSS). RESULTS: Between 6 months and 5 years posttreatment, patient-reported activity for solid foods significantly improved (p < .001), returning to pretreatment levels for 74% of patients. On VFSS, swallowing function for semisolids declined, with 5 patients demonstrating a clinically significant deterioration. Factors that predicted poorer long-term swallowing were the same as at 6 months, with the addition of older age and disease stage. CONCLUSION: Although long-term patient-reported activity improves and swallowing-related QOL is high, up to 24% of patients may demonstrate a clinically significant deterioration in swallowing function at 5 years posttreatment. This divergence suggests a degree of adaptation that patients develop, which warrants further investigation. © 2015 Wiley Periodicals, Inc. Head Neck 38: E307-E315, 2016.

OroPress a new wireless tool for measuring oro-lingual pressures: a pilot study in healthy adults.

BACKGROUND: Commercially available tools for measuring oro-lingual pressures during swallowing or isometric (tongue 'pushing') tasks have either poor, or unknown, psychometric properties (stability, reliability) which means their validity in a clinical setting is unknown. A new wireless tool, OroPress, has been designed to address the shortcomings of existing devices. In this pilot cohort study of normal adults (i.e., people without dysphagia), the face validity of OroPress was examined when it was used to measure oro-lingual pressures during (i) isometric tongue strength (ITS) tasks and (ii) isometric tongue endurance (ITE) tasks. The effects of gender on isometric oro-lingual data, captured using OroPress, were compared to published oro-lingual pressure data recorded using either the Kay Swallowing Workstation or the Iowa Oral Performance Instrument (aka commercial tools). METHODS: Thirty five adults (17 males, 18 females), were purposefully recruited at the University of Limerick (UL), Ireland. They attended one session at the university-based clinic where their oro-lingual pressures were recorded while undertaking two isometric tasks by speech and language therapy student clinicians. OroPress was used to capture tongue strength and tongue endurance pressures during two trials of each condition and data were downloaded and analysed post-hoc. An independent-samples t-test and an ANOVA were used to examine the effect of gender on ITS pressures (as data were normally distributed) and an independent-samples t-test was used for the effect of gender on ITE pressures (where data were not normally distributed). RESULTS: OroPress is a portable tool that was reported as being 'easy to use' by student SLT clinicians. The intra-oral sensor was reportedly comfortable and 'felt non-invasive' for participants. Data from 34 participants (16 males, 18 females) are reported. Males did not demonstrate significantly higher mean ITS pressures than females (P = 0.057), although this approached significance, and there was no gender effect for ITE oro-lingual pressure. These results were consistent with published data from studies where other tools have been used to measure ITS pressures. CONCLUSIONS: Preliminary face validity of OroPress as a tool for recording isometric oro-lingual pressures was supported. This new wireless tool shows promise for being a criterion standard for recording oro-lingual pressures during isometric tasks.

Quality of life after total laryngectomy: functioning, psychological well-being and self-efficacy.

BACKGROUND: Quality of life (QoL) is an important construct when assessing treatment outcomes. AIMS: To examine the relative contributions of functioning, psychological well-being and self-efficacy on self-perceived QoL with a sample of total laryngectomy patients in Australia who had surgery for advanced laryngeal cancer. METHODS & PROCEDURES: In a cross-sectional study, 113 members of the Laryngectomy Associations of New South Wales and of Victoria, Australia, were recruited, and each was sent a series of questionnaires for postal return. Four psychometrically validated measures were used for participants to document their QoL, functioning (speech, swallowing), psychological well-being and general self-efficacy. OUTCOMES & RESULTS: Eighty-six (77%) questionnaires were returned and 83 were analysed. The cohort consists of 70 men and 13 women aged between 46 and 88 years. Overall, this sample of total laryngectomy survivors demonstrated significantly reduced physical health QoL (p < 0.001) and social relationship QoL (p = 0.011) and higher levels of depression (p = 0.008) and anxiety (p = 0.001) when compared with normative samples. This was in the context of them having higher than normal self-efficacy scores and, at worst, mild (self-rated) impairment of speech and of swallowing. Psychological well-being (sr(2) = 0.43, p < 0.001) had a stronger association than functioning (speech, swallowing, sr(2) = 0.08, p < 0.05) for their psychological QoL. Psychological well-being (sr(2) = 0.17, p < 0.001) and not functioning (sr(2) = 0.05, p > 0.05) were significantly associated with social relationship QoL. Self-efficacy scores were significantly higher than norms in this cohort, but were not associated with either their psychological QoL or social relationship QoL, after controlling for psychological well-being and functioning. CONCLUSIONS & IMPLICATIONS: For survivors of laryngeal cancer treated by total laryngectomy, it is important to be aware of the impact of psychological well-being (depression, anxiety, stress) on self-perceived QoL. In addition to rehabilitating function (speech, swallowing), specific interventions to assist these individuals better manage their psychological well-being will likely improve their perceived life satisfaction/QoL.

Alternating and sequential motion rates in older adults.

BACKGROUND: Alternating motion rate (AMR) and sequential motion rate (SMR) are tests of articulatory diadochokinesis that are widely used in the evaluation of motor speech. However, there are no quality normative data available for adults aged 65 years and older. AIMS: There were two aims: (1) to obtain a representative, normative dataset of diadochokinetic rates from adults aged 65 years and older; and (2) to examine the effects of age and gender on those rates. METHODS & PROCEDURES: Seventy-six healthy adults (65-86 years) were recruited; 45 females and 31 males. Participants were divided across two age groups (65-74 and 75-86 years) and audio-recorded while undertaking AMR (/pa/, /ta/ and /ka/) and SMR (/pataka/). The rate of the first nine syllables for each task was measured using acoustic analysis software, and age and gender effects were examined using a series of generalized linear models. The effect of age on rate variability between groups was also assessed. OUTCOMES & RESULTS: Normative data were obtained for both age groups and across gender. Age was not a significant factor for any task. Males had significantly higher AMR than females (/pa/ p = 0.001, /ta/ p = 0.001, /ka/ p = 0.010). No such gender difference was found for SMR. There was no significant difference in rate variability between the age groups. CONCLUSIONS & IMPLICATIONS: Normative values for AMR and SMR in both genders and across two older age groups were acquired. Diadochokinetic rates outside such values cannot be attributed to normal ageing, so will merit further clinical investigation.

Impact of a laryngectomy and surgical closure technique on swallow biomechanics and dysphagia severity.

OBJECTIVE: The incidence of self-reported dysphagia following a laryngectomy is high (72%). The impact, if any, of a surgical closure technique on swallowing biomechanics and dysphagia severity is not known. To date, there is no recommended standard procedure for pharyngeal reconstruction during laryngectomy surgery. The aim of this study was to determine how laryngectomy surgery alters swallowing biomechanics, pharyngeal peak deglutitive pressure, and hypopharyngeal intrabolus pressures and whether these changes in pressure correlate with specific surgical closure after total laryngectomy or with dysphagia severity. STUDY DESIGN: Combined videoradiography and manometry was used to measure peak mid-pharyngeal, tongue, and intrabolus pressures; anatomical derangements; postswallow residue; and pharyngeal dimensions. SETTING: Radiology Department, St George Hospital, Sydney, Australia. SUBJECTS: Twenty-four patients following total laryngectomy surgery and age-matched control data. RESULTS: When compared to controls, peak mid-pharyngeal pressures were significantly reduced in laryngectomy patients (P < .001). Hypopharyngeal intrabolus pressures were significantly higher in patients when compared to controls (P < .001). Patients who had undergone mucosa-and-muscle pharyngeal reconstruction had higher peak mid-pharyngeal pressures compared to those who had mucosa-alone closure (P ≤ .04). Combined mucosa-and-muscle closure was also associated with reduced postswallow residue, indicative of a more efficient swallow. CONCLUSION: Following laryngectomy surgery, pharyngeal pro-pulsive contractile forces are impaired, and there is increased resistance to bolus flow across the pharyngoesophageal segment. These adverse biomechanical effects can be influenced by surgical techniques, providing surgeons with evidence for optimum pharyngeal closure following a laryngectomy to improve swallowing outcomes.

Impact of demographics, tumor characteristics, and treatment factors on swallowing after (chemo)radiotherapy for head and neck cancer.

BACKGROUND: This prospective study evaluated the impact of patient demographics, tumor characteristics, and radiotherapy treatment on swallowing before and after radiotherapy or chemoradiotherapy. METHODS: Eighty-one patients with head and neck cancer were examined using videofluoroscopy swallowing studies (VFSS) before treatment and again at 3 and 6 months after treatment. RESULTS: Swallowing was best at baseline, significantly worse 3 months posttreatment, and improved by 6 months posttreatment. Worse swallowing was associated with: living in rural areas; ex-heavy alcohol consumption; hypopharyngeal tumor site; large (particularly T4) tumors; nonconformal radiotherapy; bilateral radiation to the pharynx; and longer radiotherapy fields. Through the use of multiple regression analysis, previous swallowing was determined to be the most common predictor of swallowing outcomes, followed by T classification, alcohol history, and radiotherapy technique. CONCLUSIONS: The pretreatment and treatment factors that influenced swallowing in this cohort should be considered when planning treatment, in discussing potential side effects with patients, and when developing and testing future treatment techniques.

Dysphagia following a total laryngectomy: the effect on quality of life, functioning, and psychological well-being.

The aim of this study was to investigate the effect that dysphagia has on quality of life (QoL), functioning, and psychological well-being of people who have undergone a total laryngectomy. A questionnaire battery was sent to all members (N = 197) of the Laryngectomee Association of NSW, Australia. QoL and functioning were assessed using the World Health Organisation Quality of Life-Bref (WHOQoL-Bref) and the University of Washington QoL (UW-QoL) measures. Psychological well-being was measured using the Depression Anxiety and Stress Scale (DASS). One hundred ten questionnaires (56%) were completed and returned. There were no significant differences in QoL, as measured by the WHOQoL-Bref, between those laryngectomees with and without dysphagia. Laryngectomees with dysphagia, however, had significantly impaired functioning and markedly reduced social participation as measured by the UW-QoL. Significantly higher levels of depression and anxiety were also documented in those laryngectomees who had dysphagia. Dysphagia may not necessarily determine QoL following a total laryngectomy. However, it may have a negative impact on functioning and on psychological well-being.

A comparison of the reliability and stability of oro-lingual swallowing pressures in patients with head and neck cancer and healthy adults.

The ability to measure normality and abnormality and to accurately assess true changes in swallowing function over time, is important for the management of dysphagia. Despite this, there is a paucity of information regarding the stability and reliability of measurements tools used for dysphagia research. As both head and neck (H&N) cancer and its treatment(s) have been shown to significantly affect deglutitive tongue function, it is important that we have a reliable method to measure swallowing tongue function in this population. In this study we evaluate the reliability and stability of oro-lingual swallowing pressures captured from H&N cancer patients and from healthy, age- and gender-matched controls using the Kay Swallowing Workstation (KSW) fixed, three-transducer tongue pressure array. Significant differences between the two samples (H&N cancer and controls), with respect to mean peak oro-lingual pressures were recorded during swallowing. Furthermore, reliability of these measures was lower in H&N cancer patients. These differences highlight the importance of obtaining information about the reliability of dysphagia assessment tools with the specific population with whom they will be used.

Post-laryngectomy: it's hard to swallow: an Australian study of prevalence and self-reports of swallowing function after a total laryngectomy.

The prevalence of swallowing disorders (dysphagia) following a total laryngectomy remains unknown, with estimates varying from 17 to 70%. The primary aim of this study was to investigate the prevalence and nature of self-reported dysphagia following a total laryngectomy across New South Wales (NSW), Australia. A secondary aim was to document the effect of dysphagia on the respondents' social activities and participation. A questionnaire battery, with a prepaid envelope for return, was sent to all laryngectomy members (n = 197) of the Laryngectomy Association of NSW. One hundred twenty questionnaires (61%) were completed and returned. Dysphagia was self-reported by 71.8% of the cohort. In this cohort with dysphagia, the most commonly reported features included an increased time required to swallow, a need for fluids to wash down a bolus, and avoidance of certain food consistencies. Severe distress was reportedly associated with dysphagia for 39.7% of these respondents and prevented 57% of them from participating in social activities, such as eating at friends' houses and/or at restaurants. The prevalence of self-reported dysphagia following total laryngectomy in this Australian study was 72%. Dysphagia can result in laryngectomies making significant changes to their diets and it has a marked impact on their activities and social participation.

The stability, reliability, and validity of videofluoroscopy measures for patients with head and neck cancer.

The purpose of this study was to contrast the psychometric properties (stability, test-retest reliability, construct, and concurrent validity) of three different tools used for evaluating videofluoroscopy swallowing studies (VFSS): (1) rating the presence or absence of a swallowing disorder, (2) the Bethlehem Assessment Scale (BAS), and (3) biomechanical measures. These three tools were applied to the same three examinations of two different consistencies (liquid and semisolid), taken from 40 VFSSs of patients with head and neck (H&N) cancer. Stability of swallowing across three swallows was a concern for three measures with the liquid consistency and nine measures with the semisolid consistency. Test-retest reliability was found to vary considerably for the two consistencies (liquids, 0.53-1.00; semisolids, 0.45-1.00). Examination of construct validity of the BAS and biomechanical measures indicated that six factors represented swallowing function, but different factors represented swallowing under liquid and semisolid conditions. Concurrent validity of the presence/absence of disorder variables was less than adequate. These results are discussed in the following contexts: (1) psychometric properties of VFSS may not be adequate for clinical and research environments and (2) psychometric properties of VFSS measures appear to vary as a function of bolus consistency.

Voice outcomes after radiotherapy treatment for early glottic cancer: assessment using multidimensional tools.

BACKGROUND: This is the first prospective study to use instrumental and both clinician- and client-rated auditory-perceptual measures to examine voice and voice-related quality of life changes in patients after curative radiotherapy for early glottic cancer. METHOD: Thirty patients undergoing curative radiotherapy treatment for early glottic cancer completed the following: 3 voice tasks for acoustic, aerodynamic, and auditory-perceptual voice measures (therapist-rated); a patient self-report rating of voice quality; and a voice-related quality of life assessment before and 12 months after radiotherapy. RESULTS: Patients' perceptions of their voice quality and their voice-related quality of life significantly improved posttreatment, as did acoustic, aerodynamic, and auditory-perceptual voice measures. Mean speaking fundamental frequency did not change significantly, although breathiness and strain in the voice recordings were demonstrably reduced. CONCLUSION: In describing postradiotherapy voices in this study, pertinent measures of voice outcomes have been established, setting the benchmark for comparison in future cohort studies.