The health care experiences of people with head and neck cancer: A scoping review.

BACKGROUND: Understanding health care experience in head and neck cancer (HNC) is becoming increasingly important due to changes in the disease profile, survivorship, and a greater appreciation of patient health care experience as an important outcome measure. People with HNC encounter many different types of health care professionals and health care touchpoints. METHOD: Through systematic database searching, this scoping review of qualitative English-language studies describes the self-reported care experiences of those with HNC across the health care continuum, and describes the current state of the literature. RESULTS: Overall, the 95 studies identified were heterogeneous and investigated a broad range of topics. Trends across studies showed research centered on hospital-based care, conducted in developed countries, with more studies on feeding than other aspects of care. Generic qualitative research frameworks, with individual interviews, were the preferred method of data collection. CONCLUSION: Despite identifying many studies, there are significant gaps in our understanding of the HNC patient experience.

Feasibility and Safety of Fiberoptic Endoscopic Evaluation of Swallowing in People with Disorder of Consciousness: A Systematic Review.

People with disorders of consciousness (DoC) often receive nutrition via a feeding tube and the swallowing ability in this population is not fully understood. In particular, fiberoptic endoscopic evaluation of swallowing (FEES) with people with DoC requires further investigation. The aim of this systematic review is to collate, assess and summarise the current evidence of whether FEES is feasible and safe with people with DoC. Multiple health databases were searched in November 2019 to identify studies which used FEES with people with DoC. Data extraction included demographic information, adverse events reported and outcomes related to oral feeding. The Diagnostic Accuracy Quality Scale (DAQS) was used to assess the quality of the studies. In total only four studies were found, all of which had a high risk of bias. Many participants went from nil by mouth to some degree of oral diet sometime after the FEES was completed with low reporting of adverse events associated with FEES. This suggests a potential for the use of FEES in people with DoC. However, the evidence is low and further studies are recommended to improve understanding of FEES with people with DoC. Recommendations for clinical practice and areas for future research are outlined.

A systematic review of interventions for adults with social communication impairments due to an acquired brain injury: Significant other reports.

Purpose: To determine the most effective intervention for adults with social communication impairments due to an Acquired Brain Injury (ABI), using standardised outcome measures completed by significant others.Method: A systematic literature review was conducted. Four electronic databases relevant to the field of speech-language pathology or brain injury were searched: Medline, CINAHL, AMED and Embase. Grey literature, reference lists and citation indexes were also hand searched for additional research. Studies that met the broad inclusion and exclusion criteria were initially screened to determine articles for full text reviews by two independent reviewers. Reviewers independently extracted data from full-text reviews using a data extraction form and performed bias analysis using the Downs and Black quality checklist (Downs, S.H., & Black, N. (1998). The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. Journal of Epidemiology & Community Health, 52, 377-384.). Studies were categorised using a five-phase model of evidence (Robey, R.R., & Schultz, M.C. (1998). A model for conducting clinical-outcome research: An adaptation of the standard protocol for use in aphasiology. Aphasiology, 12, 787-810.).Result: 681 articles were identified after duplicates were removed. 15 articles were reviewed for full-text analysis. Six studies were ultimately included in the review. Of these, three were randomised controlled trials and three others were not. Four studies delivered intervention solely to the individual with an ABI, one to the communication partner only, and one delivered intervention both to the individual and their communication partner. Intervention programmes ranged from four to 12 weeks and from 12 to 48 hours total contact time. The reviews studies were heterogeneous, which made comparisons difficult. Risk of bias was also present to varying degrees in all studies. The current level of evidence has focussed on efficacy of treatments and effectiveness of treatment is not yet established.Conclusion: The current level of evidence is not yet established to make clear clinical guidelines on which interventions are most effective, based on significant others' reports. Further research is required, incorporating more rigorous study designs and larger sample sizes to enable accurate conclusions to be drawn.

What is it like to have your loved one with a severe brain injury come to rehabilitation? The experiences of significant others.

Purpose: To investigate the experiences of significant others when their loved one with a severe brain injury is admitted to acquired brain injury (ABI) rehabilitation.Main measures: A qualitative approach was undertaken; using in-depth interviews and the drawing method to elicit information on the experiences of significant others who had loved ones enter an ABI unit, early in the sub-acute rehabilitation admission.Results: Nine significant others participated in interviews and completed drawings. Seven themes were identified from the two sources of data. Themes included: Trauma; Relief; Interactions; Change; Grief and loss; Journey, and Uncertainty.Conclusions: The whole experience for the significant other is traumatic as they try to understand changes to both their loved ones and their own roles. Healthcare providers have a key role in supporting significant others as their loved ones enter rehabilitation. The role of the drawing method appears to supplement and extend data received from interviews, shedding additional light into the lived experiences of significant others of those with an acquired brain injury.Implications for rehabilitationEarly in the rehabilitation process, significant others experience emotional trauma resulting from their experience of their loved one's trauma.It is important that health professionals interactions with significant others are respectful and kind, and that interactions around processes and communication are clear.Expertise and a tailored environment reduce stress and increase feelings of confidence in significant others.Significant others may need time to talk about their experiences with health professional staff, to support them to adjust to this major life change.

Patients' Perspectives on What Makes a Better Care Experience While Undergoing Treatment for Oropharyngeal Dysphagia Secondary to Head and Neck Cancer.

Patients' perceptions on what makes a better care experience for head and neck cancer (HNca) have not been widely sought. Patients' perceptions can play a crucial role in shaping quality care and client involvement. To investigate patients' perspectives on what makes a better care experience while undergoing rehabilitation for oropharyngeal dysphagia secondary to HNca. Qualitative data were collected in the form of semi-structured interviews from eight patients after they had undergone rehabilitation for HNca. The data were thematically analysed by two researchers independently. Six themes, plus subthemes, were identified. These themes were Supportive network is essential; Reassurance from staff professionalism; Access to service; Using own motivation and resilience; Receiving the right information and Ongoing shock and adjustment. Results are discussed in context of the literature and clinical implications and future research are recommended. Collation of patients' perspectives is valuable to increase insight into what makes a better rehabilitative journey for patients with HNca. Rehabilitation that is holistic, specialised and patient-specific is highly valued by patients with HNca.

Impaired Tongue Function as an Indicator of Laryngeal Aspiration in Adults with Acquired Oropharyngeal Dysphagia: A Systematic Review.

Tongue function assessment typically forms part of a clinical bedside swallowing evaluation (CBSE). The predictive value of lingual function for calculating aspiration risk in isolation is not known. The aim of this systematic review was to collate current evidence on the utility of assessing lingual deficits for predicting aspiration. Health databases Medline, CINAHL, Cochrane Library, SpeechBITE, AMED and Embase were searched from inception to November 2016. Studies were included if there was a comparison between a clinical lingual assessment (index test) and aspiration on instrumental assessments (reference test) in adults who had been diagnosed with oropharyngeal dysphagia. The Quality Assessment of Diagnostic Accuracy Studies (QUADAS-2) tool was used to assess the quality of the studies. Sensitivity, specificity, predictive values, likelihood ratios and odds ratios were extracted or calculated where possible. A best evidence synthesis and receiver operator curve (ROC) analysis for sensitivity and specificity were conducted. Twelve studies were included, of which only one had a low risk of bias. The ROC curve, predictive values and likelihood ratios did not show a relationship between lingual function and aspiration. Best evidence synthesis showed moderate evidence that when motility and strength are jointly assessed, they are not associated with aspiration. Other lingual assessment variables indicated either limited or conflicting evidence of an association. There is currently no evidence to indicate that there is a predictive relationship between lingual deficits as part of a CBSE and aspiration in adults with acquired oropharyngeal dysphagia. Recommendations for clinical practice and future research are made.

Saliva management options for difficult-to-wean people with tracheostomy following severe acquired brain injury (ABI): A review of the literature.

PRIMARY OBJECTIVE: To evaluate the evidence on saliva management options in those people who have a tracheostomy in situ following an acquired brain injury and to ascertain whether any of these treatments may facilitate tracheostomy decannulation. METHODS: The search was conducted on Medline, Embase, Cinahl and Central databases since 1990 and the evidence has been critiqued and summarized. Saliva management options were identified and analysed to see whether they had evidence or clinical support for the population. MAIN OUTCOMES AND RESULTS: There is a paucity of evidence in this area and clinical decision-making requires evidence from other populations. Saliva management issues in this population are most likely to be related to dysphagia. Treatment options include behavioural/compensatory therapies which should be tried in all cases, with adjunct pharmaceutical therapies or surgical options to reduce saliva volume as clinically appropriate. CONCLUSION AND FUTURE DIRECTIONS: This group of people is complex and requires a multi-disciplinary team to guide decision-making. High quality control studies looking at the effectiveness of dysphagia therapy and guidelines regarding botulinum toxin injections are recommended.