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Background Trainees in Otolaryngology–Head and Neck Surgery must gain proficiency in a variety of challenging temporal bone surgical techniques. Traditional teaching has relied on the use of cadavers; however, this method is resource-intensive and does not allow for repeated practice. Virtual reality surgical training is a growing field that is increasingly being adopted in Otolaryngology. CardinalSim is a virtual reality temporal bone surgical simulator that offers a high-quality, inexpensive adjunct to traditional teaching methods. The objective of this study was to establish the face and content validity of CardinalSim through a national study. Methods Otolaryngologists and resident trainees from across Canada were recruited to evaluate CardinalSim. Ethics approval and informed consent was obtained. A face and content validity questionnaire with questions categorized into 13 domains was distributed to participants following simulator use. Descriptive statistics were used to describe questionnaire results, and either Chi-square or Fishers exact tests were used to compare responses between junior residents, senior residents, and practising surgeons. Results Sixty-two participants from thirteen different Otolaryngology–Head and Neck Surgery programs were included in the study (32 practicing surgeons; 30 resident trainees). Face validity was achieved for 5 out of 7 domains, while content validity was achieved for 5 out of 6 domains. Significant differences between groups (p-value of

Purpose The purpose of this study was to obtain a self-reported account of the experience of living with oromandibular dystonia (OMD) to gain a better understanding of both the daily facilitators and barriers to communicative participation and the strategies used for adapting to life with OMD. Method Eight individuals with OMD and dysarthria participated in 1 face-to-face, semistructured interview. Interviews were audio-recorded and transcribed verbatim. Qualitative, phenomenological methods of coding, immersion, and emergence were used in the analysis of interview data. Results Three major themes and 7 subthemes emerged from the analysis of interview data. First, “speaking is different now” provided examples of how speech changes are manifested in various life situations. Second, “my roles have changed” addressed how OMD has impacted work, home, and social roles. Third, “I accept it and move on” involved finding strategies that help and adopting a different perspective. Conclusion We suggest that the management of OMD must take a more holistic approach by addressing consequences beyond the physical symptoms and be tailored to each individual based on his or her personal concerns and goals.

Deep brain stimulation (DBS) is a common tool for the treatment of movement disorders in adults; however, it remains an emerging treatment modality in children with a growing number of indications, including epilepsy and dystonia. The Child & Youth CompreHensIve Longitudinal Database of DBS (CHILD-DBS) study aims to prospectively collect relevant data on quality of life (QoL), safety, efficacy, and long-term neurodevelopmental outcomes following DBS in children. Data are collected and managed using the Research Electronic Data Capture (REDCap). This database aims to collect multicentre comprehensive and longitudinal clinical, QoL, imaging and electrophysiologic data for children under the age of 19 undergoing DBS. Both general and indication-specific measures are collected at baseline and at four time points postoperatively: 6 months, 1 year, 2 years, and 3 years. The database encompasses QoL metrics for children, including the PedsQL (Pediatric Quality of Life Inventory, generic), QOLCE (Quality of Life in Childhood Epilepsy Questionnaire, parent-rated), CHU 9D (Child Health Utility 9D), and KIDSCREEN. Caregiver clinical and QoL metrics, including QIDS (Quick Inventory of Depressive Symptomatology), GAD-7 (Generalized Anxiety Disorder 7-item scale), and CarerQoL-7D (The Care-related Quality of Life Instrument), are similarly prospectively collected. Healthcare resource utilization is also assessed before and after DBS. Lastly, stimulation parameters and radiographic and electrophysiologic data are collected within the database. The development of the current prospective paediatric DBS database with carefully selected physical and psychosocial outcomes and assessments will complement existing efforts to enhance and facilitate multisite collaboration to further understand the role of DBS in childhood.

Background On February 6th, 2015, the Supreme Court of Canada ruled that competent adults suffering intolerably from a grievous and irremediable medical condition have the right to the assistance of a physician in ending their own lives, an act known as physician-assisted death, and later defined as medical assistance in dying, allowing for provision by a physician or a nurse practitioner. As of June 6th, 2016, this is no longer illegal across Canada. There is strong support amongst the general population for physician-assisted death, however there is no recent data on the attitudes of terminally ill patients. Our main objective was to gain information on terminally ill patients’ general and personal attitudes toward physician-assisted death. Methods This is an exploratory pilot study. We surveyed three groups of patients with life-limiting diagnoses: one with new referrals to palliative care; one with no palliative care involvement; and one with prior and ongoing management by a palliative care team. Respondents were surveyed twice, approximately two weeks apart, and rated their general attitudes toward physician-assisted death and the hypothetical consideration of physician-assisted death for oneself on a five-point Likert scale at baseline and follow-up. Respondents with new referrals to palliative care were surveyed before and after palliative care consultation. This study was approved by The Western University Health Sciences Research Ethics Board and Lawson Health Research Institute. Results We surveyed 102 participants, 70 of whom completed both surveys (31% dropout rate). Participants in all groups predominantly responded between somewhat agree (4 on a 5-point Likert scale) and strongly agree (5 on the Likert scale) when asked about their general attitude toward physician-assisted death. Patients with prior palliative care involvement reported the highest average ratings of hypothetical consideration of physician-assisted death for oneself on a 5-point Likert scale (3.4 at baseline; 3.9 at follow-up), followed by patients with a new palliative consultation (3.2 at baseline; 3.3 at follow-up), and patients with no palliative involvement (2.6 at baseline; 2.9 at follow-up). Conclusions Given the preliminary results of this pilot study, we can conclude that terminally ill patients generally agree that physician-assisted death should be available to patients with life-limiting illnesses. Furthermore, descriptive data show a trend for higher hypothetical consideration of physician-assisted death in those patients with prior and ongoing palliative care involvement than patients without palliative involvement. Responses in all groups remained fairly consistent over the two-week period. Electronic supplementary material The online version of this article (10.1186/s12904-018-0304-6) contains supplementary material, which is available to authorized users.

Purpose In this preliminary study, we examined self-rated communication-related quality of life (CR-QoL) of 10 control participants and 10 individuals with oromandibular dystonia (OMD) and dysarthria receiving therapeutic botulinum toxin (BoNT-A) injections. Method Participants with OMD and associated dysarthria self-rated CR-QoL pre- and post- BoNT-A injection using the American Speech-Language-Hearing Association's Quality of Communication Life Scale (ASHA QCL; Paul et al., 2004). Control participants self-rated CR-QoL during a single experimental visit. Results Significant differences were found between control participants and participants with OMD on ratings of CR-QoL across all 5 domains and subdomains of the ASHA QCL. No significant differences in CR-QoL were found over the course of the BoNT-A treatment cycle. Conclusions CR-QoL was rated lower by participants with OMD as compared with control participants across all ASHA QCL domains/subdomains with “socialization/activities” and “confidence/self-concept” having the largest effect sizes. No differences in CR-QoL were found over the course of the treatment cycle. We advocate for outcome measures that include patient report. The use of patient-reported outcome measures in conjunction with objective or impairment-based outcome measures can help inform meaningful clinical indicators of treatment success. This study adds novel information that may aid our understanding of the experience of living with OMD in this underserviced clinical population.

Oromandibular dystonia (OMD) is a rare disorder of movement characterized by tonic muscle contractions that can result in involuntary, repetitive, and patterned muscle contractions of the lingual musculature, labial musculature, and/or muscles of mastication. As a result, dysarthria can be present that can lead to reduced speech intelligibility and have an adverse impact on psychosocial functioning. In this article, we will describe the clinical and speech characteristics of OMD and the various methods of treatment. Then we will introduce and describe patient-reported outcome measures that assess two aspects of psychosocial functioning: communicative participation and quality of life. We will describe the current state of knowledge as it relates to communicative participation and quality of life in this clinical population, and, finally, we will advocate that speech-language pathologists have a unique role in the care of individuals with OMD through the inclusion of patient-reported outcome measures to provide a comprehensive and holistic management plan.

Background Bone conduction implants can be used in the treatment of conductive or mixed hearing loss. The BONEBRIDGE bone conduction implant (BB-BCI) is an active, transcutaneous device. BB-BCI implantation can be performed through either the transmastoid or retrosigmoid approach with their respective limitations. Here, we present a third, novel approach for BB-BCI implantation. Objective Describe the detailed surgical technique of BB-BCI implantation through a middle fossa approach with self-drilling screws and present preliminary audiometric outcome data following this approach. Methods A single institution, retrospective chart review was completed for patients implanted with the BB-BCI via the middle fossa approach. Preoperative planning and modelling were performed using 3D Slicer. Audiological testing was performed pre- and post-operatively following standard audiometric techniques. Results Forty patients underwent BB-BCI implantation using the middle fossa approach. Modelling techniques allowed for implantation through the use of external landmarks, obviating the need for intraoperative image guidance. The surgical technique was refined over time through experience and adaptation. Mean follow-up was 29 months (range 3–71 months) with no surgical complications, favourable cosmesis, and expected audiometric outcomes. An average functional gain of 39.6 dB (± 14.7 SD) was found. Conclusion The middle fossa technique with self-drilling screws is a safe and effective option for BONEBRIDGE implantation. As a reference for other groups considering this approach, an annotated video has been included as a supplement to the study. Electronic supplementary material The online version of this article (10.1186/s40463-019-0354-7) contains supplementary material, which is available to authorized users.

Selective dorsal rhizotomy (SDR) is a surgical treatment for spasticity, primarily in cerebral palsy (CP). There is a growing trend for patients to seek medical information from their peers on social media platforms. This study qualitatively and quantitatively assessed the use of social media as an information-sharing and support-seeking tool by patients and caregivers. A search was performed on Facebook, Twitter, and YouTube. Public information was quantitatively assessed by category, users, year of creation, and country of origin. Representative samples of comments and posts were then qualitatively assessed by thematic analysis. One hundred eighty-five Facebook groups and pages, 97 YouTube videos, and 14 Twitter accounts were identified, based in 13 countries. SDR and CP groups had a mean membership of 3063 and 2339, respectively; SDR and CP pages had a mean number of “likes” of 1650 and 10,711, respectively. Total YouTube video views were 593,135 (mean 6115). Total Twitter followers were 62,609 (mean 2160). Qualitative analysis identified seven categories of comments: emotional support and forming connections (22.34%), sharing information and advice (15.96%), appreciation and successes (31.91%), challenges and difficulties (8.51%), advertising/offering services (4.79%), inequities and access (4.79%), and social media as a second opinion (11.7%). This study outlines the use of social media platforms in the distribution of information regarding SDR. We highlight the importance placed by patients and caregivers on the advice of their peers. The current report should inform healthcare providers’ interactions with patients with respect to information seeking and provision of support.