Patient-reported outcome measures more than fifteen years after treatment of sagittal or metopic craniosynostosis: a prospective cohort study.

PURPOSE: To evaluate the long-term anthropometric measurements, cosmetic satisfaction, and other patient-reported outcome measures (PROMs) of patients who underwent surgical treatment or observation only of sagittal or metopic single-suture craniosynostosis (SSC). METHODS: A prospective study was designed for all patients diagnosed with non-syndromic sagittal and metopic craniosynostosis at the British Columbia Children's Hospital, Vancouver, Canada, in the period July 1986 to July 2006. After a minimum of 15 years post-diagnosis, all eligible patients were invited to fill out the Craniofacial Surgery Outcomes Questionnaire (CSO-Q) and to attend a scheduled follow-up appointment for the collection of anthropometric measurements. A descriptive analysis of the cosmetic results was performed. Statistical analyses compared the differences in anthropometric measurements between treated and non-treated patients. RESULTS: Of the 253 eligible patients, 52 participants were willing to share patient data for use in the study. Of those 52 former patients, 36 (69.2%) filled out and returned the CSO-Q and 23 (44.2%) attended the follow-up appointment. The mean follow-up period between surgical treatment and the CSO-Q was 20.2 ± 2.5 years and between surgical treatment and the follow-up appointment was 20.9 ± 2.7 years. In patients with sagittal SSC, the mean cephalic index (CI) was significantly larger in treated than in non-treated patients (74.6 versus 69.1, p = 0.04), while the mean pupillary distance and forehead to back index were significantly smaller (pupillary distance 6.0 cm versus 6.7 cm [p = 0.04] and forehead to back index 19.6 cm versus 21.1 cm [p = 0.03]). Focusing more on the patient reported outcome measures, overall cosmetic satisfaction was found to be high (80.6%) and no differences were found between sagittal and metopic synostosis patients, nor between treated or non-treated craniosynostosis patients. Overall outcomes regarding self-esteem (RSES) and fear of negative evaluation (FNE) were comparable with population based outcomes. CONCLUSION: This is the first prospective study of sagittal and metopic craniosynostosis patients regarding long-term anthropometric outcome and patient reported outcome measures, including patients who were treated surgically and those who received observation only. Although study participation two decades after initial diagnosis was difficult to obtain, our data provide a platform from which one can develop an inclusive and uniform approach to assess patients' subjective cosmetic satisfaction using the CSO-Questionnaire and might be useful in preoperative counseling and psychosocial care for patients and their families.

A qualitative study of transitioning patients with hydrocephalus from pediatric to adult care: fear of uncertainty, communication gaps, independence, and loss of relationships.

OBJECTIVE: Hydrocephalus is one of the most common condition treated by pediatric neurosurgeons. Many neurosurgeons are unable to continue to care for patients after they become adults. Although significant gaps in care are believed to exist for youth transitioning from pediatric to adult care, very little is known about how patients and their caregivers feel about the process. This qualitative study sought to examine the perceptions of adolescents, young adults, and their caregivers regarding transitioning from pediatric to adult care at a single Canadian center. METHODS: The authors explored the perceptions of patients with treated hydrocephalus and their caregivers using semistructured interviews and qualitative research methodologies. A convenience sample was recruited, composed of adolescent patients and their caregivers at the neurosurgery clinic of BC Children's Hospital, and patients and caregivers recently transitioned to adult care from the clinic. Interviews were transcribed verbatim and coded, with common themes identified. RESULTS: Four overarching themes relating to the process of transitioning from pediatric to adult hydrocephalus care for patients and their caregivers were identified from the data: 1) achieving independence, 2) communication gaps, 3) loss of significant relationships and environment, and 4) fear of uncertainty. CONCLUSIONS: Overall, patients with hydrocephalus and their families are dissatisfied with the process of transitioning. This study identified common themes and concerns among this cohort that may form the basis of an improved transition model for youth with hydrocephalus as they become adults.

What attributes define excellence in a trauma team? A qualitative study

Background: Hospital trauma teams consist of a diverse spectrum of health care professionals who work together to deliver quality care. Although the qualities of a well-performing trauma team are often believed to be self-evident, there is little objective information about the most desirable personal and professional characteristics associated with quality trauma care. The aim of this study was to determine the traits and characteristics deemed of greatest value for a trauma team leader and a trauma team member in the adult trauma care setting. Methods: Semistructured interviews were conducted with trauma team leaders and trauma team members at a tertiary Canadian trauma centre. Standard qualitative research methodology was used. Interviews were recorded, transcribed and analyzed via an inductive analysis approach. Results: Thematic saturation was achieved after 5 interviews, and 6 further interviews were conducted to ensure that a breadth of trauma care disciplines were included. Six attributes were identified to be of greatest value for trauma team leaders: communication, role clarity, experience, anticipation, management and decisiveness. Four attributes were identified to be of greatest value for trauma team members: engagement, efficiency, experience and collaboration. We further characterized the language defining the ranking of performance for each of these attributes. Conclusion: Results of this qualitative study involving an experienced and diverse spectrum of trauma team practitioners provide insight into the characteristics that are critical to establishing a "good" trauma team. These findings can be used to inform future determinations of the quality of trauma teams, the education of trauma practitioners and continuing medical education training and assessment tools.

Contexte: Les équipes de traumatologie des hôpitaux sont formées de professionnels de la santé de divers horizons qui travaillent ensemble pour offrir des soins de qualité. Bien que les attributs d'une bonne équipe de traumatologie soient souvent vus comme étant évidents, il existe peu de données objectives sur les caractéristiques personnelles et professionnelles les plus fortement associées à des soins traumatologiques de qualité. Cette étude avait pour but de déterminer les traits et caractéristiques les plus recherchés chez les chefs et les membres d'équipes de traumatologie pour adultes. Méthodes: Nous avons mené des entrevues semi-structurées auprès de chefs et de membres d'équipes de traumatologie, dans un centre tertiaire de traumatologie canadien. Une méthode de recherche qualitative standard a été utilisée. Les entrevues ont été enregistrées et transcrites, puis analysées selon une approche inductive. Résultats: Le seuil de saturation thématique a été atteint après 5 entrevues, mais nous avons mené 6 entrevues supplémentaires pour garantir une variété dans les disciplines représentées. Six attributs ont été relevés pour les chefs d'équipe de traumatologie : communication, clarté du rôle, expérience, anticipation, gestion et esprit de décision. Quatre attributs ont été relevés pour les membres de l'équipe : engagement, efficacité, expérience et collaboration. Pour chaque attribut, nous avons caractérisé avec précision les termes définissant la qualité des soins prodigués. Conclusion: Les résultats de cette étude qualitative, qui rassemblait des professionnels de la traumatologie expérimentés et d'horizons diversifiés, mettent en lumière les caractéristiques essentielles à la mise en place d'une « bonne ¼ équipe de traumatologie. Ils pourront servir dans l'évaluation des équipes, dans la formation des praticiens et à la création de cours et d'outils d'évaluation pour l'éducation médicale continue.

The Preferred Attributes of a Trauma Team Leader: Evidence From a Discrete Choice Experiment.

OBJECTIVE: Leaders of a pediatric trauma team are tasked with managing rapidly changing diagnostic and treatment challenges, while ensuring the entire team functions effectively to produce optimal patient outcomes. An effective trauma team leader is often thought to be self-evident, and there is little formal literature identifying the leadership characteristics and attributes associated with optimal trauma team performance. The purpose of this study was to elicit the trauma team leader traits and characteristics deemed of greatest utility by members of the pediatric trauma team. DESIGN, SETTING, PARTICIPANTS: Members of the pediatric trauma team at British Columbia Children's Hospital were asked to participate in a semistructured interview to identify trauma team leader attributes associated with maximal team performance. Using the attributes, we constructed a discrete choice experiment (DCE). DCEs, developed in the economics and market research setting, allow participants to express preferences among finite alternatives, with subsequent statistical analysis that allows quantitative comparison of the utility of selected attributes. RESULTS: After interviewing 21 trauma team practitioners, 6 themes were identified as being most important for trauma team leadership. The developed DCE was administered to 64 members of the trauma team. Analysis of the DCE revealed the most important attributes were collaboration, strong communication, and decisiveness. The attribute of least utility was experience. The specific leadership qualities that provided the most utility to the trauma team included "actively involves input for team" (mean utility [MU]: 0.70; standard error [SE]: 0.11) and "concise communication, at times closed-loop" (MU: 0.52; SE: 0.09). "Hesitant and unclear communication" (MU: -0.88; SE: 0.09) and "often indecisive" (MU: -0.68; SE: 0.10) were deemed most detrimental (negative utility) to the team's function. CONCLUSIONS: This study is novel in applying a strategy to identify and quantify the relative value of trauma team leader attributes. When designing education initiatives for pediatric trauma care teams, defining trauma team quality metrics, and providing continuing medical education for the team leader, it is essential to incorporate preferred leadership characteristics. Crisis resource management skills benefit greatly from an understanding of the preferred attributes, as defined and evaluated by other trauma team members.

International survey on the management of Chiari 1 malformation and syringomyelia: evolving worldwide opinions.

INTRODUCTION: In 2003, pediatric neurosurgeons were surveyed under the auspices of the education committee of the International Society for Pediatric Neurosurgery (ISPN) to determine prevailing opinions regarding the management of Chiari I malformation (C1M) with and without associated syringomyelia. In the ensuing years, there has been further information from multiple C1M studies, with regards to indications, success rates of different surgical interventions, and complications. The purpose of this study was to re-evaluate current opinions and practices in pediatric C1M. MATERIALS AND METHODS: Pediatric neurosurgeons worldwide were surveyed, using an e-mail list provided by the ISPN communication committee chairperson. Respondents were given scenarios similar to the 2003 C1M survey in order to determine opinions regarding whether to surgically intervene, and if so, with which operations. RESULTS: Of 300 surveys electronically distributed, 122 responses were received (40.6% response rate)-an improvement over the 30.8% response rate in 2003. Pediatric neurosurgeons from 34 different countries responded. There was broad consensus that non-operative management is appropriate in asymptomatic C1M (> 90%) as well as asymptomatic C1M with a small syrinx (> 65%). With a large syrinx, a majority (almost 80%) recommended surgical intervention. Scoliotic patients with CIM were generally offered surgery only when there was a large syrinx. There has been a shift in the surgical management over the past decade, with a bone-only decompression now being offered more commonly. There remains, however, great variability in the operation offered. CONCLUSION: This survey, with a relatively strong response rate, and with broad geographic representation, summarizes current worldwide expert opinion regarding management of pediatric C1M. Asymptomatic C1M and C1M with a small syrinx are generally managed non-operatively. When an operation is indicated, there has been a shift towards less invasive surgical approaches.

Trends in incidence and long-term outcomes of myelomeningocele in British Columbia.

PURPOSE: Myelomeningocele is typically a disabling condition that results in neurologic, orthopedic, and urologic morbidity. The aim of this study was to examine the trends over time in both incidence and outcomes of myelomeningocele (MMC) in British Columbia (BC). METHODS: A retrospective chart review was performed of all children with MMC followed in the British Columbia Children's Hospital (BCCH) Spinal Cord Clinic between 1971 and 2016. The incidence of new MMC cases and the long-term outcomes of MMC were compared between two 10-year cohorts. The first cohort comprised children born with MMC between 1971 and 1981, and the second cohort comprised children born with MMC between 1996 and 2006. RESULTS: A total of 309 children with MMC were followed in the BCCH Spinal Cord Clinic between 1971 and 2016. There were 101 and 46 children with MMC in the two-time cohorts, respectively. Between the earlier and later cohorts, there was a significant difference in the following: MMC incidence [2.5/10,000 births vs 1.1/10,000 births, respectively (p = 0.0002)], mortality [18 vs 0% (p = 0.0009)], and the proportion of cases repaired in under 48 h [56 vs 98% (p < 0.0001)]. For surviving children, the proportion of children attending special classes was significantly different between the earlier and later cohorts [16 vs 46%, respectively (p = 0.0002)], whereas all other outcome measures, including the proportion with hydrocephalus, kyphoscoliosis, Chiari II surgery, bowel and bladder continence, recreation participation, obesity, and ambulation, were not significantly different. CONCLUSIONS: In BC, the incidence of new cases of MMC has decreased between 1971 and 2016, while the probability of survival for these patients has increased. Despite earlier and more universal post-natal repair, long-term outcomes have not improved significantly over time. Future research should focus on developing ways of reducing disability and improving quality of life for MMC patients and their families.