Family risk communication preferences in pediatric surgery: A scoping review.

BACKGROUND: Effective patient-surgeon communication is vital in pediatric surgical practice. However, family (including child) preferences for the format and content of risk communication information are largely unknown. In order to optimize the shared-decision making process, this scoping review explored the family-preferred methods for risk communication in pediatric surgery. METHODS: A search was conducted in 7 databases from inception until June 2020 to identify family risk communication preferences in pediatric surgical patients, with language restricted to English and French. Two independent reviewers completed the screening in Rayyan software following PRISMA protocol. Included publications were reviewed for data extraction, analyzed, and assessed for risk of bias using standardized instruments. RESULTS: A total of 6370 publications were retrieved, out of which 70 were included. Studies were predominantly from ENT (30.0%), general surgery (15.7%), and urology (11.4%). Family-preferred risk communication methods were classified as visual, verbal, technology-based, written, decision aids or other. Technological (32.4%) and written tools (29.7%) were most commonly chosen by families as their preferred risk communication methods. Written tools were frequently used in general surgery and urology, while technology-based tools were widely used in ENT. Most studies were cross-sectional and had a significant risk of bias. CONCLUSION: Eliciting families' preferences for risk communication methods is critical for the implementation of shared decision-making. Different risk communication media appear to be preferred within specific surgical domains. To further improve shared-decision making in pediatric surgery, the development and usage of robust, validated risk communication tools are necessary. LEVEL OF EVIDENCE: Level IV (Scoping Review).

Cholesteatoma in Congenital Aural Atresia and External Auditory Canal Stenosis: A Systematic Review.

OBJECTIVE: Patients with congenital external auditory canal (EAC) abnormalities are at risk of developing cholesteatoma and often undergo surveillance imaging to detect it. The aims of this systematic review are to determine the incidence of cholesteatoma in patients with congenital aural atresia (CAA) and patients with congenital EAC stenosis and to investigate the most common age of cholesteatoma diagnosis. This information will help clinicians decide which patients require surveillance scanning, as well as the timing of imaging. DATA SOURCES: Ovid MEDLINE, Embase, CENTRAL, and Web of Science databases. REVIEW METHODS: A systematic literature review following the PRISMA guidelines was performed. The data sources were searched by 2 independent reviewers, and articles were included that reported on CAA or congenital EAC stenosis with a confirmed diagnosis of cholesteatoma. The selected articles were screened separately by 3 reviewers before reaching a consensus on the final articles to include. Data collection on the number of patients with cholesteatoma and the age of diagnosis was performed for these articles. RESULTS: Eight articles met the inclusion criteria. The incidence of cholesteatoma was 1.7% (4/238) in CAA and 43.0% (203/473) in congenital EAC stenosis. The majority of patients with congenital EAC stenosis that developed cholesteatoma were diagnosed at age <12 years. CONCLUSION: CAA is associated with a low risk of cholesteatoma formation, and surveillance imaging is unnecessary in asymptomatic patients. EAC stenosis is strongly associated with cholesteatoma, and a surveillance scan for these patients is recommended prior to 12 years of age with close follow-up into adulthood.

Use of a risk communication survey to prioritize family-valued outcomes and communication preferences for children undergoing outpatient surgical procedures.

BACKGROUND: Effective shared decision-making in pediatric surgery requires clarity regarding which surgical outcomes are most important to patients and their families, and how they prefer to receive the information. Despite how essential this is for effective risk communication, little is known about the communication needs and preferences of patients and their families in elective pediatric surgery. METHODS: We administered a mailed and online cross-sectional survey in English and French to 548 families before or after surgery for hernia/hydrocele repair or tonsillectomy/adenoidectomy between July 2019 and February 2021. The survey consisted of 22 questions eliciting most valued patient-reported outcomes (PROs) across 4 domains: health-related quality of life (5), functional status (5), symptoms and symptom burden (5), health behaviours and patient experience (7), as well as overall impressions (3), surgical risks (5), communication preferences (4), and demographic questions (16). RESULTS: The survey was completed by 368 patient families (60 preoperative, 308 postoperative, response rate 67.2%). Most respondents (72%) indicated a significant desire to be informed on all listed PROs alongside surgical complications, and highly valued all functional and quality of life outcomes (92.9% & 89.8%, respectively). Preoperatively, patient families preferred to receive information in the form of pamphlets and websites, whereas postoperatively they preferred direct communication. CONCLUSION: Families value functional and quality of life PROs as much as clinical outcomes, and increasingly seek more contemporary (electronic) means of risk communication than we currently offer. This data will inform the development of mobile tools for personalized communication in pediatric surgery.

The burden of waiting: wait times for pediatric surgical procedures in Quebec and compliance with national benchmarks.

Background: Wait time information and compliance with national guidelines are limited to a few adult conditions in the province of Quebec. We aimed to assess compliance with Paediatric Canadian Access Targets for Surgery (P-CATS) guidelines and determine the burden incurred due to waiting for 3 common elective surgical conditions (inguinal hernia, cryptorchidism and hypospadias) in a pediatric population. Methods: We carried out a population-based retrospective cohort study of randomly selected children residing in Quebec without complex chronic medical conditions, using administrative databases belonging to the Régie de l'assurance maladie du Québec for the period 2010-2013. Disability-adjusted life years (DALYs) were calculated to measure the burden due to waiting. Multivariate forward regression identified risk factors for compliance with national guidelines. Results: Surgical wait time information was assessed for 1515 patients, and specialist referral wait time was assessed for 1389 patients. Compliance with P-CATS benchmarks was 76.6% for seeing a specialist and 60.7% for receiving surgery. Regression analysis identified older age (p < 0.0001) and referring physician specialty (p = 0.001) as risk factors affecting specialist referral wait time target compliance, whereas older age (p = 0.040), referring physician specialty (p = 0.043) and surgeon specialty (p = 0.002) were significant determinants in surgical wait time compliance. The total burden accrued due to waiting beyond benchmarks was 35 DALYs. Conclusion: Our results show that provincial compliance rates with wait time benchmarks are still inadequate and need improvement. Patient age and physician specialty were both found to have significant effects on wait time target compliance.

Contexte: L'information sur les temps d'attente et le respect des lignes directrices nationales au Québec est limitée à quelques affections chez les adultes. Nous avons voulu évaluer le respect des objectifs canadiens en matière d'accès aux chirurgies pédiatriques (P-CATS) et déterminer le fardeau associé à l'attente pour 3 affections courantes nécessitant une intervention chirurgicale non urgente (hernie inguinale, cryptorchidie et hypospadias) chez une population pédiatrique. Méthodes: Pour ce faire, nous avons mené une étude de cohorte populationnelle rétrospective portant sur des enfants vivant au Québec et n'ayant pas de problèmes de santé chroniques complexes. Leur sélection aléatoire a été faite à partir de bases de données administratives appartenant à la Régie de l'assurance maladie du Québec pour la période de 2010 à 2013. Nous avons calculé les années de vie ajustées en fonction de l'incapacité (AVAI) pour mesurer le fardeau associé à l'attente. Une régression ascendante multivariée a permis de relever les facteurs de risque relatifs au respect des lignes directrices nationales. Résultats: Nous avons évalué les données sur le temps d'attente pour une intervention chirurgicale chez 1515 patients, et sur le temps d'attente pour la consultation d'un spécialiste chez 1389 patients. Les valeurs de référence pour le respect des P-CATS étaient de 76,6 % pour la consultation d'un spécialiste et de 60,7 % pour la réalisation d'une intervention. L'analyse de régression a montré que l'âge plus avancé (p < 0,0001) et la spécialité du médecin traitant (p = 0,001) étaient des facteurs de risque pour la consultation d'un spécialiste, tandis que l'âge plus avancé (p = 0,040), la spécialité du médecin traitant (p = 0,043) et la spécialité du chirurgien (p = 0,002) étaient des déterminants significatifs du respect des objectifs d'attente pour une intervention. Le fardeau total causé par l'attente au-delà des valeurs de référence était de 35 AVAI. Conclusion: Nos résultats montrent que le taux provincial de respect des lignes directrices d'attente demeure inadéquat et doit être amélioré. L'âge des patients et la spécialité des médecins ont tous deux un effet significatif sur le respect des objectifs d'attente.