A valued voice: A qualitative analysis of parental decision-making preferences in emergent paediatric surgery.

INTRODUCTION: Shared decision-making, with an emphasis on patient autonomy, is often advised in healthcare decision-making. However, this may be difficult to implement in emergent settings. We have previously demonstrated that when considering emergent operations for their children, parents prefer surgeon guidance as opposed to shared decision-making. Here, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision-making preferences. METHODS: Parents of paediatric patients who underwent surgery over the past 5 years at a University-based, tertiary children's hospital for cancer, an emergent operation while in the neonatal intensive care unit (NICU) or extracorporeal membrane oxygenation (ECMO) were invited to complete a 60-min semi-structured interview. Interviews were digitally recorded and transcribed verbatim. Thematic content analysis was performed via deductive and inductive analysis. An iterative approach to thematic sampling/data analysis was used. RESULTS: Thematic saturation was achieved after 12 interviews (4 cancer, 5 NICU and 3 ECMO). Five common themes were identified: (1) recommendations from surgeons are valuable; (2) 'lifesaving mode': parents felt there were no decisions to be made; (3) effective ways of obtaining information about treatment; (4) shared decision-making as a 'dialogue' or 'discussion' and (5) parents as a 'valued voice' to advocate for their children. CONCLUSIONS: When engaging in decision-making regarding emergent surgical procedures for their children, parents value a surgeon's recommendation. Parents felt that discussion or dialogue with surgeons defined shared decision-making, and they believed that the opportunity to ask questions gave them a 'valued voice', even when they felt there were no decisions to be made. PATIENT OR PUBLIC CONTRIBUTION: For this study, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision-making preferences. Parents thus provided all the data for the study.

Discrepancies in decision making preferences between parents and surgeons in pediatric surgery.

BACKGROUND: Little data exists regarding decision-making preferences for parents and surgeons in pediatric surgery. Here we investigate whether parents and surgeons have similar decision-making preferences as well as which factors influence those preferences. Specifically, we compare parents' and surgeons' assessments of the urgency and complexity of pediatric surgical scenarios and the impact of their assessments on decision-making preferences. METHODS: A survey was emailed to parents of patients evaluated in a university-based pediatric surgery clinic and surgeons belonging to the American Pediatric Surgical Association. The survey asked respondents to rate 6 clinical vignettes for urgency, complexity, and desired level of surgeon guidance using the Controlled Preferences Scale (CPS). RESULTS: Regarding urgency, parents were more likely than surgeons to rate scenarios as emergent when cancer was involved (parents: 68.8% cancer vs. 29.5% non-cancer, p < .001; surgeons: 19.2% cancer vs. 25.4% non-cancer, p = .051). Parents and surgeons were more likely to rate a scenario as emergent when a baby was involved (parents: 45.2% baby vs. 36.2% child, p = .001; surgeons: 28.0% baby vs. 14.0% child, p < .001). Regarding decision-making preferences, parents and surgeons had similar CPS scores (2.56 vs. 2.72, respectively). Multivariable analysis showed parents preferred more surgeon guidance when scenarios involved a baby (OR 1.22; 95% CI 1.08-1.37; p < 0.01) or a cancer diagnosis (OR 1.29; 95% CI 1.11-1.49; p < 0.01), and that both parents and surgeons preferred more surgeon guidance when a scenario was considered emergent (parents: OR 1.81; 95% CI 1.37-2.38, p < 0.001; surgeons: OR 2.48 95% CI 1.76-3.49, p < 0.001). CONCLUSIONS: When a pediatric patient is a baby or has cancer, parents are more likely then surgeons to perceive the clinical situation to be emergent, and both parents and surgeons prefer more surgeon guidance in decision-making when a clinical scenario is considered emergent. More research is needed to understand how parents' decision-making preferences depend on clinical context.

Shared decision making in surgery: a scoping review of patient and surgeon preferences.

BACKGROUND: Many suggest that shared decision-making (SDM) is the most effective approach to clinical counseling. It is unclear if this applies to surgical decision-making-especially regarding urgent, highly-morbid operations. In this scoping review, we identify articles that address patient and surgeon preferences toward SDM in surgery. METHODS: We used the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews (PRISMA-ScR) to develop our protocol. Medline, EMBASE, and Cochrane databases were searched from inception through 11.2017. Title/abstract review identified peer-reviewed, empirical articles that addressed patient/surgeon preferences toward SDM in surgery. Identified articles underwent full review by two independent investigators. We addressed the following questions: (1) What is known from existing empirical evidence about patients' and/or surgeons' surgical decision-making preferences? (2) Why might patients and/or surgeons prefer SDM? (3) Does acuity of intervention impact surgical decision-making preferences? Outcome measures included study methods, surgical specialty, diagnosis, study location/setting, type/number of subjects, acuity of intervention, surgeon/patient decision-making preferences, and factors associated with favoring SDM. Data was analyzed in Microsoft Excel. RESULTS: 20,359 articles were identified with 4988 duplicates, yielding 15,371 articles for title/abstract review. 74 articles were included in final analysis. 68% of articles discussed oncologic decision-making. 46% of these focused on breast cancer. 92% of articles included patients, 22% included surgeons. 75% of articles found surgeons favored SDM, 25% demonstrated surgeons favored surgeon guidance. 54% of articles demonstrated patients favored SDM, 35% showed patients favored surgeon guidance, 11% showed patients preferred independent decision-making. The most common factors for patients favoring SDM included female gender, higher education, and younger age. For surgeons, the most common factors for favoring SDM included limited evidence for a given treatment plan, multiple treatment options, and impact on patient lifestyle. No articles evaluated decision-making preferences in an emergent setting. CONCLUSIONS: There has been limited evaluation of patient and surgeon preferences toward SDM in surgical decision-making. Generally, patients and surgeons expressed preference toward SDM. None of the articles evaluated decision-making preferences in an emergent setting, so assessment of the impact of acuity on decision-making preferences is limited. Extension of research to complex, emergent clinical settings is needed.

Inappropriate referrals in pediatric surgery.

BACKGROUND: Inappropriate referrals consume a significant amount of health-system resources. To optimize referral patterns, organizations such as the American Academy of Pediatrics provide policy statements regarding appropriate surgical referrals. Here, we identify the volume/characteristics of inappropriate referrals to pediatric surgeons. METHODS: Retrospective chart review of new patients evaluated in the Pediatric Surgery Clinic at a university-based, tertiary-care Children's Hospital over 12-months. Demographics, insurance, referring provider/surgeon diagnosis, and referring provider specialty were abstracted and coded as appropriate/inappropriate. RESULTS: Five hundred nine referrals were identified; 19% were inappropriate. Inappropriate referrals were more common from mid-level providers (OR = 1.97, p = 0.02) and non-pediatric providers (OR = 1.94, p = 0.01) compared to physicians and pediatric providers. Female patients (OR = 1.65, p = 0.03) and younger patients (OR = 0.94, p = 0.002) were more likely to have an inappropriate referral than their older, male peers. Umbilical hernia, chest wall deformity, and GI complaint were the diagnoses most frequently given to inappropriately referred patients. Average distance traveled by patients for an inappropriate referral was 57.8 miles with significant difference in average distance traveled for rural (78 miles; range = 12-199) and urban (42 miles; range = 0-125) patients (p < 0.01). CONCLUSIONS: Despite guidelines on appropriate referral patterns, 19% of pediatric surgery referrals are inappropriate. Increased supervision of mid-level providers, training in pediatrics, or referral to a local pediatrician prior to surgical consultation may decrease the rate of inappropriate referrals. TYPE OF STUDY: Prognosis. LEVEL OF EVIDENCE: Level II.