Congenital cardiac surgery and parental perception of risk: a qualitative study

Introduction: The way risk is interpreted by parents of children undergoing congenital cardiac surgery is poorly documented. Literature suggests clinicians have concerns that parents may not understand the complexity of procedures. Conversely, some parents perceive an unnecessary over-emphasise of risks. Aim: To explore how risk is encountered by parents of children who are undergoing cardiac surgery, in order to deliver effective and compassionate care. Methods: A qualitative approach was adopted. Interviews were undertaken with eighteen parents (mothers n=10 fathers n=8). Recordings were transcribed verbatim and analyzed using a constant comparative based approach. Findings: Three themes emerged from the data: the nature of risk, reflecting the complexity of parental perception of risk and the influence of the doctor-parent relationship; presenting risk, highlighting the way in which risk is presented to and interpreted by parents; and risk and responsibility, examining the way in which parents engaged with risk and the impact of this on their relationship. Conclusions: The way in which risk is perceived by parents is complex and multifactorial. The doctor-parent relationship is key to parental engagement. However, parents manage risk and uncertainty through a number of mechanisms, including those perceived as being not rational. This can cause tension, particularly when required to engage in informed decision-making

Congenital Cardiac Surgery and Parental Perception of Risk: A Quantitative Analysis

Introduction: Interpretation of risk by parents of children undergoing congenital cardiac surgery is poorly documented. The available evidence highlights a dichotomy, where clinicians suggest parents may not grasp the complexity and risk associated with procedures, whilst some parents suggest risk is unnecessarily over-emphasised. Aim: To quantify how risk is perceived by parents Methods: 106 parents of children undergoing cardiac surgery were recruited and completed a Likert scale from 1 (perceived low-risk) to 6 (perceived high-risk), at five points: arrival at pre-admission; post discussion with anaethetist/surgeon; day of surgery; discharge from intensive care; at outpatient follow up. The surgical sample was stratified according to risk adjustment in congenital heart surgery. Analysis: Data was analysed using Wilcoxon rank tests for differences in distributions of scores, and Krippendorff's Alpha to examine level of agreement. Results: Median parental risk scores varied over time, with no consistent risk scores observed. Maternal scores were consistently higher than paternal scores at every time point (p<0.001). Postoperative complications resulted in a persistent rise in risk perception at follow up (p<0.001). Analysis of parental risk scores, and objective measures of surgical risk highlighted poor agreement that was particularly marked at the extremes of risk. Conclusions: Parents perceived higher risk scores than those reported by the clinical team. Mothers reported statistically significant higher scores than their partners, highlighting potential tensions. In addition, the changing perception of risk over time emphasizes the need for flexible levels of support and information as parents navigate uncertainty

Outcome of a repair-oriented strategy for the aortic valve in children

BACKGROUND: We sought to evaluate the mid-term results of a repair-oriented strategy of the aortic valve in children. METHODS: Between February 2007 and November 2011, we performed 39 aortic valve repairs in children. Median age and weight at surgery were 5.5 years (3 days-18 years) and 16.7 kg (2.7-83.5), respectively. A total of 11 (28%) patients had one or more prior surgical or interventional cardiologic procedures. Median intensive care unit and hospital stay were two (1-96) and five (3-96) days, respectively. Median and cumulative follow-up were 12.7 months (15 days-64 months) and 48.9 patient-years, respectively. RESULTS: There were 3 (7.7%) early deaths all in patients undergoing additional complex cardiac procedures. Two (5.1%) patients required early surgical revision. Twenty-six (66%) patients had isolated or mixed aortic stenosis. The median gradient reduced from 62.4 (range 16-144) to 17.6 mm Hg (range 0-51.8), postoperatively (P = .02). At last follow-up, the median gradient remained largely unchanged at 21.1 mm Hg (0-49; P = .02). Twenty-six (66%) patients had isolated or mixed aortic valve regurgitation (mild in 8 [20%], moderate in 15 [38%], and severe in 6 ([15%] patients). The degree of aortic regurgitation improved in all patients with moderate or severe aortic regurgitation (P = .04). At last follow-up, two patients had moderate aortic regurgitation. Kaplan Meier freedom from reintervention in the survivors was 95% at three years. CONCLUSIONS: A repair-oriented strategy for the aortic valve in children has satisfactory early and mid-term results and remains a promising management option in children with aortic valve disease

Congenital cardiac surgery and parental perception of risk; a quantitative analysis

Introduction:Interpretation of risk by parents of children undergoing congenital cardiac surgery is poorly documented. The available evidence highlights a dichotomy where clinicians suggest parents may not grasp the complexity and risk associated with procedures, while some parents suggest risk is unnecessarily overemphasized.Aim:To quantify how risk is perceived by parents.Methods:One hundred six parents of children undergoing cardiac surgery were recruited and completed a Likert-type scale from 1 (perceived low risk) to 6 (perceived high risk), at 5 points: arrival at preadmission, post discussion with anethetist/surgeon, day of surgery, discharge from intensive care, and at outpatient follow-up. The surgical sample was stratified according to Risk Adjustment in Congenital Heart Surgery level.Analysis:Data were analyzed using Wilcoxon rank tests for differences in distributions of scores and Krippendorff α to examine the level of agreement.Results:Median parental risk scores varied over time, with no consistent risk scores observed. Maternal scores were consistently higher than paternal scores at every time point (P Conclusions:Parents perceived higher risk scores than those reported by the clinical team. Mothers reported statistically significantly higher scores than their partners, highlighting potential tensions. In addition, the changing perception of risk over time emphasizes the need for flexible levels of support and information as parents navigate uncertainty.</div

MULTIPLE VENTRICULAR SEPTAL DEFECTS: A NEW STRATEGY

INTRODUCTIONA multicenter prospective study was conducted to evaluate a new strategy for multiple Ventricular Septal Defects (VSDs).MATERIALS AND METHODSFrom 2004 to 2012 17 consecutive children (3 premature, 14 infants), mean age 3.2months (9 days to 9 months), mean body weight 4.2kg (3.1 to 6.1 kg), with multiple VSDs underwent Pulmonary Artery Banding (PAB) with an adjustable FloWatch-PAB. Associated cardiac anomalies included patent ductus arteriosus (9), aortic coarctation (2), hypoplastic aortic arch (2) and left isomerism (1). Five patients (5/17 =29.4%) required pre-operative mechanical ventilation, with a mean duration of 64 days (7 to 240 days)RESULTSThere were no early or late deaths during a mean follow-up of 48 months (7 to 98 months), with either FloWatch removal or last observation as end-points.FloWatch-PAB adjustments were required in all patients: a mean of 4.8 times/patient (2 to 9) to tighten the PAB, and a mean of 1.1 times/patient (0 to 3) to release the PAB with the patient’s growth. After a mean interval of 29 months (8 to 69 months) 10/17 (59%) patients underwent reoperation: 7/10 PAB removal, with closure of a remaining peri-membranous VSD in 6 and Damus-Kaye-Stansel, bi-directional Glenn, and atrial septectomy in 1; 3/9 patients required only PAB removal. All muscular multiple VSDs had closed in all 10 patients. PA reconstruction was required in 1/10 patient. In 5/7 of the remaining patients with the PAB still in situ, all muscular VSDs had already closed. The only 2 patients with persistent muscular multiple VSDs are the 2 patients with the shortest follow-up.CONCLUSIONS This reproducible new strategy with an adjustable PAB simplifies the management of infants with multiple VSDs and provides the following advantages: a) good results (0% mortality), delayed surgery with a high incidence (15/17=88%) of spontaneous closure of multiple muscular VSDs, and facilitated closure of residual peri-membranous VSD at an older age and