Chronic Neuromotor Disability After Complex Cardiac Surgery in Early Life

Abstract

BACKGROUND AND OBJECTIVES: Little is known about chronic neuromotor disability (CND) including cerebral palsy and motor impairments after acquired brain injury in children surviving early complex cardiac surgery (CCS). We sought to determine the frequency and presentation of CND in this population while exploring potentially modifiable acute care predictors.METHODS: This prospective follow-up study included 549 children after CCS requiring cardiopulmonary bypass at #6 weeks of age. Groups included those with only 1 CCS, mostly biventricular CHD, and those with .1 CCS, predominantly single ventricle defects. At 4.5 years of age, 420 (94.6%) children received multidisciplinary assessment. Frequency of CND is given as percentage of assessed survivors. Predictors of CND were analyzed using multiple logistic regression analysis.RESULTS: CND occurred in 6% (95% confidence interval [CI] 3.7%-8.2%) of 4.5-year survivors; for 1 CCS, 4.2% (CI 2.3%-6.1%) and .1, 9.8% (CI 7%-12.6%). CND presentation showed: hemiparesis, 72%; spasticity, 80%; ambulation, 72%; intellectual disability, 44%; autism, 16%; epilepsy, 12%; permanent vision and hearing impairment, 12% and 8%, respectively. Overall, 32% of presumed causative events happened before first CCS. Independent odds ratio for CND are age (days) at first CCS, 1.08 (CI 1.04-1.12; P , .001); highest plasma lactate before first CCS (mmol/L), 1.13 (CI 1.03-1.23; P = 0.008); and .1 CCS, 3.57 (CI 1.48-8.9; P = .005).CONCLUSIONS: CND is not uncommon among CCS survivors. The frequency of associated disabilities characterized in this study informs pediatricians caring for this vulnerable population. Shortening the waiting period and reducing preoperative plasma lactate levels at first CCS may assist in reducing the frequency of CND. WHAT'S KNOWN ON THIS SUBJECT:Neurodevelopmental outcomes after cardiac surgery in early life provide critical information for understanding and improving care. Studies show these children are at risk for arterial ischemic stroke and acquired brain injury; further characterization of motor impairment is needed. WHAT THIS STUDY ADDS:This study focuses on the presence of chronic neuromotor disabilities including cerebral palsy and motor impairments after acquired brain injury in children surviving early complex cardiac surgery, providing information on the frequency, characteristics, and predictors that may assist in prevention.

Children’s complex care needs: a systematic concept analysis of multidisciplinary language

“…However, it was found that parents/guardians typically subjugated their own needs for their child's needs [53,54,93], often leading to unmet psychosocial, financial, and physical needs of the parents [5,26,65,104,106,138], due to the unrelenting intensity of caregiving [84,88,93], especially in the absence of adequate respite care [22,84,85,119,137,150].…”

“…emerging through the ongoing care adjustments required during the physical and psychological development of a child[42, 69,82,83,85,132,133,150]. As developmental milestones were missed[80,143], increased physical and technical care was often necessary[7, 14, 48, 51, 54, 56, 71, 78, 80,85,88,106,112,141,142,148,150]. There was cross-disciplinary recognition of these increased CCNs through multiple transition points, as children and families adjusted to changing services and care plans during transitions from hospital to home[15, 16, 19, 20, 35, 45, 52, 75, 76,96,111], children's to adult services[14, 19, 28, 31, 59, 71, 78,112], and/or from curative to palliative care[42, 56, 66,95,131].…”

“…Common sources of unnecessary confusion and concern related to the lack of consensus on essential qualifications for children's nursing[4, 16, 17, 45,90], poorly articulated roles[5, 17, 72,122], and the need for a shared vision of inter-agency multidisciplinary working[2, 22, 44,122]. Furthermore, in light of the need for greater evidence-based decisions pertaining to CCNs[2,106], practitioners' personal and professional biases[11, 56, 66,114] emerged, alongside hospital ethos [66], cultures[44, 46,104], and prevailing institutional care practices [9-11, 79] as exerting influence over care decisions.…”

Neurodevelopmental outcomes at 2 and 4 years in children with congenital heart disease

“…Children with congenital heart disease (CHD) are at risk of a characteristic pattern of neurodevelopmental (ND) problems that includes deficits in language, motor, executive functioning, and social skills . Notably, ND problems in survivors of CHD are more common than late mortality, significant arrhythmias, or bacterial endocarditis, and thus represent the most common long‐term morbidity in these patients .…”

A clinical perspective on a pain neuroscience education approach to manual therapy

“…In physical therapy, for example, it has been shown that teaching students about the neuroscience of pain can improve their knowledge of pain [9], and lead to healthier and more positive attitudes and beliefs regarding chronic pain [8]. The increased knowledge of pain, however, may have created an unforeseen additional burden for physical therapists utilizing manual therapy [7,10]. One specific emerging pain science approach that has created a potential clinical challenge for the manual therapist has been pain neuroscience education (PNE) [11,12].…”