76 Neurodevelopmental and Psychosocial Outcomes in Children and Young Adults With Complex Congenital Cardiac Disease
Longer-Term Effects of the Initial Intensive Care Unit Stay and Living With Chronic Cardiac Disease on the Patient and Family
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present in older children Even after taking into account demographic factors, disease severity, and intelligence quotient, metacognition uniquely and strongly predicted poorer school performance In exploratory analyses, single-ventricle patients were rated as having lower school competency and school QOL, while two-ventricle patients were rated as having poorer behavioral regulation.199 While multiple studies have shown that there is psychosocial dysfunction in the pediatric HD population, few studies have assessed for an association between psychosocial predictors in the individual or family environment and health-related QOL.179,182,200–203 A recent multicenter study comprising 815 patient-parent pairs in the United States and the United Kingdom completed by Ernst et al explored the relationships between important psychosocial factors in the child with CHD and their parent and psychosocial QOL score.204 Wallander's and Varni's disability-stress coping model guided factor selection, which included disease factors, educational impairment, psychosocial stress, and child psychologic and parent/family factors The models created for patient (R2 = 0.58) and parent-proxy (R2 = 0.60) PCQLI Psychosocial Impact subscale score accounted for a substantial amount of variance in QOL score For patientreported QOL, disease factors, educational impairment, poor self-esteem, anxiety, patient posttraumatic stress, and parent posttraumatic stress were associated with lower QOL For parent-proxy-report QOL, disease factors, educational impairment, greater parental medical stress, poorer child self-esteem, more child internalizing problems, and parent posttraumatic stress were associated with lower QOL The results highlight that biopsychosocial factors account for over half the variance in the psychosocial QOL score in CHD survivors Assessing and treating psychologic issues in the child and the parent may have a significant positive impact on QOL Mussatto et al performed a corollary study from the PCQLI Validation Study data assessing the importance of self-perceptions to psychosocial adjustment in adolescents with heart disease.205 In this study the investigators assessed selfperception with the Self Perception Profile for Adolescents (SPPA) and HRQOL with the PedsQL generic measure Lower HRQOL score was associated with a shorter time since last hospitalization, the need for any medication, a lower household income, a lower global self-worth, a self-perception of poorer health, and a larger negative SPPA Discrepancy score More than half the sample ranked their competency low on two or more domains that they considered to be important as measured by the SPPA A larger negative SPPA discrepancy score was significantly associated with poorer global self-worth Of the participants, 67% had a negative SPPA discrepancy score for behavioral conduct and 83% for scholastic competence Both global self-worth and the SPPA discrepancy score were significant determinants of internalizing problems, externalizing problems, and HRQOL, suggesting that lack of congruence between perceived competence and importance is a risk factor for maladjustment Longer-Term Effects of the Initial Intensive Care Unit Stay and Living With Chronic Cardiac Disease on the Patient and Family Longer-Term Effects of the Initial ICU Stay on the Patient-Parent Dyad and Posttraumatic Stress Disorder in Parents Multiple factors for adverse outcomes coexist in neonates who experience a long initial hospital LOS; all of these have been shown to increase parental stress, anxiety, and feelings of helplessness and inadequacy.206–208 This is superimposed on the early traumatic events of receiving the diagnosis of cCHD, the uncertainty of survival, separation from the infant, separation from other family members, possible setbacks including postpartum depression, lack of sleep, witnessing cardiopulmonary arrest and other medical procedures, being surrounded by medical paraphernalia, and vicarious trauma (witnessing events in other patients) Following discharge, home care of the neonate following surgery for cCHD may be exceptionally complex, with feeding issues common, multiple medications, feelings of inadequacy, disruption of the family routine, and many other issues.209–213 This stressful, abnormal maternal-child dyad is related, in part, to later behavioral challenges (Fig 76.3).8 These early challenges, both to the infant and the family, almost certainly have long-term effects on parenting styles, psychosocial health, and the development of the “fragile child” (Fig 76.4).8,214–216 Indeed, maternal worry and maternal mental health (along with a small component of child visual-perceptual skills) accounted for 27.9% of the variability in child behavior adjustment at the end of the first year of school—5 to 10 times more explanatory than any surgical or intraoperative factor described to date.217 In their seminal work, McCusker and colleagues have shown, in a randomized trial, that perioperative efforts to reduce maternal worry utilizing advanced practice nursing have significant benefits to both the mother and the child.218 Acute stress disorder in parents during the neonatal hospitalization is common,219 and has been shown to be related to symptoms of posttraumatic