bims-hylehe 2019-09-08 papers

Issue of 2019–09–08
five papers selected by
Richard James, University of Pennsylvania

J Perinatol. 2019 Sep 05.

Early palliative care reduces stress in parents of neonates with congenital heart disease: validation of the "Baby, Attachment, Comfort Interventions".

Katharine Callahan, Rochelle Steinwurtzel, Lyn Brumarie, Sarah Schechter, Elvira Parravicini.

OBJECTIVE: To test our hypothesis that an innovative method of early palliative care called "Baby, Attachment, Comfort Interventions" reduces psychological distress in parents of neonates with congenital heart disease.
STUDY DESIGN: Prospective cohort study of parents of neonates with congenital heart disease. Distress was evaluated at admission and discharge using Neonatal Unit Parental Stressor Scale and Depression Anxiety Stress Index-21. Control parents received standard of care. Intervention parents received interdisciplinary interventions aimed at improving neonatal comfort and parenting experience.
RESULTS: Seventy-seven parents participated. Stress decreased in the intervention group (26 parents) but not in the control group (51 parents). There was no decrease in anxiety or depression in either group.
CONCLUSION: Early palliative care reduces stress in parents of neonates with congenital heart disease. Further work is needed to address depression/anxiety in this group of high-risk parents.

DOI: https://doi.org/10.1038/s41372-019-0490-y

Curr Opin Pediatr. 2019 Sep 02.

Recent advances in our understanding of neurodevelopmental outcomes in congenital heart disease.

Brian R White, Lindsay S Rogers, Matthew P Kirschen.

PURPOSE OF REVIEW: Patients with congenital heart disease (CHD) suffer from a pattern of neurodevelopmental abnormalities including deficits in language and executive function. In this review, we summarize recent studies that examine these outcomes, their risk factors, possible biomarkers, and attempts to develop therapeutic interventions.
RECENT FINDINGS: The latest literature has highlighted the role of genetics in determining neurologic prognosis, as we have increased our understanding of potentially modifiable perioperative risk factors. The role of potentially neurotoxic medical therapies has become more salient. One recent focus has been how neurodevelopment affects quality of life and leads to a high prevalence of mental illness. Neuroimaging advances have provided new insights into the pathogenesis of deficits.
SUMMARY: Although many risk factors in CHD are not modifiable, there is promise for interventions to improve neurodevelopmental outcomes in patients with CHD. Biomarkers are needed to better understand the timing and prognosis of injury and to direct therapy. Research into psychosocial interventions is urgently needed to benefit the many survivors with CHD.

DOI: https://doi.org/10.1097/MOP.0000000000000829

Pediatr Cardiol. 2019 Sep 05.

Implementation of Quality-of-Life Assessment Increases Referrals for Intervention in Patients with Tetralogy of Fallot.

Alisa Siebrasse, Sydney Allen, Julie Lavoie, Janessa Snippen, David Saudek.

Mortality from surgical repair of tetralogy of Fallot (TOF) has decreased dramatically over the last several decades. Despite excellent surgical outcomes, studies reveal that patients with TOF continue to have decreased physical functioning, academic difficulties, and psychosocial impairments. We hypothesized that administering a validated quality-of-life assessment to patients with TOF during routine cardiology follow-up visits would help identify deficits and increase referrals to appropriate interventional programs. Between May 2017 and November 2018, TOF patients (5-20 years) and/or their families completed a standardized quality-of-life assessment (PedsQL 4.0) during cardiology clinic visits. Providers were encouraged to refer patients with abnormal PedsQL 4.0 scores to appropriate services including cardiovascular rehabilitation, psychological evaluation, neurodevelopmental testing, and school intervention. Referrals for the intervention group were compared to those of a control group using χ2 analysis. The PedsQL 4.0 was completed by 79 patients at 90 clinic visits. At least one abnormal PedsQL 4.0 score was identified in 58% (52/90) of patient encounters, and of those 52 encounters, 38% (20/52) received at least one referral for intervention. The most commonly placed referrals were for neurodevelopmental testing (16) and school intervention (11). When comparing the number of referrals from the intervention group to those of the control group, referrals to all intervention services were statistically significant (p < 0.05). Our quality improvement initiative successfully utilized a quality-of-life assessment to detect deficits and subsequently increased the number of referrals to intervention services. Future studies will address barriers that prevent completion of the PedsQL and assess how interventions impact quality-of-life scores.

Keywords: Intervention; PedsQL 4.0; Quality-of-life assessment; Referrals; Tetralogy of fallot

DOI: https://doi.org/10.1007/s00246-019-02188-y

Am J Crit Care. 2019 Sep;28(5): 354-360

Having to Be the One: Mothers Providing Home Care to Infants With Complex Cardiac Needs.

Flerida Imperial-Perez, MarySue V Heilemann.

BACKGROUND: Early diagnosis of complex congenital heart disease and advances in surgical interventions have resulted in remarkable improvements in prognoses and hospital survival. Although studies have provided insight into children's experiences with complex congenital heart disease after hospitalization, few have addressed parents' experiences providing care for infants with complex congenital heart disease who are discharged home with complex care needs after surgical palliation.
OBJECTIVES: To describe the perceptions and lived experiences of mothers of infants who were discharged from the hospital after surgery for complex congenital heart disease but were then readmitted to the hospital.
METHODS: Data collection and analysis for this pilot study were guided by grounded theory. From February through October 2017, interviews were conducted with 10 mothers about their experiences caring for their infants at home after surgery for complex congenital heart disease.
RESULTS: Analyses led to development of 1 category, "having to be the one," which had 3 properties: having no choice but to provide complex care at home, handling unexpected roles, and grappling with the possibility of death.
CONCLUSIONS: The category of "having to be the one" highlighted mothers' experiences providing medicalized care at home to their infants after complex cardiac surgery while managing other responsibilities, such as employment, busy households, and parenting other school-age children. The role of the caregiver is vital but demanding. Mothers' caregiving at home may be enhanced by nursing interventions such as routine screening for infant distress plus assessment for alterations in family coping or relational challenges that threaten family function.

DOI: https://doi.org/10.4037/ajcc2019887