The 1-minute preceptor to improve diagnostic reasoning in a primary care nurse practitioner residency program.

BACKGROUND: The One-Minute Preceptor (OMP) model to teach diagnostic reasoning and Reporter, Interpreter, Manager, and Educator (RIME) framework to measure progress are used in physician training. Little is known about the use of these tools in nurse practitioner (NP) training. LOCAL PROBLEM: Precepting NP trainees at the Veterans Affairs (VA) is not standardized. A standardized approach to precepting NP residency trainees using the OMP model and RIME scoring was evaluated for improvement and helpfulness. METHODS: A quality-improvement project with two Plan-Do-Study-Act (PDSA) cycles were conducted over a 12-week period. Mean RIME scores, preceptor self-efficacy, and use of teaching skills were measured preintervention and postintervention. Data were analyzed using a paired sample t-test and descriptive statistics. INTERVENTIONS: A convenience sample of preceptors and trainees was recruited from a large VA medical center. A 1-hour workshop educated preceptors with role playing and return demonstrations on OMP techniques and RIME scoring. The teachings were applied to standardize precepting and assess diagnostic reasoning. Trainee self-scoring and results triggered conversations to fulfil the identified gaps. RESULTS: Mean RIME scores improved (1.62 [0.17] vs. 2.23 [0.38], p < .001) post 12-week intervention. Mean RIME scores improved between PDSA cycle 1 and cycle 2 (2.07 [0.25] vs. 2.48 [0.39], p < .001). Preceptors (91%) and trainees (100%) found the OMP model and RIME framework helpful. CONCLUSION: Use of the OMP improved diagnostic reasoning in NP trainees. The OMP and RIME framework provided standardization of precepting and trainee discussions on improvements.

Neurocognition in adults with congenital heart disease post-cardiac surgery: A systematic review.

BACKGROUND: Congenital heart disease (CHD) is the most common birth defect worldwide. Neurocognitive deficits and psychiatric disorders, which can impact daily life, have been reported in over 50% of adolescents and young adults with moderate to complex CHD. OBJECTIVE: Conduct a systematic review of sex, clinical, psychological and social determinants of health (SDoH) factors affecting neurocognition in adults with CHD post-cardiac surgery. METHODS: PubMed, Cumulated Index to Nursing and Allied Health Literature, and Embase were searched for relevant studies over the past 5 years. Thirteen articles met inclusion criteria of: 1) CHD post-cardiac surgery, 2) age ≥ 18 years, and 3) used a validated measure of neurocognition. RESULTS: A total of 507 articles were identified. After screening, 30 articles underwent full text review yielding 13 eligible articles. Twelve articles reported deficits in multiple domains including executive function, intellectual functioning, visuospatial ability, and verbal fluency in more complex CHD. Only three studies examined cognition based on sex, with female and lower parental SES associated with worse cognitive outcomes. Most studies were from Europe, predominantly sampled Caucasian participants, had heterogeneous samples of CHD complexity, and lacked standardized cognitive measures which limited generalizability of findings. CONCLUSIONS: Adults with CHD present with a wide variety of cognitive deficits, with some associations with sex, clinical history, and SDoH factors. It remains unclear to what degree these factors affect cognition in adults with moderate to complex CHD. Future longitudinal studies should focus on age-related effects on cognition and potential health care disparities in diverse CHD samples.

Low pre-albumin but not thiamine predicts cognitive deficits in adolescents post-Fontan and healthy controls.

BACKGROUND: Low pre-albumin, body mass index, and thiamine levels have been associated with poor nutritional status and cognitive/memory deficits in adult heart failure patients. However, the relationship of these nutritional/dietary intake biomarkers to cognition has not been assessed in adolescents post-Fontan procedure and healthy controls. METHODS: This is a cross-sectional study. Adolescents (14-21 years of age) post-Fontan completion were recruited from paediatric cardiology clinics and controls from the community. The Montreal Cognitive Assessment was administered (normal ≥ 26), and blood draw (thiamine [normal 70-110 nmol/L] and pre-albumin levels [adolescent normal 23-45 mg/dL]) and the Thiamine Food Frequency Questionnaire were completed by all participants. RESULTS: Seventy subjects, 40 post-Fontan (mean age 16 ± 1.6, female 51%, Hispanic 44%, hypoplastic left heart syndrome 26%) and 30 controls (mean age 16.8 ± 1.9, female 52%, Hispanic 66%), were participated. Post-Fontan group had lower median total cognitive scores (23 versus 29, p < 0.001), pre-albumin levels (23 versus 27, p = 0.013), and body mass index (20 versus 24, p = 0.027) than controls. Post-Fontan group had higher thiamine levels than controls (127 versus 103, p = 0.033). Lower pre-albumin levels (< 23) and underweight body mass index were associated with abnormal total cognitive scores (p = 0.030). Low pre-albumin level (p = .038) was an independent predictor of worse cognition. CONCLUSION: Lower pre-albumin was an independent predictor for worse cognition in adolescents post-Fontan. Lower pre-albumin levels may reflect chronic liver changes or protein-losing enteropathy seen in Fontan physiology. These findings highlight the possibility for nutrition-induced cognitive changes.

Young adults with congenital heart disease heading to college: Are college health centers and providers prepared?

BACKGROUND: An estimated 1.4 million adults in the United States have congenital heart disease (CHD). As this population grows and many pursue postsecondary education, these adults' health care needs and concerns should be at the forefront for providers, particularly nurse practitioners, at college health centers. PURPOSE: To understand how college health centers and providers identify and manage the care of students with chronic conditions to further support their health care transition, with a focus on students with CHD. METHODOLOGY: Qualitative key informant interviews were performed with providers at five college health centers to understand the processes in place and the challenges health care providers on college campuses face when caring for students with CHD. RESULTS: Most of the college health centers did not have formalized processes in place to care for these students. Although many felt that they had the capabilities in their health centers to manage these students' maintenance/preventive care needs, fewer felt comfortable with their urgent or emergent care needs. The onus was often on students or parents/guardians to initiate these transitions. CONCLUSIONS: This study highlights some challenges to providing care to students with chronic conditions like CHD. More collaborative relationships with specialists may be critical to ensuring that all the care needs of chronic disease students are met on college campuses. IMPLICATIONS: Nurse practitioners, who often staff these clinics, are well positioned to support this transition onto campuses and lead the development of processes to identify these students, ease care management transitions, and ensure easy provider communication that allow students with chronic diseases to thrive on campus.

Mixed methods evaluation of an oral health education program for pediatric dental, medical and nursing providers.

PURPOSE: To evaluate the application of knowledge, attitudes, and skills learned in an oral health education program among pediatric dental and medical residents, and pediatric and family nurse practitioners (PNPs and FNPs). METHODS: A mixed methods study design included a year-end online survey and focus groups. Eighty participants completed the survey (94%) and seven focus groups were conducted (n = 69) representing each of the four cohorts in 2020-2022. Analysis of variance was used to assess differences in survey responses by dental/medical specialty. Focus group audio recordings were analyzed using Atlas.ti.22 to identify common themes. RESULTS: The program increased knowledge and skills in oral health core competencies and positive attitudes regarding oral health education. All PNPs (100%) and most pediatric medical residents (94%) and FNPs (91%) strongly agreed/agreed that the oral health program led to an increase in screening for early childhood caries, more confidence in applying fluoride varnish and providing oral health anticipatory guidance during patient visits. Most pediatric medical residents, PNPs and FNPS (98%) strongly agreed/agreed that primary care providers should incorporate oral health into their practice and provide referrals to dental professionals as part of well-child visits. CONCLUSIONS: The program improved oral health-related knowledge, attitudes and skills among dental and medical primary care providers. Future oral health education programs for health care professionals can use this model to help bridge the gap between dental and primary care and ultimately improve access to preventive oral health care for children and families.

Five-year follow-up of an interdisciplinary oral health education program: Clinical practice behaviors in working pediatric nurse practitioners.

ABSTRACT: Many interdisciplinary oral health education programs have been implemented for pediatric primary care providers (e.g., pediatric nurse practitioner [PNP]) to raise awareness and gain skills related to the prevention of early childhood caries (ECC). However, no studies have evaluated if these educational programs provided to PNPs during their training resulted in clinical practice behavior changes. A 33-item survey was designed on a web-based platform (Survey Monkey) and distributed to 71 PNP graduates. The survey included demographics, current clinical practice, clinical practice behaviors, and perceived barriers to practice. Descriptive statistics were used to assess the survey items and thematic analyses on the open-ended questions. The survey response rate was 70% (50/71 PNPs). Most practicing PNPs were in acute care or specialty clinics (n = 33; 66%) where oral health was not part of the focused visit. Majority used knowledge learned in assessment and anticipatory guidance skills. However, only 14% of primary care providers were applying fluoride varnish with 10% billing for this procedure. Barriers to application were time, available supplies, COVID protocols, lack of support staff, or not billing due to minimal reimbursement. Many primary care-trained PNPs were practicing in acute or subspecialty areas where prevention of ECC is not viewed as part of their focused visit. Pediatric nurse practitioners working in primary care demonstrated some clinical practice changes. However, areas for improvement are time to perform a risk assessment and application of fluoride varnish, access to these supplies, and standard billing and insurance reimbursement for these preventable services.

Development of an electronic medical record provider evaluation template for children with attention deficit hyperactivity disorder.

ABSTRACT: Attention deficit hyperactivity disorder (ADHD) is the most common neurobehavioral condition in children. Current guidelines recommend that Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM-V) criteria be met before diagnosing ADHD. However, 14-49% of providers are not documenting the use of DSM-V criteria in screening and diagnosis. The use of a standardized electronic health record (EHR) ADHD template is a potential option to assist providers with documenting the DSM-V criteria. The aim for this project was to provide a 1-hour educational in-service on the use of the DSM-V criteria, Vanderbilt rating scale, and a revised EHR ADHD template, and to assess provider use pre and post intervention. Results showed that few providers (n = 1; 2%) document using DSM-V criteria preintervention and post intervention with only a modest increase in template use (n = 3; 5%). However, there were statistical differences between provider type with advanced practice registered nurses and physician assistants screening more frequently using the EHR DSM-V ADHD template compared with physicians (p = .009). Future studies are needed to evaluate barriers to use, including practice preference, openness to change, and other factors that may affect provider workflow.

Perioperative Considerations for Pediatric Patients With Congenital Heart Disease Presenting for Noncardiac Procedures: A Scientific Statement From the American Heart Association.

Continuous advances in pediatric cardiology, surgery, and critical care have significantly improved survival rates for children and adults with congenital heart disease. Paradoxically, the resulting increase in longevity has expanded the prevalence of both repaired and unrepaired congenital heart disease and has escalated the need for diagnostic and interventional procedures. Because of this expansion in prevalence, anesthesiologists, pediatricians, and other health care professionals increasingly encounter patients with congenital heart disease or other pediatric cardiac diseases who are presenting for surgical treatment of unrelated, noncardiac disease. Patients with congenital heart disease are at high risk for mortality, complications, and reoperation after noncardiac procedures. Rigorous study of risk factors and outcomes has identified subsets of patients with minor, major, and severe congenital heart disease who may have higher-than-baseline risk when undergoing noncardiac procedures, and this has led to the development of risk prediction scores specific to this population. This scientific statement reviews contemporary data on risk from noncardiac procedures, focusing on pediatric patients with congenital heart disease and describing current knowledge on the subject. This scientific statement also addresses preoperative evaluation and testing, perioperative considerations, and postoperative care in this unique patient population and highlights relevant aspects of the pathophysiology of selected conditions that can influence perioperative care and patient management.

Vision-related quality of life compared to generic measures in retinoblastoma survivors.

PURPOSE: To (1) Compare vision-related quality of life (VRQOL) in adolescent and young adult (AYA) unilateral versus bilateral retinoblastoma (RB) survivors using a vision-targeted measure and a generic health-related quality of life (HRQOL) measure and (2) Assess associations among VRQOL and generic HRQOL domains and overall QOL and estimate associations of the VRQOL and HRQOL domains with overall QOL. METHODS: The National Institute for Health (NIH) Toolbox® VRQOL instrument, PROMIS®-29 Profile v 2.1, and a single-item QOL measure were administered in a cross-sectional study of 101 RB survivors. Reliability for multi-item scales was estimated. Product-moment and Spearman rank correlation coefficients and stepwise ordinary least squares were used to measure associations of other variables with overall QOL. RESULTS: Significantly worse VRQOL was reported by bilateral than unilateral RB survivors. Cronbach's alpha coefficients for all VRQOL scales ranged from 0.83 to 0.95. Medium to large correlations were found between all NIH Toolbox® VRQOL scales and the PROMIS®-29 measures. Depression and ability to participate in social roles and activities from the PROMIS®-29 Profile accounted for 38% of the variance in overall QOL with the psychosocial domain of the NIH Toolbox® VRQOL explaining 16% of the variance. CONCLUSION: VRQOL is impaired in bilateral RB survivors. VRQOL is associated substantially with the PROMIS-29 generic HRQOL measure but has significant unique associations with overall QOL. The NIH Toolbox® VRQOL measure provides important information about the vision-related effects on daily life of AYA RB survivors.

Health-Related Quality of Life in Adolescent and Young Adult Retinoblastoma Survivors.

Background: Retinoblastoma (RB) is a malignant intraocular tumor diagnosed in early childhood that requires extensive medical and surgical treatment at a young age. Health-related quality of life (HRQOL) is thought to be diminished due to visual impairment, facial deformities, and fear of recurrence or secondary cancer. However, few studies have identified variables associated with HRQOL among those with RB. Purpose: To compare HRQOL of adolescents and young adults (AYAs) with RB to matched controls and to identify predictors of HRQOL in RB survivors. Methods: Using a cross-sectional design, 198 AYAs (101 RBs and 97 controls) completed HRQOL (PROMIS®-29 profile) and psychosocial questionnaires (Rosenberg self-esteem scale, multidimensional scale of perceived social support, and Hollingshead index for socioeconomic status). Clinical variables (age at diagnosis, visual acuity, laterality, heredity, treatment regime, and anesthesia exposure) were extracted from the medical record. Correlates of HRQOL were estimated using linear regression models. Results: RB survivors reported similar HRQOL compared to controls. Physical function (p < .001), social support (p = .013), and self-esteem (p = .028) were lower in the RB group compared to controls. Visual acuity and self-esteem accounted for 52% of the variance in PROMIS physical health summary scores and self-esteem accounted for 38% of the variance in mental health summary scores. Conclusion: Despite deficits in physical function and self-esteem HRQOL in RB survivors was comparable to healthy counterparts. However, the majority of RB survivors in this study had normal visual acuity. Clinicians should explore ways to enhance self-esteem in RB survivors.

Caregiving for Interstage Infants: A Continuous Process of Compromise During the Pandemic.

Background: Infants born with single ventricle heart disease require in-home medicalized care during the interstage period (time between the first and second staged heart surgery). These caregivers rely on extended family, friends, and hired caretakers to provide respite time. However, the coronavirus pandemic removed these families' options due to stay-at-home and social distancing directives. We explored the caregivers' experiences during the interstage period, including impacts on their lifestyle, as they managed their infants' critical needs during the coronavirus disease 2019 pandemic. Method: In-person or telephonic interviews of 14 caregivers interviewed once or twice were conducted between November 2019 and July 2020. Constructivist Grounded Theory methodology guided both data collection and analysis for the inductive and abductive exploration of caregivers' experiences. Results: Data analysis led to the development of 2 concepts: Accepting and adapting to a restrictive home environment and Reconciling what is and what is yet to come. Refinement of the relationship between the 2 concepts led to the development of a theory grounded in the words and experiences of the participants called: A Continuous Process of Compromise. Conclusions: Our findings increase understanding of caregivers' experiences related to psychosocial and lifestyle impacts and the need for additional support during the interstage period.

Improved oral health knowledge in a primary care pediatric nurse practitioner program.

ABSTRACT: Pediatric nurse practitioners (PNPs) are a significant workforce in primary care and are uniquely positioned to improve oral health in children through ongoing surveillance in the well-child visit. The purpose of this study was to evaluate PNP student satisfaction and knowledge gained with the integration of the Strategic Partnership for Interprofessional Collaborative Education in Pediatric Dentistry (SPICE-PD) oral health education program into the first-year primary care curriculum. A descriptive, comparative design examined dental test scores across the pre-SPICE-PD (2013-2014; n = 26) and post-SPICE-PD (2015-2020; n = 55) cohorts. An electronic survey was completed (n = 47; 67%), and focus group (n = 12) audio-recordings were analyzed using Atlas.ti 8.0. Chi-square test and independent samples t-test were used to assess differences between groups. The SPICE-PD students reported improved knowledge and skill in clinical practice. Focus group themes were oral health education was beneficial, impact of coronavirus disease 2019, and suggestions for improvement. Mean dental test scores improved pre- and post-SPICE-PD (83 vs. 93; p < .001). The SPICE-PD oral health education improved knowledge and was highly satisfying for students. Pediatric nurse practitioners are ideally positioned to integrate oral health into primary care services, thereby improving access to care and ultimately reducing or mitigating early childhood caries. Evaluation of PNP postgraduation practices in the primary care setting is needed to assess whether improved knowledge results in practice change.

Developing a sense of self-reliance: caregivers of infants with single-ventricle heart disease during the interstage period.

BACKGROUND: Caring for infants after the first-stage palliative surgery for single-ventricle heart disease bring challenges beyond the usual parenting responsibilities. Current studies fail to capture the nuances of caregivers' experiences during the most critical "interstage" period between the first and second surgery. OBJECTIVES: To explore the perceptions of caregivers about their experiences while transitioning to caregiver roles, including the successes and challenges associated with caregiving during the interstage period. METHODS: Constructivist Grounded Theory methodology guided the collection and analysis of data from in person or telephonic interviews with caregivers after their infants underwent the first-stage palliative surgery for single-ventricle heart disease, and were sent to home for 2-4 months before returning for their second surgery. Symbolic interactionism informed data analyses and interpretation. RESULTS: Our sample included 14 parents, who were interviewed 1-2 times between November, 2019 and July, 2020. Most patients were mothers (71%), Latinx (64%), with household incomes <$30K (42%). Data analysis led to the development of a Grounded Theory called Developing a Sense of Self-Reliance with three categories: (1) Owning caregiving responsibilities despite grave fears, (2) Figuring out how "to make it work" in the interstage period, and (3) Gaining a sense of self-reliance. CONCLUSIONS: Parents transitioned to caregiver roles by developing a sense of self-reliance and, in the process, gained self-confidence and decision-making skills. Our study responded to the key research priority from the AHA Scientific Statement to address the knowledge gap in home monitoring for interstage infants through qualitative research design.

Reduced hippocampal volumes and memory deficits in adolescents with single ventricle heart disease.

INTRODUCTION: Adolescents with single ventricle congenital heart disease (SVHD) show functional deficits, particularly in memory and mood regulation. Hippocampi are key brain structures that regulate mood and memory; however, their tissue integrity in SVHD is unclear. Our study aim is to evaluate hippocampal volumes and their associations with memory, anxiety, and mood scores in adolescents with SVHD compared to healthy controls. METHODS: We collected brain magnetic resonance imaging data from 25 SVHD (age 15.9 ± 1.2 years; 15 male) and 38 controls (16.0 ± 1.1 years; 19 male) and assessed memory (Wide Range Assessment of Memory and Learning 2, WRAML2), anxiety (Beck Anxiety Inventory, BAI), and mood (Patient Health Questionnaire 9, PHQ-9) functions. Both left and right hippocampi were outlined and global volumes, as well as three-dimensional surfaces were compared between groups using ANCOVA and associations with cognitive and behavioral scores with partial correlations (covariates: age and total brain volume). RESULTS: The SVHD group showed significantly higher BAI (p = .001) and PHQ-9 (p < .001) scores, indicating anxiety and depression symptoms and significantly reduced WRAML2 scores (p < .001), suggesting memory deficits compared with controls. SVHD group had significantly reduced right global hippocampal volumes (p = .036) compared with controls, but not the left (p = .114). Right hippocampal volume reductions were localized in the CA1, CA4, subiculum, and dentate gyrus. Positive correlations emerged between WRAML2 scores and left (r = 0.32, p = .01) and right (r = 0.28, p = .03) hippocampal volumes, but BAI and PHQ-9 did not show significant correlations. CONCLUSION: Adolescents with SVHD show reduced hippocampal volumes, localized in several sites (CA1, CA4, subiculum, and dentate gyrus), which are associated with memory deficits. The findings indicate the need to explore ways to improve memory to optimize academic achievement and ability for self-care in the condition.

Optimism despite profound uncertainty: school and social relationships in adolescents with single ventricle heart disease.

BACKGROUND: Survivors of single ventricle heart disease must cope with the physical, neurodevelopmental, and psychosocial sequelae of their cardiac disease, which may also affect academic achievement and social relationships. The purpose of this study was to qualitatively examine the experiences of school and social relationships in adolescents with single ventricle heart disease. METHODS: A descriptive phenomenological methodology was employed, utilising semi-structured interviews. Demographic and clinical characteristics were obtained via chart review. RESULTS: Fourteen adolescents (aged 14 to 19 years) with single ventricle heart disease participated. Interviews ranged from 25 to 80 minutes in duration. Four themes emerged from the interviews, including "Don't assume": Pervasive ableism; "The elephant in the room": Uncertain future; "Everyone finds something to pick on": Bullying at school; "They know what I have been through": Social support. The overall essence generated from the data was "optimism despite profound uncertainty." CONCLUSIONS: Adolescents with single ventricle heart disease identified physical limitations and school challenges in the face of an uncertain health-related future. Despite physical and psychosocial limitations, most remained optimistic for the future and found activities that were congruent with their abilities. These experiences reflect "optimism despite profound uncertainty."

Interstage Home Monitoring for Infants With Single Ventricle Heart Disease: Education and Management: A Scientific Statement From the American Heart Association.

This scientific statement summarizes the current state of knowledge related to interstage home monitoring for infants with shunt-dependent single ventricle heart disease. Historically, the interstage period has been defined as the time of discharge from the initial palliative procedure to the time of second stage palliation. High mortality rates during the interstage period led to the implementation of in-home surveillance strategies to detect physiologic changes that may precede hemodynamic decompensation in interstage infants with single ventricle heart disease. Adoption of interstage home monitoring practices has been associated with significantly improved morbidity and mortality. This statement will review in-hospital readiness for discharge, caregiver support and education, healthcare teams and resources, surveillance strategies and practices, national quality improvement efforts, interstage outcomes, and future areas for research. The statement is directed toward pediatric cardiologists, primary care providers, subspecialists, advanced practice providers, nurses, and those caring for infants undergoing staged surgical palliation for single ventricle heart disease.

Caudate nuclei volume alterations and cognition and mood dysfunctions in adolescents with single ventricle heart disease.

Adolescents with single ventricle heart disease (SVHD) exhibit mood and cognitive deficits, which may result from injury to the basal ganglia structures, including the caudate nuclei. However, the integrity of the caudate in SVHD adolescents is unclear. Our aim was to examine the global and regional caudate volumes, and evaluate the relationships between caudate volumes and cognitive and mood scores in SVHD and healthy adolescents. We acquired two high-resolution T1-weighted images from 23 SVHD and 37 controls using a 3.0-Tesla MRI scanner, as well as assessed mood (Patient Health Questionnaire-9 [PHQ-9]; Beck Anxiety Inventory [BAI]) and cognition (Montreal Cognitive Assessment [MoCA]; Wide Range Assessment of Memory and Learning-2; General Memory Index [GMI]) functions. Both left and right caudate nuclei were outlined, which were then used to calculate and compare volumes between groups using ANCOVA (covariates: age, gender, and head-size), as well as perform 3D surface morphometry. Partial correlations (covariates: age, gender, and head-size) were used to examine associations between caudate volumes, cognition, and mood scores in SVHD and controls. SVHD subjects showed significantly higher PHQ-9 and BAI scores, indicating more depressive and anxiety symptoms, as well as reduced GMI scores, suggesting impaired cognition, compared to controls. SVHD patients showed significantly reduced caudate volumes (left, 3,198.8 ± 490.1 vs. 3,605.0 ± 480.4 mm3 , p < 0.004; right, 3,162.1 ± 475.4 vs. 3,504.8 ± 465.9 mm3 , p < 0.011) over controls, and changes were localized in the rostral, mid-dorsolateral, and caudal areas. Significant negative correlations emerged between caudate volumes with PHQ-9 and BAI scores and positive correlations with GMI and MoCA scores in SVHD and controls. SVHD adolescents show significantly reduced caudate volumes, especially in sites that have projections to regulate mood and cognition, which may result from developmental and/or hypoxia-/ischemia-induced processes.

The Bayley-III scale may underestimate neurodevelopmental disability after cardiac surgery in infants.

OBJECTIVES: Neurodevelopmental disability is the most common complication among congenital heart surgery survivors. The Bayley scales are standardized instruments to assess neurodevelopment. The most recent edition (Bayley Scales of Infant and Toddler Development 3rd Edition, Bayley-III) yields better-than-expected scores in typically developing and high-risk infants than the second edition (Bayley Scales of Infant Development 2nd Edition, BSID-II). We compared BSID-II and Bayley-III scores in infants undergoing cardiac surgery. METHODS: We evaluated 2198 infants who underwent operations with cardiopulmonary bypass between 1996 and 2009 at 26 institutions. We used propensity score matching to limit confounding by indication in a subset of patients (n = 705). RESULTS: Overall, unadjusted Bayley-III motor scores were higher than BSID-II Psychomotor Development Index scores (90.7 ± 17.2 vs 77.6 ± 18.8, P < 0.001), and unadjusted Bayley-III composite cognitive and language scores were higher than BSID-II Mental Development Index scores (92.0 ± 15.4 vs 88.2 ± 16.7, P < 0.001). In the propensity-matched analysis, Bayley-III motor scores were higher than BSID-II Psychomotor Development Index scores [absolute difference 14.1, 95% confidence interval (CI) 11.7-17.6; P < 0.001] and the Bayley-III classified fewer children as having severe [odds ratio (OR) 0.24; 95% CI 0.14-0.42] or mild-to-moderate impairment (OR 0.21; 95% CI 0.14-0.32). The composite of Bayley-III cognitive and language scores was higher than BSID-II Mental Development Index scores (absolute difference 4.0, 95% CI 1.4-6.7; P = 0.003), but there was no difference between Bayley editions in the proportion of children classified as having severe cognitive and language impairment. CONCLUSIONS: The Bayley-III yielded higher scores than the BSID-II and classified fewer children as severely impaired. The systematic bias towards higher scores with the Bayley-III precludes valid comparisons between early and contemporary cardiac surgery cohorts.

A Review of Literature on Health-Related Quality of Life of Retinoblastoma Survivors.

Background: Retinoblastoma is a malignant tumor of the eye that typically presents in early childhood and occurs in approximately 1 in 20,000 births. While active treatment of the tumor is typically completed in childhood, survivors often suffer from long-term effects from treatment including visual impairment, facial deformities, and fear of recurrence or secondary cancer. However, little is known how these long-term effects affect their health-related quality of life (HRQOL). Purpose: To review the literature on HRQOL in retinoblastoma survivors. Method: We searched three electronic databases from January 2005 to December 2018 for original research articles reporting on HRQOL or individual domains such as function, cognition, and psychosocial outcomes in retinoblastoma survivors. Results: A total of 59 articles were reviewed and 15 were identified as eligible. Five of the studies reported worse HRQOL in retinoblastoma survivors than controls or general population norms. Parent-proxy ratings were worse than survivors' self-reports. Conclusion: Our findings confirm the need for further HRQOL research to assess the factors influencing long-term outcomes associated with treatment in adolescent and young adult retinoblastoma survivors. By identifying any potential deficits in specific domains of HRQOL, early interventions might be developed to improve HRQOL in retinoblastoma survivors.