Nicola N Doherty

Determinants of neuropsychological and behavioural outcomes in early childhood survivors of congenital heart disease.

Aims: To evaluate the relative effect of cyanosis, surgical interventions and family processes on neuropsychological and behavioural outcomes in 4-year-old survivors of serious congenital heart disease (CHD). Methods: 90 children with a range of cyanotic and acyanotic conditions, who underwent either corrective or palliative surgery, completed a neuropsychological and behavioural evaluation. Families of participants were also profiled by evaluation of maternal mental health, worry, social support, parenting style and family functioning. Results: Compromised neuropsychological outcomes were associated with a combination of cyanotic conditions and open-heart surgery, but this was not exacerbated by having a complex, palliative, status. Both cyanotic and acyanotic conditions were associated with specific sensorimotor delays, regardless of method of the correction. Only children with complex conditions and palliative interventions seemed at risk of poor behavioural outcomes; indeed, children with cyanosis with complete repair showed favourable behavioural outcomes compared with controls. Multivariate analyses highlighted the sometimes greater relevance of family processes (eg parenting style, maternal mental health and worry), rather than disease or surgical factors, in predicting especially behavioural outcomes. Conclusions: The findings (1) suggest a more complex relationship between cyanosis, surgical methods of correction, neuropsychological and behavioural outcomes than previously charted, (2) highlight that family processes may be aetiologically more important than disease and surgical factors, and (3) indicate specific targets for secondary prevention programmes for this at-risk population.

A controlled trial of early interventions to promote maternal adjustment and development in infants born with severe congenital heart disease

Abstract Background Congenital heart disease can have a negative impact on both infant development and maternal adjustment. This study considered the impact of a new programme of early psychosocial interventions on such outcomes, following the birth of a child with severe congenital heart disease. Methods Seventy infants and their mothers were assigned to an intervention or control group based on order of presentation to the unit. Interventions aimed at bolstering mother-infant transactions, through psychoeducation, parent skills training and narrative therapy techniques were implemented. Results Clinically and statistically significant gains were observed at 6-month follow-up on the mental (but not the psychomotor) scale of the Bayleys-II. Positive gains were also manifested on feeding practices, maternal anxiety, worry and appraisal of their situation. Conclusions A programme of generalizable psychosocial interventions is shown to have a positive impact on the infant with severe congenital heart disease and the mother.

Predictors of psychological functioning in mothers and fathers of infants born with severe congenital heart disease

This study examined mental health and coping styles in both mothers and fathers of infants born with a severe congenital heart defect. Factors associated with mental health outcomes were elucidated. Parents of 70 infants, recently born with a severe congenital heart defect, completed questionnaires which examined psychological functioning and coping strategies. Disease, surgical and psychosocial factors were examined for their significance in predicting psychological functioning. Findings indicated elevated levels of clinically significant psychological distress in mothers, compared to fathers, and differences between parents in coping styles. Regression analyses suggested that the extent of distress in both parents was not primarily predicted by illness or demographic factors. Rather, certain coping styles, knowledge, subjective worry and family functioning emerged as significant predictive variables. Implications for early intervention are discussed.

Home videoconferencing for patients with severe congential heart disease following discharge.

BACKGROUND Centralization of pediatric cardiology services into a small number of tertiary centers and the particular stress that accompanies diagnosis and surgical management of severe congenital heart disease (CHD) renders psychological support for families and clinical monitoring of patients following discharge increasingly important. Telemedicine has an increasing role in clinical and academic medicine. Improvements in quality and reliability of videoconferencing systems have allowed this to become a useful diagnostic tool. OBJECTIVE This study aimed to assess the benefits of home monitoring by videoconferencing compared with contacting by telephone only, in terms of decreasing anxiety levels and clinical monitoring in the postdischarge period. METHODS We performed a prospective, controlled study of children with a recent diagnosis of severe CHD and those recovering from palliative or corrective surgery for severe CHD. We used standardized anxiety scores to assess anxiety after discharge in families followed up by home videoconferencing or telephone calls and assessed the clinical information available through videoconferencing or telephone calls by structured questionnaires. RESULTS Videoconferencing decreased anxiety levels compared with telephone calls (P < .05). Improved clinical information was available in the videoconferencing group, resulting in more appropriate and timely hospital attendance. CONCLUSION Videoconferencing is acceptable to parents and physicians and provides a more effective form of follow-up in terms of clinical observation and parental anxiety levels.

A sibling-controlled, prospective study of outcomes at home and school in children with severe congenital heart disease

OBJECTIVES The objectives of this study were to compare behaviour problems and competencies, at home and school, in 7-year-old children with congenital heart disease with a sibling control group, to examine the prospective determinants of outcome from infancy, and to explore whether any gains were maintained in our sub-group of children who had participated in a previous trial of psychological interventions in infancy. METHODS A total of 40 children who had undergone surgery to correct or palliate a significant congenital heart defect in infancy were compared (Child Behavior Checklist) with a nearest-age sibling control group (18 participants). Comparisons were made between sub-groups of children and families who had and had not participated in an early intervention trial. RESULTS Problems with attention, thought and social problems, and limitations in activity and school competencies, were found in comparison with siblings. Teacher reports were consistent with parents, although problems were of a lower magnitude. Disease, surgical, and neurodevelopmental functioning in infancy were related to competence outcomes but not behaviour problems. The latter were mediated by family and maternal mental health profiles from infancy. Limited, but encouraging, gains were maintained in the sub-group that had participated in the early intervention programme. CONCLUSIONS The present study is strengthened by its longitudinal design, use of teacher informants, and sibling control group. The patterns of problems and limitations discerned, and differential determinants thereof, have clear implications for interventions. We consider these in the light of our previously reported intervention trial with this sample and current outcomes at the 7-year follow-up.

A comparison of ISDN and home broadband transmission in delivering home support for infants with major congenital heart disease

In 2003, the paediatric cardiology department at the Royal Belfast Hospital for Sick Children (RBHSC) piloted home support for infants with major congenital heart disease based on videoconference consultations. The videoconferencing used an ISDN 6 link (3 ISDN lines aggregated to provide a bandwidth of 384 kbit/s) installed in each family’s home. Following the success of this pilot trial, a randomised controlled trial of the home support programme was initiated in 2005 using ISDN 6. During the 2000s, Internet provision in the community accelerated, both in terms of availability and increasing bandwidths. We therefore began pilot tests using an ADSL connection, ultimately switching from ISDN to ADSL transmission for the telecardiology work. The present study compared the quality of remote consultations achieved with the two modalities.

The Congenital Heart Disease Intervention Program (CHIP) and Interventions in Infancy

Abstract Based on the evidence, presented in Section 2 of this book, that neurodevelopmental and behavioral outcomes following congenital heart disease (CHD) are significantly determined by parental and family factors, this chapter introduces a family-focused early intervention program, the first in its application across the world. The principles and general interventions underlying the Congenital Heart disease Intervention Program (CHIP) are outlined followed by specific focus on CHIP–Infant, the arm of the study aimed at parents of infants newly diagnosed with significant CHD. Elements of the intervention aimed at improving parent–infant transactions through tailored psycho-education, narrative therapy, problem-solving therapy, and specific coaching in strategies to improve neurodevelopment and feeding are described. The program is evaluated in a controlled trial with the intervention group manifesting significant gains in terms of infant neurodevelopment, feeding, maternal mental health, and family functioning, in comparison to a no treatment, control, group.

Survey of paediatricians' opinions on a regional paediatric telecardiology service.

The aim of this study is to evaluate consultant general paediatricians’ opinions of a UK paediatric telecardiology service.