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  • 1
    Online Resource
    Online Resource
    A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease
    Cambridge University Press (CUP) ; 2018
    In:  Cardiology in the Young Vol. 28, No. 4 ( 2018-04), p. 561-570
    Details
    In: Cardiology in the Young, Cambridge University Press (CUP), Vol. 28, No. 4 ( 2018-04), p. 561-570
    Abstract: Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge. Infants were randomised to receive early palliative care – structured evaluation, psychosocial/spiritual, and communication support before surgery – or standard care. Among 56 eligible mothers, 40 enrolled and completed baseline surveys; 38 neonates were randomised, 18 early palliative care and 20 standard care; and 34 postnatal surveys were completed. Baseline Beck Depression Inventory-II and State-Trait Anxiety Index scores exceeded normal pregnant sample scores (mean 13.76±8.46 versus 7.0±5.0 and 46.34±12.59 versus 29.8±6.35, respectively; p=0.0001); there were no significant differences between study groups. The early palliative care group had a decrease in prenatal to postnatal State-Trait Anxiety Index scores (−7.6 versus 0.3 in standard care, p=0.02), higher postnatal Brief Cope Inventory positive reframing scores (p=0.03), and a positive change in PedsQL Family Impact Module communication and family relationships scores (effect size 0.46 and 0.41, respectively). In conclusion, these data show that mothers of infants with single-ventricle disease experience significant depression and anxiety prenatally. Early palliative care resulted in decreased maternal anxiety, improved maternal positive reframing, and improved communication and family relationships.
    Type of Medium: Online Resource
    ISSN: 1047-9511 , 1467-1107
    URL: Article
    DOI: 10.1017/S1047951117002761
    Language: English
    Publisher: Cambridge University Press (CUP)
    Publication Date: 2018
    detail.hit.zdb_id: 2060876-7
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  • 2
    Online Resource
    Online Resource
    Abstract 12926: Transition Readiness Assessment in Adolescents and Young Adults With Heart Disease: Can We Improve the Outcome?
    Ovid Technologies (Wolters Kluwer Health) ; 2014
    In:  Circulation Vol. 130, No. suppl_2 ( 2014-11-25)
    Details
    In: Circulation, Ovid Technologies (Wolters Kluwer Health), Vol. 130, No. suppl_2 ( 2014-11-25)
    Abstract: Objective: Transition is defined as “the process by which adolescents and young adults with chronic childhood illnesses are prepared to take charge of their lives and their health in adulthood”. We previously reported common knowledge deficits and lack of transition readiness (TR) in 13-25 year olds with congenital or acquired heart disease. The aims of this study were to re-evaluate TR in these patients at follow-up (F/U) and to examine the relationship between changes in TR and quality of life (QOL). Methods: Patients (n=106) completed the TR Assessment and Pediatric Quality of Life Inventory (PedsQL) utilizing an e-tablet, web-based format at a routine F/U clinic visit. Changes from initial to F/U scores were evaluated. Results: Median patient age was 18.7 yrs at a median F/U time of 1.02 yrs. Average perceived knowledge deficit score (% of items with no knowledge) at F/U was 18.0 ± 15.2%, decreased from 24.7 ± 16.5%, p 〈 .0001. On a 100-point scale, the mean score for self-efficacy increased from 71.4 ± 17.0 to 76.7 ± 18.2 (p=.004) and for self-management increased from 47.9 ± 18.4 to 52.0 ± 20.7 (p=.0004). While physical QOL did not change, the mean psychosocial QOL score increased significantly from 80.2 ± 13.3 to 82.5 ± 12.0, p=.02. A decrease in knowledge deficit score at F/U was significantly associated with an increased psychosocial QOL score, p=.03. An increase in self-efficacy score was associated with an increase in psychosocial QOL score (p=.04), especially social QOL (p=.02). Among patients who reported receiving specific information after initial TR assessment, knowledge deficits decreased related to medication (p=.002), symptoms to call for (p=.02), how to contact heart doctor (p=.02), and health insurance (p=.10). Self-efficacy scores improved in patients reporting receipt of information regarding how to contact the heart doctor (p=.06) and how to communicate with healthcare team (p=.05). Conclusion: While deficits in knowledge and self-management skills persist, TR assessment and recognition of deficits can improve transition readiness with improved psychosocial QOL. Routine TR assessment is important to identify transition needs. Further studies are needed to examine the relationship between TR and outcomes in young adults with heart disease.
    Type of Medium: Online Resource
    ISSN: 0009-7322 , 1524-4539
    URL: Article
    DOI: 10.1161/circ.130.suppl_2.12926
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2014
    detail.hit.zdb_id: 1466401-X
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  • 3
    Online Resource
    Online Resource
    Infant Motor Skills After a Cardiac Operation: The Need for Developmental Monitoring and Care
    Elsevier BV ; 2017
    In:  The Annals of Thoracic Surgery Vol. 104, No. 2 ( 2017-08), p. 681-686
    Details
    In: The Annals of Thoracic Surgery, Elsevier BV, Vol. 104, No. 2 ( 2017-08), p. 681-686
    Type of Medium: Online Resource
    ISSN: 0003-4975
    URL: Article
    DOI: 10.1016/j.athoracsur.2016.12.032
    RVK:
    XA 23980
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2017
    detail.hit.zdb_id: 1499869-5
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  • 4
    Online Resource
    Online Resource
    Assessment of Transition Readiness in Adolescents and Young Adults with Heart Disease
    Elsevier BV ; 2015
    In:  The Journal of Pediatrics Vol. 167, No. 6 ( 2015-12), p. 1233-1238
    Details
    In: The Journal of Pediatrics, Elsevier BV, Vol. 167, No. 6 ( 2015-12), p. 1233-1238
    Type of Medium: Online Resource
    ISSN: 0022-3476
    URL: Article
    DOI: 10.1016/j.jpeds.2015.07.043
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2015
    detail.hit.zdb_id: 2005245-5
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  • 5
    Online Resource
    Online Resource
    Prevalence and risk factors associated with non-attendance in neurodevelopmental follow-up clinic among infants with CHD
    Cambridge University Press (CUP) ; 2018
    In:  Cardiology in the Young Vol. 28, No. 4 ( 2018-04), p. 554-560
    Details
    In: Cardiology in the Young, Cambridge University Press (CUP), Vol. 28, No. 4 ( 2018-04), p. 554-560
    Abstract: Neurodevelopmental impairment is increasingly recognised as a potentially disabling outcome of CHD and formal evaluation is recommended for high-risk patients. However, data are lacking regarding the proportion of eligible children who actually receive neurodevelopmental evaluation, and barriers to follow-up are unclear. We examined the prevalence and risk factors associated with failure to attend neurodevelopmental follow-up clinic after infant cardiac surgery. Methods Survivors of infant ( 〈 1 year) cardiac surgery at our institution (4/2011-3/2014) were included. Socio-demographic and clinical characteristics were evaluated in neurodevelopmental clinic attendees and non-attendees in univariate and multivariable analyses. Results A total of 552 patients were included; median age at surgery was 2.4 months, 15% were premature, and 80% had moderate–severe CHD. Only 17% returned for neurodevelopmental evaluation, with a median age of 12.4 months. In univariate analysis, non-attendees were older at surgery, had lower surgical complexity, fewer non-cardiac anomalies, shorter hospital stay, and lived farther from the surgical center. Non-attendee families had lower income, and fewer were college graduates or had private insurance. In multivariable analysis, lack of private insurance remained independently associated with non-attendance (adjusted odds ratio 1.85, p=0.01), with a trend towards significance for distance from surgical center (adjusted odds ratio 2.86, p=0.054 for ⩾200 miles). Conclusions The majority of infants with CHD at high risk for neurodevelopmental dysfunction evaluated in this study are not receiving important neurodevelopmental evaluation. Efforts to remove financial/insurance barriers, increase access to neurodevelopmental clinics, and better delineate other barriers to receipt of neurodevelopmental evaluation are needed.
    Type of Medium: Online Resource
    ISSN: 1047-9511 , 1467-1107
    URL: Article
    DOI: 10.1017/S1047951117002748
    Language: English
    Publisher: Cambridge University Press (CUP)
    Publication Date: 2018
    detail.hit.zdb_id: 2060876-7
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  • 6
    Online Resource
    Online Resource
    Site of interstage outpatient care and growth after the Norwood operation
    Cambridge University Press (CUP) ; 2015
    In:  Cardiology in the Young Vol. 25, No. 7 ( 2015-10), p. 1340-1347
    Details
    In: Cardiology in the Young, Cambridge University Press (CUP), Vol. 25, No. 7 ( 2015-10), p. 1340-1347
    Abstract: Recent efforts have focused on optimising interstage outcomes, including growth, for infants following the Norwood operation. The impact of the site of interstage care remains unclear, and it has been hypothesised that care at the surgical site may be beneficial due to greater access to resources such as nutritional support. This study evaluated the relationship between site of interstage care and weight gain in a large multicentre cohort. Methods Infants enrolled in the National Paediatric Cardiology Quality Improvement Collaborative (2008–2013) surviving up to Stage 2 were included. Change in weight-for-age z-score between Norwood discharge and Stage 2 admission was compared in those receiving care at the surgical versus non-surgical site. Results Of the 487 interstage survivors, 60% received all care at the surgical site, and 40% received care at a non-surgical site. There was no significant difference between groups in change in weight-for-age z-score: +0.36±0.96 for the surgical site group versus +0.46±1.02 for the non-surgical site group, p=0.3. Results were unchanged in multivariable analysis adjusting for differences in important baseline characteristics, duration of interstage, and home surveillance strategy. The proportion of all patients with weight-for-age z-score 〈 −2 decreased from 40% at Norwood discharge to 29% at Stage 2, with no significant difference in change between the two groups (p=0.1). Conclusions The site of interstage care was not associated with weight gain during the interstage period. Nearly one-third of patients overall had a weight-for-age z-score 〈 −2 at Stage 2. Further study is required to identify methods to optimise weight gain in these patients.
    Type of Medium: Online Resource
    ISSN: 1047-9511 , 1467-1107
    URL: Article
    DOI: 10.1017/S1047951114002480
    Language: English
    Publisher: Cambridge University Press (CUP)
    Publication Date: 2015
    detail.hit.zdb_id: 2060876-7
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  • 7
    Online Resource
    Online Resource
    IMPACT OF EARLY PALLIATIVE CARE INTERVENTION ON MATERNAL STRESS IN MOTHERS OF INFANTS PRENATALLY DIAGNOSED WITH SINGLE VENTRICLE HEART DISEASE: A RANDOMIZED CLINICAL TRIAL
    Elsevier BV ; 2016
    In:  Journal of the American College of Cardiology Vol. 67, No. 13 ( 2016-04), p. 920-
    Details
    In: Journal of the American College of Cardiology, Elsevier BV, Vol. 67, No. 13 ( 2016-04), p. 920-
    Type of Medium: Online Resource
    ISSN: 0735-1097
    URL: Article
    DOI: 10.1016/S0735-1097(16)30921-4
    RVK:
    XA 17760
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2016
    detail.hit.zdb_id: 1468327-1
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