Hypoplastic left heart syndrome: Valuing the survival

Williams, Deborah; Gelijns, Annetine C.; Moskowitz, Alan J.; Weinberg, Alan; Ng, Judy; Crawford, Emily; Hayes, Constance J.; Quaegebeur, Jan M.

doi:10.1016/s0022-5223(00)70007-9

Cited by 97 publications

(65 citation statements)

References 21 publications

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“…164 The long-term effects of operated HLH have not yet been fully explored as there are no large cohorts of long-term survivors, but preschool development has been reported to be slower in these children. 170,172,173,178,179 …”

Section: Neurological Outcomesmentioning

confidence: 99%

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

Knowles¹,

Griebsch²,

Dezateux

et al. 2005

Health Technol Assess

212

143

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Non-UK purchasers will have to pay a small fee for post and packing. For European countries the cost is £2 per monograph and for the rest of the world £3 per monograph.You can order HTA monographs from our Despatch Agents:-fax (with credit card or official purchase order) -post (with credit card or official purchase order or cheque) -phone during office hours (credit card only).Additionally the HTA website allows you either to pay securely by credit card or to print out your order and then post or fax it. NHS libraries can subscribe free of charge. Public libraries can subscribe at a very reduced cost of £100 for each volume (normally comprising 30-40 titles). The commercial subscription rate is £300 per volume. Please see our website for details. Subscriptions can only be purchased for the current or forthcoming volume. Contact details are as follows: Payment methods Paying by chequeIf you pay by cheque, the cheque must be in pounds sterling, made payable to Direct Mail Works Ltd and drawn on a bank with a UK address. Paying by credit cardThe following cards are accepted by phone, fax, post or via the website ordering pages: Delta, Eurocard, Mastercard, Solo, Switch and Visa. We advise against sending credit card details in a plain email. Paying by official purchase orderYou can post or fax these, but they must be from public bodies (i.e. NHS or universities) within the UK. We cannot at present accept purchase orders from commercial companies or from outside the UK. How do I get a copy of HTA on CD?Please use the form on the HTA website (www.hta.ac.uk/htacd.htm). Or contact Direct Mail Works (see contact details above) by email, post, fax or phone. HTA on CD is currently free of charge worldwide.The website also provides information about the HTA Programme and lists the membership of the various committees. HTANewborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis NHS R&D HTA ProgrammeT he research findings from the NHS R&D Health Technology Assessment (HTA) Programme directly influence key decision-making bodies such as the National Institute for Health and Clinical Excellence (NICE) and the National Screening Committee (NSC) who rely on HTA outputs to help raise standards of care. HTA findings also help to improve the quality of the service in the NHS indirectly in that they form a key component of the 'National Knowledge Service' that is being developed to improve the evidence of clinical practice throughout the NHS.The HTA Programme was set up in 1993. Its role is to ensure that high-quality research information on the costs, effectiveness and broader impact of health technologies is produced in the most efficient way for those who use, manage and provide care in the NHS. 'Health technologies' are broadly defined to include all interventions used to promote health, prevent and treat disease, and improve rehabilitation and long-term care, rather than settings of care.The HTA Programme commissions research only on topics where it has identified key gaps in the evi...

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Section: Neurological Outcomesmentioning

confidence: 99%

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

Knowles¹,

Griebsch²,

Dezateux

et al. 2005

Health Technol Assess

212

143

View full text Add to dashboard Cite

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“…The hypoplastic left heart syndrome (HLHS) group seemed to have more neurodevelopmental deficits compared with other SV defects. [4][5]7,8,10 In addition, the patients with HLHS who had deep hypothermic circulatory arrest during their first-stage surgical palliation were noted to have worse outcomes. 5,7,8 Mahle et al 4 evaluated outcomes in school-aged adolescents with HLHS and identified IQ scores within normal range with mean performance of the group lower than that of the general population.…”

Section: Neurodevelopmental and Cognitive Outcomesmentioning

confidence: 99%

“…Most studies examine all subtypes of CHD, including the population with SV CHD, who usually represent a small portion of the study sample. In addition, this makes it difficult to draw conclusions for 10 parent proxy reports in children with HLHS showed that physical and psychologic health was lower compared with the healthy population. However, selfreported HRQOL studies demonstrated a wide variation in responses related to severity of the study population.…”

Section: Hrqol and Qol Outcomesmentioning

confidence: 99%

“…10,32 Contradictory results are identified from parent proxy reports and studies from the European population with SV CHD. [32][33][34] This further identifies the need for HRQOL studies in the U.S. population with SV CHD.…”

Section: Hrqol and Qol Outcomesmentioning

confidence: 99%

“…Past research in patients with SV CHD has focused on functional and neurodevelopmental outcomes producing a growing body of literature with documented deficits that seem to be multifactoral. [4][5][6][7][8][9][10] However, little is known about the other determinants of HRQOL such as social well-being and function. Moreover, earlier studies in this population had identified the perceptions of family members rather than the actual self-perceived HRQOL of the individual, who may not have been of sufficient age to participate in the evaluation.…”

mentioning

confidence: 99%

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Health-related quality of life: A closer look at related research in patients who have undergone the Fontan operation over the last decade

et al. 2007

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Health-related quality of life: A closer look at related research in patients who have undergone the Fontan operation over the last decade The advancements in surgical technique and perioperative care have significantly improved the survival of children with single ventricle (SV) congenital heart disease (CHD) over the past decade. The population who have undergone the Fontan operation are growing into adulthood and facing many unique challenges. Past research has focused on functional and neurodevelopmental outcomes with inferences made to health-related quality of life (HRQOL). With the population who have undergone the Fontan operation surviving into adulthood, little research has been directed toward the self-report of HRQOL in adolescents and young adults after surgical palliation. Questions still remain on how these patients will transition into adulthood and whether they will live normal productive lives. This article reviews the literature related to HRQOL in the SV subgroup of CHD. In addition, an overview of newly developed disease-specific HRQOL instruments is presented as well as limitations and future research in HRQOL of the SV Fontan population.

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How Pediatricians Counsel Parents When No "Best-Choice" Management Exists

Kon¹,

Ackerson²,

Lo³

2004

Arch Pediatr Adolesc Med

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Physician recommendations to parents are poorly associated with their estimates of outcomes, and some physicians recommend the treatment preferred at their own institution over other options even when they predict better outcomes from another approach. Further, many physicians do not disclose all reasonable management options to parents of infants with HLHS. These findings raise doubts as to whether parents are given adequate information to make truly informed decisions.

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Hypoplastic left heart syndrome: Valuing the survival

Abstract: A prospective, large-scale study of the comprehensive outcomes of staged repair and transplantation is needed. This study will need to address the longer-term developmental and quality-of-life outcomes, as well as the long-term cost effectiveness of these procedures.

Cited by 97 publications

References 21 publications

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

Health-related quality of life: A closer look at related research in patients who have undergone the Fontan operation over the last decade

How Pediatricians Counsel Parents When No "Best-Choice" Management Exists

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