National Congenital Heart Disease Audits

Congenital Heart Disease – 2020 summary report

HQIP 10 December 2020

• The audit focuses on monitoring activity levels and outcomes following congenital cardiovascular procedures at any age, and for patients under 16 years of age with acquired heart disease who undergo interventions, as well as the success of antenatal diagnostic screening. 
• The audit collected and analysed data from all centres undertaking congenital cardiac surgery, interventional procedures (including electrophysiology) and antenatal detection in the UK and Republic of Ireland between 2016 to 2019.

National Congenital Heart Disease Audit 2013 - 2016
HQIP 8 March 2018

• A summary of all paediatric and congenital heart surgery, electrophysiology and transcatheter procedures undertaken in the UK. The audit focuses on monitoring activity levels and outcomes following cardiovascular procedures, as well as the success of antenatal diagnostic screening.

NCARDRS congenital anomaly statistics: annual data

NCARDRS congenital anomaly statistics
PHE updated 12 August 2020

• The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) reports  give estimates of the national prevalence of congenital anomalies including structural, chromosomal and genetic anomalies.
• These reports present data collected since 2014.

The organisation of Oral and Maxillofacial services

The organisation of Oral and Maxillofacial services: Developing integrated networks of care
GIRFT and the British Association of Oral and Maxillofacial Surgeons (BAOMS) July 2020

• The advice pack supports the implementation of recommendations in the GIRFT national report on oral and maxillofacial surgery, published in November 2018, to improve efficiency by organising care through networks. These networks offer a range of benefits such as leading to more equitable access to treatment for patients and better outcomes, as well as making more effective use of clinicians’ time and skills.

Specialised complex surgery for urinary incontinence and vaginal and uterine prolapse (16 years and above)

Service specification: Specialised complex surgery for urinary incontinence and vaginal and uterine prolapse (16 years and above)
NHS England 27 February 2020

• This service specification describes specialised complex surgery services for urinary incontinence and vaginal and uterine prolapse.

Disease Profile in England: Incidence, mortality, stage and survival for ovary, fallopian tube and primary peritoneal carcinomas

Disease Profile in England: Incidence, mortality, stage and survival for ovary, fallopian tube and primary peritoneal carcinomas
NCRAS January 2020

• The first report from the Ovarian Cancer Audit Feasibility Pilot and provides a detailed insight into the status of ovarian cancer in England including details of disease incidence, mortality and survival.

Paediatric critical care and surgery in children review: Summary report

Paediatric critical care and surgery in children review: Summary report
NHS England 5 November 2019

• The aim of the review has been to identify an optimal model of care for providing sustainable, high quality, responsive Paediatric critical care (PCC) and surgery in children (SIC) services. 
• This document is the final report summarising the review. NHS England will now undertake the formal commissioning of these services and has developed guidance to support the development and running of PCC and SIC operational delivery networks, which is available through the Future NHS Collaboration Platform. [Permission required]

Association of early postnatal transfer and birth outside a tertiary hospital with mortality and severe brain injury in extremely preterm infants

Association of early postnatal transfer and birth outside a tertiary hospital with mortality and severe brain injury in extremely preterm infants: observational cohort study with propensity score matching
BMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l5678 (Published 16 October 2019)

• An observational study of neonatal care services found that in a cohort of extremely preterm infants born at less than 28 gestational weeks, birth in a non-tertiary hospital and transfer within 48 hours are associated with poor outcomes when compared with birth in a tertiary setting.

Abstract:

Complex Gynaecology: Congenital Gynaecological Anomalies

Complex Gynaecology: Congenital Gynaecological Anomalies (Children of 13 years and above and Adults)
NHS England 23 July 2019

• This service specification covers the provision of specialised, multi-disciplinary team gynaecological management, including surgery in some cases, for girls from 13 years of age and women with rare, congenital anomalies of the female genital tract.

Association of quality of paediatric epilepsy care with mortality and unplanned hospital admissions among children and young people with epilepsy in England

Association of quality of paediatric epilepsy care with mortality and unplanned hospital admissions among children and young people with epilepsy in England: a national longitudinal data linkage study
The Lancet Child & Adolescent Health 4 July 2019 DOI: https://doi.org/10.1016/S2352-4642(19)30201-9

• An investigation into the association between quality of care quality and outcomes among children and young people with epilepsies in England concludes that 
• among adolescents with epilepsy, greater involvement of tertiary specialists in paediatric care is associated with decreased all-cause mortality in the period after transition to adult services. 
• Reduced access to an epilepsy specialist nurse was associated with an increase in paediatric epilepsy admissions.
• Data:  Epilepsy12 national clinical audit, death registrations from the UK Office for National Statistics and data for unplanned hospital admissions from Hospital Episode Statistics.
• Nuffield Trust blog: Invest early: how to improve the health of young adults with epilepsy

Healthcare Standards for Children and Young People in Secure Settings

Healthcare Standards for Children and Young People in Secure Settings
Royal College Paediatrics and Child Health, updated June 2019

• The standards are intended to be a tool and resource for healthcare professionals, service planners and providers, governors/directors/managers and regulators to help plan, deliver and quality assure children’s health services in secure settings.

Robot‐assisted surgery in gynaecology

Robot‐assisted surgery in gynaecology
Cochrane Systematic Review 15 April 2019, DOI 10.1002/14651858.CD011422.pub2

• A systematic review of the literature concludes that evidence on the effectiveness and safety of robot‐assisted surgery (RAS) compared with conventional laparoscopic surgery (CLS) for non‐malignant disease (hysterectomy and sacrocolpopexy) is of low certainty but suggests that surgical complication rates might be comparable. Evidence on the effectiveness and safety of RAS compared with CLS or open surgery for malignant disease is more uncertain because survival data are lacking. 
• RAS is an operator‐dependent expensive technology; therefore evaluating the safety of this technology independently will present challenges.

Cancer in Children, Teens and Young Adults - high risk patients

Medical & Surgical Review Programme: Cancer in Children, Teens and Young Adults Report
HQIP 13 December 2018

• Cancer outcomes in children and young people have improved dramatically over the last few decades with over 80% of those diagnosed now being cured of their disease. This report deliberately focuses on a sample of patients who were a high-risk group who died or who had an unexpected admission to intensive care. 
• One of the recommendations is that the audit and quality improvement methods, with action plans, are essential for on-going improvement but require access to data eg prescribing, which are not always available.

Sensory Rooms for Pediatric Patients with Neurocognitive Disorders

Sensory Rooms for Pediatric Patients with Neurocognitive Disorders: Clinical Effectiveness and Guidelines
Canadian Agency for Drugs and Technologies in Health, 12 June 2018

• No literature was identified regarding the clinical effectiveness of sensory rooms for paediatric patients with neurocognitive disorders. Additionally, no evidence-based guidelines were identified regarding the use of sensory rooms or environments for paediatric patients with neurocognitive disorders.

Quality of care provided to patients aged 0-25 yrs with chronic neurodisability

Each and Every Need 2018: A review of the quality of care provided to patients aged 0-25 years old with chronic neurodisability, using the cerebral palsies as examples of chronic neurodisabling conditions
National Confidential Enquiry into Patient Outcome and Death, 8 March 2018

• Using organisational surveys, patient and carer surveys, case note reviews, and routine national datasets, this study reviews the quality of care provided to children and young people with a chronic neurodisability (using the cerebral palsies as exemplar conditions), examines the interface between care settings; and assesses the transition of care from paediatric to adult services.

Pulse oximetry screening for critical congenital heart defects

Pulse oximetry screening for critical congenital heart defects
Cochrane Database of Systematic Reviews 1 March 2018, Issue 3. Art. No.: CD011912.

• A review of the evidence on the accuracy of pulse oximetry for detection of critical congenital heart defects (CCHDs) in asymptomatic newborn infants (21 studies) found that for every 10,000 apparently healthy newborn infants screened, around six of them will have CCHD. The pulse oximetry test will correctly identify five of these newborn infants with CCHD (but will miss one case). 

Effectiveness of Family Integrated Care in neonatal intensive care units on infant and parent outcomes

Effectiveness of Family Integrated Care in neonatal intensive care units on infant and parent outcomes: a multicentre, multinational, cluster-randomised controlled trial
Lancet Child and Adolescent Health 7 February 2018 DOI: https://doi.org/10.1016/S2352-4642(18)30039-7

• The Family Integrated Care (FICare) programme is a pragmatic approaches to enable parents to become primary caregivers in the neonatal intensive care unit (NICU). In this multicentre RCT across 26 tertiary NICUs in Canada, Australia, and New Zealand parents were present for at least 6 h a day, attend educational sessions, and actively care for their infant. 
• FICare was found to significantly improve infant weight gain, decrease parent stress and anxiety, and increase high-frequency exclusive breastmilk feeding at discharge. 
• There were no significant differences between groups in the rates of the secondary outcomes of mortality, major morbidity, duration of oxygen therapy, and duration of hospital stay.