Care of extremely premature infants
A guideline for the care of children born before 28 full weeks of pregnancy have passed
The Swedish National Board of Health and Welfare
You are free to quote The Swedish National Board of Health and Welfare’s texts if you state the source, in training material at cost price for example, but you may not use the texts in commercial contexts. The Swedish National Board of Health and Welfare has the exclusive right to determine the way in which this work may be used in accordance with the Law (1960:729) on the copyright of literary and artistic works (the Copyright Act). Images, photographs and illustrations are also protected by the copyright and you must have the author’s permission to use them.
ISBN 978-91-7555-206-4 Article number 2014-9-10
Published September 2014
Foreword
The Swedish National Board of Health and Welfare has drawn up a guideline for the care of extremely premature infants, i.e. children who are born before 28 full weeks of pregnancy have passed. The guideline is aimed at care providers and operations managers who are responsible for neonatal care for the purpose of supporting the best way of caring for all extremely premature infants.
The Swedish National Board of Health and Welfare sent a questionnaire to representatives of neonatal units in Sweden in which they could describe which areas were important to discuss at national level. Based on the questionnaire responses received, The Swedish National Board of Health and Welfare arranged a hearing for neonatology directors in Sweden The purpose of the meeting was to discuss the relevant problem areas within the care of newborns. Representatives of The Swedish National Board of Health and Welfare and scientific committees in paediatric nursing, obstetrics, paediatric anaesthesiology and intensive care also participated in the hearing. The content of the guideline has been designed to suit the areas that the profession identified as important and where the need for national recommendations is at its greatest.
In October 2013 a referral edition was sent to the county councils, parental organisations and representatives of the profession. The guideline has been revised on the basis of the points of views received.
Several experts in neonatology have taken part in the work with the guideline. The experts have worked in various groups which have been led by Lars Björklund, Mats Eriksson, Lena Hellström Westas, Stellan Håkansson, Mikael Norman and Staffan Polberger. The project managers at The Swedish National Board of Health and Welfare were Michael Soop, Andor Wagner, Charlotte Fagerstedt and Eleonora Björkman.
Lars-Erik Holm Director General
Contents
Foreword...... 3
Summary...... 7
Introduction...... 8
Purpose and target group...... 8
The content of the guideline...... 9
Best available knowledge...... 9
Conditions for the care...... 11
The patient’s participation...... 11
Management system - responsibility of the care provider...... 11
Care before and directly after the birth...... 13
Prenatal care...... 13
Stabilisation of the child directly after the birth...... 14
Transportation of those needing care, newborn children...... 16
Organised transport...... 16
Lung diseases and breathing support...... 18
Acute lung disease (respiratory distress syndrome)...... 18
Non-invasive breathing support...... 19
Respirator treatment...... 20
Oxygen treatment...... 21
Bronchopulmonary dysplasia...... 22
Persistent ductus arteriosus...... 25
Preventative measures...... 25
PDA diagnostics...... 26
Treatment of PDA...... 27
The immature brain...... 30
Brain injuries...... 30
Methods of detecting brain injuries...... 31
Prevent brain injuries - risk factors...... 32
Infections...... 33
Prevent the spreading of infections...... 33
Nutrition - a precondition for growth and development...... 35
Nutritional intake and monitoring of the growth...... 35
Parenteral nutrition...... 37
Fluid and salt balance...... 37
Enteral nutrition...... 38
Retinopathy of prematurity...... 39
Treatment of pain...... 41
Pain assessment...... 41
Non-pharmacological treatment of pain...... 42
Pharmacological treatment of pain...... 43
Nursing...... 45
Care centered around the patient and the family...... 45
The dilemma surrounding life support treatment...... 48
Forming opinions...... 48
The participation of the parents...... 49
Documentation...... 49
Follow-up of the children...... 51
Project organisation...... 52
Project management...... 52
Participants in expert group, lung diseases...... 52
Participants in expert group, transportation...... 53
Participants in expert group, PDA...... 53
Participants in expert group, the immature brain, treatment of pain and nursing...54
Participants in expert group, nutrition...... 54
Appendix 1. Recommended nutritional intake...... 55
Appendix 2. Examples of pain assessment instrument...... 57
References .58
Summary
When a child is born far too prematurely, i.e. before 28 full weeks of pregnancy have passed, special resources and competences are required. The care of these children is complicated and the care personnel often face difficult medical judgements. This guideline is intended to support care providers and operations managers responsible for neonatal care to help them provide good care for all extremely premature infants. The guideline contains recommendations within the areas where the need for support has been considered to be at its greatest.
Extremely premature infants born at a regional clinic have been shown to have a considerably higher survival rate than children who are born at other hospitals. This justifies taking care of the mother and child at hospitals that have substantial experience of specialist obstetrics and neonatal intensive care. There ought also to be access to a well-functioning, organised transport with specialist personnel for both mothers facing the threat of premature birth and for the extremely premature infants who need to be moved after being born.
The children are often affected by serious complications and diseases which can lead to both acute and future problem. Almost all extremely premature infants need some form of breathing support and many need advanced treatment on a respirator. Many children have a long-term need for extra oxygen and all of them must be monitored carefully to avoid damage to the eyes (retinopathy of prematurity). Circulation problems are common and more than half of the children receive treatment to close the ductus arteriosus, which is a foetal blood vessel in the circulation and if it remains open this can have negative effects. Acute lung disease and failing circulation are often contributory factors to extremely premature infants being affected by haemorrhages and oxygen shortfalls in the central nervous system. The children’s immature brains ought therefore to be continuously assessed and factors which may have a negative effect on the development and function of the brains ought to be minimised.
In order to promote the health and development of the immature children, it is a key factor for the care to take place in such a way as to prevent care-related infections and to minimise pain and stress. Pain ought to be treated primarily using non-pharmacological methods, but with medicines as well if necessary.
In order to optimise the growth, drawn up nutrition recommendations ought to be followed. The extremely premature infants have a nutritional requirement which far exceeds that of full-term newborns at the same time as the giving of nutrition is often made more difficult by immature organ functions and complications from the gastrointestinal tract.
Having a far too prematurely born child is a major challenge to the family. The care ought to be organised so it is patient and family-centered where the child’s and the family’s individual needs are respected as far as possible and where the parents are supported and continuously informed of the child’s condition and prognosis.
Extremely premature infants ought to be followed up in the short and long term to increase the healthcare service’s knowledge of the consequences of an extremely premature birth. A structured follow-up system provides conditions for evaluating and constantly improving the care for these children.
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CARE OF CHILDREN WHO ARE BORN EXTREMELY PREMATURELY
THE NATIONAL BOARD OF HEALTHANDWELFARE
Introduction
A normal pregnancy lasts for approx. 40 weeks. If the birth occurs before 37 full weeks of pregnancy have passed, the child is defined as being born prematurely and if the birth occurs before 28 full weeks of pregnancy have passed (28 weeks and 0 days), the child is defined as having been born far too prematurely. The length of the pregnancy can be estimated from the first day of the last menstruation, but for greater accuracy, most pregnancies in Sweden are estimated by an ultrasound done in week 16-18.
In Sweden, more than 400 children are born far too prematurely each year (0.4 per cent of all those born), around 300 of whom are born alive (0.3 per cent of the total number of those who are born alive) [1, 2]. The chance of survival for these children is constantly improving and Sweden is one of the countries to demonstrate the highest survival rate in the world. In a national study, a 70 per cent one-year survival rate was reported for children who were born alive before 27 full-term weeks. The one-year survival rate was higher for children who were born at a regional clinic compared with another hospital (74 per cent and 56 per cent respectively) [3, 4]. The Swedish Medical Birth Register shows that around 90 per cent of the extremely premature infants born after 27 full-term weeks were alive at the age of one month [1].
Extremely premature infants risk being affected by serious diseases in the neonatal period and by later sequelae in the form of neurological and cognitive function impairment, visual and hearing impairments, developmental delay and deviating behaviours. In the national study, the majority of the children needed respirator treatment, more than half were treated for open ductus arteriosus, 10 per cent were affected by a serious brain haemorrhage and approx. 30 per cent developed immature changes in the retina of the eye (retinopathy of prematurity) [3, 4]. At the age of 2 ½, the majority (approx. 70 per cent) of the children had no or only a slight impact on cognition, language or motor skills, 7 per cent had developed cerebral palsy and less than 1 per cent were blind or deaf [5]. These children were also followed up at the age of 6 ½ but the results have not yet been compiled. The care ought to follow the consequences of an extremely premature birth in both the short and long term. One common thing is that extremely premature infants have higher blood pressure than children of the same age and are therefore probably also at greater risk of cardiovascular disease later in life [6].
Purpose and target group
The government has asked the Swedish National Board of Health and Welfare to draw up guidelines, recommendations and knowledge overviews for neonatal care.
The target group for this guideline is care providers and operations managers who are responsible for neonatal care. The guideline is intended to support them in providing good care for all extremely premature infants as well as facilitating quality assurance and follow-ups.
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VÅRD AV EXTREMELY FÖR EARLYT WHO ARE BORN children SOCIALSTYRELSEN
The content of the guideline
In order to safeguard the care of extremely premature infants, guidelines are needed within several of the areas. Eleven of the areas have been judged to be particularly urgent:
•care before and directly after the birth
•transporter
•lung diseases and breathing support
•persistent ductus arteriosus, PDA
•brain injuries
•infections
•nutrition
•retinopathy of prematurity, ROP
•treatment of pain
•nursing
•follow-up.
Each area is treated in more detail in its respective chapter but they overlap one another to some extent. The level of detail in the areas differs slightly where infections, ROP and follow-up are described more transparently because some sort of relevant knowledge basis and recommendations already exist within these areas. The guideline begins with a chapter describing the fundamental conditions for the care of extremely premature infants based on the existing legislation. At the end of the guideline is a chapter which discusses the ethical dilemma concerning life support treatment.
The guideline’s recommendations ought to be seen in their entirety, although there are two different levels in the grey assessment boxes: black points and points that are not filled in. The black points concern the more structural and general areas which are intended to guide care providers and operations managers in providing good conditions for good care. The points that are not filled in give answers to the way in which care can be achieved.
The guideline with its recommendations is based on the best available knowledge from science and tried and tested experience and is based on laws, enactments, provisions, guidelines, agreements and general advice.
Best available knowledge
The scientific basis has been charted on the basis of scientific articles that look at the effects of treatment but the number of systematic overviews concerning extremely premature infants is limited. The best available knowledge therefore also consists of individual scientific articles, overview articles and information from professional organisations or similar. This basis is called systematic charting ingrey assessment boxes, with detailed references to sources in the text.
A large share of the knowledge in the guideline has been obtained from the Swedish neonatal quality register (SNQ) and the national EXPRESS study (extremely preterm infants in Sweden study). SNQ is a national charting of the whole of the scope, content and outcome of neonatal care over time [7]. EXPRESS is both a study and a follow-up of 1011 children who were born
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CARE OF CHILDREN WHO ARE BORN EXTREMELY PREMATURELYTHE NATIONAL BOARD OF HEALTHANDWELFARE
before the 27th week of pregnancy during 2004-2007 [3]. However, this guideline deals with the care of children born before 28 full weeks of pregnancy have passed, which is the time that defines an extremely premature birth.
When no scientific basis has been found or it has been found to be weak, a consensus procedure between experts has been used and tried and tested experience has been put to good use to produce recommendations. This is called consensus between the chairpersons of the expert groups ingrey assessment squares. The Swedish National Board of Health and Welfare appointed five expert groups with a total of 41 experts who have a solid experience of neonatal care. The Swedish National Board of Health and Welfare and the experts jointly identified the areas where recommendations were needed to safeguard and provide support for the care of extremely premature infants. The Swedish National Board of Health and Welfare has provided the expert groups with training and assisted them with the examination of literature. Each group has had a chairperson and they have met The Swedish National Board of Health and Welfare continuously to reconcile the work with the guideline.
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VÅRD AV EXTREMELY FÖR EARLYT WHO ARE BORN children SOCIALSTYRELSEN
Conditions for the care
The person who is responsible for the care of extremely premature infants needs to take into account specific basic conditions. The healthcare service is responsible for offering good care. Healthcare and medical treatment is regulated by several laws, enactments and provisions. The Healthcare and Medical Treatment Act (1982:763) (HSL) states inter alia that the management of healthcare and medical treatment must be organised so as to provide a high level of patient safety and ensure good quality care as well as promoting cost-effectiveness. Where healthcare and medical treatment takes place, there must be the personnel, premises and equipment which are required to be able to provide good care.
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• The fundamental regulations for good care are described in HSL, in the Patient Safety Act (2010:659) (PSL) and in the Patient Data Act (2008:355) (PDL).
The patient’s participation
The HSLstates that good care must be based on respect for the patient’s self-determination and integrity as well as promote good contact between the patient and healthcare and medical treatment personnel. The care and treatment must as far as possible be designed and implemented in consultation with the patient. When it comes to the care of extremely premature infants, the patient influence requirement applies rather than whether there is the right competence to assess the child’s signals, behaviour and interaction with the parents and the family as well as whether to involve the parents in the design of the care.
HSLand PSL contain general rules stating that the patient must be given individually adapted information on his/her state of health and on the available methods for examination, care and treatment. If the information cannot be given to the patient, it must instead be given to a close relative if this is not prevented by the Public Access to Information and Secrecy Act (2009:400) or in the PSL.
Sometimes there are several treatment alternatives that tie in with science and tried and tested experience. The patient must then (in this case the parents) have the option of choosing and receiving the preferred alternative if this is justified on the basis of the condition and the costs (HSL and PSL).