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Authors

Johnson S, Jaekel J, Wolke D, van Wassenaer-Leemhuis A

Target group

Infants born very preterm or those infants with risk factors (see preamble TEG Follow-up & continuing care) and parents

User group

Healthcare professionals, neonatal units, hospitals, follow-up teams, and health services

Statement of standard

Behaviour, emotional and attention problems are assessed at two years of age and again at the time of transition to school.

Rationale

The goal is to assess and evaluate children’s mental health, to identify those who would benefit from additional support, and to provide feedback to families and health services.

Infants born very preterm are at increased risk for mental health problems throughout childhood and adolescence, in particular for emotional and attention problems, the risk for which increases with lower gestational age at birth. (1,2) Up to 46% have clinically significant problems, (1) the pattern of which is consistent across cohorts and despite advances in neonatal care. (3,4) There is a two- to three-fold increased risk for psychiatric disorders (5) which is typically found to be specific to Attention Deficit/Hyperactivity Disorders (ADHD), particularly of the inattentive subtype, anxiety disorders and autism spectrum disorders. (6,7) Mental health problems are also evident during the pre-school years (6,8–11) and parent reports of problems at two to three years of age are associated with disorders later in childhood. (7,12–14) Longitudinal studies suggest that mental health problems persist over time in children born preterm. (15,16)

Intracranial abnormalities during the neonatal period are independent risk factors for psychiatric disorders later in life in children born preterm. (1,7,17) The risk for mental health problems may also be higher among infants born with foetal growth restriction with a number of studies reporting an increased risk for emotional, conduct and attention problems in children born small for gestational age compared with their peers born with weight appropriate for their gestation. (18,19)

Benefits

Short-term benefits
N/A

Long-term benefits

  • Early identification of very preterm-born children with behaviour, emotional and attention problems and referral to healthcare services (12,20–22)
  • Provides feedback and support to parents about their child’s behavioural and emotional development (12,20–22)
  • Improved management of mental health problems (consensus)
  • Improved parental counselling (consensus)
  • Improved healthcare planning (23)

Components of the standard

Component Grading of evidence Indicator of meeting the standard
For parents and family    
1. Parents are informed about and invited by healthcare professionals to attend follow-up programme including screening for mental health difficulties. (1,24) A (High quality)
B (High quality)
Patient information sheet
       
2. Parents receive standardised feedback about the results of their child’s mental health screening in a language that is accessible to them. (7,12) A (Moderate quality) Parent feedback
       
3. Children identified at risk are offered referral to the appropriate healthcare service (with parental consent). B (High quality) Audit report
       
4. Parents are asked to consent to share the results of their child’s screening tests with education services. B (Moderate quality) Parent consent
       
For healthcare professionals    
5. A unit guideline on follow-up programme including mental health is adhered to by all healthcare professionals. B (High quality) Guideline
       
6. Country specific test norms are applied when interpreting the results of screening tests. (25) A (High quality) Training documentation
       
7. Training on standardised mental health assessments, in which gestational age and first language are taken into account is attended by all responsible healthcare professionals. (5,14–16) A (High quality)
B (High quality)
Training documentation
       
8. Screening using standardised parent-report tools is carried out. (26,27) A (High quality) Audit report
       
For neonatal unit and follow-up team    
9. A unit guideline on follow-up programme including mental health is available and regularly updated. B (High quality) Guideline
       
10. A follow-up programme after discharge including mental health is funded and supported. (28,29) A (High quality)
B (Moderate quality)
Audit report
       
11. Follow-up rates are continuously monitored. B (Moderate quality) Audit report
       
12. Mental health outcomes are used for staff feedback. B (Moderate quality) Audit report
       
For hospital and follow-up team    
13. Training on standardised mental health assessments is ensured. B (High quality) Training documentation
       
For health service    
14. A national guideline on follow-up programme including mental health is available and regularly updated. B (High quality) Guideline
       
15. A follow-up service including mental-health is specified, funded and monitored. B (Moderate quality) Audit report
       

Where to go

Further development Grading of evidence
For parents and family  
  • Mental health assessment at transition to secondary/high-school age is offered. (1,30)
A (High quality)
  • Parents are supported by a case manager. (30,31) (see TEG Follow-up & continuing care)
A (High quality)
  • Provide incentives to attend follow-up programmes. (30)
A (High quality)
For healthcare professionals  
  • Include standard autism screening. (32)
A (High quality)
For neonatal unit and follow-up team  
  • Establish integrated electronic system with mental health follow-up provider to schedule follow-up visits.
B (Low quality)
For hospital and follow-up team  
  • Dedicate assessment facility.
B (Moderate quality)
For health service  
  • Develop a national network for benchmarking of follow-up outcomes. (33,34)
A (High quality)
  • Include follow-up information on an electronic healthcare card.
B (Low quality)
   

Getting started

Initial steps
For parents and family
  • Parents are informed by healthcare professionals about the importance of follow-up including mental health screening and of well-child visits for health screening that are available.
For healthcare professionals
  • Attend training on standardised mental health assessments.
  • Identify an appropriate parent-completed behavioural screening questionnaire that has nationally established norms for use.
  • Institute a training programme and standard schedule of assessment.
  • Establish a structure of communication with other healthcare institutions, providing follow-up care.
For neonatal unit and follow-up team
  • Develop and implement a unit guideline on follow-up programme including mental health.
  • Develop information material about importance of follow-up including mental health screening for parents.
  • Establish a formal system of keeping track of families.
  • Develop a structure of follow-up locally.
For hospital and follow-up team
  • Support healthcare professionals to participate in training on standardised mental health assessments.
  • Provide space and resources for follow-up assessments in clinics or postal/online.
For health service
  • Develop and implement a national guideline on mental health follow-up services for the target group.
 

Sources

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November 2018 / 1st edition / next revision: 2023

Recommended citation

EFCNI, Johnson S, Jaekel J et al., European Standards of Care for Newborn Health: Mental Health. 2018.

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