Mental health

Authors

Johnson S, Huening B, Wolke D, Jaekel J, Okay I

Target group

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

User group

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

Statement of standard

The risk for behaviour, social, emotional and attention problems, attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) are assessed in the first year after birth, at two years of age and again prior to the transition to school.

Rationale

The goal is to evaluate infants’ and children’s risks for mental health and neurodevelopmental problems and disorders, to identify those who would benefit from additional support, and to provide feedback to families and health services.

Infants born very preterm are at risk for mental health problems throughout childhood and adolescence, in particular, for autism spectrum and attention problems, the risk for which increases with lower gestational age at birth. (1,2) This is consistent across cohorts and world regions (3,4) and despite advances in neonatal care. (5,6) There is also a two- to three-fold increased risk for psychiatric disorders (7) including a 10 times higher odds of ASD and five times higher odds of ADHD compared with children born at term. Mental health problems are already evident during early childhood (8–12) and parent reports of problems at two to three years of age are associated with disorders later in childhood. (13–16) Multiple and/or persistent regulatory problems with crying, sleeping and/or feeding in infancy are also more common in very preterm than term-born children and may be precursors to later attention and mental health problems. (17,18)

Intracranial abnormalities during the neonatal period are independent risk factors for psychiatric disorders in children born preterm. (1,13,19) The risk for mental health problems may also be higher among infants whose parents have high levels of stress or psychiatric disorders (20,21), and among infants born small for gestational age compared with their peers born with weight appropriate for their gestation. (22,23)

Benefits

Short-term benefits

N/A

Long-term benefits

Early identification of very preterm-born children with behaviour, social, emotional and attention problems, including ADHD and ASD, and referral to healthcare services (14,24–26)
Provides feedback and support to parents about their child’s social and emotional development (14,24–26)
Improved management of mental health and neurodevelopmental problems and disorders (consensus)
Improved parental counselling (consensus)
Improved healthcare planning (27)

Components of the standard

Component

Grading of evidence

Indicator of meeting the standard

For parents and family

Parents are informed about and invited by healthcare professionals to attend a follow-up programme including screening for mental health difficulties, including ADHD and ASD. (1,28)

A (High quality)
B (High quality)

Patient information sheet¹

Parents receive standardised feedback about the results of their child’s follow-up in a language that is accessible to them. (13,14)

A (Moderate quality)

Parent feedback

Children identified at risk are offered referral to the appropriate healthcare service (with parental consent).

B (High quality)

Audit report²

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

A unit guideline for a follow-up programme including screening for mental health problems, including ADHD and ASD, is adhered to by all healthcare professionals.

B (High quality)

Guideline

Country specific test norms are applied when interpreting the results of screening tests. (29)

A (High quality)

Training documentation

Training on the use of validated mental health, ADHD and ASD screening tests, in which gestational age and first language are taken into account is attended by all responsible healthcare professionals. (7,16,30,31)

A (High quality)
B (High quality)

Training documentation

Screening using validated parent-report tools is carried out in the first year after birth, at two years of age and prior to the transition to school. (32,33)

A (High quality)

Audit report²

For neonatal unit and follow-up team

A unit guideline on follow-up programme including screening for mental health problems, including ADHD and ASD, is available and regularly updated.

B (High quality)

Guideline

A follow-up programme after discharge including screening for mental health problems, including ADHD and ASD, is funded and supported. (34,35)

A (High quality)
B (Moderate quality)

Audit report²

Follow-up rates are continuously monitored.

B (Moderate quality)

Audit report²

Results of screening for mental health problems, including ADHD and ASD, are used for staff feedback.

B (Moderate quality)

Audit report²

For hospital and follow-up team

Training on the use of validated tests for screening for mental health problems, including ADHD and ASD, is ensured.

B (High quality)

Training documentation

Processes for referral for further diagnostic assessment, support and intervention for children identified as at risk of mental health problems, including ADHD and ASD, are implemented.

For health service

A national guideline for a follow-up programme including screening for mental health problems, including ADHD and ASD, is available and regularly updated.

B (High quality)

Guideline

A follow-up programme including screening for mental health problems, including ADHD and ASD, is specified, funded and monitored.

B (Moderate quality)

Audit report²

For early childhood educators

Early childhood educators should be aware of the increased risk for mental health problems, including ADHD and ASD, among children born and infants with other risk factors and should provide additional support where needed.

Early childhood educators should receive training in the developmental consequences of preterm birth (see www.pretermbirth.info)

¹The indicator ‘patient information sheet’ is an example for written, detailed information, in which digital solutions are included, such as web-based systems, apps, brochures, information leaflets, and booklets.

²The indicator ‘audit report’ can also be defined as a benchmarking report.

Where to go

Further development

Grading of evidence

For parents and family

Mental health assessment including screening for ADHD and ASD at transition to secondary/high-school age is offered. (1,36)

A (High quality)

Parents are supported by a case manager (see Follow-up & continuing care). (36,37)

A (High quality)

Provide incentives to attend follow-up programmes. (36)

A (High quality)

For healthcare professionals

Include standard autism screening. (38)

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. (39,40)

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 screening for mental health problems, ADHD and ASD and of well-child visits for health screening that are available.

For healthcare professionals

Attend training on using validated mental health assessments to screen for mental health problems, ADHD and ASD.
Identify appropriate parent-completed screening questionnaires that have nationally established norms for use.
Institute a training programme and standard schedule of assessment including an assessment in the first year after birth, at two years of age and prior to the transition to school.
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 screening for mental health problems, ADHD and ASD.
Develop information material about importance of follow-up including screening for mental health problems, ADHD and ASD 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.

For early childhood educators

Undertake training in the developmental consequences of preterm birth, including the increased risk for mental health and neurodevelopmental problems and disorders (see www.pretermbirth.info)

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