Table 4 Characteristics of neurodevelopmental follow-up care provided by cardiology services.
State | Victoria | New South Wales | Queensland |
|---|---|---|---|
Name of pathway/service | Cardiology outpatient clinic | Cardiac psychology service | Congenital Heart Disease Long-term Improvements in Functional Health (CHD LIFE) pathway |
Where is it based? | Royal Children’s Hospital, Melbourne | Embedded in the Sydney Children’s Hospitals Network (SCHN) Heart Centre for Children, Sydney | Queensland Children’s Hospital, Brisbane, with care delivered across the state |
Which clinical service leads it? | Cardiology | Cardiac Psychology | Cardiology and allied health |
What is it? | Developmental screening embedded into Cardiology review: “When they come to clinic there is a trigger in our electronic record that generates the survey and the parents fill it out, and then we score it and then either act on those scores or refer them to our team for follow up after that.” [P36, Paediatric Cardiologist] | Cardiac psychology service works in partnership with the Grace Centre for Newborn Care (neonatal unit in same hospital network – see Supplementary Material 5*) to provide neurodevelopmental evaluation and care, and comprehensive psychological services across the medical trajectory (including screening, assessment, intervention, and treatment) “We provide a range of different kinds of services. So psychological screening, assessment, a range of different therapies - whether that be for the baby, child, adolescent or adult heart disease, their parents or caregivers, their siblings, their grandparents, the family as a whole.” [P14, Psychologist] | State-wide follow-up pathway in partnership with health services and primary care: “It’s a primary surveillance model with referral on if there are difficulties detected to a more specialised service, like a multidisciplinary integrated child development service” [P23, Paediatrician]. Focus on providing families with education and empowerment to access follow-up support independently. |
Which babies/children are eligible? | All children returning for Cardiology follow-up. | All children with paediatric or congenital heart disease and their families can access psychological support and mental healthcare. Children with CHD who have undergone cardiac surgery before age 12-months can access neurodevelopmental evaluation via the cardiac psychology service. The specific cohort of children with CHD who are admitted to the NICU after neonatal surgery are systematically enroled and followed-up at regular intervals in the Grace Centre’s Development Clinic (Supplementary Material 5). State-wide remit. | All children with CHD who have surgery at the hospital in the first year of life. State-wide remit. |
How does follow-up care commence? | Systematically embedded in standard Cardiology follow-up for all children with CHD. | Psychology service systematically contacts all eligible families to offer evaluation and services. Accepts referrals from a wide range of sources including medical specialists, parents, nurses, and allied health professionals. Do not need a previous admission at the hospital to be eligible. | Systematic referral of children onto pathway. Hospital-based allied health team refer on to community services for regular surveillance and screening, and assessment and intervention as indicated. Medical team refer to paediatricians. Consenting families entered into pathway database. |
How is service delivery structured? | Centralised at hospital. In-person. | Centralised at hospital. In-person services. Telehealth may also be offered, depending on the nature of the referral, clinical presentation, and therapies needed. | Decentralised, care close to home. In-person. Some services use telehealth. |
Who delivers follow-up? | Cardiologist and physiotherapist | Psychologists in collaboration with a multidisciplinary team. | Various, with a focus on primary health care providers (child health nurse, GPs, aboriginal health workers, allied health) |
What are the follow-up procedures and measures used? | Developmental survey (Ages and Stages) triggered in electronic medical record at specific Cardiology reviews. Survey completed by parent and collated and reviewed by physiotherapist. Referrals to GP or for formal assessment in community as needed. | Psychological screening, assessment, and a range of therapies for infants to adults. The Grace Centre’s Development Clinic provides multidisciplinary developmental and medical assessment for the eligible cohort (see Supplementary Material 5). | Family education and awareness about follow-up before discharge. Regular developmental surveillance and screening in community/primary health care encouraged using Ages and Stages Questionnaire. Refer on for formal assessment or intervention as needed. Follow-up can look different across the state but principles are the same: “There’s a referral pathway which takes them back to those local hospital and health services to follow up. But then how’s that executed on the ground is variable” [P17, Executive Director]. |
When is follow-up is provided? | Survey flagged at 12 months, 2 years, and pre-school age | Cardiac psychology services can be provided from pre-natal diagnosis to age 18 years. No age restrictions for caregivers. The Grace Development Clinic sees children regularly to 3 years of age. | Surveillance and screening at 6 months, 12 months, 18 months, 2.5-3.5 years, 4-5 years, 11-12 years, and 15 years as a minimum. |
Additional information | Both clinics are funded through combination of health service, research grants, and philanthropy contributions | Involves capacity building and education of community providers |
