Healthcare Pathways for Children with Chronic Conditions

Not Applicable

Completed

• Conditions: Developmental chronic condition; Physical Medicine / Rehabilitation - Other physical medicine / rehabilitation; Human Genetics and Inherited Disorders - Other human genetics and inherited disorders; Public Health - Health service research; Mental Health - Autistic spectrum disorders; Neurological - Other neurological disorders; Mental Health - Learning disabilities

• Registration Number: ACTRN12617001188325
• Lead Sponsor: Dr Thuy Frakking

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Results First Posted: 1900-01-01
• Study Start: 2017-08-14
• Study Completion: 2020-10-31
• Last Update Posted: 11 October 2021

Recruitment & Eligibility

• Status: Completed
• Sex: All
• Target Recruitment: 81

Inclusion Criteria

Children 0 to 16 years seen by Paediatrician at Caboolture Hospital, Gold Coast University Hospital or Queensland Children's Hospital and newly diagnosed with a developmental chronic condition where community based health or family support services are part of the management plan. Chronic conditions are expected to last more than 6 months and to produce consequences that impact on the child’s quality of life.

Examples of developmental chronic conditions include (but are not limited to): Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), Intellectual Impairment (II), Specific Language Impairment (SLI), Oppositional Defiance Disorder (ODD), Fetal Alcohol Spectrum Disorder (FASD), Cerebral Palsy (CP).

Exclusion Criteria

•Children with acute medical conditions requiring urgent intervention where community follow-up is deemed inappropriate by the treating Paediatrician.
•Children with a chronic medical condition primarily managed by medical consultation alone and those conditions where hospital based multidisciplinary teams provide coordinated care.
•Examples of excluded chronic conditions include: cancer, cystic fibrosis, asthma, epilepsy.

Study & Design

• Study Type: Interventional
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Pediatric Quality of Life (PedQOL) Child - Score 0 to 100. (Parent or child completed)<br>[1 week, 6 months, 12 months post (endpoint) medical review with Paediatrician];PedQOL Family Impact - Score 0 to 100. (Parent completed)[1 week, 6 months and 12 months (endpoint) post medical review with Paediatrician];Subjective Units of Distress Scale (SUDS) - Score 0 to 100. (Parent completed)[1 week, 6 months and 12 months post (end point) medical review with Paediatrician]