None listed
Conditions
Brief summary
Background: Children with chronic health conditions have better health-related outcomes when their care is managed in a personalised and coordinated way. However, increased demand on Australian ambulatory care hospital services has led to longer waitlist times to access specialists and appropriate intervention services; placing vulnerable children at increased risk of poorer short-term (e.g. social difficulties) and long-term (e.g. convictions) health and social outcomes. Traditional approaches to increasing frequency and service of delivery are expensive and can have minimal impact on caregiver burden. A community based service-integration approach, rather than self-directed care is proposed as a better health systems approach, as increased service linkages are more likely to occur thus and improving the health outcomes of children with a chronic health condition resulting in health economic benefits . Aim:To determine the effectiveness of an integrated care pathway led by an allied health liaison officer in the management of chronic disease in children. Methods: An open, unblinded, multi-centre randomised controlled trial in two Australian public hospitals. 112 children (0-16 years) fulfilling the inclusion criteria will be randomised to one of two clinical pathways for management of their chronic health condition: (1) integrated children’s care clinic (ICCC) or (2) self-directed care pathway. All children and caregivers will be interviewed at 1 week, 3, 6 and 12 months time intervals. Primary outcome measures include the Pediatric Quality of Life (PedQOL) questionnaire, subjective units of distress scale, child behaviour checklist (CBCL) and Rotter’s locus of control scale. Secondary outcome measures include the total number of medical appointments, school days missed and quantity of services accessed. Our main objectives are to determine if the ICCC results in better health and economics outcomes compared to the self-directed care pathway. Hypotheses: a) Children who access the ICCC will have improved quality of life (child and family impact) scores than children who access the self-directed care pathway. b) The ICCC pathway is more cost-effective than a self-directed care pathway. Discussion: The success of a health systems approach needs to be balanced against clinical, mortality and cost-effectiveness data for long-term sustainability within a publicly funded health system. A clinical pathway that is sustainable, cost-effective, provides efficient evidence-based care and improves the quality of life outcomes for children with chronic health conditions has the potential to reduce waitlist times to access health services, increase consumer satisfaction; and prevent costs associated with poorly managed chronic health conditions
Interventions
Children in the intervention group (e.g. integrated care pathway) will have access to an allied health liaison officer (AHLO). The AHLO qualification will be from an allied health background (e.g. speech pathologist, social worker, dietician, physiotherapist, psychologist, music therapist, occupational therapist). The AHLO will facilitate care coordination across hospital, primary, community and educational settings at 1 week, 3 months, 6 months and
12 months post diagnosis via a combination of
Children in the intervention group (e.g. integrated care pathway) will have access to an allied health liaison officer (AHLO). The AHLO qualification will be from an allied health background (e.g. speech pathologist, social worker, dietician, physiotherapist, psychologist, music therapist, occupational therapist). The AHLO will facilitate care coordination across hospital, primary, community and educational settings at 1 week, 3 months, 6 months and 12 months post diagnosis via a combination of face-to-face sessions and telephone consults, as clinically required by the family. The duration of face-to-face and telephone consults will range between 10 minutes (if caregiver reports no concerns) to a maximum of 60 minutes (if caregiver has concerns/needs requiring attention). For children <8 years, face-to-face and telephone sessions will occur with the caregiver only. For children >8 years, face-to-face and telephone sessions will occur with both the caregiver and child present. Frequency: caregivers will be asked to fill in questionnaires either in face to face or via phone (depending on caregiver preferences) at 1 week, 3 months, 6 months and 12 months after their appointment with the Paediatrician. Please note that care coordination tasks will be completed and/or new care coordination tasks identified at the above timepoints. Duration: It is anticipated that the questionnaires will take about 1 hour or so to complete. Appointments with General Practitioners, schools, service providers may also be arranged for children in the integrated care pathway group to help manage their chronic condition. The frequency of contact with other professionals will be dependent on the individual needs of the child and caregiver. Location: The AHLO will complete contact with the child and caregiver at various locations throughout the care pathway, pending the support requirements of each individual participant. This can include phone calls or face to face appointments at GP clinics and/or in school settings with other professionals. The AHLO will go through the following checklist to ensure appropriate care coordination. Please note, liaison with other professionals and agencies will occur, as appropriate throughout the duration of the study. Each process used and outcome will be documented to guide process evaluation for the AHLO role. Examples of care coordination tasks include: • Completion of forms – literacy assistance • Identification and acceptance to community agencies. Where there is a delay in acceptance, the AHLO will contact the relevant agency to determine what additional information is required and help facilitate the process (e.g. agency may be awaiting documentation from caregiver or letter from hospital provider) o Disability Services Queensland (DSQ), Child Development Services (CDS), Autism Queensland, Cerebral Palsy League of Queensland (CPLQ), Special Education Unit (SEU) • Check progress of financial assistance with Centrelink or similar agency o Carer’s Allowance • Organising school supports by providing hospital reports; connecting professionals from community agencies to the child's school case worker to develop an individualised education plan. • Navigation on use of eligible initiatives (Better Start, Chronic Disease Management Plan, Mental Health Care Plan, ATSI Plan) •Organising multidisciplinary team meetings for the child and caregiver at school or with the treating GP. This can involve other professionals currently providing educational and/or healthcare support for the child.
Sponsors
Dr Thuy Frakking
Study design
Allocation
Randomised controlled trial
Primary purpose
Treatment
Eligibility
Sex/Gender
All
Age
0 to 16 Years
Healthy volunteers
No
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.
Outcome results
None listed