The cost of cleft care for the parent and child
Research type
Research Study
Full title
The cost of cleft care for the parent and child
IRAS ID
316207
Contact name
Melisa Padashi-Fard
Contact email
Sponsor organisation
Research Governance Team, Bristol University
Duration of Study in the UK
1 years, 8 months, 28 days
Research summary
Orofacial clefts occur in 1 in every 700 live births in the United Kingdom (UK), making it the most common craniofacial anomaly. A child born with a cleft will require long-term multidisciplinary treatment, including input from surgeons, speech and language therapists, audiologists, paediatric dentists, orthodontists and psychologists. These interventions from birth through to adulthood entail costs for both the healthcare system, the affected child and their parents.
Recent micro-costing studies within the UK have assessed the costs of cleft care to the NHS for children born with unilateral cleft lip and palate (UCLP), bilateral cleft lip and palate (BCLP), and cleft palate only (CPO) across various age ranges. Collectively, these studies provide a retrospective understanding of the main financial costs incurred to the healthcare system for cleft care for the above three phenotypes, from birth to 20 years of age. Although one of these studies estimated the basic financial costs to the families of a child with a UCLP from birth to 5 years, including travel costs and loss of earnings, the investigators identified that ‘a study to assess the true cost to the families with input from patient/public involvement would benefit our understanding and potentially make the burden of care easier'.
To date there has been no previous study within the UK that has reported on the true costs of cleft care incurred by the patient and their parents/guardians from birth through to adulthood. These costs can be divided into two broad categories:
• Direct costs, e.g., travel costs, childcare, foodstuffs, overnight stays;
• Indirect costs, e.g., loss of earnings/ productivity for parents, less time in education for the child.
This study evaluating the direct and indirect patient/parent costs will increase our understanding of both the financial and social burden of undergoing cleft care.REC name
London - Harrow Research Ethics Committee
REC reference
22/PR/1014
Date of REC Opinion
31 Aug 2022
REC opinion
Further Information Favourable Opinion