Identification of cost categories of cleft care incurred by the parent and child from birth to adulthood in the UK

Objective: To identify different cost categories incurred by the parent and child born with an orofacial cleft from birth to 20 years of age in the United Kingdom (UK).

Design: Focus groups were used to explore different cost categories associated with cleft care based on participants personal experiences at different stages of the cleft care pathway.

Setting: Conducted online using Microsoft Teams.

Participants: Parents of children born with unilateral cleft lip and palate (UCLP), bilateral cleft lip and palate (BCLP) and cleft palate (CP) were recruited from the Cleft Collective UK and the Cleft Lip and Palate Association (CLAPA) support group.

Interventions: Two focus groups were used to identify cost categories within the ages 0-10 years (n=5) and 11-20 years (n=4) of the cleft care pathway.

Main Outcome Measure: Qualitative assessment identified hierarchical direct and indirect cost categories for each focus group.

Results: The main direct costs incurred originated from travel, overnight accommodation, childcare, food, equipment, private treatment, and costs originating from encouraging inclusivity for the child. The main indirect costs originated from the loss of earnings due to time out of work, and time out of school for the child. Similar cost categories were identified in both focus groups.

Conclusion: Families incur numerous direct and indirect costs for cleft care from birth to adulthood. The different categories of costs identified will inform the development of quantitative instruments that will allow a better understanding of the true financial burden of cleft care for the parent and child in the UK.