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Development and Validation of a Parent-Reported Clinical Screening Instrument for Team Care of Young Children with a
Sofia Bachini1, Mariska Jorine Hartendorp2, Edith Visser3
1Department of Plastic and Reconstructive Surgery, Frisius Medical Center Leeuwarden, Leeuwarden, Netherlands.
Insights
A new screening tool, the Cleftchild-8, helps identify needs for children with orofacial clefts. This validated instrument supports cleft teams in tailoring consultations for better patient care.
Area of Science:
- Pediatric healthcare
- Clinical assessment tools
- Orofacial clefts management
Background:
- Orofacial clefts require comprehensive, multidisciplinary care.
- Screening tools are needed to efficiently assess patient needs before consultations.
- Existing tools may not be specific or age-appropriate for young children with clefts.
Purpose of the Study:
- To develop and validate the Cleftchild-8, a cleft-specific proxy clinical screening instrument.
- To create a preparatory tool for cleft team consultations for children up to 8 years old.
- To enhance early identification of patient needs and improve care quality.
Main Methods:
- A multicenter prospective cohort study involving 5 Dutch referral centers.
- Iterative development including item pool generation, expert/caregiver feedback, and psychometric testing.
- Data collected from 414 parents/caregivers of children with orofacial clefts.
Main Results:
- The Cleftchild-8 demonstrated good to excellent internal consistency (α = 0.75-0.92).
- Validated known-groups validity across different cleft types.
- The final 42-item questionnaire covers feeding, dentition, otology, sleep, speech, and psychosocial functioning.
Conclusions:
- The Cleftchild-8 is a valid instrument for supporting cleft consultations.
- It prioritizes patient and family needs by analyzing individual item responses.
- The tool assists cleft teams in efficiently identifying key concerns and tailoring care.
Abstract:
ObjectiveThis study aimed to develop and validate a cleft-specific proxy clinical screening instrument for children up to 8 years old with orofacial clefts: the CleftChild-8. Our objective was to implement this questionnaire as a preparatory tool for cleft team consultations, enabling early identification of patient needs, facilitating communication with caregivers, and improving the quality and efficiency of care.DesignThis was a multicenter prospective cohort study to develop an instrument to be interpreted at the item level in an iterative process with relevant domains selection, item pool generation, caregivers and expert feedback, and psychometric testing.SettingThe study took place in 5 orofacial clefts referral centers in the Netherlands.ParticipantsParticipants were parents or caregivers of children born with syndromic and nonsyndromic cleft lip and/or palate and younger than 8 years old.ResultsBetween 2023 and 2025, the CleftChild-8 working version was completed by 414 parents/caregivers. Psychometric analyses supported a four-factor structure with good to excellent internal consistency (α = 0.75-0.92) and demonstrated known-groups validity across cleft types. The final 42-item questionnaire covers feeding and dentition, otology and sleep, speech, and psychosocial functioning.ConclusionThe Cleftchild-8 is a valid instrument to support cleft consultations by prioritizing the needs of patients and their families through reviewing responses to individual items and open-ended questions. The Cleftchild-8 can assist cleft teams to efficiently identify key concerns and tailor consultations accordingly.
