Data Collection and Questionnaires

_{Parent/Guardian completed Questionnaires}

_{Questionnaires are sent to the biological mother and biological father/mother's partner at the following time points:}

_{Baseline questionnaire: When the family are recruited into the study (antenatally or postnatally or at the child's Five-Year audit clinic)}
_{Child is 18 months old}
_{Child is 3 years old}
_{Child is 5 years old}
_{Child is 8 years old}
_{Child is 10 years old}
_{Child is 12 years old}
_{Child is 15 years old}

^{Baseline questionnaires are completed in a paper format. Follow-up questionnaires are completed either on paper or online. Online versions of the questionnaires are hosted on REDCap.}

^{There is a 'Mother' version and a 'Father/Mother's partner' version.}

^{Please click on the link below to access the 'Mother' version of the questionnaires:}

Baseline Questionnaires

Antenatal baseline questionnaire‌

Postnatal baseline questionnaire‌

Five-year baseline questionnaire‌‌

‌Follow-up Questionnaires

Eighteen month follow-up questionnaire‌

Three year follow-up questionnaire‌

Five year follow-up questionnaire‌

Eight year follow-up questionnaire‌

Ten year follow-up questionnaire

Twelve year follow-up questionnaire

‌Fifteen year follow-up questionnaire (PDF, 1,864kB)‌

Child completed questionnaires

_{Paper questionnaires are also sent to the child to complete at the following timepoints:}

_{8 years old - Eight year child questionnaire}
_{10 years old - Ten year child questionnaire}
_{12 years old - Twelve year child questionnaire}
_{15 years old - Fifteen year child questionnaire (PDF, 621kB)}

_{If you would like a copy of the Father/Mother's partner questionnaires, please email: cleft-collective@bristol.ac.uk}

Surgical questionnaires

Speech and Language Data Collection

Assessment forms are completed by a Speech & Language Therapist:

Hearing records are completed by an audiologist when the child is 16 months and 3 years:

Speech and Language Hearing Record (PDF, 144kB)

A speech and language questionnaire is completed by parents:

An intervention survey is completed by the Speech and Language Therapist at 5 years:

Cleft Collective Intervention Survey (PDF, 470kB)

Audit data at age 5

Audit data are collected by the NHS cleft teams and include:

Growth: Height and weight measurements.
Orthodontics: Dental arch relationships assessed using the Five Year Old Index (for children with unilateral cleft lip and palate only).
Paediatric dentistry: Dental health assessed using decayed, missing and filled primary teeth (dmft), alongside developmental defects of enamel (DDE), including hypomineralisation, hypoplasia and abnormalities in tooth shape or size.
Psychology: Psychosocial assessment using the Tiers of Involvement Measure (TIM). Strengths and Difficulties Questionnaire (SDQ) scores were also collected for children born before 2018.
Speech and language: Speech outcomes assessed using CAPS-A (for children with cleft palate, unilateral cleft lip and palate or bilateral cleft lip and palate). Measures include hypernasality, hyponasality, audible nasal emission, nasal turbulence and cleft speech characteristics (anterior, posterior, non-oral and passive). Previous velopharyngeal surgery or fistula repair is also recorded.