Assessing health-related quality of life in patients with cleft palate in resource-limited countries : a preliminary evaluation of the VELO questionnaire in Uganda

Background and aims: Studies evaluating health-related quality of life (HRQoL) in patients with cleft palate .living in resource-limited countries such as Uganda are scarce. The VELO questionnaire evaluates the impact of speech (and swallowing) difficulties on the patient's HRQoL. The aim was to evaluate an adapted English version of the VELO questionnaire with reduced response options in Ugandan patients with a cleft lip and palate in order to identify influencing factors and future perspectives to implement HRQoL assessement in this population. Methods: Based on the responses of 16 parents of patients with cleft palate, 6 adolescent/adult patients with cleft palate and 12 control participants without cleft palate, observations regarding linguistic and cultural difficulties were noted and the discriminant validity and internal consistency of this adapted version of the questionnaire were evaluated. Additionally, the relationship between these responses and perceptually assessed speech parameters was assessed. Results: Half of the participants (11/22) completed the questionnaire independently, frequently resulting in incomplete responses (8/11). Difficulties with wording and cultural aspects influencing the responses were identified. The subscales showed excellent internal consistency, with the exception of the subscale 'swallowing problems'. The score on the subscale 'perception by others' of the parent report showed no significant difference with the score of the control group. The total score on the parent report and the youth report was (borderline) significantly related to the speech variables speech understandability, speech acceptability and the VPC-SUM. Discussion and conclusion: Promising results regarding the validity and internal consistency of the adapted instrument were found, indicating the potential of the VELO questionnaire for HRQoL assessment at the CoRSU hospital in Uganda. However, results should be interpreted cautiously, given that all participants had a primary language other than English, the small sample size with skewed distribution of speech characteristics, and the bias induced by socially desirable responses. In future studies, adaptations based on qualitative research to account for linguistic and cultural aspects, followed by a rigorous forward-backward translation of the questionnaire to English and Luganda are needed