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Background There has been a lack of a standardized protocol for collection of patient reported outcomes (PRO) and detection of and indication for psychological treatment in cleft care. The objectives of this paper was to translate Cleft Hearing Appearance and Speech Questionnaire (CHASQ) into eight European languages, to investigate whether levels of PRO in patients with cleft lip and/or cleft palate (CL/P) were comparable across countries and to investigate clinician experience of the instrument. Methods The PRO measure-CHASQ-was translated into Bulgarian, Estonian, Greek, Latvian, Macedonian, Romanian, Serbian and Swedish and implemented with patients in the respective countries. A focus group discussion was conducted to investigate health care professional experience on the use of CHASQ in their clinics. Data was analysed in accordance with the principles of thematic analysis. Results Analysis showed statistically significant differences between countries and groups of diagnosis in CHASQ scores. CHASQ helped clinicians gain patient information and informed on treatment decisions, broadened the clinicians' role as caregivers and was perceived as short and easy to use. Limited time and resources in clinics were limitations in implementing the instrument. Conclusions Translation and utilization of CHASQ facilitated international comparison and cooperation. Linguistically, valid replicas of CHASQ are now available in many European languages. Results from this study show that CHASQ may be used for collection of PRO on patient satisfaction and to spark conversation between clinicians, patients and families. Level of evidence: Not rateable.

Background Earlier research has investigated psychosocial and educational issues in populations of patients with cleft identifying several areas of concern. The objective of this study was to investigate current beliefs and knowledge about psychosocial and educational issues in parents and health care professionals (HCP) of children with cleft lip and/or palate (CL/P). Method Parents were interviewed concerning the view of society on people with visible differences, their child's social life, educational progress, and information regarding psychosocial care. Interviews with HCPs concerned characteristics related with educational achievement, behavior, and social relationships. Fifteen parents of children 9 to 13 years of age with CL/P and 10 HCPs and were interviewed. Data from interviews was analyzed with thematic analysis. Results Eight children were reported to have emotional issues related to their cleft. Eleven parents, however, did not perceive that their child was treated differently in society. HCPs expressed concerns regarding for example coping with being different, low self-esteem, shyness, disadvantage on first impression, and acceptance of themselves. A majority of the HCPs did not think patient cognition and behavioral or physical development were specifically affected. Conclusions The results revealed that parent experience and views were diverse-from no specific problems related to the cleft, to both emotional and educational issues. The beliefs and level of knowledge in HCPs also varied. All HCPs, however, wished for more information and training regarding psychosocial issues.

Objective: The primary aim of this study was to investigate whether there was any difference in scores of the Cleft Hearing, Appearance and Speech Questionnaire (CHASQ) between patients with cleft lip and/or cleft palate (CL/P) and a control population. The second aim was to compare CL/P and control population scores in this study with a British norm CL/P population. Design: Single-site, cross-sectional study with an age-matched control population. Setting: Participants were recruited from a hospital, a school, and a sports club. They answered the CHASQ in the hospital or at home. Participants: Sixty-four participants with CL/P (7-19 years of age) and a control population of 56 participants without CL/P (9-20 years of age). Main Outcome Measure: CHASQ. Results: There was no statistically significant difference in satisfaction with cleft-related features between the CL/P and the control population. Participants with CL/P were significantly more satisfied with non-cleft-related features than the control population. Cleft Hearing, Appearance and Speech Questionnaire scores were also similar to earlier established British normative data of a CL/P population. Conclusion: The results indicated that children and young people with CL/P were as satisfied with their appearance, hearing, and speech as children and young people without CL/P. Swedish CHASQ scores were also similar to British scores.

Objective: The primary aim of this study was to compare corresponding scores between 2 existing cleft-specific patient-reported outcome measures (PROMs)—Cleft Hearing Appearance and Speech Questionnaire (CHASQ) and CLEFT-Q. The second aim of the study was to investigate patient opinion on the 2 PROMs. Design: Cross-sectional questionnaire study. Setting: Participants were recruited from a University Hospital. They answered CHASQ and CLEFT-Q either in the hospital or at home. Participants: Thirty-three participants with cleft lip and/or palate, aged 10 to 19 years. Main Outcome Measure: CHASQ and CLEFT-Q. Results: The CHASQ scores and the corresponding CLEFT-Q scores on appearance correlated significantly. Corresponding scores regarding speech did not correlate significantly. A majority, 15 (58%) participants, answered that they liked CLEFT-Q more than CHASQ, 18 participants (69%) thought CHASQ was easier to complete, and 19 (76%) thought CLEFT-Q would better inform health care professionals. Conclusion: Both instruments showed strengths and limitations. Clinicians will have to consider each instrument’s respective qualities when choosing to implement either PROM.

In conclusion, most patients with VPD in this study who underwent evaluation and treatment felt that surgery and speech therapy had improved their speech, but only about half of them were in the end satisfied with the quality of their speech.