Timing of Primary Surgery for Cleft Palate.

BACKGROUND: Among infants with isolated cleft palate, whether primary surgery at 6 months of age is more beneficial than surgery at 12 months of age with respect to speech outcomes, hearing outcomes, dentofacial development, and safety is unknown. METHODS: We randomly assigned infants with nonsyndromic isolated cleft palate, in a 1:1 ratio, to undergo standardized primary surgery at 6 months of age (6-month group) or at 12 months of age (12-month group) for closure of the cleft. Standardized assessments of quality-checked video and audio recordings at 1, 3, and 5 years of age were performed independently by speech and language therapists who were unaware of the trial-group assignments. The primary outcome was velopharyngeal insufficiency at 5 years of age, defined as a velopharyngeal composite summary score of at least 4 (scores range from 0 to 6, with higher scores indicating greater severity). Secondary outcomes included speech development, postoperative complications, hearing sensitivity, dentofacial development, and growth. RESULTS: We randomly assigned 558 infants at 23 centers across Europe and South America to undergo surgery at 6 months of age (281 infants) or at 12 months of age (277 infants). Speech recordings from 235 infants (83.6%) in the 6-month group and 226 (81.6%) in the 12-month group were analyzable. Insufficient velopharyngeal function at 5 years of age was observed in 21 of 235 infants (8.9%) in the 6-month group as compared with 34 of 226 (15.0%) in the 12-month group (risk ratio, 0.59; 95% confidence interval, 0.36 to 0.99; P = 0.04). Postoperative complications were infrequent and similar in the 6-month and 12-month groups. Four serious adverse events were reported (three in the 6-month group and one in the 12-month group) and had resolved at follow-up. CONCLUSIONS: Medically fit infants who underwent primary surgery for isolated cleft palate in adequately resourced settings at 6 months of age were less likely to have velopharyngeal insufficiency at the age of 5 years than those who had surgery at 12 months of age. (Funded by the National Institute of Dental and Craniofacial Research; TOPS ClinicalTrials.gov number, NCT00993551.).

Inter-centre comparison of data on surgery and speech outcomes at 5 years of age based on the Swedish quality registry for patients born with cleft palate with or without cleft lip.

BACKGROUND: The objective of the Swedish cleft lip and palate registry (CLP registry) is to promote quality control, research and improvement of treatment, by the comparison of long-term results. The aim was to compare data from the CLP registry among the six treatment centres, regarding data on surgery and speech outcomes at 5 years of age. METHODS: The participants were 430 children born in Sweden from 2009 to 2014, with cleft palate with or without cleft lip and without known syndromes and/or additional malformations. The number of primary and secondary palatal surgeries up to 5 years of age, timing of the last primary palatal surgery, percentage consonants correct, percentage non-oral speech errors and perceived velopharyngeal competence at 5 years were assessed. Multivariable binary logistic regression adjusted for sex and cleft type was used to compare results between the six centres. RESULTS: At one centre (centre 4), the palate was closed in one to three stages, and at the remaining centres in one or two stages. At centre 4, more children underwent a higher number of palatal surgeries, and the last primary palatal surgery was performed at a higher age. Children in centre 4 were also less likely to achieve ≥86% correct consonants (OR = 0.169, P = < 0.001), have no non-oral speech errors (OR = 0.347, P = < 0.001), or have competent or marginally incompetent velopharyngeal competence (OR = 0.244, P = < 0.001), compared to the average results of the other centres. No clear association between patient volume and speech outcome was observed. CONCLUSIONS: The results indicated the risk of a negative speech result if the last primary palatal surgery was performed after 25 months of age. Whether the cleft in the palate was closed in one or two stages did not affect speech outcome. The Swedish CLP registry can be used for open comparisons of treatment results to provide the basis for improvements of treatment methods. If deviating negative results are seen consistently at one centre, this information should be acted upon by further investigation and analysis, making changes to the treatment protocol as needed.

Coverage, reporting degree and design of the Swedish quality registry for patients born with cleft lip and/or palate.

BACKGROUND: The objective of the Swedish cleft lip and palate (CLP) registry is to promote quality control, research and improvement of treatment, by comparison of the long-term results of surgery, orthodontics and speech from all six Swedish CLP centres. The purpose of the study was to investigate the coverage and reporting degree of the Swedish CLP registry, and to describe the design of the registry and discuss questions of reliability and validity of the data included. METHODS: All six Swedish CLP centres participate in the registry. All children in Sweden with cleft lip and/or cleft palate, born from 2009 onwards, are included in the registry. Baseline data such as cleft type (ICD-10 diagnosis), heredity, birth weight and additional deformities and/or syndromes, as well as pre-surgical treatment, are recorded at first visit. Data on surgical treatment are recorded continuously. Treatment outcome regarding dentofacial development and speech are recorded at follow-ups at 5, 10, 16 and 19 years of age. Data on dentofacial development are also recorded 1 year after orthognathic surgery. In addition, data on babbling and speech are recorded at 18 months of age. Coverage degree and reporting degree of surgery was assessed by comparison with registrations in the Swedish Central patient registry. Reporting degree of orthodontic and speech registrations at 5 years of age was assessed by comparison with registrations at baseline. RESULTS: The average coverage degree for children born 2009 to 2018 was 95.1%. For cleft-related surgeries, the average reporting degree was 92.4%. Average reporting degree of orthodontic registrations and speech registrations at age 5 years was 92 and 97.5% respectively. CONCLUSION: In order to achieve valid and reliable data in a healthcare quality registry, the degree of coverage and reporting needs to be high, the variables included should be limited and checked for reliability, and the professionals must calibrate themselves regularly. The Swedish CLP registry fulfils these requirements.

"She Sounds Like a Small Child or Perhaps She has Problems"-Peers' Descriptions of Speech in 7-Year-Olds Born With Cleft Palate.

OBJECTIVE: The aim of this study was to explore how 7-year-olds describe speech in children born with cleft palate in their own words and to investigate whether they perceive signs of velopharyngeal incompetence (VPI) and articulation errors, and if so, which terminology they use. METHODS/PARTICIPANTS: Twenty 7-year-olds participated in 6 focus group interviews where they listened to 8 speech samples with different types of cleft speech characteristics and described what they heard. The same speech samples had been assessed by speech-language pathologists and comprised normal speech, different degrees of VPI, oral articulation disorders, and glottal articulation. The interviews were analyzed with qualitative content analysis. RESULTS: The analysis resulted in 4 interlinked categories: descriptions of speech, thoughts on personal traits, consequences for communication, and emotional reactions and associations. Each category contains 4 to 5 subcategories with the children's descriptions and reflections. Glottal articulation and severe signs of VPI caused the most negative emotional reactions and were described as sounding scary and incomprehensible and the children speculated on the risk of social rejection of the speakers. Retracted oral articulation was also noted and described but with a vocabulary similar to the professionals. Minor signs of VPI were not noted. CONCLUSIONS: Seven-year-olds are direct and straightforward in their reactions to cleft palate speech characteristics. More pronounced signs of VPI and articulatory difficulties, also minor ones, are noted. Clinically, articulatory impairments may be more important to treat than minor signs of VPI.

Reliability of Speech Variables and Speech-Related Quality Indicators in the Swedish Cleft Lip and Palate Registry.

OBJECTIVE: To assess the reliability of speech variables and speech-related quality indicators in the Swedish quality registry for cleft lip and palate (CLP). DESIGN: Retrospective study. SETTING: Primary care university hospitals. PARTICIPANTS: Fifty-two 5-year-old children with unilateral CLP and 41 with bilateral CLP. MAIN OUTCOME MEASURES: Registry data for "percent nonoral errors" and "perceived velopharyngeal competence" (VPC) were compared to reassessments by 4 independent judges based on audio recordings. Interjudge agreement for "percent consonants correct" (PCC) and the reliability of 3 quality indicators were also assessed. Agreement was calculated with single measures intraclass correlation coefficient (ICC) for articulation outcomes, quadratic weighted κ and ICC for VPC, and percentage agreement and κ for quality indicators. RESULTS: When the agreement between registry data and the judges' reassessments was assessed, the ICC was 0.79 for percent nonoral errors. For VPC, the κ coefficient was 0.66 to 0.75 and the ICC was 0.73. Interjudge agreement for PCC calculated with ICC was 0.85. For the quality indicator "proportion of children with ≥86% correct consonants," all 4 judges were in agreement for 72% of the cases. For "proportion of children without nonoral speech errors" and "proportion of children with competent or marginally incompetent velopharyngeal function," the agreement between registry data and the 4 judges was 89% and 85%, respectively. CONCLUSIONS: The results indicate that registry data on PCC, percent nonoral errors, VPC, and the quality indicators "proportion of children without nonoral speech errors" and "proportion of children with competent or marginally incompetent velopharyngeal function" are reliable.

Scandcleft Project, Trial 1: Comparison of Speech Outcome in Relation to Timing of Hard Palate Closure in 5-Year-Olds With UCLP.

OBJECTIVE: To compare in-depth speech results in Scandcleft Trial 1 as well as reference data from peers without cleft palate (CP). DESIGN: A prospective randomized clinical trial. SETTING: A Danish and a Swedish CP center. PARTICIPANTS: 143 of 148 randomized 5-year-olds with unilateral cleft lip and palate. All received lip and velum closure at 4 months, and hard palate closure at 12 months (arm A) or 36 months (arm B). MAIN OUTCOME MEASURES: A composite measure based on velopharyngeal competence (VPC) or velopharyngeal incompetence (VPI), an overall assessment of VPC from connected speech (VPC-Rate), Percentage of Consonants Correct (PCC-score), and consonant errors. Speech therapy visits, average hearing thresholds, and secondary pharyngeal surgeries documented burden of treatment. RESULTS: Across the trial, 61.5% demonstrated VPC and 38.5% VPI. Twenty-two percent of participants achieved age appropriate PCC-scores. There were no statistically significant differences between arms or centers for these measures. In the Danish center, arm B: achieved lower PCC-scores (P = .01); obtained PCC-scores without s-errors below 79% (P = .002); produced ≥3 active oral cleft speech characteristics (P = .004) than arm A. In both centers, arm B attended more speech visits. CONCLUSIONS: At age 5, differences between centers and treatment arms were not statistically significant for VPC/VPI, but consonant proficiency differed between treatment arms in the Danish center. Poor speech outcomes were seen for both treatment arms. Variations between centers were observed. As the Swedish center had few participants, intercenter comparisons should be interpreted with caution.

Validity of auditory perceptual assessment of velopharyngeal function and dysfunction - the VPC-Sum and the VPC-Rate.

Overall weighted or composite variables for perceptual auditory estimation of velopharyngeal closure or competence have been used in several studies for evaluation of velopharyngeal function during speech. The aim of the present study was to investigate the validity of a composite score (VPC-Sum) and of auditory perceptual ratings of velopharyngeal competence (VPC-Rate). Available VPC-Sum scores and judgments of associated variables (hypernasality, audible nasal air leakage, weak pressure consonants, and non-oral articulation) from 391 5-year olds with repaired cleft palate (the Scandcleft project) were used to investigate content validity, and 339 of these were compared with an overall judgment of velopharyngeal competence (VPC-Rate) on the same patients by the same listeners. Significant positive correlations were found between the VPC-Sum and each of the associated variables (Cronbachs alpha 0.55-0.87, P < 0.001), and a moderately significant positive correlation between VPC-Sum and VPC-Rate (Rho 0.698, P < 0.01). The latter classified cases well when VPC-Sum was dichotomized with 67% predicted velopharyngeal competence and 90% velopharyngeal incompetence. The validity of the VPC-Sum was good and the VPC-Rate a good predictor, suggesting possible use of both measures depending on the objective.

Speech in 10-Year-Olds Born With Cleft Lip and Palate: What Do Peers Say?

OBJECTIVE: The aim of this study was to explore how 10-year-olds describe speech and communicative participation in children born with unilateral cleft lip and palate in their own words, whether they perceive signs of velopharyngeal insufficiency (VPI) and articulation errors of different degrees, and if so, which terminology they use. Methods/Participants: Nineteen 10-year-olds participated in three focus group interviews where they listened to 10 to 12 speech samples with different types of cleft speech characteristics assessed by speech and language pathologists (SLPs) and described what they heard. The interviews were transcribed and analyzed with qualitative content analysis. RESULTS: The analysis resulted in three interlinked categories encompassing different aspects of speech, personality, and social implications: descriptions of speech, thoughts on causes and consequences, and emotional reactions and associations. Each category contains four subcategories exemplified with quotes from the children's statements. More pronounced signs of VPI were perceived but referred to in terms relevant to 10-year-olds. Articulatory difficulties, even minor ones, were noted. Peers reflected on the risk to teasing and bullying and on how children with impaired speech might experience their situation. The SLPs and peers did not agree on minor signs of VPI, but they were unanimous in their analysis of clinically normal and more severely impaired speech. CONCLUSIONS: Articulatory impairments may be more important to treat than minor signs of VPI based on what peers say.

Long-term longitudinal follow-up of individuals with UCLP after Gothenburg twostage palate closure: surgical and speech outcomes.

BACKGROUND: Delayed hard palate closure in unilateral cleft lip and palate (UCLP) patients show on a safe surgical method and good speech outcome, however, occurrence of orally retracted articulation before hard palate closure at 8 years. The aim of this study was to describe surgical and speech outcome in UCLP patients closing the hard palate at 3 years. METHODS: A consecutive of 28 participants were operated with Gothenburg two-stage method including soft palate closure at 6 months and hard palate at 3 years. Surgical and speech outcome were evaluated. Recordings of sentences and spontaneous speech at 5, 10, 16, and 19 years were analyzed blindly and independently by three speech-language pathologists. Compensatory articulation, hypernasality, hyponasality, weak pressure consonants, and nasal air leakage were evaluated on ordinal four-point and intelligibility and perceived velopharyngeal function on three-point scales. RESULTS: Long-term follow-up revealed a safe surgical method. Articulation disorders were present in 25-30% at 5-year but largely not later. About 20% had incompetent velopharyngeal function at 5 years but none at 19 years. Most participants were well intelligible after 5 years. Hard palate closure at 3 years indicated less occurrence of orally retracted articulation compared with a cohort who had hard palate closure at 8.2 years. CONCLUSIONS: Long-term, follow-up of individuals with UCLP after Gothenburg two-stage palate closure including closure of the soft palate closure at 6 months and hard palate at 3 years of age shows a safe surgical method and indicates less retracted oral articulation compared with hard palate closure at 8 years.

Speech in 7- and 10-year-olds born with a unilateral cleft lip and palate: a continued prospective Swedish intercentre study.

The aim of this study was to report longitudinal speech results in consecutively selected children from each of the six cleft centres in Sweden and to compare the results between centres. The children were born with a non-syndromic unilateral cleft lip and palate, and results from the same cohort at 5 years of age have previously been reported. Background data on medical care in terms of surgery, speech therapy, and hearing between 5 and 10 years of age were collected. Speech recordings of 56 children at 7 years and 54 at 10 years of age were blindly and independently assessed by four speech-language pathologists experienced in cleft palate speech. This resulted in measures of percent consonant correct (PCC) and perceived velopharyngeal competence rated on a three-tier scale. No statistically significant differences were found between centres. PCC scores at 7 years of age ranged from 44-100% (median 97.5) and at 10 years of age from 86-100% (median 100). Competent or marginally incompetent velopharyngeal function was found in 95% of the 7-year-olds and 98% of the 10-year-olds. Speech results were slightly better than previous reports of speech in children born with a unilateral cleft lip and palate.

Reliability of data on percent consonants correct and its associated quality indicator in the Swedish cleft lip and palate registry.

BACKGROUND: Data in national health care quality registries must be valid and reliable in order to enable open comparisons of results. AIM: To assess the reliability of data on percent consonants correct (PCC) and its associated quality indicator ≥86% correct consonants in the Swedish quality registry for patients born with cleft lip and palate (CLP) registry. METHODS: Six independent speech-language pathologists re-assessed the audio recordings of 96 five-year-olds with PCC data in the CLP registry. Target consonants of a single-word picture-naming test were phonetically transcribed, and PCC was calculated. The reliability of PCC data was assessed with the intraclass correlation coefficient (ICC). The reliability of the quality indicator ≥86% correct consonants was assessed with point-by-point percentage agreement and Cohen's kappa. RESULTS: Intra- and inter-judge agreement for PCC was excellent with ICCs above 0.9, and so was the agreement of data from the CLP registry and the six judges' re-assessments. The percentage agreement between all judges and the CLP registry for the quality indicator ≥86% correct consonants was poor (67%). However, in 88% of the cases, results from four judges and the CLP registry agreed, corresponding to good agreement. The mean of all kappa values for six judges and the CLP registry corresponded to good agreement (0.72). CONCLUSIONS: The results indicate the PCC data in the CLP registry and the quality indicator ≥86% correct consonants to be reliable. When differences in outcome between treatment centres are detected, the raw data collected should always be re-examined before drawing definitive conclusions.

Communication experience of individuals treated with home mechanical ventilation.

BACKGROUND: Mechanical ventilatory support seriously affects speaking and communication, and earlier studies show that many ventilator-supported patients experience difficulties and frustration with their speech and voice production. Since there is a growing number of individuals who require mechanical ventilatory support and there is a paucity of studies that examine ventilator-supported communication, this research area needs to be developed to ensure adequate health services for this population. The present study focused on ventilator-supported communication from the point of view of individuals receiving home mechanical ventilation (HMV). AIMS: The specific aim was to examine the communication experience of individuals receiving HMV. METHODS & PROCEDURES: A qualitative approach was adopted for this study, and data were collected by means of semi-structured interviews. Qualitative content analysis was used to structure, condense and interpret the data. The participants were recruited from the National Respiratory Centre (NRC) in Sweden, and included 19 individuals receiving HMV. OUTCOMES & RESULTS: The main theme A long and lonely struggle to find a voice and six subthemes detailing different facets of it emerged from data analysis: Managing changed speech conditions, Prioritising voice, A third party supporting communication, Using communication to get things done, Depending on technology, and Facing ignorance. Important aspects influencing the ventilator-supported individuals' communicative performance (speech, support from others and technological solutions) are discussed. CONCLUSIONS & IMPLICATIONS: The study revealed that healthcare practitioners involved in the care of individuals receiving HMV need to improve their understanding and knowledge of issues related to ventilator-supported communication. Individuals receiving HMV encounter a needlessly long and lonely struggle to achieve effective communication. They face numerous challenges regarding their communication, and they need to be heard in both literal and figurative senses. To overcome these challenges they need support from competent healthcare practitioners and personal assistants, and continuous follow-up by speech and language therapists tailoring communicative solutions to fit individual needs.

Taking charge of communication: adults' descriptions of growing up with a cleft-related speech impairment.

OBJECTIVE: To obtain descriptions of the experience of growing up with a cleft-related speech impairment and how it was dealt with. DESIGN: Semistructured interviews were tape-recorded, transcribed verbatim, and analyzed using a qualitative approach inspired by grounded theory methodology. SETTING: Interviews took place at participants' homes or workplaces or at the university. PARTICIPANTS: Thirteen young adults (25 to 34 years of age) born with cleft palate with or without cleft lip. RESULTS: The analysis resulted in the core category Taking charge of communication, which comprised three main categories: Forming an idea of one's speech, Learning about one's communication, and Taking responsibility for communication. The first main category was made up of three subcategories and the other two had two. The categories emerged as parallel processes in the understanding and active handling of communicative interaction. CONCLUSIONS: The participants described the processes that had enabled them to take charge of their communication. Seeing things from the listener's perspective and being open about the cleft and the speech disorder emerged as important parts of taking active responsibility for communication, as well as accepting their present speech and communication. Communicative participation should be assessed more thoroughly to understand the individual needs of people born with a cleft who have a speech impairment into adolescence.

Palatal augmentation prostheses in individuals treated for head and neck cancer: Effects on speech and oral transport.

BACKGROUND: Negative side effects affecting articulation and oral transport are common after treatment for head and neck cancer (HNC). The aim of this study was to assess the effects on speech and patient-reported experience of palatal augmentation prostheses (PAP) in this patient group. METHODS: Twenty consecutive patients who had received a PAP were included. We performed a blinded randomized listener assessment of recordings of the patients' speech with and without the PAP. Patient-reported experiences were collected from medical records. RESULTS: The listener assessment showed that production of velar sounds improved significantly for 12 of 19 patients; 12 of 19 patients also reported easier or better speech with the PAP. All six patients treated for tongue cancer reported speech improvement. Seven of 20 patients reported better transport of food or saliva. CONCLUSION: A PAP can help patients treated for HNC to more precisely articulated velar consonants and can benefit oral transport.

Surgical, speech, and hearing outcomes at five years of age in internationally adopted children and Swedish-born children with cleft lip and/or palate.

Internationally adopted children (IAC) with a cleft lip and/or palate (CL/P) tend to arrive with un-operated palates at an age at which their Swedish-born peers have completed their primary palate surgery. Our aim of the present study was to analyze surgical, speech and hearing outcomes of IAC at age 5 and compare with those of a matched group of Swedish-born children. Fifty children with CL/P born in 1994-2005 participated in the study. Twenty-five IAC were matched according to age, sex and cleft type with 25 Swedish-born children. Audio recordings were perceptually analyzed by two experienced, blinded speech-language pathologists. Hearing and speech statuses were evaluated on the same day for all children. Surgical timing and complications as in fistulas and requirement for secondary velopharyngeal (VP) surgery, speech evaluation results, and present hearing status were analyzed for all children of age 5 years. Results showed that primary palatal surgery was delayed by a mean of 21 months in IAC. IAC had a higher prevalence of velopharyngeal impairment that was statistically significant, a higher fistula rate, and experienced more secondary surgery than Swedish-born peers. Hearing loss due to middle ear disease was slightly more common among IAC, whereas the rate of treatment with tympanostomy tubes was similar between the two groups. In conclusion, IAC with CL/P represent a challenge for CL/P teams because of the heterogeneous nature of the patient group and difficulties associated with delayed treatment, and the results show the importance of close follow-up over time.

The Communication Attitude Test (CAT-S): normative values for 220 Swedish children.

BACKGROUND: The risk of developing a negative attitude to communication as a consequence of having a speech disorder has been in focus for decades in research concerning fluency disorders in relation to both children and adults. The Communication Attitude Test (CAT), which was created to measure children's attitudes towards their own communication, has been widely used. Research has shown that children who stutter have a significantly more negative attitude to their own communication than normal-speaking children and preliminary results show a similar picture in children with other types of speech disorders. However, the setting for obtaining data on normal-speaking children often differs from that on children with speech disorders. In order to make a significant interpretation of results from children with a speech disorder, comparable data on normal-speaking children are needed. AIMS: The main purpose of this study was to obtain norm values for the Swedish version of the test (CAT-S) and examine possible differences related to age, sex or small town/big city. A second aim was to investigate some aspects of reliability, such as internal consistency, and validity in terms of item analysis as well as a qualitative analysis of the answers to the different items. In addition, group setting was compared with individual setting for the test procedure. METHODS & PROCEDURES: CAT-S was completed in a group setting by 220 normal-speaking children aged 7-15 years and by an additional group of 35 normal-speaking 10-year-old children who completed the test individually. OUTCOMES & RESULTS: The 220 Swedish children had a mean score of 6.05 (a slightly higher mean score have been found in other countries, i.e. Belgium = 7.05 and USA = 8.24). The 7-year-olds had a significantly higher mean score than children at the other ages, except for the 15-year-olds. No other differences were found related to age, sex or size of community. The aspects of reliability and validity investigated for the CAT-S were satisfactory. Furthermore, there was no significant difference between the groups of 10-year-olds objected to different test procedures. CONCLUSIONS & IMPLICATIONS: The norm values of CAT-S could be used for comparison of scores from Swedish children with speech disorders. The CAT-S is easy to administer and could be used either in a group setting for research purpose or individually at the clinic.

Speech in 5-year-olds born with unilateral cleft lip and palate: a Prospective Swedish Intercenter Study.

Studies on the impact of cleft palate surgery on speech with stringent methodology are called for, since we still do not know the best timing or the best method for surgery. The purpose was to report on speech outcome for all Swedish-speaking 5-year-olds born with a non-syndromic unilateral cleft lip and palate (UCLP), in 2008-2010, treated at Sweden's six cleft palate centres, and to compare speech outcomes between centres. Speech was assessed in 57 children with percent consonants correct adjusted for age (PCC-A), based on phonetic transcriptions from audio recordings by five independent judges. Also, hypernasality and perceived velopharyngeal function were assessed. The median PCC-A for all children was 93.9, and medians in the different groups varied from 89.9 to 96.8. In the total group, 9 children (16%) had more than mild hypernasality. Twenty-two children (38.5%) were perceived as having competent/sufficient velopharyngeal function, 25 (44%) as having marginally incompetent/insufficient velopharyngeal function, and 10 children (17.5%) as having incompetent/insufficient velopharyngeal function. Ten children were treated with secondary speech improving surgery and/or fistula surgery. No significant differences among the six groups, with eight to ten children in each group, were found. The results were similar to those in other studies on speech of children with UCLP, but poorer than results in normative data of Swedish-speaking 5-year-olds without UCLP. Indications of differences in frequency of surgical treatment and speech treatment between centres were observed.

Speech and satisfaction with outcome of treatment in young adults with unilateral or bilateral complete clefts.

Thirty-five young adults (22-32 years old, mean 25) born with complete unilateral or bilateral clefts participated in a follow-up of speech, appearance, and teeth after treatment. They completed a questionnaire about their satisfaction with their speech, nose, lip, and teeth on visual analogue scales, and indicated on two overall questions how often they thought about their cleft, and how often they were asked questions about their speech, nose, or lip. Their speech was recorded and assessed blindly and independently by two speech and language pathologists. Participants' satisfaction with their speech did not correlate significantly with the speech assessments. Satisfaction with the nose had the highest correlation with the overall questions. No participant indicated more dissatisfaction with speech than the midpoint of the scale, making conclusions about covariance between satisfaction with speech and the overall questions difficult.

Effects of Voice Therapy: A Comparison Between Individual and Group Therapy.

OBJECTIVE: The primary aim of this clinical evaluation project is to study the effect of voice therapy given in the speech-language pathology clinic, as individual and group therapy, as well as finding out some of the reasons for not attending the recommended therapy. METHOD: All patients visiting the speech-language department during the study period were asked to participate in a clinical evaluation project. The project included filling out the questionnaire Swedish Voice Handicap Index (VHI-11) twice: at their first visit at the clinic, and approximately 1 year later. Depending on the degree of voice problems, the patients were offered either individual or group therapy. RESULT: The study included 187 patients at their first visit to the clinic and 109 patients at follow-up. All participants completed self-evaluation of voice function with the VHI-11 and separate questions regarding overall voice problems, hoarseness, and vocal fatigue. For the patients who responded to the follow-up survey, statistically significant improvements of self-perceived voice function were demonstrated in individual and group therapy. The improvement between the first visit and the follow-up was found to be of moderate to large effect size, with statistically significant improvements for both patients who attended individual therapy and those who attended group therapy. The most common reason for not attending the recommended voice therapy was lack of time. CONCLUSION: Individual and group therapy is effective, resulting in improved VHI-11 scores. The magnitude of improvement is similar when comparing individual and group therapy. Patients with higher scores of the VHI-11 were generally recommended individual voice therapy.

Scandcleft randomised trials of primary surgery for unilateral cleft lip and Palate: 9. Parental report of social and emotional experiences related to their 5-year-old child's cleft diagnosis.

BACKGROUND AND AIM: Parents of children with a cleft lip and palate may be emotionally affected by the child's diagnosis. Their experiences and perceptions are important when evaluating the complexity of satisfactory treatment outcomes. The objective was to examine parents' social and emotional experiences related to their child's cleft diagnosis, and their perceptions of the child's adjustment to living with a visible difference. DESIGN: International multicentre study by 10 cleft teams in five countries: Denmark, Finland, Sweden, Norway, and the UK. METHODS: A cohort of 448 children born with a non-syndromic UCLP were included. A total of 356 parents completed the Scandcleft Parent Questionnaire. RESULTS: The majority of parents experienced practical and emotional support from family, friends, and health professionals. Nevertheless, parents had to cope with other people's reactions to the cleft, experiences that were described as ranging from hurtful to neutral and/or positive. According to parents, 39% of the children had experienced cleft-related comments and/or teasing. More than half of the parents reported specific worries related to their child's future. CONCLUSION: While the majority of the parents experienced positive support and coped well with the child's diagnosis, some parents were at risk for psychological and emotional challenges that should be identified by the cleft team. To optimise outcomes and the child's adjustment, these parents should be offered psychological support when necessary. TRIAL REGISTRATION: ISRCTN29932826.