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1.
Dev Neuropsychol ; 49(2): 61-85, 2024.
Article in English | MEDLINE | ID: mdl-38414409

ABSTRACT

Children with cleft lip and/or palate were assessed for speech, language, phonological awareness (PA), rapid naming (RN) and reading ability using standardized instruments at baseline (T1; N = 142, Mage = 6.14 years, 51% males) and 2-year follow-up (T2; 89% retention, Mage = 8.38). Children with no speech or language risk scored higher for T1 and T2 PA, RN, and reading than children with both speech and language risk [Adjusted Mean Difference (AMD) ranged from 11.79 to 21.25]; language risk (AMD 8.37 to 13.58); and speech risk (0.51 to 6.87). No significant differences by cleft type or child sex.


Subject(s)
Cleft Lip , Cleft Palate , Male , Child , Humans , Female , Cleft Lip/complications , Speech , Cleft Palate/complications , Reading
2.
Cleft Palate Craniofac J ; : 10556656231225304, 2024 Jan 09.
Article in English | MEDLINE | ID: mdl-38196373

ABSTRACT

OBJECTIVES: (1) Assess caregiver-reported development in infants born with cleft lip ± alveolus (CL ± A) and cleft lip and palate (CLP); (2) determine factors associated with increased developmental risk; and (3) determine consistency of developmental risk before and after surgery for cleft lip. DESIGN: Prospective, longitudinal assessment of development. Time (T) 1, prior to lip closure; T2, 2 months post lip closure. SETTING: Three US craniofacial teams and online parent support groups. PARTICIPANTS: 123 total caregivers (96% mothers); 100 at T1, 92 at T2, and 69 at both T1 and T2. MEASURE: Ages and Stages Questionnaire-3 (ASQ-3): Communication, Gross Motor, Fine Motor, Problem Solving, Personal Social Domains. RESULTS: At T1 47%; at T2 42% passed all 5 Domains; 36% of infants pass all 5 Domains at both T1 and T2. Infants with CLP were at greatest risk on Communication [B = 1.449 (CI = .149-20.079), p = .038; Odds Ratio (OR) = 4.3 (CI = .923-19.650)] and Gross Motor Domains [B = 1.753 (CI = .316-20.605), p = .034; OR = 5.8 (CI = 1.162-28.671)]. Male infants were at greatest risk on Fine Motor [B = 1.542 (CI = .495-20.005), p = .009; OR = 4.7 (CI = 1.278-17.101)] and Problem Solving Domains [B = 1.200 (CI = .118-19.708), p = .044; OR = 3.3 (CI = .896-12.285)]. CONCLUSIONS: Based on caregiver report, infants with CL ± A and CLP meet referral criteria at a high rate. Infants with CLP and male infants were at greatest risk. Regular developmental screening is recommended.

3.
Cleft Palate Craniofac J ; 61(1): 68-78, 2024 01.
Article in English | MEDLINE | ID: mdl-35892129

ABSTRACT

This study evaluated the effectiveness of academic screening measures in relation to parent-reported diagnoses.Multicenter, retrospective cohort study including structured interviews, questionnaires, and chart reviews.Six North American cleft centers.Children (n = 391) with cleft lip and/or palate, ages 8 to 10 years of age (192 male) and their guardians were recruited during regular clinic visits.Parent and child ratings on the Pediatric Quality of Life Inventory (PedsQL) School Scale, child report on CleftQ School Scale, parent report on the Adaptive Behavior Assessment System-Third Edition Functional Academics (ABAS-FA) Scale and Child Behavior Checklist (CBCL) School Competency Scale, parent interview, and medical chart review.Risk for concerns ranged from 12% to 41%, with higher risk reflected on the CBCL-SC compared to other measures. Males with cleft palate were consistently at the highest risk. Only 9% of the sample had a parent-reported diagnosis of a learning or language disability. Ratings from the ABAS-FA and CBCL-SC had the highest utility in identifying those with language and/or learning concerns.As cleft teams work to develop standardized batteries for screening and monitoring of patients, it is important to evaluate the effectiveness of measures in identifying those at highest risk. When screening for language and learning disorders, questions related to potential academic struggles, such as increased school effort or increased school distress, are most useful. Referrals for follow-up evaluation are recommended for those identified at high risk.


Subject(s)
Cleft Lip , Cleft Palate , Child , Humans , Male , Quality of Life , Retrospective Studies , Students , Female
4.
Cleft Palate Craniofac J ; : 10556656231181581, 2023 Jun 22.
Article in English | MEDLINE | ID: mdl-37350106

ABSTRACT

OBJECTIVE: To determine associations of demographic, morphologic, and treatment protocol parameters with quality of life (QoL), appearance/speech satisfaction, and psychological adjustment. DESIGN: Observational study utilizing retrospective report of protocol variables and current outcome variables. SETTING: Six North American cleft treatment clinics. PARTICIPANTS: Children, ages 8.0-10.99 years, with Cleft Lip ± Alveolus, Cleft Palate, Cleft Lip and Palate, and parents (N = 284). OUTCOME MEASURES: Pediatric QoL Inventory (PedsQL): Parent, Child, Family Impact Module (FIM); Patient Reported Outcome Measurement Information System (PROMIS); Child Behavior Checklist (CBCL); CLEFT-Q. RESULTS: Outcome scores were average with few differences by cleft type. Multiple regression analyses yielded significant associations (Ps < .05) between socioeconomic status, race, and age at assessment and parent- and self-reported measures. Females had higher PROMIS Depression (ß=.20) but lower CBCL Affective (ß = -.16) and PROMIS Stigma scores (ß= -.24). Incomplete cleft lip was associated with lower PROMIS Depression, and more positive ratings of CLEFT-Q: Nose, Nostril, Lip Scar; CBCL Competence scores, (ßs = -.17 to .17). Younger Age at Lip Closure was associated with higher CBCL School Competence (ß= -.18). Younger Age at Palate Closure was associated with higher Child PedsQL Total, Physical, Psychosocial QoL, and better CLEFT-Q Speech Function (ßs = -.18 to -.15). Furlow Palatoplasty was associated with more CBCL Externalizing Problems (ß = .17) higher CBCL Activities (ß = .16). For all diagnoses, fewer Total Cleft-Related Surgeries was associated with lower PROMIS Stigma and higher CBCL Total Competence and Activities (ßs = -.16 to .15). CONCLUSIONS: Demographic characteristics, lip morphology, and treatment variables are related to later psychological functioning.

5.
Cleft Palate Craniofac J ; 60(11): 1474-1483, 2023 11.
Article in English | MEDLINE | ID: mdl-35675171

ABSTRACT

This observational, multisite cohort study explored health-related quality of life (HRQoL) in children with cleft lip and/or palate (CL/P), including interrater agreement and ratings for this group relative to clinical cutoff scores and published means for healthy and chronically ill children.Participants (338 children ages 8-10 years, 45.9% male and their parents, 82.0% female) across 6 sites completed the Pediatric Quality of Life Inventory Generic Core Scales (PedsQL).Intraclass correlation revealed poor interrater agreement for most HRQoL domains. Although ratings were generally higher than those expected for children with a chronic illness, child ratings were below healthy means for school functioning, and parent proxy ratings were below healthy means for all domains except physical functioning. Lower ratings consistent with chronic illness means were found for self-reported emotional and psychosocial functioning in children with cleft lip and palate (CLP), as well as parent proxy-reported emotional, school, and psychosocial functioning for children with cleft palate (CP). Scores were most likely to be in the clinical range for children with CP for social, school, and total functioning.Although parent proxy report provides important information about observed functioning, poor interrater agreement indicates that both child and parent proxy reported HRQoL should be included in outcomes assessment for CL/P. HRQoL ratings may be higher for children with CL/P compared to youth with other chronic illnesses, but psychosocial functioning may be negatively impacted when compared with healthy youth, particularly for emotional, social, and school functioning in children with CLP or CP.


Subject(s)
Cleft Lip , Cleft Palate , Adolescent , Child , Humans , Male , Female , Quality of Life/psychology , Cleft Lip/psychology , Cleft Palate/psychology , Cohort Studies , Parents/psychology , Chronic Disease
6.
Cleft Palate Craniofac J ; 60(8): 1032-1040, 2023 08.
Article in English | MEDLINE | ID: mdl-35341357

ABSTRACT

Caregiver and observer-reported measures are frequently used as outcomes for research on infants and young children who are unable to report on their own health. Our team developed the Infant with Clefts Observation Outcomes Instrument (iCOO) for infants with cleft lip with or without cleft palate. This exploratory study compared test-retest and interrater reliabilities to inform whether differences in caregiver perspective might affect the iCOO.This study is a secondary analysis comparing caregiver interrater agreement to test-retest reliability. Twenty-five pairs of caregivers completed the iCOO before surgery, 1 week later for test-retest reliability, 2 days after surgery, and 2 months after surgery. Reliability was assessed using intraclass correlations (ICCs) and t-tests were used to compare ratings between caregivers.Infants had cleft lip (28%) or cleft lip and palate (72%). Primary caregivers were predominantly mothers (92%) and secondary caregivers were predominantly fathers (80%). Test-retest reliability met psychometric standards for most items on the iCOO (81%-86% of items). Caregiver agreement on the iCOO items was lower than test-retest reliability (33%-46% of items met psychometric standards). Caregivers did not systematically differ in whether they rated infants as healthier or less healthy than the other caregiver (5%-16% of items had statistically significant differences).Caregivers used the measure consistently, but had different experiences and perceptions of their infant's health and functioning. Future studies are needed to explore mechanisms for the differences in test-retest and interrater reliability. Whenever possible, the same caregiver should provide ratings of the infant, including on the iCOO.


Subject(s)
Cleft Lip , Cleft Palate , Child , Female , Humans , Infant , Child, Preschool , Cleft Lip/surgery , Caregivers , Cleft Palate/surgery , Reproducibility of Results , Mothers
7.
Cleft Palate Craniofac J ; : 10556656221125371, 2022 Sep 15.
Article in English | MEDLINE | ID: mdl-36112919

ABSTRACT

OBJECTIVE: To evaluate the sensitivity to change of daily ratings of the comfort (COMF) and behavioral/emotional health (BEH) domains of the Infants with Clefts Observation Outcomes Instrument (iCOO) at 3 time points, and to assess the association of post-surgical interventions on iCOO ratings. DESIGN: The COMF and BEH domains were completed by caregivers before (T0), immediately after (T1), and 2-months after (T2) cleft lip (CL) surgery. Analyses included descriptive statistics, correlations, t-tests, and generalized estimating equations. PARTICIPANTS: Caregivers (N = 140) of infants with CL with/without cleft palate. MAIN OUTCOME MEASURES: The COMF and BEH domain scores of the iCOO: Scale (SCALE), a summary of observable signs; and Global Impression (IMPR), a single item measuring caregivers' overall impression. RESULTS: Daily COMF and BEH SCALE and IMPR scores changed significantly during T1 (P's < 0.001) but not T0 or T2. Day 1 and 7 T0 scores were significantly higher than Day 1 and 7 T1 scores (P's <0.001 to <0.012) but similar at T2 (P's > 0.05). After CL surgery, the combined use of immobilizers and nasal stents and the use of multiple feeding methods with treatment for gastroesophageal reflux were associated with lower daily scores in COMF and BEH SCALE and IMPR (P's: 0.040 to <0.001). CONCLUSIONS: COMF and BEH iCOO scores were sensitive to daily changes in infant well-being following CL surgery. Future studies should further investigate impact of post-surgical treatments on infant well-being.

8.
Cleft Palate Craniofac J ; 59(10): 1233-1245, 2022 10.
Article in English | MEDLINE | ID: mdl-34514868

ABSTRACT

OBJECTIVE: We evaluated the measurement properties for item and domain scores of the Infant with Clefts Observation Outcomes Instrument (iCOO). DESIGN: Cross-sectional (before lip surgery) and longitudinal study (preoperative baseline and 2 days and 2 months after lip surgery). SETTING: Three academic craniofacial centers and national online advertisements. PARTICIPANTS: Primary caregivers with an infant with cleft lip with or without cleft palate (CL ± P) scheduled to undergo primary lip repair. There were 133 primary caregivers at baseline, 115 at 2 days postsurgery, and 112 at 2 months postsurgery. MAIN OUTCOME MEASURE(S): Caregiver observation items (n = 61) and global impression of health and function items (n = 8) across eight health domains. RESULTS: Mean age at surgery was 6.0 months (range 2.7-11.8 months). Five of eight iCOO domains have scale scores, with Cronbach's alphas ranging from 0.67 to 0.87. Except for the Facial Skin and Mouth domain, iCOO scales had acceptable intraclass correlation coefficients (ICCs) ranging from 0.76 to 0.84. The internal consistency of the Global Impression items across all domains was 0.90 and had acceptable ICCs (range 0.76-0.91). Sixteen out of 20 (nonscale) items had acceptable ICCs (range 0.66-0.96). As anticipated, iCOO scores 2 days postoperatively were generally lower than baseline and scores 2 months postsurgery were consistent with baseline or higher. The iCOO took approximately 10 min to complete. CONCLUSIONS: The iCOO meets measurement standards and may be used for assessing the impact of cleft-related treatments in clinical research and care. More research is needed on its use in various treatment contexts.


Subject(s)
Cleft Lip , Cleft Palate , Child , Child, Preschool , Cleft Lip/surgery , Cleft Palate/surgery , Cross-Sectional Studies , Humans , Infant , Longitudinal Studies
9.
Cleft Palate Craniofac J ; 58(10): 1294-1303, 2021 10.
Article in English | MEDLINE | ID: mdl-33380226

ABSTRACT

OBJECTIVE: The purpose of this study was to evaluate possible relationships between number of surgeries and parent ratings of academic functioning among children with isolated oral clefts. DESIGN: Multicenter, retrospective cohort study including structured interviews, questionnaires, and chart reviews. SETTING: Completion of questionnaires occurred during clinical visits at 6 different cleft centers across North America. PARTICIPANTS: Parents of 285 children with isolated clefts of the lip and/or palate, aged 8 to 10 years old, participated in structured interviews and completed questionnaires regarding the academic and behavioral functioning of their children. MAIN OUTCOME MEASURES: Parent interview and medical chart review of number of surgeries to date and parent ratings on the Adaptive Behavior Assessment System, Third Edition-Functional Academics Scale (ABAS-FA) and Child Behavior Checklist (CBCL) Total Competency Scale. RESULTS: Parent ratings of ABAS-FA were at or above normative expectations, while ratings across CBCL Competency Scales were lower than normative expectations. Socioeconomic status (SES), age, and race were consistent predictors of parent ratings (higher SES, older age, and Caucasian race were associated with better functioning). Number of surgeries did not add significantly to academic ratings but did significantly contribute to ratings of social and activity participation. Patients with more surgeries were rated with lower functioning in these domains. CONCLUSIONS: Findings do not support a connection between number of surgeries and later ratings of academic functioning but do support a connection to social and activity involvement. Recommendations for conducting direct studies of the connection between surgeries and academic functioning as well as clinical considerations for surgeries and impact on social and activity involvement are discussed.


Subject(s)
Cleft Palate , Aged , Child , Cleft Palate/surgery , Humans , Parents , Retrospective Studies , Social Class , Surveys and Questionnaires
10.
Front Neurosci ; 14: 608757, 2020.
Article in English | MEDLINE | ID: mdl-33328876

ABSTRACT

The less rigid architecture of sleep in patients with narcolepsy type 1 (NT1) compared with healthy subjects may provide new insights into some unresolved issues of dream experience (DE), under the assumption that their DE frequencies are comparable. The multiple transition from wakefulness to REM sleep (sleep onset REM period: SOREMP) during the five trials of the Multiple Sleep Latency Test (MSLT) appears of particular interest. In MSLT studies, NT1 patients reported a DE after about 80% of SOREMP naps (as often as after nighttime REM sleep of themselves and healthy subjects), but only after about 30% of NREM naps compared to 60% of daytime and nighttime NREM sleep of healthy subjects. To estimate accurately the "real" DE frequency, we asked participants to report DE ("dream") after each MSLT nap and, in case of failure, to specify if they were unable to retrieve any content ("white dream") or DE did not occur ("no-dream"). The proportions of dreams, white dreams, and no dreams and the indicators of structural organization of DEs reported after NREM naps by 17 adult NT1 patients were compared with those reported by 25 subjects with subjective complaints of excessive daytime sleepiness (sc-EDS), who take multiple daytime NREM naps. Findings were consistent with the hypothesis of a failure in recall after awakening rather than in generation during sleep: white dreams were more frequent in NT1 patients than in sc-EDS subjects (42.86 vs 17.64%), while their frequency of dreams plus white dreams were similar (67.86 and 61.78%) and comparable with that of NREM-DEs in healthy subjects. The longer and more complex NREM-DEs of NT1 patients compared with sc-EDS subjects suggest that the difficulty in DE reporting depends on their negative attitude toward recall of contents less vivid and bizarre than those they usually retrieve after daytime SOREMP and nighttime REM sleep. As this attitude may be reversed by some recall training before MSLT, collecting wider amounts of DE reports after NREM naps would cast light on both the across-stage continuity in the functioning of cognitive processes underlying DE and the difference in content and structural organization of SOREM-DEs preceded by N1 or also N2 sleep.

11.
Cleft Palate Craniofac J ; 57(11): 1266-1279, 2020 11.
Article in English | MEDLINE | ID: mdl-32468839

ABSTRACT

OBJECTIVE: To develop an outcomes instrument that assesses observations that can be reliably reported by caregivers and can be used to assess health of infants with a cleft lip or cleft lip and cleft palate (CL±P) and impacts of treatments. DESIGN: Cross-sectional, mixed methods study. SETTING: Caregivers and health-care providers were recruited from 3 academic craniofacial centers and national advertisements. Most interviews were conducted by telephone, and surveys were completed online. PARTICIPANTS: Caregivers had a child less than 3 years of age with CL±P and spoke either English or Spanish. Health-care providers were members of a cleft team. Caregivers (n = 492) and health-care professionals (n = 75) participated in at least one component of this study. MAIN OUTCOME MEASURE(S): Caregivers and health-care providers participated in tasks related to instrument development: concept elicitation for items within relevant health domains, prioritization of items, and item review. RESULTS: We identified 295 observations of infant well-being across 9 health areas. Research staff and specialists evaluated items for clarity, specificity to CL±P, and responsiveness to treatment. Caregivers and health-care providers rated the resulting list of 104 observations and developed the final instrument of 65 items. CONCLUSIONS: In this phase of development of the Infant with Clefts Observation Outcomes (iCOO) instrument, items were developed to collect caregiver observations about indicators of children's health and well-being across multiple domains allowing for psychometric testing, sensitivity to changes associated with treatment, and documentation of the effects of treatment.


Subject(s)
Cleft Lip , Cleft Palate , Child , Cross-Sectional Studies , Humans , Infant , Outcome Assessment, Health Care , Surveys and Questionnaires
12.
Sleep ; 43(8)2020 08 12.
Article in English | MEDLINE | ID: mdl-32055854

ABSTRACT

STUDY OBJECTIVE: To assess the frequency of dream experience (DE) developed during naps at Multiple Sleep Latency Test (MSLT) by patients with narcolepsy type 1 (NT1) and establish, using story-grammar analysis, the structural organization of DEs developed during naps with sleep onset rapid eye movement (REM) period (SOREMP) sleep compared with their DEs during early- and late-night REM sleep. METHODS: Thirty drug-free cognitively intact adult NT1 patients were asked to report DE developed during each MSLT nap. Ten NT1 patients also spent voluntarily a supplementary night being awakened during the first-cycle and third-cycle REM sleep. Patients provided dream reports, white dreams, and no dreams, whose frequencies were matched in naps with SOREMP versus non-REM (NREM) sleep. All dream reports were then analyzed using story-grammar rules. RESULTS: DE was recalled in detail (dream report) by NT1 patients after 75% of naps with SOREMP sleep and after 25% of naps with NREM sleep. Dream reports were provided by 8 out of 10 NT1 patients after both awakenings from nighttime REM sleep. Story-grammar analysis of dream reports showed that SOREMP-DEs are organized as hierarchically ordered sequences of events (so-called dream-stories), which are longer and more complex in the first and fourth SOREMP naps and are comparable with nighttime REM-DEs. CONCLUSIONS: The similar structural organization of SOREMP-DEs with nighttime REM-DEs indicates that their underlying cognitive processes are highly, albeit not uniformly, effective during daytime SOREMP sleep. Given the peculiar neurophysiology of SOREMP sleep, investigating SOREMP-DEs may cast further light on the relationships between the neurophysiological and psychological processes involved in REM-dreaming.


Subject(s)
Narcolepsy , Sleep, REM , Adult , Dreams , Humans , Polysomnography , Sleep
13.
Cleft Palate Craniofac J ; 56(5): 646-657, 2019 05.
Article in English | MEDLINE | ID: mdl-30092661

ABSTRACT

OBJECTIVE: To explore, using semistructured qualitative interviews, parent observations of their infant's health as they relate to having a cleft lip or cleft lip and cleft palate (CL±P) and/or associated treatments. DESIGN: Cross-sectional, qualitative study across 3 sites. SETTING: Parents were recruited from 3 academic craniofacial centers. Most interviews were conducted over the telephone, audio-recorded, and transcribed. PARTICIPANTS: Forty-one parents (31 English-, 10 Spanish-speaking) were interviewed. Parents had a child ages 1 to 35 months diagnosed with CL±P. MAIN OUTCOME MEASURE(S): Twelve domains reflecting infant health and well-being, likely affected by a CL±P and/or associated treatments, were identified from clinical experience and literature review. Study investigators conducted semistructured interviews based on 12 identified domains. After transcripts of the interviews were reviewed, our multidisciplinary team selected illustrative quotes from each domain that reflected consistent observations made by parents. RESULTS: Parents' responses covered all 12 domains. Specifically, parents discussed the domain of feeding most frequently, followed by observations about sleep, development, comfort, breathing, and vocalization. CONCLUSIONS: We found that parents of infants with clefts provided caregiver-centered language useful in describing their daily observations. No additional domains of infant health were noted by parents. We will use these observations and language to develop and validate a parent-reported observation diary that can augment assessments of the impacts of interventions on infants who are receiving care for CL±P.


Subject(s)
Health Status , Child, Preschool , Cleft Lip , Cleft Palate , Cross-Sectional Studies , Humans , Infant , Male , Parents
14.
Cleft Palate Craniofac J ; 55(9): 1225-1235, 2018 10.
Article in English | MEDLINE | ID: mdl-29620917

ABSTRACT

OBJECTIVE: The objective of this study was to investigate the impact of international adoption (IA), age at palatoplasty (PR age), and velopharyngeal sufficiency (VPS) on articulation outcomes. DESIGN: This was a cross-sectional, prospective, observational study. SETTING: Outpatient hospital clinic. PARTICIPANTS: Fifty-one IA and 65 not-adopted (NA) children between the ages of 3 and 9 with nonsyndromic cleft palate with or without cleft lip. MAIN OUTCOME MEASURE(S): The Goldman-Fristoe Test of Articulation-2nd Edition (GFTA-2) standard score and cleft-related articulation errors (CREs). RESULTS: Articulation impairment was observed for 40% to 76% of NA children and 71% to 92% IA children, depending on age. PR age mean IA = 2.07 (0.86) years; NA = 1.23 (0.71) years. Children who were IA had poorer performance on the GFTA-2 ( B = -13.82, P = .015). Children who were IA were not significantly more likely to make CRE; rather, age at the time of assessment ( B = -.10, P = .002) and VPS ( B = .24, P = .021) were associated with CRE. CONCLUSIONS: Children who were IA demonstrated poorer articulation skills. Although primary palatoplasty was accomplished later among children who were IA, age at assessment and VP status (not PR age) were significantly correlated with articulation outcomes. Implications for timing of surgical intervention are discussed.


Subject(s)
Articulation Disorders/etiology , Child, Adopted , Cleft Palate/complications , Cleft Palate/surgery , Velopharyngeal Insufficiency/etiology , Child , Child, Preschool , Cross-Sectional Studies , Female , Humans , Male , Prospective Studies , Speech Production Measurement
15.
Am J Speech Lang Pathol ; 26(2): 342-354, 2017 May 17.
Article in English | MEDLINE | ID: mdl-28329403

ABSTRACT

PURPOSE: The purpose of this study was to determine whether language skills differed between children with cleft palate or cleft lip and palate (CP±CL) who were adopted into an English-speaking home from a non-English-speaking country (late English exposure [LE]) and children with CP±CL raised from birth in an English-speaking home (early English exposure [EE]). METHOD: Children (51 LE, 67 EE), ages 3;0 (years;months) to 9;0, completed the Clinical Evaluation of Language Fundamentals (CELF), Preschool Second Edition or Fourth Edition. Linear regression analysis was used to assess the impact of age of adoption and time in an English-speaking home on language skills, as measured by the CELF-P2 and CELF-4. RESULTS: Children with CP±CL who were adopted scored less well on all language indices, with mean adjusted differences between LE and EE children ranging from 0.4 to 0.7 SD on the CELF index scales. Only 53% of the EE children and 57% of the LE children obtained scores above 90 on all indices. For LE children, younger age at adoption was associated with better language skills. CONCLUSION: CP±CL increases risk for language delay, with the highest risk for LE children. LE children with CP±CL should receive language services soon after adoption.


Subject(s)
Child, Adopted , Cleft Lip/diagnosis , Cleft Palate/diagnosis , Cross-Cultural Comparison , Language Development Disorders/diagnosis , Multilingualism , Child , Child, Preschool , Female , Humans , Male , Risk Factors
16.
Clin Pract Pediatr Psychol ; 5(1): 65-76, 2017 Mar.
Article in English | MEDLINE | ID: mdl-31511822

ABSTRACT

Cleft lip and/or palate (CL/P) are among the most common of all birth defects. Habilitation requires multiple surgeries and other therapies throughout childhood and adolescence. While multidisciplinary care is recommended, there is a great deal of variation in treatment protocols for this condition. There is ample evidence that children with CL/P are at risk for psychosocial problems. However, to date, few studies have systematically investigated parent and patient self-reported psychosocial and quality of life (QOL) outcomes for children with CL/P as they relate to variations in treatment protocols. The Americleft Outcomes project was initiated to demonstrate and document outcomes to be expected with team care, and to define the key features or characteristics of various team treatment protocols and procedures that are associated with more or less favorable/desirable outcomes. This article will describe the psychosocial component of the Americleft Outcomes project that is aimed at developing a protocol that will allow cross team assessment of psychosocial outcomes for children with CL/P in relationship to the treatments they received. The protocol will be detailed along with a description of the process and considerations that were instrumental in the development of the project. Stakeholder input about the project's perceived relevance to families of children with CL/P will be reported. The paper concludes with a discussion of the challenges encountered with this project, clinical implications, and future directions.

17.
J Craniofac Surg ; 26(5): 1574-80, 2015 Jul.
Article in English | MEDLINE | ID: mdl-26114527

ABSTRACT

The aim of this study was to identify factors associated with youth satisfaction with surgical procedures performed to address oral cleft or craniofacial conditions (CFCs). It was hypothesized that youth mental health, participation in decision making, perceived consequences of living with a CFC, and coping strategies would be associated with satisfaction with past surgeries. A total of 203 youth between the ages of 11 and 18 years (mean age = 14.5, standard deviation = 2.0, 61% male participants, 78% oral cleft) completed a series of questionnaires measuring depression, self-esteem, participation in decision making, condition severity, negative and positive consequences of having a CFC, coping, and satisfaction with past surgeries. Multiple regression analysis using boot-strapping techniques found that youth participation in decision making, youth perception of positive consequences of having a CFC, and coping accounted for 32% of the variance in satisfaction with past surgeries (P < 0.001). Youth age, sex, and assessment of condition severity were not significantly associated with satisfaction with surgical outcome. Depression, self-esteem, and negative consequences of having a CFC were not associated with satisfaction with past surgeries. Youth should be actively involved in the decision for craniofacial surgery. Youth who were more satisfied with their surgical outcomes also viewed themselves as having gained from the experience of living with a CFC. They felt that having a CFC made them stronger people and they believed that they were more accepting of others and more in touch with others' feelings because of what they had been through.


Subject(s)
Decision Making , Patient Participation , Patient Satisfaction , Plastic Surgery Procedures/psychology , Resilience, Psychological , Adaptation, Psychological/physiology , Adolescent , Age Factors , Attitude to Health , Child , Craniofacial Abnormalities/psychology , Craniofacial Abnormalities/surgery , Depression/psychology , Emotions , Female , Humans , Interpersonal Relations , Male , Mental Health , Quality of Life , Self Concept , Sex Factors
18.
J Sleep Res ; 24(2): 234-40, 2015 Apr.
Article in English | MEDLINE | ID: mdl-25307048

ABSTRACT

This study aimed to investigate the cycles (2nd/4th) and duration-related (5/10 min) variations in the story-like organization of dream experience elaborated during rapid eye movement (REM) sleep. Dream reports were analysed using story grammar rules. Reports were provided by those subjects (14 of 22) capable of reporting a dream after each of the four awakenings provoked in 2 consecutive nights during REM sleep of the 2nd and 4th cycles, after periods of either 5 or 10 min, counterbalanced across the nights. Two researchers who were blind as to the sleep condition scored the dream reports independently. The values of the indicators of report length (measured as value of total word count) and of story-like organization of dream reports were matched taking time-of-night (2nd and 4th cycles) and REM duration (5 versus 10 min) as factors. Two-way analyses of variance showed that report length increased significantly in 4th-cycle REM sleep and nearly significantly for longer REM duration, whereas the number of dream-stories per report did not vary. The indices of sequential (number of statements describing the event structure developed in the story) and hierarchical (number of episodes per story) organization increased significantly only in dream-stories reported after 10 min of 4th-cycle REM sleep. These findings indicate that the characteristics of structural organization of dream-stories vary along with time of night, and suggest that the elaboration of a long and complex dream-story requires a fairly long time and the availability of a great amount of cognitive resources to maintain its continuity and coherence.


Subject(s)
Dreams/physiology , Dreams/psychology , Language , Sleep, REM/physiology , Female , Humans , Linguistics , Male , Self Report , Time Factors , Wakefulness , Young Adult
19.
Acta Derm Venereol ; 94(6): 677-82, 2014 Nov.
Article in English | MEDLINE | ID: mdl-24682274

ABSTRACT

The aim of this study was to assess the frequency of classic dermoscopic basal cell carcinoma (BCC) features and the sensitivity of new descriptors, such as light brown nests (homogeneous and structured) only visible employing a high magnification digital videomicroscope. A retrospective analysis of 2,024 highly magnified digital images referring to 400 BCCs was performed by 3 independent observers, who assessed 11 classic BCC descriptors and the new ones. Light brown nests were detected in 40.5% of BCCs. Homogeneous ones were observable in 17.8%, and structured nests in 32.8%. Light brown nests were visible in 14.3% of non-pigmented lesions, whereas in the pigmented groups these were observed in 42-54% of the cases. We suggest that brown nests described in this study may improve early recognition of superficial BCCs and of non-pigmented or slightly pigmented ones that may lack classic dermoscopic patterns.


Subject(s)
Carcinoma, Basal Cell/pathology , Dermoscopy/methods , Image Enhancement/methods , Skin Neoplasms/pathology , Skin Pigmentation , Aged , Carcinoma, Basal Cell/classification , Databases, Factual , Early Detection of Cancer , Female , Humans , Italy , Male , Microscopy, Video , Middle Aged , Predictive Value of Tests , Retrospective Studies , Skin Neoplasms/classification
20.
J Clin Sleep Med ; 9(6): 611-2, 2013 Jun 15.
Article in English | MEDLINE | ID: mdl-23772196

ABSTRACT

We report on two sisters, 17 and 12 years of age, with clinical features suggesting narcolepsy with cataplexy (NC): daytime sleepiness, spontaneous and emotionally triggered sudden falls to the ground, and overweight/obesity. MSLT showed borderline sleep latency, with 1 and 0 sleep onset REM periods. HLA typing disclosed the DQB1*0602 allele. Video-polygraphy of the spells ruled out NC diagnosis by demonstrating their easy elicitation by suggestion, with wake EEG, electromyographic persistence of muscle tone, and stable presence of tendon reflexes (i.e., pseudo-cataplexy), together with normal cerebrospinal hypocretin-1 levels. Our cases emphasize the need of a clear depiction of cataplexy pattern at the different ages, the usefulness of examining ictal neurophysiology, and collecting all available disease markers in ambiguous cases.


Subject(s)
Cataplexy/diagnosis , Narcolepsy/diagnosis , Adolescent , Age Factors , Cataplexy/physiopathology , Child , Diagnosis, Differential , Female , Humans , Intracellular Signaling Peptides and Proteins/cerebrospinal fluid , Narcolepsy/physiopathology , Neuropeptides/cerebrospinal fluid , Orexins , Polysomnography , Video Recording
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