Feasibility and acceptability of a remote, hands-free cognitive battery for adults with traumatic spinal cord injury.

PURPOSE/OBJECTIVE: To evaluate the acceptability and feasibility of testing the cognitive abilities of adults with traumatic spinal cord injury (TSCI) via teleconference. RESEARCH DESIGN: Data were collected prospectively at two study sites from 75 adults living with TSCI. Participants completed a series of self-report measures via an online survey platform, in addition to a brief battery of cognitive testing administered via audio-video teleconference. Modifications were made to select measures to allow for hands-free administration of all tasks. RESULTS: Feasibility was demonstrated by a 97.4% completion rate among the 77 participants who began the cognitive testing and approximately normal distributions for nearly all cognitive testing variables examined. No ceiling or floor effects were observed across cognitive testing variables. Review of acceptability ratings indicated that participants found this approach to cognitive testing to be highly acceptable. CONCLUSION/IMPLICATIONS: Our findings provide evidence for the feasibility and acceptability of administering cognitive testing via teleconference to adults living with TSCI. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Individualized Electrode Subset Improves the Calibration Accuracy of an EEG P300-design Brain-Computer Interface for People with Severe Cerebral Palsy.

Objective: This study examined the effect of individualized electroencephalogram (EEG) electrode location selection for non-invasive P300-design brain-computer interfaces (BCIs) in people with varying severity of cerebral palsy (CP). Approach: A forward selection algorithm was used to select the best performing 8 electrodes (of an available 32) to construct an individualized electrode subset for each participant. BCI accuracy of the individualized subset was compared to accuracy of a widely used default subset. Main Results: Electrode selection significantly improved BCI calibration accuracy for the group with severe CP. Significant group effect was not found for the group of typically developing controls and the group with mild CP. However, several individuals with mild CP showed improved performance. Using the individualized electrode subsets, there was no significant difference in accuracy between calibration and evaluation data in the mild CP group, but there was a reduction in accuracy from calibration to evaluation in controls. Significance: The findings suggested that electrode selection can accommodate developmental neurological impairments in people with severe CP, while the default electrode locations are sufficient for many people with milder impairments from CP and typically developing individuals.

Challenges of brain-computer interface facilitated cognitive assessment for children with cerebral palsy.

Brain-computer interfaces (BCIs) have been successfully used by adults, but little information is available on BCI use by children, especially children with severe multiple impairments who may need technology to facilitate communication. Here we discuss the challenges of using non-invasive BCI with children, especially children who do not have another established method of communication with unfamiliar partners. Strategies to manage these challenges require consideration of multiple factors related to accessibility, cognition, and participation. These factors include decisions regarding where (home, clinic, or lab) participation will take place, the number of sessions involved, and the degree of participation necessary for success. A strategic approach to addressing the unique challenges inherent in BCI use by children with disabilities will increase the potential for successful BCI calibration and adoption of BCI as a valuable access method for children with the most significant impairments in movement and communication.

Impact of sleep-disordered breathing on behavior and quality of life in children aged 2 to 7 years with non-syndromic cleft lip and/or palate.

INTRODUCTION: Children with cleft are at high risk for sleep-disordered breathing (SDB). However, little is known about the impact of SDB in this pediatric population. The aim of this study was to investigate whether SDB play a role in behavior and quality of life (QoL) in young children with cleft. METHODS: Cross-sectional study of 95 children aged 2.0-7.9 years with cleft palate. Parents completed a sleep (Pediatric Sleep questionnaire), a behavior (Conners' Early Childhood scale), and a generic health-related QoL (KINDL questionnaire) assessment. Symptomatic children were referred for a polysomnography (PSG). RESULTS: Overall, 14.7% of children (49.5% boys) screened positive for SDB and 27.4% had a PSG, which identified 84.6% with sleep apnea (apnea-hypopnea index [AHI] ≥1) and 27.2% with AHI ≥5. Positive screening for SDB was associated with elevated T-scores for anxiety and physical symptoms, significant differences in mean T-scores for inattention/hyperactivity (64.2 ± 15.7 vs. 53.9 ± 11.4, p = .02), social functioning/atypical behaviour, social functioning (60.6 ± 11.7 vs. 51.9 ± 7.3, p = .004 and 59.5 ± 10.9 vs. 51.2 ± 8.0, p = .01) and mood (57.5 ± 8.2 vs. 50.7 ± 8.2, p = .03). Lower QoL scores for emotional and family well-being were also reported in children with SDB (80.7 ± 13.4 vs. 90.0 ± 8.7, p = .01, 66.7 ± 15.8 vs. 76.9 ± 11.9, p = .04). Children with AHI ≥5 compared to those with AHI ≥1 and <5 showed significant differences in mean T-score for aggressive behaviour (65.2 ± 12.1 vs. 52.3 ± 11.3, p = .04), defiant temper (62.8 ± 9.2 vs. 51.6 ± 10.2, p = .03) and lower family QoL scores (59.4 ± 15.2 vs. 77.1 ± 9.6, p = .006). CONCLUSIONS: In children with cleft palate the presence of SDB symptoms and moderate/severe sleep apnea was associated with behavioral (internalizing/externalizing) problems and lower family well-being.

Clinical factors associated with mood affective disorders among adults with cerebral palsy.

OBJECTIVE: To determine individual and aggregated associations of cerebral palsy (CP)-related symptoms and the effect of comorbid neurodevelopmental conditions on mood (affective) disorders among adults with CP. METHODS: Cross-sectional data from 2016 were extracted from a random 20% sample of the Medicare fee-for-service database. International Classification of Diseases, Tenth Revision, Clinical Modification diagnosis codes were used to identify 18- to -64-year-old beneficiaries with CP, as well as mood (affective) disorders, pain, sleep disorders, fatigue, and comorbid neurodevelopmental conditions (intellectual disabilities [ID], autism spectrum disorders [ASD], and epilepsy). RESULTS: Four thousand eight hundred twenty-three of the 17,212 adults with CP had mood (affective) disorders (28.0%). After adjusting for age, sex, and race, pain (odds ratio [OR] = 2.15; 99.5% confidence interval [CI] = 1.94-2.39), sleep disorders (OR = 2.43; 99.5% CI = 2.13-2.77), fatigue (OR = 1.38; 99.5% CI = 1.18-1.60), ID (OR = 1.47; 99.5% CI = 1.31-1.63), ASD (OR = 1.44; 99.5% CI = 1.16-1.80), and epilepsy (OR = 0.81; 99.5% CI = 0.73-0.91) were each associated with mood (affective) disorders. When pain, sleep disorders, and fatigue were presented as a count variable, the adjusted odds of mood (affective) disorders increased with the number of factors: 1 factor (OR = 1.99; 99.5% CI = 1.79-2.22), 2 factors (OR = 4.18; 99.5% CI = 3.58-4.89), and all 3 factors (OR = 7.38; 99.5% CI = 5.17-10.53). CONCLUSIONS: Among young and middle-aged adults with CP, mood (affective) disorders were associated with pain, sleep disorders, and fatigue, and increasing co-occurrence of these factors further increased the likelihood of mood (affective) disorders. Further, comorbid neurodevelopmental conditions were also associated with mood (affective) disorders among adults with CP. Study findings could be used to improve screening strategies for mood (affective) disorders among adults with CP in the clinical setting.

Effect of pain on mood affective disorders in adults with cerebral palsy.

AIM: To determine if pain is associated with 12-month incidence of mood affective disorders (MAD) in adults with cerebral palsy (CP). METHOD: Data from Optum Clinformatics® Data Mart (2013-2016) were used for this retrospective cohort study. Diagnostic codes were used to identify adults (≥18y) with CP, incident cases of MAD, and covariates (other neurodevelopmental conditions, sleep disorders, arthritis). Pain (any type, location) was identified between 1st October 2014 and 30th September 2015. The pain group was divided into new or consistent pain if they had a history of pain (i.e. consistent) in the 12 months before their first pain claim date. Crude incidence rates of MAD (expressed per 100 person-years) were estimated. Cox regression was used to estimate hazard ratio (95% confidence interval [CI]) of MAD after adjusting for covariates. RESULTS: Adults that had new pain (n=859; incidence rate=15.5) or consistent pain (n=1303; incidence rate=17.9) had greater crude incidence rate of MAD compared to adults without pain (n=3726; incidence rate=5.9). The elevated rate of MAD remained after adjusting for covariates, for new pain (hazard ratio=2.4; 95% CI=1.9-3.0) and consistent pain (hazard ratio=2.1; 95% CI=1.7-2.7). INTERPRETATION: Pain is associated with greater incidence of MAD in adults with CP. This association remained after accounting for potential confounding factors. WHAT THIS PAPER ADDS: What this paper adds Pain was associated with higher 12-month incidence of mood affective disorders (MAD). The 12-month MAD incidence was similar between new and consistent pain groups. The MAD incidence remained higher adjusting for neurodevelopmental comorbidities, sleep disorders, and arthritis.

Prevalence of Mental Health Disorders Among Adults With Cerebral Palsy: A Cross-sectional Analysis.

Background: Persons with cerebral palsy (CP) have an increased risk for secondary chronic conditions during childhood, including mental health disorders. However, little is known about how these disorders affect adults with CP. Objective: To determine the prevalence of mental health disorders among adults with CP compared with those without CP. Design: Cross-sectional. Setting: 2016 Optum Clinformatics Data Mart. Patients: 8.7 million adults (including 7348 adults with CP). Measurements: Other neurodevelopmental comorbid conditions (intellectual disabilities, autism spectrum disorders, epilepsy) and 37 mental health disorders (as 6 categories) were identified on the basis of diagnosis codes. Direct age-standardized prevalence of the mental health disorder categories was estimated by sex for adults with CP alone, adults with CP and neurodevelopmental disorders, and adults without CP. Results: Men with CP alone had higher age-standardized prevalence than men without CP for schizophrenic disorders (2.8% [95% CI, 2.2% to 3.4%] vs. 0.7%), mood affective disorders (19.5% [CI, 18.0% to 21.0%] vs. 8.1%), anxiety disorders (19.5% [CI, 18.0% to 21.0%] vs. 11.1%), disorders of adult personality and behavior (1.2% [CI, 0.8% to 1.6%] vs. 0.3%), and alcohol- and opioid-related disorders (4.7% [CI, 3.9% to 5.5%] vs. 3.0%). The same pattern was observed for women. Compared with adults with CP alone, those with CP and neurodevelopmental disorders had similar or higher age-standardized prevalence of the 6 mental health disorder categories, except for the lower prevalence of alcohol- and opioid-related disorders in men. Limitations: Single claims code was used to define the cohort of interest. Information on the severity of CP was not available. Conclusion: Compared with adults without CP, those with CP have an elevated prevalence of mental health disorders, some of which may be more pronounced in patients with comorbid neurodevelopmental disorders. Primary Funding Source: National Institute on Disability, Independent Living, and Rehabilitation Research.

Variation in the Desire for Cleft Revision Surgery among Children, Caregivers, and Surgeons.

BACKGROUND: Although revision surgery is part of the reconstructive process for children with cleft lip and/or cleft palate, the indications for revision vary, and the extent to which surgeons and families agree on appearance is unclear. The authors sought to understand the extent to which children with cleft lip and/or cleft palate, surgeons, caregivers, and control observers agree on satisfaction with appearance and the desire for revision. METHODS: Children with cleft lip and/or cleft palate (n = 100) and their caregivers (n = 100) were surveyed regarding satisfaction with appearance using the Cleft Evaluation Profile. Surgeons (n = 10) and control observers (n = 10) rated photographs of these children using questions analogous to the Cleft Evaluation Profile. General linear model repeated measures analysis of variance were used to detect significant differences between raters, with an alpha of 0.05. RESULTS: The children reported greater satisfaction with appearance across all domains compared with surgeons (nose, 7.77 versus 5.51, p < 0.001; lip, 7.94 versus 5.90, p < 0.001; maxilla, 8.16 versus 6.56, p < 0.001) and general observers (nose, 7.78 versus 6.00, p < 0.001; lip, 7.80 versus 6.12, p < 0.001; maxilla, 8.16 versus 7.40, p < 0.001). Children and caregivers expressed similar degrees of satisfaction with appearance of the lip (5.48 ± 1.69 versus 5.6 ± 1.49, p > 0.5) and maxilla (6.08 ± 1.1 versus 5.8 ± 1.2, p = 0.07). There was no significant relationship between children and surgeons in terms of the desire for revision surgery (p = 0.44). CONCLUSIONS: All groups expressed differing levels of satisfaction with cleft-specific aspects of appearance. Importantly, children were more satisfied than all other groups. Care must be taken to evaluate perceptions of all stakeholders before moving forward with cleft revision surgery.

Mental health disorders, participation, and bullying in children with cerebral palsy.

AIM: To examine how social factors might mitigate the elevated risk of mental health disorders in children with cerebral palsy (CP). METHOD: This cross-sectional study included 6- to 17-year-olds with (n=111; 40.4% 6-11y, 59.6% 12-17y) and without (n=29 909; 50.2% 6-11y, 49.8% 12-17y) CP from the 2016 National Survey of Children's Health. Mental health disorders included depression, anxiety, behavior/conduct problems, and attention-deficit/hyperactivity disorder. Social factors included participation in activities, bully victimization, and difficulty with friendships. RESULTS: After adjusting for sociodemographic factors and the presence of chronic pain, children with CP had higher odds of anxiety (odds ratio [OR] 4.4; 95% confidence interval [CI] 1.9-8.5), behavior/conduct problems (OR 3.9; 95% CI 1.4-11.3), and multimorbidity (OR 2.8; 95% CI 1.1-7.0), but not depression (OR 1.4; 95% CI 0.6-3.8) or attention-deficit/hyperactivity disorder (OR 1.7; 95% CI 0.6-4.6), compared to controls. With adjustment for participation in activities, the odds of anxiety, behavior/conduct problems, and multimorbidity remained increased in children with CP. With adjustment for difficulty with friendships, the odds of anxiety, behavior/conduct problems, and multimorbidity were no longer increased in children with CP. With adjustment for bully victimization, the odds of behavior/conduct problems and multimorbidity were attenuated in children with CP; however, the odds of anxiety remained increased. INTERPRETATION: The elevated prevalence of certain mental health disorders in children with CP is partly associated with modifiable social factors. WHAT THIS PAPER ADDS: Difficulty with friendships predicts an elevated prevalence of psychiatric conditions in children with cerebral palsy (CP). Bully victimization predicts an elevated prevalence of behavior/conduct problems in children with CP. Low participation does not predict mental health disorders in this population.

The contribution of neurologic disorders to the national prevalence of depression and anxiety problems among children and adolescents.

PURPOSE: Depression and anxiety are growing global public health issues and affect millions of children and adolescents in the United States. Although individuals with neurologic disorders (NDs) are at increased risk of adverse mental health disorders, they represent a minority of the population. The purpose of this study was to characterize the national prevalence of depression and anxiety problems in children and adolescents by the presence of various NDs. METHODS: Parent-reported data from the 2016 National Survey of Children's Health were analyzed in children and adolescents with and without NDs aged 6-17 years. RESULTS: The prevalence of depression and anxiety problems varied by the type of ND (0%-18.5% and 2.8%-62.5%, respectively). In the combined group of children and adolescents with NDs (weighted estimate: 1,998,654), the prevalence of depression and anxiety problems was 15.3% and 37.9%, respectively, whereas in children and adolescents without NDs (weighted estimate: 47,644,055), the prevalence was 3.4% and 7.3%, respectively. Children and adolescents with NDs represented 4.0% of the total sample, but 15.7% and 17.7% of the overall sample with depression and anxiety problems, respectively. CONCLUSIONS: Children and adolescents with NDs contribute to a considerable portion of the overall prevalence of depression and anxiety problems despite only representing 4% of the population.

Mental health disorders and physical risk factors in children with cerebral palsy: a cross-sectional study.

AIM: To examine the prevalence of mental health disorders among children with and without cerebral palsy (CP), and to examine how physical risk factors in children with CP might mitigate any elevated risk of mental health disorders in this population. METHOD: Children from 6 years to 17 years of age with (n=111) and without (n=29 909) CP from the 2016 National Survey of Children's Health were included in this cross-sectional study. Mental health disorders included depression, anxiety, behavior/conduct problems, and attention deficit disorder/attention-deficit/hyperactivity disorder (ADHD). Physical risk factors included physical activity (number of active days ≥60min), sleep duration, and pain. RESULTS: Adjusting for sociodemographics, children with CP had higher odds of mental health disorders (odds ratio [OR]=2.7-7.1, p<0.05) except for attention deficit disorder/ADHD (OR=2.5; 95% confidence interval [CI]=0.9-7.1). Further adjusting for physical factors, the odds of depression were no longer increased (i.e. attenuated) in children with CP (OR=1.0; 95% CI=0.3-3.3); however, the odds of anxiety (OR=3.8; 95% CI=1.9-7.8) and behavior/conduct problems (OR=3.8; 95% CI=1.3-11.1) remained elevated. Assessed individually, low physical activity and pain attenuated the odds of depression in children with CP (OR=1.9; 95% CI=0.7-5.3; OR=1.4; 95% CI=0.6-3.8 respectively). INTERPRETATION: Children with CP have an elevated prevalence of mental health disorders even after accounting for physical risk factors. Low physical activity and pain partially accounts for the association between CP and depression. WHAT THIS PAPER ADDS: Children with cerebral palsy (CP) have an elevated risk of developing mental health disorders. Physical factors do not fully account for higher mental health disorder prevalence. Physical activity partially accounts for the relationship between CP and depression. Pain partially accounts for the relationship between CP and depression.

TRASTORNOS DE SALUD MENTAL Y FACTORES DE RIESGO FÍSICO EN NIÑOS CON PARÁLISIS CEREBRAL: ESTUDIO TRANSVERSAL: OBJETIVO: Examinar la prevalencia de trastornos de salud mental en niños con y sin parálisis cerebral (PC), y examinar cómo los factores de riesgo físicos en niños con PC pueden mitigar cualquier riesgo elevado de trastornos de salud mental en esta población. MÉTODO: Los niños de 6 a 17 años de edad con (n=111) y sin (n=29.909) PC de la Encuesta nacional de salud infantil 2016 se incluyeron en este estudio transversal. Los trastornos de salud mental incluían depresión, ansiedad, problemas de conducta / comportamiento, y trastorno por déficit de atención / hiperactividad (TDAH). Los factores de riesgo físico incluían actividad física (número de días activos ≥60min), duración del sueño y dolor. RESULTADOS: Al ajustarse a los datos sociodemográficos, los niños con PC tenían mayores probabilidades de trastornos de salud mental (razón de probabilidades [OR] = 2,7−7,1, p<0,05) excepto por el trastorno por déficit de atención / TDAH (OR=2,5; intervalo de confianza del 95% [IC]=0,9−7,1). Al ajustar aún más los factores físicos, las probabilidades de depresión ya no aumentaron (es decir, se atenuaron) en niños con PC (OR=1,0; 95% CI=0,3−3,3); sin embargo, las probabilidades de ansiedad (OR=3,8; IC 95%=1,9−7,8) y problemas de conducta/conducta (OR=3,8; IC 95%=1,3−11,1) se mantuvieron elevadas. Evaluados individualmente, la actividad física baja y el dolor atenuaron las probabilidades de depresión en niños con PC (OR=1,9; IC del 95%=0,7−5,3; OR=1,4; IC del 95%=0,6, −3,8 respectivamente). INTERPRETACIÓN: Los niños con PC tienen una prevalencia elevada de trastornos de salud mental incluso después de tener en cuenta los factores de riesgo físicos. La baja actividad física y el dolor explican parcialmente la asociación entre PC y depresión.

DESORDENS DA SAÚDE MENTAL E FATORES DE RISCO FÍSICOS PARA CRIANÇAS COM PARALISIA CEREBRAL: ESTUDO TRANSVERSAL: OBJETIVO: Examinar a prevalência de desordens da saúde mental entre crianças com e sem paralisia cerebral (PC), e examiner como fatores de risco físico em crianças com PC podem mitigar qualquer risco elevando de desordens da saúde mental nesta população. MÉTODO: Crianças de 6 a 17 anos de idade com (n=111) e sem (n=29 909) PC no Levantamento Nacional de Saúde da Criança de 2016 foram incluídas neste estudo transversal. Desordens da saúde mental incluíram depressão, ansiedade, problemas de comportamento/conduta, e transtorno do deficit de atenção/atenção e hiperatividade (TDAH). Fatores de risco físico incluíram atividade física (número de dias ativos ≥60min), duração do sono e dor. RESULTADOS: Ajustando para variáveis sócio-demográficas, crianças com PC tiveram maior risco de desordens da saúde mental (odds ratio [OR]=2,7−7,1, p<0,05) exceto para transtorno de deficit de atenção/TDAH (OR=2,5; intervalo de confiança 95% [IC]=0,9−7,1). Ajustando para fatores físicos, os riscos de depressão não eram mais aumentados (ou seja, atenuados) em crianças com PC (OR=1,0; IC 95%=0,3−3,3); no entanto, os riscos de ansiedade (OR=3,8; IC 95%=1,9−7,8) e problemas de comportamento/conduta (OR=3,8; IC 95% =1,3−11,1) permaneceram elevados. Avaliando individualmente, baixos níveis de atividade física e dor atenuaram os riscos de depressão em crianças com PC (OR=1,9; IC 95% =0,7−5,3; OR=1,4; IC 95%=0,6, −3,8 respectivamente). INTERPRETAÇÃO: Crianças com PC tem prevalência aumentada de desordens da saúde mental, mesmo considerando fatores de risco físicos. Ativiade física baixa e dor respondem parcialmente pela associação entre PC e depressão.

Speech Perceptions and Health-Related Quality of Life Among Children With Cleft Lip and Palate.

BACKGROUND: The association between perception of speech and health-related quality of life (HRQOL) among patients with cleft palate is not well understood. The purpose of this study was to determine: the agreement between patient and parent perception of speech, the correlation between patient/parent speech perception and objective analysis by a speech-language pathologist (SLP), and the relationship between objective speech analysis and HRQOL among children with cleft lip with or without palate (CLCP). METHODS: The authors surveyed 108 CLCP patients who received treatment at a large tertiary medical center from 2013 to 2014. Patients and parents were queried regarding their difficulty with speech, and an SLP performed perceptual speech analysis with each patient. Patient-reported survey instruments were used to assess anxiety, depression, anger, peer relationships, stigma, and overall psychosocial health. The authors assessed the agreement between patients and SLP analysis as well as association between speech and HRQOL. RESULTS: Patient and parent-reported speech quality demonstrated moderate agreement regarding the quality of the child's speech (r = 0.46-0.64). Parent and patient speech perception was not well associated with SLP analysis (V = 0.06-0.30). Patient speech perception was correlated with depression (P = 0.03), while SLP analysis was correlated with anger (P = 0.03, P = 0.004), depression (P = 0.007), and difficulty with peer relationships (P = 0.02). CONCLUSIONS: Patients and parents have different perceptions of the quality of the child's speech, and their ratings differ from SLP perceptual speech analysis. Both patient speech perception and SLP analysis are correlated with important aspects of quality of life, and should be considered when evaluating children with CLCP.

The Feasibility and Validity of PROMIS: A Novel Measure of Quality of Life among Children with Cleft Lip and Palate.

BACKGROUND: Health-related quality of life is inconsistently captured among children with cleft lip and palate. The Patient-Reported Outcomes Measurement Information System (PROMIS) captures health-related quality of life, with the added benefit of comparability across clinical conditions. In this study, the authors define the validity and feasibility of PROMIS among children with clefts. METHODS: Children with cleft lip and palate who were at least 5 years old and able to complete instruments independently were eligible for inclusion (n = 93). Children completed PROMIS anxiety, depression, and peer relationship item banks as short forms or computerized adaptive tests. Participants also completed the Pediatric Quality of Life Inventory. Construct validity was measured by Spearman correlations between PROMIS and the Pediatric Quality of Life Inventory controlling for race, sex, age, and income. Feasibility was measured using instrument completion time, reading level, and floor/ceiling effects. RESULTS: PROMIS computerized adaptive tests (peer relationship, r = 0.49; depression, r = -0.56; and anxiety, r = -0.36) and short forms (peer relationship, r = 0.65; depression, r = -0.54; and anxiety, r = -0.56) demonstrated moderate correlation with the Pediatric Quality of Life Inventory. Computerized adaptive tests had fewer floor (0 percent versus 0 percent) and ceiling (8.6 to 19.3 percent versus 21.8 to 41.9 percent) effects than short forms, and demonstrated better readability. Computerized adaptive tests required more time than short forms (peer relationship, 0.84 ± 0.67 versus 1.3 ± 0.92; depression, 0.52 ± 0.38 versus 1.1 ± 0.73; and anxiety, 0.53 ± 0.23 versus 1.1 ± 0.62; p = 0.001), as each computerized adaptive test included on average four more questions. CONCLUSIONS: PROMIS correlates well with the Pediatric Quality of Life Inventory and demonstrates similar accuracy, with better readability and efficiency. Use of PROMIS will improve our ability to compare children with cleft lip and palate to diverse populations and clinical conditions. CLINICAL QUESTION/LEVEL OF EVIDENCE: Diagnostic, II.

Health-Related Quality of Life and the Desire for Revision Surgery Among Children With Cleft Lip and Palate.

PURPOSE: Children with cleft lip with or without palate (CLCP) require multiple reconstructive procedures, however, little is known about their desire for surgical revision. The purpose of this study was to examine the relationship between health-related quality of life (HRQOL) and the desire for revision. METHODS: The authors surveyed children with CLCP (n = 71) and their caregivers regarding general and cleft-specific HRQOL and the desire for revision surgery. The authors used logistic regression models to evaluate the relationship between HRQOL and the desire for revision stratified by age, and determined the level of agreement between caregivers and children. RESULTS: In this cohort, 54.9% of children desired revision, primarily of the nose (n = 23), lip (n = 20), and dentoalveolar structures (n = 19). Children 11 years or older were more likely to desire revision than younger children (OR 3.39, 95% CI [1.19, 9.67], P <0.05). Children who reported poorer HRQOL with respect to appearance (OR 2.31, 95% CI [1.25-4.29], P = 0.008), social development (OR 0.91, 95% CI [0.84-0.99], P = 0.02), and communication (OR 0.94, 95% CI [0.89-0.99], P = 0.02) were significantly more likely to desire revision than children who reported more positive HRQOL. Caregivers' and children's desires for revision were only modestly correlated (r = 0.41). CONCLUSIONS: Children with CLCP who report poorer HRQOL are more likely to desire revision than children with higher HRQOL; these differences are further magnified among older children. Given the modest correlation between patient and caregiver goals for revision, it is important to evaluate both perspectives when considering revision surgery.

Comparative effectiveness studies examining patient-reported outcomes among children with cleft lip and/or palate: a systematic review.

BACKGROUND: Health care policy makers are increasingly encouraging comparative effectiveness research. Little is known regarding comparative studies among children with cleft lip and/or palate. Cleft lip and/or palate profoundly influences self-perception and social functioning, and patient-reported outcomes provide a unique perspective on the success of reconstruction. The purpose of this study was to systematically review the literature regarding patient-reported outcomes among patients with cleft lip and/or palate. METHODS: The authors reviewed articles from MEDLINE, Embase, and PsycInfo that examined the use of patient-reported outcome instruments for cleft lip and/or palate. Studies of patients with cleft lip and/or palate across any age that described the use of patient-completed measures in patient and control populations were included. A research librarian confirmed the search, and two independent, blinded reviewers performed full-text review. RESULTS: The authors identified 1979 articles and selected 30 for inclusion. Forty-two different assessment tools were used to analyze factors such as self-esteem, behavior, and social support. The Strengths and Difficulties Questionnaire was most commonly used (n = 7), followed by the Childhood Experience Questionnaire (n = 5), and the Satisfaction with Appearance survey (n = 4). Barriers to analysis included lack of standardization of survey administration, effect of publication bias, and variations in patient populations between individual studies. CONCLUSIONS: Comparative studies of patient-reported outcomes among patients with cleft lip and/or palate are infrequent. Many instruments exist to measure patient-reported outcomes in this population, but no specific standard exists. Identifying efficient and targeted forms of instrument selection and administration will enhance comparative studies among children with cleft lip and/or palate. CLINICAL QUESTION/LEVEL OF EVIDENCE: Diagnostic, III.

Sleep and quality of life in children with cerebral palsy.

OBJECTIVE: To examine the associations between sleep problems and quality of life (QoL) in children with cerebral palsy (CP). METHODS: Prospective correlational study using parent-report forms to measure QoL and sleep disorder symptoms. Two groups comprised of 41 children with CP and 91 typically developing (TD) controls age 8-12years participated in a prospective correlational study. RESULTS: Measures were the PedsQL-4.0 Generic scales and the Pediatric Sleep Questionnaire, with subscales of interest including sleep disordered breathing (SDB), excessive daytime sleepiness (EDS), insomnia (INS) and snoring (SNOR). Hierarchical regression analyses indicated that EDS contributed unique variance in physical QoL, and INS contributed unique variance in psychosocial QoL in children with CP; for TD children, sleep disorder symptoms were infrequent and not associated with physical or psychosocial QoL. CONCLUSIONS: Findings highlight the importance of assessing sleep difficulties when addressing the needs of children with CP.

Postconcussive symptoms and neurocognitive function after mild traumatic brain injury in children.

OBJECTIVES: We describe children's postconcussive symptoms (PCSs), neurocognitive function, and recovery during 4 to 5 weeks after mild traumatic brain injury (MTBI) and compare performance and recovery with those of injured control group participants without MTBIs. METHODS: A prospective, longitudinal, observational study was performed with a convenience sample from a tertiary care, pediatric emergency department. Participants were children 10 to 17 years of age who were treated in the emergency department and discharged. The MTBI group included patients with blunt head trauma, Glasgow Coma Scale scores of 13 to 15, loss of consciousness for < or = 30 minutes, posttraumatic amnesia of < or = 24 hours, altered mental status, or focal neurologic deficits, and no intracranial abnormalities. The control group included patients with injuries excluding the head. The Post-Concussion Symptom Questionnaire and domain-specific neurocognitive tests were completed at baseline and at 1 and 4 to 5 weeks after injury. RESULTS: Twenty-eight MTBI group participants and 45 control group participants were compared. There were no significant differences in demographic features. Control group participants reported some PCSs; however, MTBI group participants reported significantly more PCSs at all times. Among MTBI group participants, PCSs persisted for 5 weeks after injury, decreasing significantly between 1 and 4 to 5 weeks. Patterns of recovery on the Trail-Making Test Part B differed significantly between groups; performance on other neurocognitive measures did not differ. CONCLUSIONS: In children 10 to 17 years of age, self-reported PCSs were not exclusive to patients with MTBIs. However, PCSs and recovery patterns for the Trail-Making Test Part B differed significantly between the groups.

Long-term outcome of children with high tetraplegia and ventilator dependence.

BACKGROUND/OBJECTIVES: Since 1978, 350 children with ventilator dependence, including 49 with spinal cord injuries (SCIs), have been followed at the University of Michigan C.S. Mott Children's Hospital. Some data were kept on these children prospectively and included in various studies relating to their outcomes and quality of life. This study was designed to determine physical outcomes of children with SCI and long-term mechanical ventilation (LTMV) and to determine predictors of quality of life for children with SCI and LTMV. METHODS: Prospective data collection and retrospective chart reviews were conducted for all 49 children with SCI and LTMV followed at the University of Michigan C.S. Mott Children's Hospital from 1978 to 2003. RESULTS: Of the 49 children with SCI and LTMV, 25 are alive, 16 have died following initial hospital discharge, and 8 have been lost to follow-up. Age at injury was under 5 years for 15, 5 to 9 years for 12, 10 to 14 years for 9, and over 14 years for 13. Forty had high tetraplegia, 7 had low tetraplegia, and 2 had paraplegia. Forty-two had ASIA A injuries, and 7 had ASIA D. All were discharged to their own homes or foster care. CONCLUSION: Our research studies of children with ventilator dependence with and without history of SCI have examined daily activities, perceptions of their quality of life, and their health and medical complications. This study compares individuals 16 years of age and older with matched control groups of those with tetraplegic SCI who do not use ventilators and those with other diagnoses who use home ventilation. Overall, these children have done remarkably well medically and psychologically.