Psychometric properties of the PEDI-CAT for children and youth with spinal muscular atrophy

2021 ◽  
pp. 1-11
Author(s):  
Maria Fragala-Pinkham ◽  
Amy Pasternak ◽  
Michael P. McDermott ◽  
Elizabeth Mirek ◽  
Allan M. Glanzman ◽  
...  
Keyword(s):  
Spinal Muscular Atrophy ◽  
Psychometric Properties ◽  
Convergent Validity ◽  
Muscular Atrophy ◽  
Cross Sectional Study ◽  
Children And Youth ◽  
Daily Activities ◽  
Cross Sectional ◽  
Computer Adaptive Test ◽  
Activity Performance

PURPOSE: The purpose of this study was to examine the psychometric properties of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) in children and youth with Spinal Muscular Atrophy (SMA). METHODS: In this prospective cross-sectional study, caregivers of children and youth with SMA completed the PEDI-CAT Daily Activities and Mobility domains. A subset of caregivers completed a questionnaire about the measure. RESULTS: Mean ranks of scaled scores for Daily Activities (n = 96) and Mobility (n = 95) domains were significantly different across the three SMA types and across the three motor classifications. Normative scores indicated that 85 participants (89.5%) had limitations in Mobility and 51 in Daily Activities (53.1%). Floor effects were observed in≤10.4%of the sample for Daily Activities and Mobility. On average, caregivers completed the Mobility domain in 5.4 minutes and the Daily Activities domain in 3.3 minutes. Most caregivers reported that they provided meaningful information (92.1%), were willing to use the PEDI-CAT format again (79%), and suggested adding content including power wheelchair mobility items. CONCLUSION: Convergent validity was demonstrated for the Daily Activities and Mobility domains. Normative scores detected limitations in Mobility and Daily Activity performance for most participants with SMA. The PEDI-CATwas feasible to administer and caregivers expressed willingness to complete the PEDI-CAT in the future.

scholarly journals Cyberbullying among Adolescents: Psychometric Properties of the CYB-AGS Cyber-Aggressor Scale

2020 ◽  
Vol 17 (9) ◽  
pp. 3090 ◽  
Author(s):  
Sofia Buelga ◽  
Javier Postigo ◽  
Belén Martínez-Ferrer ◽  
María-Jesús Cava ◽  
Jessica Ortega-Barón
Keyword(s):  
Factor Analysis ◽  
Psychometric Properties ◽  
Convergent Validity ◽  
Reliability And Validity ◽  
Anger Expression ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Cyber Aggression ◽  
Institutional Authority ◽  
Positive Correlations

The present study aims to analyze the psychometric properties of the revised version of the Adolescent Cyber-Aggressor scale (CYB-AGS). This scale is composed of 18 items that measure direct and indirect cyberbullying. A cross-sectional study was conducted using two independent samples of adolescents. The first sample included 1318 adolescents (52.6% girls) from 12 to 16 years old (M = 13.89, SD = 1.32). The second sample included 1188 adolescents (48.5% boys) from 12 to 16 years old (M = 14.19, SD = 1.80). First, to study the psychometric properties of the CYB-AGS, exploratory factor analysis was performed on Sample 1. Results indicated a two-factor structure: direct cyber-aggression and indirect cyber-aggression. Second, to verify the structure of the CYB-AGS, we selected Sample 2 to conduct confirmatory factor analysis and test the scale’s convergent validity with theoretically-related measures. Results confirmed the reliability and validity of the two-dimensional model. Moreover, measurement invariance was established. Finally, regarding convergent validity, positive correlations were obtained between cyberbullying and aggressive behaviors in school, anger expression, negative attitudes towards school, and transgression of norms. Furthermore, negative correlations were found between cyberbullying and attitudes towards institutional authority.

scholarly journals Anxiety and depression in school-age patients with spinal muscular atrophy: a cross-sectional study

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Mei Yao ◽  
Yu Xia ◽  
Yijie Feng ◽  
Ying Ma ◽  
Yi Hong ◽  
...  
Keyword(s):  
Spinal Muscular Atrophy ◽  
Rating Scale ◽  
Muscular Atrophy ◽  
Genetic Diagnosis ◽  
Cross Sectional Study ◽  
Anxiety And Depression ◽  
Type I ◽  
School Age ◽  
Sectional Study ◽  
Cross Sectional

Abstract Background Spinal muscular atrophy (SMA) is a rare neurogenetic disease which involves multisystem dysfunctions such as respiratory, digestive, and motor disorders. Anxiety, depression and other psychological disorders often accompany severe chronic physical diseases. The aim of this study was to investigate the prevalence of anxiety and depression along with their influencing factors among school-age patients with SMA. Methods We conducted a cross-sectional study on school-age SMA patients in China. Patients aged 8–18 years with a genetic diagnosis of 5qSMA were invited to answer a questionnaire composed of sociodemographic and clinical questions, then to complete the Screen for Child Anxiety-Related Emotional Disorders and Depression Self-Rating Scale for depression and anxiety level evaluation. At the end of the questionnaire, further questions assessed the subjective anxiety and subjective depression of patients’ caregivers and their expectations for their child’s future. Results Complete data were available for 155 patients. The sample included 45.8% boys and 54.2% girls; 65.2% were type II, 27.1% were type III, and the remainder were type I SMA. Rates of anxiety and depression in these school-age SMA patients were 40.0% and 25.2%, respectively. Gender, age, and disease type were not associated with anxiety or depression, but respiratory system dysfunction, digestive system dysfunction, skeletal deformity, rehabilitation exercise, academic delay, specialized support from school, household income level, caregivers’ subjective anxiety, and caregivers’ expectations were significantly related to both anxiety and depression. Conclusions There was a high prevalence of anxiety and depression in school-age SMA patients in China. Professional psychological care maybe included in the standard of care. These results also call for possible targets for intervention such as reducing complications, improving drug accessibility, retaining normal schooling, strengthening school support, and enhancing the ability of the caregivers of SMA patients to assist in the diagnosis and treatment of the disease, so improving the mental health of SMA patients.

scholarly journals Psychometric Properties of Coronavirus Anxiety Scale in Iranian Population

2021 ◽  
Vol In Press (In Press) ◽  
Author(s):  
Imaneh Abasi ◽  
Amin Sohrabzadeh Fard ◽  
Azin Farzin ◽  
Sherman Lee ◽  
Abbas Masjedi Arani ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
Convergent Validity ◽  
Well Being ◽  
Cross Sectional Study ◽  
Anxiety Scale ◽  
Cross Sectional ◽  
Iranian Version ◽  
Health Related ◽  
Positive Correlations ◽  
Test Retest Reliability

Background: One of the most common mental health-related issues related to the COVID-19 pandemic is high levels of distress and anxiety due to the COVID-19 pandemic. Psychological well being and conservation of the general population are utterly significant components of facing COVID‑19 pandemic. It seems that despite the availability of highly standardized tools to investigate COVID-19-related anxiety, the Coronavirus Anxiety Scale (CAS) can be helpful in different populations due to its short design. Objectives: The present study aimed to assess the psychometric properties of the Persian (Iranian) version of the Coronavirus Anxiety Scale (P-CAS). Methods: In this web-based cross-sectional study, 305 individuals (184 females vs. 121 males) participated. All participants were evaluated by five questionnaires, including the P-CAS, COVID Stress Scales (CSS), the Depression, Anxiety and Stress Scale-21 (DASS-21), Whiteley Index (WI), and Difficulties in Emotion Regulation Scale (DERS). Cronbach’s alpha, confirmatory factor analysis (CFA), and correlation coefficient were used for data analysis using SPSS 23 and AMOS-23 software. Results: The results of CFA demonstrated that the factor structure of the P-CAS was good, and the scale had an appropriate internal consistency (α = 0.80). A satisfactory convergent validity was shown due to positive correlations of the P-CAS with the related scales. Test-retest reliability of P-CAS was also satisfactory (r = 0.91). Conclusions: According to our results, the P-CAS is a valid and reliable instrument to evaluate the severity of dysfunctional anxiety due to COVID-19 pandemic.

scholarly journals Portuguese version of a stress and well-being evaluation tool (ASSET)at the workplace: validation of the psychometric properties

BMJ Open ◽  
2018 ◽  
Vol 8 (2) ◽  
pp. e018401
Author(s):  
Maria João Heitor dos Santos ◽  
Sérgio Moreira ◽  
Joana Carreiras ◽  
Cary Cooper ◽  
Matthew Smeed ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
Convergent Validity ◽  
Well Being ◽  
Cross Sectional Study ◽  
Original Structure ◽  
Evaluation Tool ◽  
Cross Sectional ◽  
Stress Evaluation ◽  
Portuguese Version ◽  
Mental And Physical Health

ObjectiveThe main objective of this work was to translate the English version of ASSET (A Shortened Stress Evaluation Tool) into the Portuguese version and to validate its psychometric properties. Additionally, this work tested the convergent validity of the instrument.MethodsThe translation and retroversion were conducted by experts and submitted to the authors for approval. Within an observational, cross-sectional study, regarding mental health at the workplace, ASSET together with other scales was applied to a sample of 405 participants. The psychometric validity of the subscales was studied using confirmatory factorial analysis.ResultsThe factorial structure of ASSET is globally supported by the results, with the Perceptions of Your Job and Attitudes Towards your Organisation subscales requiring slight adjustments in the item structure and the Your Health subscales replicating the original structure. The convergent validity also supports the ASSET, showing that all subscales are significantly correlated with variables used to test convergence.ConclusionsGlobally, the results constitute an important contribution to ASSET and open the possibility of its usage among Portuguese-speaking countries. The results provide an evidence on the validity of the instrument and, in particular, of the mental and physical health subscales.

scholarly journals The Burden of Spinal Muscular Atrophy on Informal Caregivers

2020 ◽  
Vol 17 (23) ◽  
pp. 8989
Author(s):  
Isaac Aranda-Reneo ◽  
Luz María Peña-Longobardo ◽  
Juan Oliva-Moreno ◽  
Svenja Litzkendorf ◽  
Isabelle Durand-Zaleski ◽  
...  
Keyword(s):  
Spinal Muscular Atrophy ◽  
Muscular Atrophy ◽  
Informal Caregivers ◽  
Cross Sectional Study ◽  
Hereditary Diseases ◽  
Type I ◽  
Cross Sectional ◽  
Degree Of Disability ◽  
Severity Of The Disease ◽  
Infancy And Early Childhood

Spinal muscular atrophy (SMA) is one of the most common severe hereditary diseases of infancy and early childhood. The progression of this illness causes a high degree of disability; hence, a significant burden is experienced by individuals with this disease and their families. We analyzed the time taken to care for patients suffering from SMA in European countries and the burden on their informal caregivers. We designed a cross-sectional study recording data from France, Germany, Spain and the United Kingdom. The primary caregivers completed a self-administered questionnaire that included questions about the time of care, The Zarit Burden Interview, type of SMA and socio-demographic characteristics. Multivariate analyses were used to study the associations between the type of SMA, time of care and burden supported by informal caregivers. The caregivers provided 10.0 h (SD = 6.7) per day of care (the principal caregivers provided 6.9 h, SD = 4.6). The informal caregivers of patients with type I SMA had a 36.3 point higher likelihood (p < 0.05) of providing more than 10 h of care per day in comparison with caregivers of patients with type III SMA. The severity of the disease was associated with more time of care and a higher burden on the caregivers.

scholarly journals Mastication in Patients with Spinal Muscular Atrophy Types 2 and 3 is Characterized by Abnormal Efficiency, Reduced Endurance, and Fatigue

Dysphagia ◽  
2021 ◽  
Author(s):  
A. M. B. van der Heul ◽  
R. P. A. van Eijk ◽  
R. I. Wadman ◽  
F. Asselman ◽  
I. Cuppen ◽  
...  
Keyword(s):  
Spinal Muscular Atrophy ◽  
Negative Impact ◽  
Muscular Atrophy ◽  
Mouth Opening ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Maximal Mouth Opening ◽  
Underlying Mechanisms ◽  
Type 3 ◽  
Muscle Ultrasound

AbstractMastication problems can have a negative impact on the intake of food and quality of life. This cross-sectional study characterizes mastication problems using clinical and instrumental assessments in patients with spinal muscular atrophy (SMA) types 2 and 3 with self-reported bulbar problems. We included 27 patients (aged 13–67 years), 18 with SMA type 2 and 9 patients with SMA type 3 (of whom three were still ambulant) and applied a questionnaire, clinical mastication tests (TOMASS and 6-min mastication test), and muscle ultrasound of the mastication muscles. Non-ambulant patients demonstrated inefficient mastication as reflected by median z scores for masticatory cycles (z = 1.8), number of swallows (z = 4.3) and time needed to finish the cracker (z = 3.4), and limited endurance of continuous mastication as demonstrated by the median z scores of the 6-min mastication test (z = − 1.5). Patients reported increased fatigue directly after the 6-min mastication test as well as 5 min after completing the test (p < 0.001; p = 0.003). Reduced maximal mouth opening was associated with mastication problems (p < 0.001). Muscle ultrasound of the mastication muscles showed an abnormal muscle structure in 90% of both ambulant and non-ambulant patients. This study aims to understand the nature and underlying mechanisms of mastication problems in patients with SMA types 2 and 3 with reported bulbar problems.

scholarly journals Dental Fear Survey: A Cross-Sectional Study Evaluating the Psychometric Properties of the Brazilian Portuguese Version

2014 ◽  
Vol 2014 ◽  
pp. 1-7 ◽  
Author(s):  
Maurício Antônio Oliveira ◽  
Miriam Pimenta Vale ◽  
Cristiane Baccin Bendo ◽  
Saul Martins Paiva ◽  
Júnia Maria Serra-Negra
Keyword(s):  
Psychometric Properties ◽  
Convergent Validity ◽  
Discriminant Validity ◽  
Cross Sectional Study ◽  
Brazilian Portuguese ◽  
Dental Fear ◽  
Sectional Study ◽  
Cross Sectional ◽  
Brazilian Version ◽  
Belo Horizonte

Objective. The aim of this study was to evaluate the psychometric properties of the Brazilian version of the Dental Fear Survey (DFS), previously translated to the Brazilian Portuguese language and validated.Methods. A cross-sectional study with 1,256 undergraduates from the city of Belo Horizonte, Brazil, was carried out. The DFS and a questionnaire about previous dental experiences were self-administered. Data analysis involved descriptive statistics, principal components analysis (PCA), confirmatory factor analysis (CFA), internal consistency and test-retest reliability, and construct, discriminant, and convergent validity.Results. PCA identified a three-factor structure. CFA confirmed the multidimensionality of the Brazilian version of the DFS. A modified model of the Brazilian version of the DFS fits better than the hypothesized model. The Cronbach’s alpha coefficient for the total DFS scale was 0.95.Conclusion. The DFS demonstrated acceptable construct validity, convergent validity, and discriminant validity. These results supported the reliability and validity of the DFS among Brazilian undergraduates.

scholarly journals Anxiety and Depression in School-age Patients With Spinal Muscular Atrophy: a Cross-sectional Study

2021 ◽  
Author(s):  
Mei Yao ◽  
Yu Xia ◽  
Yijie Feng ◽  
Ying Ma ◽  
Yi Hong ◽  
...  
Keyword(s):  
Spinal Muscular Atrophy ◽  
Rating Scale ◽  
Muscular Atrophy ◽  
Genetic Diagnosis ◽  
Cross Sectional Study ◽  
Anxiety And Depression ◽  
Type I ◽  
School Age ◽  
Sectional Study ◽  
Cross Sectional

Abstract Background: Spinal muscular atrophy (SMA) is a rare neurogenetic disease which involves multisystem dysfunctions such as respiratory, digestive, and motor disorders. Anxiety, depression and other psychological disorders often accompany severe chronic physical diseases. The aim of this study was to investigate the prevalence of anxiety and depression along with their influencing factors among school-age patients with SMA.Methods: We conducted a cross-sectional study on school-age SMA patients in China. Patients aged 8–18 years with a genetic diagnosis of 5qSMA were invited to answer a questionnaire composed of sociodemographic and clinical questions, then to complete the Screen for Child Anxiety-Related Emotional Disorders and Depression Self-Rating Scale for depression and anxiety level evaluation. At the end of the questionnaire, further questions assessed the subjective anxiety and subjective depression of patients’ caregivers and their expectations for their child’s future. Results: Complete data were available for 155 patients. The sample included 45.8% boys and 54.2% girls; 65.2% were type II, 27.1% were type III, and the remainder were type I SMA. Rates of anxiety and depression in these school-age SMA patients were 40.0% and 25.2%, respectively. Gender, age, and disease type were not associated with anxiety or depression, but respiratory system dysfunction, digestive system dysfunction, skeletal deformity, rehabilitation exercise, academic delay, specialized support from school, household income level, caregivers’ subjective anxiety, and caregivers’ expectations were significantly related to both anxiety and depression. Conclusions: There was a high prevalence of anxiety and depression in school-age SMA patients in China. Professional psychological care maybe included in the standard of care. These results also call for possible targets for intervention such as reducing complications, improving drug accessibility, retaining normal schooling, strengthening school support, and enhancing the ability of the caregivers of SMA patients to assist in the diagnosis and treatment of the disease, so improving the mental health of SMA patients.

scholarly journals Clinical and molecular cross-sectional study of a cohort of adult type III spinal muscular atrophy patients: clues from a biomarker study

2012 ◽  
Vol 21 (6) ◽  
pp. 630-636 ◽  
Author(s):  
Francesco D Tiziano ◽  
Rosa Lomastro ◽  
Lorena Di Pietro ◽  
Maria Barbara Pasanisi ◽  
Stefania Fiori ◽  
...  
Keyword(s):  
Spinal Muscular Atrophy ◽  
Muscular Atrophy ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Adult Type ◽  
Cross Sectional ◽  
Type Iii

scholarly journals Patient Reported Impact of Symptoms in Spinal Muscular Atrophy (PRISM-SMA)

Neurology ◽  
2018 ◽  
Vol 91 (13) ◽  
pp. e1206-e1214 ◽  
Author(s):  
Phillip Mongiovi ◽  
Nuran Dilek ◽  
Connie Garland ◽  
Michael Hunter ◽  
John T. Kissel ◽  
...  
Keyword(s):  
Spinal Muscular Atrophy ◽  
Employment Status ◽  
Muscular Atrophy ◽  
Cross Sectional Study ◽  
Assistive Device ◽  
Relative Importance ◽  
Cross Sectional ◽  
Patient Reported ◽  
Swallowing Difficulties ◽  
Symptom Prevalence

ObjectiveTo determine the frequency and relative importance of symptoms experienced by adults with spinal muscular atrophy (SMA) and to identify factors that are associated with a higher burden of disease in this population.MethodsWe conducted a cross-sectional study of 359 adults with SMA using the International SMA Patient Registry. Participants provided input regarding 20 symptomatic themes and 207 symptoms that potentially affect adults with SMA. Participants were asked about the relative importance of each symptom, and analysis was conducted to determine how age, sex, SMA type, education, mobility, and employment status relate to symptom prevalence.ResultsLimitations with mobility or walking (98.6%) and the inability to do activities (98.6%) were the 2 themes with the highest prevalence in the study sample. Limitation with mobility or walking was the theme that was identified as having the greatest effect on the lives of adults with SMA. Employment status was associated with the prevalence of 4 of 20 themes and a reliance on an assistive device was associated with 7 of 20 themes. The prevalence of breathing difficulties, choking or swallowing difficulties, and communication difficulties differed among those with different SMA types.ConclusionsThere are many symptomatic themes that affect the lives of adults with SMA. These themes vary in prevalence and relative importance in the adult SMA population.

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