A Comparison of Parent-Reported Severe Autism With Mild/Moderate Autism Among US Children.

OBJECTIVE: An expert commission has proposed the term "profound" autism for children on the spectrum who are minimally verbal or nonverbal and have intellectual disability (ID), behavioral challenges, and co-occurring conditions. It is unknown whether parents' rating of "severe" autism aligns with the definition of "profound" autism. Using the National Survey of Children's Health, we sought to (1) estimate the prevalence of parent-reported severe autism, (2) identify child characteristics that are associated with severe autism, (3) compare health care utilization, and (4) compare caregiver stress and resilience between families of children with severe versus mild/moderate autism. METHODS: Parent responses on the 2018 to 2019 NSCH were used to compare school-age children with parent-reported severe autism and those with mild/moderate autism. Descriptive statistics, χ 2 tests, and logistic regression were used for statistical analysis. RESULTS: Among parents of 1,368 US children with autism, 10.1% characterized their child's autism as severe, a prevalence of 1 in 333. Parents of children with severe autism were more likely to report ID (45% vs 12.1%, p < 0.001), language delay (88% vs 58.7%, p < 0.001), and difficulties in dressing and bathing (67% vs 19.2%, p < 0.001). Children with severe autism had more behavioral problems and co-occurring conditions but were no more likely to see specialists or receive autism-specific behavioral therapy. Their caregivers reported more stress and less resilience. CONCLUSION: The characteristics of "profound" autism and parent-reported "severe" autism significantly overlap, allowing the use of the NSCH for studies of this vulnerable population. Children with profound/severe autism could benefit from more behavioral therapy, specialty care, and family support.

A Comparison of Parent-Reported Severe Autism With Mild/Moderate Autism Among US Children.

OBJECTIVE: An expert commission has proposed the term "profound" autism for children on the spectrum who are minimally verbal or nonverbal and have intellectual disability (ID), behavioral challenges, and co-occurring conditions. It is unknown whether parents' rating of "severe" autism aligns with the definition of "profound" autism. Using the National Survey of Children's Health, we sought to (1) estimate the prevalence of parent-reported severe autism, (2) identify child characteristics that are associated with severe autism, (3) compare health care utilization, and (4) compare caregiver stress and resilience between families of children with severe versus mild/moderate autism. METHODS: Parent responses on the 2018 to 2019 NSCH were used to compare school-age children with parent-reported severe autism and those with mild/moderate autism. Descriptive statistics, χ2 tests, and logistic regression were used for statistical analysis. RESULTS: Among parents of 1,368 US children with autism, 10.1% characterized their child's autism as severe, a prevalence of 1 in 333. Parents of children with severe autism were more likely to report ID (45% vs 12.1%, p < 0.001), language delay (88% vs 58.7%, p < 0.001), and difficulties in dressing and bathing (67% vs 19.2%, p < 0.001). Children with severe autism had more behavioral problems and co-occurring conditions but were no more likely to see specialists or receive autism-specific behavioral therapy. Their caregivers reported more stress and less resilience. CONCLUSION: The characteristics of "profound" autism and parent-reported "severe" autism significantly overlap, allowing the use of the NSCH for studies of this vulnerable population. Children with profound/severe autism could benefit from more behavioral therapy, specialty care, and family support.

A Pilot Project Using Pediatricians as Initial Diagnosticians in Multidisciplinary Autism Evaluations for Young Children.

OBJECTIVES: Wait times for autism spectrum disorder (ASD) evaluations are long, thereby delaying access to ASD-specific services. We asked how our traditional care model (requiring all patients to see psychologists for ASD diagnostic decisions) compared to an alternative model that better utilizes the available clinicians, including initial evaluation by speech, audiology, and pediatrics (trained in Level 2 autism screening tools). Pediatricians could diagnose immediately if certain about diagnosis but could refer uncertain cases to psychology. Accuracy and time to diagnosis, charges, and parent satisfaction were our main outcome measures. METHODS: Data were gathered through record extraction (n = 244) and parent questionnaire (n = 57). We compared time to diagnosis, charges, and parent satisfaction between traditional and alternative models. Agreement between pediatrician and psychologist diagnoses was examined for a subset (n = 18). RESULTS: The alternative model's time to diagnosis was 44% faster (85 vs 152 d) and 33% less costly overall. Diagnostic agreement was 93% for children with ASD diagnoses and 100% for children without ASD diagnoses. Pediatricians expressed higher diagnostic certainty about children with higher levels of ASD symptoms. Parents reported no differences in high satisfaction with experiences, family-centered care, and shared decision making. CONCLUSION: Efficient use of available clinicians with additional training in Level 2 autism screening resulted in improvements in time to diagnosis and reduced charges for families. Coordination of multidisciplinary teams makes this possible, with strategic sequencing of patients through workflow. Flexibility was key to not only allowing pediatricians to refer uncertain cases to psychology for diagnosis but also allowing for diagnosis by a pediatrician when symptomatic presentation clearly met diagnostic criteria.

Parent perceptions of quality of life and healthcare satisfaction for children with medical complexity.

PURPOSE: To describe parent perceptions of their child's quality of life (QOL) and their satisfaction with health care for a group of children with medical complexity (CMC), and to determine whether parent perceptions of child well-being are associated with QOL and health care satisfaction. METHODS: Participants were parents or legal guardians of children enrolled in a novel program of intensive outpatient care for CMC. Participants completed 7-item questionnaires to ascertain their perceptions of their child's well-being, QOL and health care satisfaction. RESULTS: One hundred and ninety-one participants completed questionnaires (response rate 100%). 85% rated their child's QOL as excellent, very good, or good. 87% reported satisfaction with their child's health care. Fair or poor mental health was associated with fair or poor QOL (OR 1.09, p= 0.0002). More pain was associated with lower QOL (OR 1.07, p= 0.0022). Fewer days of play or school attendance were associated with lower satisfaction with health care (OR 1.09, p= 0.0003). CONCLUSION: Our study suggests that more pain and worse mental health are associated with parental perceptions of the quality of life for their CMC. Clinicians who care for these children and their families should carefully and repeatedly assess for these important symptoms.

Melasma in Latina patients: cross-cultural adaptation and validation of a quality-of-life questionnaire in Spanish language.

BACKGROUND: Melasma has been shown to have a significant emotional and psychologic effect on affected patients. Although this pigmentary disorder is thought to be more prevalent among Latinos, the effect of melasma on quality of life (QOL) in this population is unknown. OBJECTIVES: The goals of this study were to translate and culturally adapt the previously validated Melasma QOL (MELASQOL) scale into Spanish language, to confirm the new scale's reliability and validity, and to administer the scale to characterize melasma's effect on the health-related QOL of Spanish language-speaking Latino patients. METHODS: Cross-cultural adaptation of the original questionnaire was performed using previously established guidelines. After pretesting the questionnaire in a group of 30 patients, it was tested in a group of 112 patients recruited from a community outpatient clinic. A Spanish-language health-related QOL assessment battery was also administered for validation purposes. The degree of melasma was determined on clinical examination by the investigator using the Melasma Area and Severity Index. RESULTS: Cross-cultural adaptation of the questionnaire was successful in producing a working and understandable Spanish-language version of the MELASQOL. The Spanish-language MELASQOL scale was internally reliable and demonstrated construct and content validity. The Spanish-language MELASQOL scores of patients with little to no formal education were significantly higher than those with at least a seventh-grade education. Scores were proportional to the length of time a patient had lived with melasma and were higher in patients who had previously sought treatment. Spanish-language MELASQOL score and Melasma Area and Severity Index were shown to be moderately correlated, but no differences were seen according to patient age, marital status, employment, or coexisting medical or psychiatric conditions. LIMITATIONS: Limitations are a lack of data regarding socioeconomic status and limitation to Mexican and Central American female patients. CONCLUSIONS: We have developed a semantically equivalent translation of MELASQOL in the Spanish language and have begun to characterize the effects of melasma on the QOL in a population that has not been previously studied. Further studies in larger populations of Spanish language-speaking patients from various geographic and socioeconomic groups are warranted.