Repercussão da implementação do Picture Exchange Communication System – PECS no índice de sobrecarga de mães de crianças com Transtorno do Espectro do Autismo

RESUMO Objetivo O objetivo deste estudo foi analisar a repercussão da implementação do PECS no índice de sobrecarga de mães de crianças com Transtorno do Espectro do Autismo (TEA). Método Trata-se de um estudo longitudinal (CEP 0403/2017). A amostra foi constituída por 20 díades mães-crianças com TEA. As mães tinham em média, 41 anos e 5 meses e as crianças, 7 anos e 2 meses. Quinze crianças eram do gênero masculino e cinco, do feminino. Foi aplicada a versão brasileira da escala Burden Interview cujo objetivo é a verificação do nível de sobrecarga dos cuidadores. Para análise dos comportamentos não-adaptativos aplicou-se o Autism Behavior Checklist (ABC) e para análise do repertório lexical: os Testes de Vocabulário Auditivo e Expressivo. O Programa de Implementação do PECS foi composto por 24 sessões de terapia fonoaudiológica individual com a presença ativa das mães. Ao final do Programa todas as crianças e suas respectivas mães foram reavaliadas com parte dos instrumentos utilizados na fase inicial do estudo. Resultados Houve tendência de redução dos índices de sobrecarga materna após a implementação do PECS. Notamos diminuição significativa dos comportamentos não-adaptativos e aumento dos índices de vocabulário expressivo e auditivo das crianças no momento final do estudo. Não observamos correlação significativa entre os índices de sobrecarga com a idade, escolaridade e quociente intelectual das crianças; nem com a escolaridade e nível socioeconômico materno. Conclusão Foi possível analisar a repercussão da implementação do PECS na sobrecarga de mães de crianças com TEA assistidas pelo Programa.

Parent Questionnaires in the Evaluation of Pre-School Children Referred for Neuropsychiatric Assessment

One-hundred twenty-four pre-school children referred for assessment to a neuropsychiatric team were included in this study of the Autism Behavior Checklist (ABC), ESSENCE-Q, and Conners Abbreviated Parent-Teacher Rating Scale (CAPRS). All three questionnaires showed a good correlation towards severity of symptoms in ASD. The ABC questionnaire was, as has been shown in earlier research less accurate in identifying individuals with ASD having an IQ within the normal range. However the ESSENCE-Q, and the CAPRS proved to identify children with difficulties needing further assessment regardless of intellectual ability. The CAPRS showed a good correlation to severity in ASD indicating difficulties in the regulation of activity and behavior likely to be connected to ASD in pre-school children.

Qualitative evaluation of the Autism Behavior Inventory: use of cognitive interviewing to establish validity of a caregiver report scale for autism spectrum disorder

Purpose The Autism Behavior Inventory (ABI) is an observer-reported outcome scale measuring core and associated features of autism spectrum disorder (ASD). Extensive scale development (reported elsewhere) took place, in alignment with the Food and Drug Administration’s patient-reported outcome guidance, to address the need for instruments to measure change and severity of ASD symptoms. Methods Cognitive interviewing was used to confirm understanding and content validity of the scale prior to its use in clinical trials. Respondents were caregivers of individuals with ASD (N = 50). Interviews used a hybrid of the “think-aloud” and verbal probing approach to assess ABI’s content validity and participant understanding of the instrument, including: item clarity and relevance; item interpretation; appropriateness of response scales; and clarity of instructions. Audio-recordings of the interviews were transcribed for qualitative data analysis. The scale was revised based on participant feedback and tested in a second round of interviews (round 1 N = 38, round 2 N = 12). Results In total, 67/70 items reached ≥ 90% understandability across participants. Caregivers were able to select an appropriate response from the options available and reported finding the examples helpful. Based on participant feedback, instructions were simplified, 8 items were removed, and 10 items were reworded. The final revised 62-item scale was presented in round 2, where caregivers reported readily understanding the instructions, response options, and 61/62 items reached ≥ 90% understandability. Conclusions Cognitive interviews with caregivers of a diverse sample of individuals with ASD confirm the content validity and relevance of the ABI to assess core and associated symptoms of ASD.

Qualitative evaluation of the Autism Behavior Inventory: Use of cognitive interviewing to establish validity of a caregiver report scale for autism spectrum disorder

Purpose: The Autism Behavior Inventory (ABI) is an observer-reported outcome scale measuring core and associated features of autism spectrum disorder (ASD). Extensive scale development (reported elsewhere) took place, in alignment with the Food and Drug Administration’s patient-reported outcome guidance, to address the need for instruments to measure change and severity of ASD symptoms. Methods: Cognitive interviewing was used to confirm understanding and content validity of the scale prior to its use in clinical trials. Respondents were caregivers of individuals with ASD (N=50). Interviews used a hybrid of the “think-aloud” and verbal probing approach to assess ABI’s content validity and participant understanding of the instrument, including: item clarity and relevance; item interpretation; appropriateness of response scales; and clarity of instructions. Audio-recordings of the interviews were transcribed for qualitative data analysis. The scale was revised based on participant feedback and tested in a second round of interviews (round 1 N=38, round 2 N=12)Results: In total, 67/70 items reached ≥90% understandability across participants. Caregivers were able to select an appropriate response from the options available and reported finding the examples helpful. Based on participant feedback, instructions were simplified, 8 items were removed, and 10 items were reworded. The final revised 62-item scale was presented in round 2, where caregivers reported readily understanding the instructions, response options, and 61/62 items reached ≥90% understandability.Conclusions: Cognitive interviews with caregivers of a diverse sample of individuals with ASD confirm the content validity and relevance of the ABI to assess core and associated symptoms of ASD.