Factors Affecting the Global Health Status of Children with ASD: An Analysis of Promis Pediatric Global Health Parent-Proxy Data from the Interactive Autism Network

Background:

The overall well-being or "global health" of children with autism is important. Identifying specific factors associated with poor global health may lead to improved treatment and care.

Objectives:

To determine factors associated with global health as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Global Health measure (PGH-7) parent-proxy report.

Methods:

• Parent participants in the Interactive Autism Network (IAN)—a large, validated and verified, internet-mediated, parent-report research registry—completed the PGH-7 on their children age 5-17 with ASD.
• PGH-7 is a validated 7-item question bank that assesses a parent’s overall evaluations of the physical, mental, and social health of his or her child. Responses to each question range from 1(worst)-to-5(best). Raw total scores (=sum of the scores for each question with minimum =7 and maximum=35) are converted to standardized T-scores (Mean=50; SD= 10), e.g., total raw score=24->T-Score=39.7 (~1SD below mean); total raw score=29->T-Score=49.3 (~the mean).
• Parents also completed IAN’s Birth and Diagnosis Questionnaire (BDQ), which collects baseline data relating to each child’s birth, ASD diagnosis, and development. A rating of “significantly below age level” on the cognitive functioning question and/or IQ score <70 was used as a proxy for intellectual disability (ID). A rating of “meaningful, fluent speech” was used to determine whether the child had normal verbal ability. In addition, the BDQ asks about the degree to which the child has experienced 15 common conditions or difficulties associated with ASD during the past 30 days. The BDQ also includes questions on parent marital status and household income. Children with a BDQ completed before age 5 were excluded.
• Demographic data is collected during IAN registration; analysis was limited to children who resided in the US.
• All children had a professional diagnosis of ASD, with a confirmatory score on the Social Communication Questionnaire (SCQ) screener ≥12 and a Social Responsiveness Scale (SRS) T-score>=60T.
• Multiple linear regression was performed on the PGH-7 raw total score and ordered logistic regression on each of the PGH-7 questions. Included variables are listed in Table 1.

Results:

• Demographics: n=1,052; 79% male; 86% white; 10% Hispanic; mean (SD) age at completion of PGH-7 12.3 (3.36) years.
• Household: 80% of parents married or in committed relationship; median income $60,000-$69,999.
• T-Score Percentages: 52.7% >1SD below mean (with 8.3%>2SD below mean); 46.2% +/-1SD of mean; .01%>1SD above mean.
• Multiple linear regression of PGH-7 raw total scores: number predictors reduced to six, with global health inversely related to (i) age and (ii) SRS raw score, the presence of (iii) irritability/aggression and (iv) depression, and difficulties with (v) feeding and (vi) bowel movements. R²⁼.21, F(6, 889)=38.56, p<.001, with no multicollinearity.
• Ordered logistic regression of PGH-7 item scores: See Table 1. The greatest areas of concern are mental health, “sadness”, and socialization.

Conclusions:

Addressing key factors associated with poor global health—most notably depression/mood disorders, feeding and bowel movement difficulties, socialization, and challenging behaviors (e.g., irritability/aggression and self-injury)—are most likely to improve overall well-being for children with ASD.