ICHOM Releases Standard Outcome Measure Set for Neurodevelopmental Disorders

The International Consortium for Health Outcome Measurement (ICHOM) recently released a consensus statement in which they developed a core set of standardized outcome measures for children and adolescents with neurodevelopmental disorders. These findings were published in JAMA Network Open.

ICHOM Rationale, Evidence Review

The gold standard for the assessment of neurodevelopmental disorders is measurement-based care, which involves the routine use of outcome measures before and during treatments in clinical practice. While these measurements are commonly used in the management of physical health, their use in mental health and neurodevelopmental settings is limited. In addition, there is a lack of consensus on the selection and the duration of many of these measures.

Accordingly, the ICHOM formed a working group in 2021 to develop standardized measures that are valid and reliable, track outcomes over time, and can be used in a wider range of geographic and cultural settings.

The working group consisted of 27 experts and service users from 12 countries and were chosen to represent an array of health specialties, including psychiatry, pediatric, psychometrics, and public health. The ICHOM working group focused on 4 of the 6 Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) categories for neurodevelopmental disorders. These categories included:

• attention-deficit/hyperactivity disorder (ADHD),
• communication disorders (ie, language, speech sound, fluency, and social/pragmatic communication difficulties),
• specific learning disorders (ie, reading accuracy and comprehension and math and writing abilities),
• and motor disorders (ie, developmental coordination difficulties, stereotypic movement difficulties, Tourette syndrome, and persistent/chronic motor or vocal tic disorder).

Of note, autism spectrum disorder (ASD) and intellectual disability were not included in the list of neurodevelopmental disorders.

During the decision-making process, the working group defined the scope of the outcome measure set using expert input, conducted an evidence review to identify clinical outcomes, and conducted a systematic literature review to determine a standardized set of outcome measures. Additionally, the group prioritized outcome-based measures rather than diagnostic or screening measures, as patient-reported outcome measures are “seen as most important by clinicians, research experts, and service users.”

The working group compiled a list of case-mix variables and used existing ICHOM sets to make their decisions regarding the scope, outcomes, and measurement and each decision went through up to 3 rounds of modified Delphi surveys.

Neurodevelopmental Disorder Set: Outcome Domains and Standard Measures

Overall, 12 clinical outcomes across 3 outcome domains were included in the core set of neurodevelopmental disorders, with 14 tools to measure these outcomes.

Table 1: Outcome Domains

Core Symptoms	Impact, Functioning, and QOL	Common Coexisting Problems
ADHD	Activities of daily life	Aggression or irritability
Communication disorders	Caregiver burden	Symptoms of anxiety
Motor disorders	Educational functioning	ASD
Learning disorders	Family, health, and psychosocial QOL	Symptoms of depression, emotional changes/reactivity, and sleep problems

Table 2: Recommended Outcome Measures

Outcome	Measure(s)
Core Symptoms
ADHD	SNAP-IV or ADHD-RS-5 or VADRS
Communication disorders	CCC-2, ICS, Speech Naturalness Scale
Motor disorders	DCD-Q, YGTSS
Learning disorders	CLDO
Impact, Functioning, and QOL
Caregiver burden	FSI
Functioning	DD-CGAS
QOL	KIDSCREEN-10
Educational functioning	No measure found
Common Coexisting Problems
Depression and anxiety	RCADS-25
ASD	RBS-R and SRS/VABS
Emotional lability/reactivity	ARI
Aggression and irritability	SNAP-IV
Sleep problems	CSHQ

The working group recommended that data including demographic information, baseline health, clinical and historical factors, and treatment-related factors be collected. In addition, because the time points for clinician visits may vary, the working group also recommended that the core set of outcomes be measured at least every 6 months or more regular follow-ups for patients receiving treatment.

To guide clinical decision-making, the administration burden, costs, and psychometric properties, such as reliability and validity, for each of the outcome measurement tools have been detailed in the published consensus statement.

Open Review of the Neurodevelopmental Disorder Set

Following the development of the neurodevelopmental disorder set, the ICHOM working group conducted an open review survey to seek feedback and evaluate external validation. A total of 40 service users (80% patients and/or caregivers, 20% patients) from the United Kingdom and Portugal and 32 professionals from 16 countries responded to the open review.

The final set was agreed upon by more than 70% of the professionals and service users. However, only 67% of service users agreed that the selected core symptoms of speech and learning disorders covered all important outcomes and only 60% of professionals agreed with the proposed minimum set of outcomes for motor disorders.

Upon reviewing the written feedback for any outcomes that did not meet the pre-set 70% threshold, the ICHOM working group noted that “the reasons behind the disagreement had already been discussed in detail by the working group during the [neurodevelopmental disorder] set development stage, that the feedback had already been addressed elsewhere in the [neurodevelopmental disorder] set, or that the comments were outside the scope of the [neurodevelopmental disorder] set.”

Future Directions

The neurodevelopmental disorder set developed by the ICHOM working group outlines clinical guidance for measurement-based care in the treatment of neurodevelopmental disorders. Moving forward, the working group plans to monitor the implementation of these measures and update the set as new research and advances improve outcome measurements for patients with neurodevelopmental disorders.

“[T]he recommendation of a set of standard measures has the potential to improve the quality of care not only through [measurement-based care] but also by increased harmonization, communication, and benchmarking across services,” the working group concluded. “The widespread implementation of the [neurodevelopmental disorders] set will create large databases that will provide a valuable resource for researchers to generate hypotheses for future research.”

Disclosure: Some study authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of the authors’ disclosures.

This article originally appeared on Psychiatry Advisor