Evaluation of tools to assess decision-making capacity in minor adolescents in clinical settings: a systematic review with narrative synthesis

BACKGROUND: With increasing recognition of children's evolving decision-making capacities, assessing decision-making capacity in pediatric clinical practice has become legally and ethically important, yet no standardized assessment approach exists. The aim of this systematic review was to identify and evaluate assessment tools for decision-making capacity in children and to examine their clinical applicability and validation in pediatric populations. METHODS: We conducted a systematic search in accordance with PRISMA guidelines across major academic databases and grey‑literature sources. Two reviewers independently screened studies and extracted data using predefined criteria. We appraised validation studies using the QUADAS‑2 tool. Due to substantial heterogeneity in study designs, populations, and outcomes, a descriptive synthesis was conducted. RESULTS: A total of 27 peer‑reviewed studies and one guideline met the inclusion criteria. Across these studies, we identified seven tools: the MacArthur Competence Assessment Tools (MacCAT-T and MacCAT-CR), the Measure of Competency to Render Informed Treatment Decisions (MOC), the Maturtest, the University of California San Diego Brief Assessment of Capacity to Consent (UBACC), the Competency Questionnaire for Pediatric Population (CQ-Peds), and the Hopkins Competency Assessment Test (HCAT). The assessment tools demonstrated considerable heterogeneity in purpose, conceptual grounding, methodological approach, administration, time requirements, scoring procedures, and validation in child populations. The Maturtest, assessing moral maturity, and the child-adapted MacCAT-CR, assessing decision-making capacity in clinical research, are the only two identified validated assessment tools in a child population. One official WHO guideline was also identified. CONCLUSIONS: We identified seven assessment tools, assessing either moral maturity or decision-making capacity. The child-adapted MacCAT-CR remains the only validated instrument for assessing decision-making capacity in children, although mainly in research settings. No validated tool for routine clinical practice was identified, highlighting the need for clinically applicable, multidimensional assessment tools. TRIAL REGISTRATION: PROSPERO: CRD420251052918.

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Journal
BMC Medical Ethics
Published
2026-06-26
DOI
https://doi.org/10.1186/s12910-026-01503-6
Primary Topic
Ethics and Legal Issues in Pediatric Healthcare
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article
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article

Evaluation of tools to assess decision-making capacity in minor adolescents in clinical settings: a systematic review with narrative synthesis

Kris Dierickx, Jaan Toelen, Charelity Adu-Gallant, J Peter de Winter et al.
BMC Medical Ethics
Ethics and Legal Issues in Pediatric Healthcare
article

Evaluation of tools to assess decision-making capacity in minor adolescents in clinical settings: a systematic review with narrative synthesis

Kris Dierickx, Jaan Toelen, Charelity Adu-Gallant, J Peter de Winter, Fenya Van Hauwaert
article en

Abstract

BACKGROUND: With increasing recognition of children's evolving decision-making capacities, assessing decision-making capacity in pediatric clinical practice has become legally and ethically important, yet no standardized assessment approach exists. The aim of this systematic review was to identify and evaluate assessment tools for decision-making capacity in children and to examine their clinical applicability and validation in pediatric populations. METHODS: We conducted a systematic search in accordance with PRISMA guidelines across major academic databases and grey‑literature sources. Two reviewers independently screened studies and extracted data using predefined criteria. We appraised validation studies using the QUADAS‑2 tool. Due to substantial heterogeneity in study designs, populations, and outcomes, a descriptive synthesis was conducted. RESULTS: A total of 27 peer‑reviewed studies and one guideline met the inclusion criteria. Across these studies, we identified seven tools: the MacArthur Competence Assessment Tools (MacCAT-T and MacCAT-CR), the Measure of Competency to Render Informed Treatment Decisions (MOC), the Maturtest, the University of California San Diego Brief Assessment of Capacity to Consent (UBACC), the Competency Questionnaire for Pediatric Population (CQ-Peds), and the Hopkins Competency Assessment Test (HCAT). The assessment tools demonstrated considerable heterogeneity in purpose, conceptual grounding, methodological approach, administration, time requirements, scoring procedures, and validation in child populations. The Maturtest, assessing moral maturity, and the child-adapted MacCAT-CR, assessing decision-making capacity in clinical research, are the only two identified validated assessment tools in a child population. One official WHO guideline was also identified. CONCLUSIONS: We identified seven assessment tools, assessing either moral maturity or decision-making capacity. The child-adapted MacCAT-CR remains the only validated instrument for assessing decision-making capacity in children, although mainly in research settings. No validated tool for routine clinical practice was identified, highlighting the need for clinically applicable, multidimensional assessment tools. TRIAL REGISTRATION: PROSPERO: CRD420251052918.

BMC Medical Ethics
Rega Institute for Medical Research (BE), Spaarne Ziekenhuis (NL), VIB-KU Leuven Center for Microbiology (BE), Spaarne Gasthuis (NL), KU Leuven (BE)
Peace, Justice and strong institutions
Openalex Percentile: Top 5%
Ethics and Legal Issues in Pediatric Healthcare
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