<scp>GUIDE</scp> ‐Rehab: A tool to improve replicability and reporting in disability and (re)habilitation research

While habilitation facilitates the development of nascent functions in children and rehabilitation seeks to restore damaged functions in adults, both fields struggle to describe their interventions. ‘Black-box’ is a term often used for this issue.2 GUIDE-Rehab aims to open this box and provide descriptions that facilitate clinical replicability of (re)habilitation.3 GUIDE-Rehab is based on the CochraneRehab definition of rehabilitation for research purposes,4 the TIDiER reporting guideline,5 and, most of all, the decades-long work of the Rehabilitation Treatment Specification System (RTSS), supported by the American Congress of Rehabilitation Medicine. GUIDE-Rehab offers a systematic approach to the black-box problem by shifting focus from the implemented interventions to the targets intended to achieve the outcomes. In fact, the interventions in the (re)habilitation process interact in complex ways, facilitating or inhibiting one another, rather than simply adding up. For this reason, the interventions used during (re)habilitation do not describe the process. Shifting attention (and description) away from the interventions allows us to identify the individual elements of each intervention (the ingredients) used to achieve the targets (which must be measurable). Measuring the target will then help us understand what works and what does not in the hypothesized mechanisms of action (intervention theory). Having these descriptions will allow implementation with adaptation to individual contexts. Moreover, comparison between different programmes, which is currently very difficult due to multiple unknowns across all published black boxes, will be facilitated. Habilitation is a core component of GUIDE-Rehab, exemplified in the supplementary material by the bracing of idiopathic scoliosis in adolescents – an intentionally unconventional case study drawn directly from the habilitation field. While habilitation often focuses on health-related outcomes, it also targets critical functional skills, such as teaching speech to those with congenital deafness or developing gait in children with spina bifida or cerebral palsy. Moreover, in children, there are always general needs related to growth, health, and the achievement of a balanced personality, spanning education, psychological development, and self-management. These elements can be captured by GUIDE-Rehab rather than being sidelined, as they often are, in purely biomedical or biopsychosocial approaches that emphasize the clinical diagnosis over the child's development. GUIDE-Rehab provides a comprehensive description of the (re)habilitation process, enabling us to include all aspects of our interventions in the reporting. The guideline has been piloted in many settings, including simple descriptions of rehabilitation interventions for clinical purposes, not just for publication. Experiments are currently ongoing to use GUIDE-Rehab to help clinical teams develop internal protocols, and scientific societies develop global consensus pathways to describe the complexities of rehabilitation approaches for specific health conditions. In this way, GUIDE-Rehab serves as a powerful tool for implementing the RTSS framework. The decades of RTSS experience enabled the developers to achieve rapid, robust consensus. We recognize that this is the first edition of GUIDE-Rehab, and its implementation by Developmental Medicine and Child Neurology, alongside many other journals, will ensure better reporting and a deeper understanding, driving future improvements in habilitation and rehabilitation. The authors acknowledge the role of Cochrane Rehabilitation, Functioning, and Disability in informing the contents of the paper. The work of CK and SN was supported and funded by the Italian Ministry of Health – Ricerca Corrente. Not required.

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Journal
Developmental Medicine & Child Neurology
Published
2026-03-29
DOI
https://doi.org/10.1111/dmcn.70260
Primary Topic
Cerebral Palsy and Movement Disorders
Type
article
Field-Weighted Citation Impact
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article

GUIDE ‐Rehab: A tool to improve replicability and reporting in disability and (re)habilitation research

Carlotte Kiekens, Bernard Dan, Stefano Negrini
Developmental Medicine & Child Neurology
Cerebral Palsy and Movement Disorders
article

GUIDE ‐Rehab: A tool to improve replicability and reporting in disability and (re)habilitation research

Carlotte Kiekens, Bernard Dan, Stefano Negrini
article en

Abstract

While habilitation facilitates the development of nascent functions in children and rehabilitation seeks to restore damaged functions in adults, both fields struggle to describe their interventions. ‘Black-box’ is a term often used for this issue.2 GUIDE-Rehab aims to open this box and provide descriptions that facilitate clinical replicability of (re)habilitation.3 GUIDE-Rehab is based on the CochraneRehab definition of rehabilitation for research purposes,4 the TIDiER reporting guideline,5 and, most of all, the decades-long work of the Rehabilitation Treatment Specification System (RTSS), supported by the American Congress of Rehabilitation Medicine. GUIDE-Rehab offers a systematic approach to the black-box problem by shifting focus from the implemented interventions to the targets intended to achieve the outcomes. In fact, the interventions in the (re)habilitation process interact in complex ways, facilitating or inhibiting one another, rather than simply adding up. For this reason, the interventions used during (re)habilitation do not describe the process. Shifting attention (and description) away from the interventions allows us to identify the individual elements of each intervention (the ingredients) used to achieve the targets (which must be measurable). Measuring the target will then help us understand what works and what does not in the hypothesized mechanisms of action (intervention theory). Having these descriptions will allow implementation with adaptation to individual contexts. Moreover, comparison between different programmes, which is currently very difficult due to multiple unknowns across all published black boxes, will be facilitated. Habilitation is a core component of GUIDE-Rehab, exemplified in the supplementary material by the bracing of idiopathic scoliosis in adolescents – an intentionally unconventional case study drawn directly from the habilitation field. While habilitation often focuses on health-related outcomes, it also targets critical functional skills, such as teaching speech to those with congenital deafness or developing gait in children with spina bifida or cerebral palsy. Moreover, in children, there are always general needs related to growth, health, and the achievement of a balanced personality, spanning education, psychological development, and self-management. These elements can be captured by GUIDE-Rehab rather than being sidelined, as they often are, in purely biomedical or biopsychosocial approaches that emphasize the clinical diagnosis over the child's development. GUIDE-Rehab provides a comprehensive description of the (re)habilitation process, enabling us to include all aspects of our interventions in the reporting. The guideline has been piloted in many settings, including simple descriptions of rehabilitation interventions for clinical purposes, not just for publication. Experiments are currently ongoing to use GUIDE-Rehab to help clinical teams develop internal protocols, and scientific societies develop global consensus pathways to describe the complexities of rehabilitation approaches for specific health conditions. In this way, GUIDE-Rehab serves as a powerful tool for implementing the RTSS framework. The decades of RTSS experience enabled the developers to achieve rapid, robust consensus. We recognize that this is the first edition of GUIDE-Rehab, and its implementation by Developmental Medicine and Child Neurology, alongside many other journals, will ensure better reporting and a deeper understanding, driving future improvements in habilitation and rehabilitation. The authors acknowledge the role of Cochrane Rehabilitation, Functioning, and Disability in informing the contents of the paper. The work of CK and SN was supported and funded by the Italian Ministry of Health – Ricerca Corrente. Not required.

Developmental Medicine & Child Neurology
University of Milan (IT), Metropolitan Arts Centre (GB), Istituto Clinico Sant'Ambrogio (IT)
Quality Education
Openalex Percentile: Top 4%
Cerebral Palsy and Movement Disorders
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