Developing an ICF Core Set for adults with cerebral palsy: A Global expert survey of relevant functions and contextual factors

Limsakul, Chonnanid; Noten, Suzie; Selb, Melissa; Stam, Henk J.; Slot, Wilma M A van der; Roebroeck, Marij E.

doi:10.2340/16501977-2669

Cited by 6 publications

(11 citation statements)

References 22 publications

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“…It is also important to use tools such as the International Classification of Functioning, Disability, and Health (ICF) to standardize the report of results within the health-related domains [61]. Currently, there are specific ICF core sets for CP patients, therefore future studies should summarize the outcomes in this framework and create a common language across healthcare professionals [62].…”

Section: Methodological Considerations Of This Reviewmentioning

confidence: 99%

Effects of Ankle Foot Orthoses on the Gait Patterns in Children with Spastic Bilateral Cerebral Palsy: A Scoping Review

et al. 2021

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Background: Cerebral palsy (CP) is the most common cause of motor disability in children and can cause severe gait deviations. The sagittal gait patterns classification for children with bilateral CP is an important guideline for the planning of the rehabilitation process. Ankle foot orthoses should improve the biomechanical parameters of pathological gait in the sagittal plane. Methods: A systematic search of the literature was conducted to identify randomized controlled trials (RCT) and controlled clinical trials (CCT) which measured the effect of ankle foot orthoses (AFO) on the gait of children with spastic bilateral CP, with kinetic, kinematic, and functional outcomes. Five databases (Pubmed, Scopus, ISI Web of SCIENCE, SciELO, and Cochrane Library) were searched before February 2020. The PEDro Score was used to assess the methodological quality of the selected studies and alignment with the Cochrane approach was also reviewed. Prospero registration number: CRD42018102670. Results: We included 10 studies considering a total of 285 children with spastic bilateral CP. None of the studies had a PEDro score below 4/10, including five RCTs. We identified five different types of AFO (solid; dynamic; hinged; ground reaction; posterior leaf spring) used across all studies. Only two studies referred to a classification for gait patterns. Across the different outcomes, significant differences were found in walking speed, stride length and cadence, range of motion, ground force reaction and joint moments, as well as functional scores, while wearing AFO. Conclusions: Overall, the use of AFO in children with spastic bilateral CP minimizes the impact of pathological gait, consistently improving some kinematic, kinetic, and spatial-temporal parameters, and making their gait closer to that of typically developing children. Creating a standardized protocol for future studies involving AFO would facilitate the reporting of new scientific data and help clinicians use their clinical reasoning skills to recommend the best AFO for their patients.

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Section: Methodological Considerations Of This Reviewmentioning

confidence: 99%

Effects of Ankle Foot Orthoses on the Gait Patterns in Children with Spastic Bilateral Cerebral Palsy: A Scoping Review

et al. 2021

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“…Especially telling is that the consensus process participants placed as much value on environmental factors ( n =29 environmental factors and n =33 body functions in the comprehensive version and n =8 environmental factors and n =9 body functions in the brief version) as body functions. This is also reflected in some of the preparatory studies, for example, n =21 environmental factors and n =20 body functions in the expert survey 28 …”

Section: Discussionmentioning

confidence: 83%

“…This is also reflected in some of the preparatory studies, for example, n =21 environmental factors and n =20 body functions in the expert survey. 28 …”

Section: Discussionmentioning

confidence: 99%

“…The pool of participants from the expert survey 28 was used as a source to identify and invite potential participants to the consensus process. This consensus participant pool was supplemented with persons from international study consortia on adults with CP and members and former members of the Lifespan Care Committee of the American Academy of Cerebral Palsy and Developmental Medicine.…”

Section: Methodsmentioning

confidence: 99%

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ICF Core Sets for the assessment of functioning of adults with cerebral palsy

Noten

Selb

Troenosemito

et al. 2021

Develop Med Child Neuro

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To report on the results of the online international consensus process to develop the comprehensive and brief International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP).METHOD An online iterative decision-making and consensus process involved 25 experts, including clinicians and researchers working with adults with CP, an adult with CP, and the parents of adults with CP from all six regions of the World Health Organization. The most relevant categories were selected from a list of 154 unique second-level candidate categories to develop the ICF Core Sets for adults with CP. This list resulted from evidence gathered during four preparatory studies, that is, a systematic literature review, a qualitative study, an expert survey, and an empirical study. RESULTSThe consensus process resulted in the comprehensive ICF Core Set containing 120 second-level ICF categories: 33 body functions; eight body structures; 50 activities and participation; and 29 environmental factors, from which the most essential categories, 33 in total, were selected for the brief ICF Core Set. For body functions, most of the categories were mental functions and neuromusculoskeletal and movement-related functions. Body structures were mostly related to movement. All the chapters of the activities and participation component were represented, with mobility and self-care as the most frequently covered chapters. For environmental factors, most of the categories addressed products and technology and services, systems, and policies.

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“…A scientific approach for developing an ICF Core Set consists of different steps 17 . First, four preparatory studies are performed from different perspectives: a systematic literature study (researcher’s perspective), 11 a qualitative study (patient’s perspective), an expert survey (health professional’s perspective), 18 and an empirical study (clinical perspective). The results of these studies are included in a list of ICF candidate categories, from which experts will decide on the final ICF Core Set.…”

mentioning

confidence: 99%

Development of an ICF Core Set for adults with cerebral palsy: capturing their perspective on functioning

Noten

Troenosemito

Limsakul

et al. 2021

Develop Med Child Neuro

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Aim To examine the most relevant aspects of functioning of adults with cerebral palsy (CP) from their perspective, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with CP. Method We conducted six focus group discussions with adults with CP without intellectual disability and seven interviews with adults with CP with intellectual disability and caregivers, addressing all ICF components. Meaningful concepts were identified from verbatim transcripts and linked to ICF categories by two independent researchers. Results In total, 31 adults with CP without intellectual disability (mean [SD] age 46y 1mo [14y 1mo]; 20 females, 11 males; Gross Motor Function Classification System [GMFCS] levels I–IV) and seven adults with CP and intellectual disability (mean [SD] age 25y 8mo [6y 8mo]; four females, three males; GMFCS levels III–V) participated. We identified 132 unique second‐level categories: 47 body functions, seven body structures, 43 activities and participation, and 35 environmental factors. The most frequently mentioned categories were emotional function, pain, muscle tone function, support of family, products and technology, and health services. Interpretation Adults with CP experienced problems in a broad range of body functions and activities and indicated the importance of environmental factors for functioning. The identified categories will be added to the list of candidate items to reach consensus on an ICF Core Set for adults with CP. Including the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP). Adults with CP perceive environmental factors as essential elements for everyday functioning. Adults with intellectual disability should be considered as a group with specific problems.

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Developing an ICF Core Set for adults with cerebral palsy: A Global expert survey of relevant functions and contextual factors

Cited by 6 publications

References 22 publications

Effects of Ankle Foot Orthoses on the Gait Patterns in Children with Spastic Bilateral Cerebral Palsy: A Scoping Review

Effects of Ankle Foot Orthoses on the Gait Patterns in Children with Spastic Bilateral Cerebral Palsy: A Scoping Review

ICF Core Sets for the assessment of functioning of adults with cerebral palsy

Development of an ICF Core Set for adults with cerebral palsy: capturing their perspective on functioning

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