Characterization of an Italian population with neurological disorders in a rehabilitation setting using ClinFIT.

OBJECTIVE: To examine the functioning profile of people with neurological disorders who access rehabilitation services through ClinFIT Generic-30. METHODS: The functioning profile of people with neurological disorders accessing rehabilitation services was examined using the ClinFIT Generic-30, and the results compared with existing core set (neurological health conditions acute and post-acute,stroke, Multiple Sclerosis, Traumatic Brain Injury,Spinal Cord Injury). RESULTS: Data for 364 people were analysed. The 10 most commonly impaired ICF categories included 3 for Body Functions (exercise tolerance functions (b455), mobility of joint functions (b710), and muscle power functions (b730)) and 7 for Activities and Participation (carrying out daily routine (d230), handling stress and other psychological demands (d240), changing basic body position (d410), maintaining a body position (d415), transferring oneself (d420), walking (d450), and moving around (d455)), while the ICF categories that were severely impaired (ICF qualifiers 3 and 4) in more than 30% of the study cohort were: muscle power functions (b730), carrying out daily routine (d230), walking (d450), moving around (d455), doing housework (d640), and assisting others (d660). DISCUSSION: The current study data suggests that  ClinFIT Generic-30 appears to effectively identify impairments and/or restrictions, as perceived by individuals affected by selected health conditions. CONCLUSION: ClinFIT Generic-30 is a tool that can be used to characterize functioning profile in people with different neurological disorders and to collect important information not addressed by the disease-specific core sets (neurological health conditions acute and post-acute,stroke, Multiple Sclerosis, Traumatic Brain Injury,Spinal Cord Injury).

Hearing and Functioning in Everyday Life Questionnaire: Development and Validation of an ICF-Based Instrument.

OBJECTIVES: Self-assessment instruments are commonly used in audiological rehabilitation. However, several studies highlight the lack of multidimensionality in existing outcome measures, with the consequence that they only partially capture aspects of functioning in everyday life for people living with hearing loss. This study aimed to develop and investigate the content validity of a self-assessment instrument based on the validated Brief International Classification of Functioning, Disability, and Health Core Set for Hearing Loss. DESIGN: The design was a two-part instrument development study. The first part focused on the item-generation process of the instrument, named the Hearing and Functioning in Everyday Life Questionnaire (HFEQ) during an experts' workshop. The second part focused on international content validation of the instrument using group interviews. Strategic sampling was used and 30 adults with hearing loss from India, South Africa, and the United States participated in the group interviews. RESULTS: The expert's workshop resulted in the first version of the HFEQ containing 30 items. The results from group interviews show that the content of the HFEQ was considered to be valid concerning its relevance, comprehensiveness, and comprehensibility. A majority (73%) of the HFEQ items were perceived by the participants as relevant and easy to comprehend. For the remaining 27% of the items, the content was perceived to be relevant in all countries, but some terms and expressions were reported to require rewording or clearer examples. These modifications will be made in the next step of the development process. CONCLUSION: Content validation of the HFEQ demonstrates promising results, with participants perceiving the content as relevant and comprehensible. Further psychometric validation is required to investigate other psychometric properties, such as construct validity and reliability. The HFEQ has the potential to become a valuable new instrument for assessing everyday functioning in people with hearing loss in audiological rehabilitation and in research.

Development of simple descriptions of the ICF Generic-30 Set in different languages: laying the foundation for an ICF-based clinical tool for Europe.

BACKGROUND: Functioning is considered a third indicator of health and a key outcome in rehabilitation. A universal practical tool for collecting functioning information is essential. This tool would be ideally based on the International Classification of Functioning, Disability and Health. AIM: To report the results of the development of country/language-specific versions of an ICF-based clinical tool in six European countries. DESIGN: Consensus process. SETTING: Expert conferences. POPULATION: Multi-professional group of rehabilitation professionals in six European countries. METHODS: 1) Developed an initial proposal by translating the published English-language version of the simple descriptions into the targeted language; 2) conducted a multi-stage consensus conference to finalize the descriptions; 3) employed a three-stage multi-professional expert panel translation back to English. The consensus conference model was modified for geographically large countries. RESULTS: Croatian, Flemish/Dutch, Greek, Polish, and Turkish versions were produced. CONCLUSIONS: The creation of the country/language-specific simple descriptions is a significant part of the "system-wide implementation of the ICF" initiative that will pave the way for the implementation of the ICF in national health systems. CLINICAL REHABILITATION IMPACT: The practical ICF-based clinical tool with country/language specific versions for standardized reporting of functioning will serve as a means of integrating functioning information in national health systems and additionally for monitoring the effects of rehabilitation interventions.

Prioritizing risk factors and identifying target areas to address with interventions to improve sustainable employment of persons with a brain injury or a spinal cord injury - A multi-stakeholder consensus process.

Background: Achieving sustainable long-term employment is the goal of work integration for persons with acquired brain injury (ABI) or spinal cord injury (SCI). However, decreasing employment rates over time for persons with ABI and SCI indicate that remaining employed in the long-term is a challenge. Purpose: To identify the most important risk factors that pose a barrier to sustainable employment of persons with ABI or SCI from a multi-stakeholder perspective, and to propose corresponding interventions that address them. Methods: Multi-stakeholder consensus conference and follow-up survey. Results: From 31 risk factors to sustainable employment of persons with ABI or SCI identified in previous studies, nine were defined as most important to address with interventions. These risk factors either impacted the person, the work environment or service provision. Potential interventions to address these factors were proposed in mixed condition groups, of which ten were voted on as priority interventions. The follow-up survey revealed strong agreement on the intervention proposals, strong to moderate agreement on impact, but moderate to low feasibility, as most of the interventions were measures at the meso- (service) and macro- (legislation and state regulation) level. Conclusions: Holding micro-level stakeholder conferences is a valuable method for identifying the most important risk factors to sustainable employment and for developing measures to address them. To implement measures that involve decisions at the meso- or macro-level, representatives from these levels of the healthcare and social system have to be involved.

Characterizing the Services of a Rehabilitation Centre Specialized in Spinal Cord Injury/Disorder using the International Classification of Service Organization in Rehabilitation 2.0 and Implications for Health Reporting: A Demonstration Project.

OBJECTIVES: To characterize the services of a rehabilitation centre specialized in spinal cord injury/disorder (SCI/D) using the International Classification of Service Organization in Rehabilitation (ICSO-R) 2.0, and to evaluate its potential use in meeting health reporting and certification requirements. METHODS: The post-acute and outpatient rehabilitation services at this specialized SCI/D centre were described, the SCI/D Framework of rehabilitation service type definitions considered, various rehabilitation centre stakeholders were consulted, and data were collected using the centre's digital quality management system and institutional management tool. A structured internet search identified the national health reporting and certification systems relevant for SCI/D rehabilitation. The resulting systems were subsequently mapped with ICSO-R 2.0 categories. RESULTS: ICSO-R 2.0 categories pertaining to the provider dimension were generally the same across the post-acute and outpatient services. ICSO-R 2.0 highlighted the nuances in service delivery between these 2 service types. Most of the categories could be mapped to at least 1 of the 10 health reporting and certification systems detected in the website search. CONCLUSION: ICSO-R 2.0 can be used to comprehensively describe the rehabilitation services of a specialized SCI/D centre in Switzerland. Despite some challenges, ISCO-R 2.0 has the potential to facilitate national health reporting and certification.

Rehabilitation Definition for Research Purposes: A Global Stakeholders' Initiative by Cochrane Rehabilitation.

OBJECTIVE: Since its foundation, Cochrane Rehabilitation has faced challenges with rehabilitation definitions because existing definitions did not indicate what rehabilitation includes and what it excludes. We aimed to develop a comprehensive and shared rehabilitation definition for research purposes to: (1) support the conduct of primary studies and systematic reviews and (2) identify relevant systematic reviews for knowledge translation purposes. DESIGN: We performed a multimodal study including seven preliminary research and discussion papers, four Consensus Meetings, and three Delphi rounds with 80 rehabilitation stakeholders. The Delphi Study aimed to obtain agreement and refine and complete the items composing the definition and meanings of rehabilitation. These stakeholders covered 5 continents, representing 11 global and continental rehabilitation organizations, 11 scientific journals, 4 Cochrane Networks, and 3 Cochrane Groups and included invited experts and representatives of low middle-income countries and consumers. RESULTS: We had a 70% to 82.5% response rate to the three Delphi rounds, during which participants responded to all items (100%) and provided relevant comments (range, 5.5%-50% per item). This participation led to several refinements to the rehabilitation definition through three preliminary versions, and the final items reached an agreement between 88.9% and 100%. We structured the definition using the PICO (Population, Intervention, Comparison, Outcome) framework. We concluded that "In a healthcare context," rehabilitation is defined as a "multimodal, person-centered, collaborative process" (Intervention-general), including interventions targeting a person's "capacity (by addressing body structures, functions, and activities/participation) and/or contextual factors related to performance" (Intervention-specific) with the goal of "optimizing" the "functioning" (Outcome) of "persons with health conditions currently experiencing disability or likely to experience disability, or persons with disability" (Population). Rehabilitation requires that all the items of the definition are satisfied. We defined a "rehabilitation intervention" as "any intervention provided within the rehabilitation process." CONCLUSIONS: We developed a rehabilitation definition for research purposes achieving a broad agreement with global stakeholders. This definition provides explicit criteria to define rehabilitation. Using the proposed definition will improve rehabilitation research by standardizing the description of interventions. Our definition may require revision in the future, as further research enhances understanding and communication of the essence and complexity of rehabilitation.

Rehabilitation Definition for Research Purposes. A Global Stakeholders' Initiative by Cochrane Rehabilitation.

Since its foundation, Cochrane Rehabilitation has faced challenges with rehabilitation definitions because existing definitions did not indicate what rehabilitation includes and what it excludes. We aimed to develop a comprehensive and shared rehabilitation definition for research purposes to: (1) support the conduct of primary studies and systematic reviews, and (2) identify relevant systematic reviews for knowledge translation purposes. We performed a multimodal study including seven preliminary research and discussion papers, four Consensus Meetings, and three Delphi rounds with 80 rehabilitation stakeholders. The Delphi Study aimed to obtain agreement, refine and complete the items composing the definition and meanings of rehabilitation. These stakeholders covered 5 continents, representing 11 global and continental rehabilitation organizations, 11 scientific journals, 4 Cochrane Networks, and 3 Cochrane Groups, and included invited experts, and representatives of low middle-income countries and consumers. We had a 70% to 82.5% response rate to the three Delphi rounds, during which participants responded to all items (100%) and provided relevant comments (range 5.5-50% per item). This participation led to several refinements to the rehabilitation definition through three preliminary versions, and the final items reached an agreement between 88.9% and 100%. We structured the definition using the PICO (Population, Intervention, Comparison, Outcome) framework. We concluded that "In a health care context," rehabilitation is defined as a "multimodal, person-centered, collaborative process" (Intervention-general), including interventions targeting a person's "capacity (by addressing body structures, functions, and activities/participation) and/or contextual factors related to performance" (Intervention-specific) with the goal of "optimizing" the "functioning" (Outcome) of "persons with health conditions currently experiencing disability or likely to experience disability, or persons with disability" (Population). Rehabilitation requires that all the items of the definition are satisfied. We defined a "rehabilitation intervention" as "any intervention provided within the rehabilitation process." We developed a rehabilitation definition for research purposes achieving a broad agreement with global stakeholders. This definition provides explicit criteria to define rehabilitation. Using the proposed definition will improve rehabilitation research by standardizing the description of interventions. Our definition may require revision in the future, as further research enhances understanding and communication of the essence and complexity of rehabilitation.

An international clinical perspective on functioning and disability in adults with cerebral palsy.

BACKGROUND: This international, multi-center cross-sectional study is one of the preparatory studies in the development of the International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP) to describe their functioning and health. OBJECTIVE: To identify the most common problems in functioning of adults with CP presenting in healthcare services, and facilitating and hindering environmental factors, using the ICF as a reference. METHODS: Participants were adults with CP who visited healthcare services in the Netherlands, Sweden, Thailand, and the United States. Structured interviews were performed using an adapted version of the generic ICF checklist 2.1a (106 categories) to rate the participant's functioning and the impact of environmental factors. Descriptive statistics were used for frequency analysis. RESULTS: In total, 101 participants were included, of whom 69 without intellectual disability (mean age ± SD of 38.4 ± 14.7 y; 85.5% with spastic type of CP; Gross Motor Function Classification System (GMFCS) levels I-V) and 32 with intellectual disability (mean age ± SD of 25.0 ± 6.4 y; 71.9% with spastic type of CP; GMFCS levels I-V). A total of 104 ICF categories in the ICF checklist were frequently present in adults with CP: 27 body functions, 4 body structures, 53 activities and participation, and 20 environmental factors. CONCLUSIONS: The most common problems of adults with CP presenting in healthcare services are diverse and highly prevalent. The study results add the clinical perspective on relevant categories of functioning to the basis for developing the ICF Core Sets for adults with CP.

Rehabilitation definition for research purposes. A global stakeholders' initiative by Cochrane Rehabilitation.

Since its foundation, Cochrane Rehabilitation has faced challenges with rehabilitation definitions because existing definitions did not indicate what rehabilitation includes and what it excludes. We aimed to develop a comprehensive and shared rehabilitation definition for research purposes to: 1) support the conduct of primary studies and systematic reviews, and 2) identify relevant systematic reviews for knowledge translation purposes. We performed a multimodal study including seven preliminary research and discussion papers, four Consensus Meetings and three Delphi rounds with 80 rehabilitation stakeholders. The Delphi Study aimed to obtain agreement, refine and complete the items composing the definition and meanings of rehabilitation. These stakeholders covered 5 continents, representing 11 global and continental rehabilitation organizations, 11 scientific journals, 4 Cochrane Networks and 3 Cochrane Groups, and included invited experts, and representatives of low middle-income countries (LMICs) and consumers. We had a 70% to 82.5% response rate to the three Delphi rounds, during which participants responded to all items (100%) and provided relevant comments (range 5.5-50% per item). This participation led to several refinements to the rehabilitation definition through three preliminary versions, and the final items reached an agreement between 88.9% and 100%. We structured the definition using the PICO (Population, Intervention, Comparison, Outcome) framework. We concluded that "In a health care context," rehabilitation is defined as a "multimodal, person-centered, collaborative process" (Intervention-general), including interventions targeting a person's "capacity (by addressing body structures, functions, and activities/participation) and/or contextual factors related to performance" (Intervention-specific) with the goal of "optimizing" the "functioning" (Outcome) of "persons with health conditions currently experiencing disability or likely to experience disability, or persons with disability" (Population). Rehabilitation requires that all the items of the definition are satisfied. We defined a "rehabilitation intervention" as "any intervention provided within the rehabilitation process." We developed a rehabilitation definition for research purposes achieving a broad agreement with global stakeholders. This definition provides explicit criteria to define rehabilitation. Using the proposed definition will improve rehabilitation research by standardizing the description of interventions. Our definition may require revision in the future, as further research enhances understanding and communication of the essence and complexity of rehabilitation.

The Individual Rehabilitation Project as the core of person-centered rehabilitation: the Physical and Rehabilitation Medicine Section and Board of the European Union of Medical Specialists Framework for Rehabilitation in Europe.

To facilitate the interaction between the health professional and the patient, a framework to guide the rehabilitation process is needed. This framework would encompass three interwoven aspects: the rehabilitation management plan, Individual Rehabilitation Project (IRP), and rehabilitation cycle(s). All three framework aspects focus on the patient and on the aim of rehabilitation, i.e. to optimize a person's functioning across the continuum of care. An IRP is a multi-element, person-centered rehabilitation management scheme, in which rehabilitation is generally provided by a multiprofessional team under the leadership of a physical and rehabilitation medicine (PRM) physician, working in an interdisciplinary manner and together with the patient (or proxy). A reference system for operationalizing functioning and standardizing the process is the International Classification of Functioning, Disability and Health (ICF) - for assessing functioning needs, defining rehabilitation goals and outcomes. The objective of this paper is to present the IRP as a framework for rehabilitation in Europe (EUR-IRP). The specific aims are: 1) to introduce the IRP; and 2) to describe the framework components, elements and variables of the IRP. Demonstration projects (case studies) using the EUR-IRP will be conducted. The present paper presents the efforts to date for developing the EUR-IRP, a key part of the action plan of the PRM Section and Board of the European Union of Medical Specialists to implement the ICF systemwide across the care continuum. This paper serves as another step to bring together practice, science and governance in calling for contribution from rehabilitation clinicians and researchers and professional societies in PRM and beyond.

Towards the implementation of clinical quality management at the national level: description of current types of rehabilitation services for spinal cord injury/disorder in Switzerland using an interdisciplinary consensus process.

BACKGROUND: Aligned with WHO's Global Disability Action Plan 2014-2021, the Section and Board of the European Union of Medical Specialists (UEMS-PRM) set up a plan to strengthen rehabilitation and support International Classification for Functioning, Disability and Health-based clinical quality management. Accordingly, the UEMS-PRM developed the European Framework of Rehabilitation Service Types ("European Framework"). The specifications of these service types may differ across countries and for specific application areas. AIM: The objective of this paper is to report on the development of a framework of rehabilitation service types for spinal cord injury/disorder (SCI/D) in Switzerland ("SCI/D Framework"). DESIGN: Quality improvement in healthcare. SETTING: The setting of this study was in Switzerland. POPULATION: Representatives of medical societies. METHODS: A multistage consensus process was conducted and involved representatives of national medical and rehabilitation societies recruited based on a situational analysis of existing national quality management documents. The process comprised the development of an initial framework based on the European Framework, a survey, a face-to-face consensus meeting, and a confirmatory feedback round on the version of the SCI/D Framework resulting from the meeting. RESULTS: Representatives of 12 national medical societies, one political body in rehabilitation, one national interprofessional rehabilitation society, the Swiss representative of two international rehabilitation societies and heads of four SCI/D specialized centers participated in the multistage consensus process. After the modifications based on the results of the survey, the consensus meeting and confirmatory feedback round were made, the resulting SCI/D Framework version encompassed 19 rehabilitation service types, structured in nine different clusters, of which six were subdivided into general, other specific or SCI/D-specific rehabilitation service types. CONCLUSIONS: Developing the SCI/D Framework for Switzerland was a further step toward refining existing quality criteria and national quality standards for rehabilitation and toward scaling up SCI/D rehabilitation in Switzerland. CLINICAL REHABILITATION IMPACT: The SCI/D Framework can support national efforts to address any gaps in health care provision and guide an optimal response to meet the rehabilitation needs of persons with SCI/D in Switzerland. Furthermore, the development of the SCI/D Framework illustrates an outline that can be used to develop a similar framework for other health conditions and for other countries to follow in adapting the European Framework for their own country context.

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

AIM: 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. RESULTS: The 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. INTERPRETATION: The comprehensive and brief ICF Core Sets for adults with CP were created using a new online version of an established ICF Core Set consensus process. These Core Sets complement the age-specific ICF Core Sets for children and young people with CP and will promote standardized data collection worldwide.

An ICF-based assessment schedule to facilitate the assessment and reporting of functioning in manual medicine - low back pain as a case in point.

PURPOSE: This paper outlines the first steps toward developing the ICF-based assessment schedule for manual medicine with a focus on low back pain (LBP). It reports on the results of a consensus process to develop the default and optional versions of the set of ICF categories (ManMed Set) the assessment schedule should cover, and gives insight in expert input toward building a toolbox of instruments for assessing the ManMed Set categories. METHODS: A scoping review and qualitative study were conducted, each resulting in a list of ICF categories. These categories, along with the categories of the ICF Generic-30 Set, Comprehensive ICF Core Set for LBP, and from an existing Delphi study, served as the starting point for an established consensus process to decide on the ManMed Set. RESULTS: After alternating plenary and working group sessions, an iterative ranking process and cut-off calculation, the multi-professional and international group of 20 experts in manual medicine included 23 categories in the default ManMed version (16 + the ICF Generic-7 Set categories) and 25 in the optional version. CONCLUSIONS: Their development is a major step toward developing an assessment schedule that can be employed in standardizing the assessment and reporting of functioning in manual medicine, initially of LBP patients.Implications for rehabilitationThe ICF assessment schedule for manual medicine has potential use in supporting rehabilitation practice, such as for planning interventions, defining rehabilitation goals, and measuring and documenting functioning outcomes.It can be used to promote interdisciplinary coordination of care and facilitate communication between members of a multidisciplinary rehabilitation team within manual medicine and beyond.The ICF assessment schedule for manual medicine can facilitate rehabilitation and manual medicine research by providing evidence for optimizing rehabilitation practice.

Development of a clinical tool for rating the body function categories of the ICF generic-30/rehabilitation set in Japanese rehabilitation practice and examination of its interrater reliability.

BACKGROUND: The International Classification of Functioning, Disability, and Health (ICF) Generic-30 (Rehabilitation) Set is a tool used to assess the functioning of a clinical population in rehabilitation. The ICF Generic-30 consists of nine ICF categories from the component "body functions" and 21 from the component "activities and participation". This study aimed to develop a rating reference guide for the nine body function categories of the ICF Generic-30 Set using a predefined, structured process and to examine the interrater reliability of the ratings using the rating reference guide. METHODS: The development of the first version of the rating reference guide involved the following steps: (1) a trial of rating patients by several raters; (2) cognitive interviews with each rater to analyze the thought process involved in each rating; (3) the drafting of the rating reference guide by a multidisciplinary panel; and (4) a review by ICF specialists to confirm consistency with the ICF. Subsequently, we conducted a first field test to gain insight into the use of the guide in practice. The reference guide was modified based on the raters' feedback in the field test, and an inter-rater reliability test was conducted thereafter. Interrater agreement was evaluated using weighted kappa statistics with linear weights. RESULTS: The first version of the rating reference guide was successfully developed and tested. The weighted kappa coefficient in the field testing ranged from 0.25 to 0.92. The interrater reliability testing of the rating reference guide modified based on the field test results yielded an improved weighted kappa coefficient ranging from 0.53 to 0.78. Relative improvements in the weighted kappa coefficients were observed in seven out of the nine categories. Consequently, seven out of nine categories were found to have a weighted kappa coefficient of 0.61 or higher. CONCLUSIONS: In this study, we developed and modified a rating reference guide for the body function categories of the ICF Generic-30 Set. The interrater reliability test using the final version of the rating reference guide showed moderate to substantial interrater agreement, which encouraged the use of the ICF in rehabilitation practice.

Correction: Content comparison and person-centeredness of standards for quality improvement in cardiovascular health care.

[This corrects the article DOI: 10.1371/journal.pone.0244874.].

Laying the foundation for a Core Set of the International Classification of Functioning, Disability and Health for community-dwelling older adults in primary care: relevant categories of their functioning from the research perspective, a scoping review.

OBJECTIVES: The objective of this study was to find relevant concepts of functioning in community-dwelling older adults within frequently used assessment instruments published in the scientific literature. This was part of a larger project to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for use in primary care. DESIGN: A scoping review was conducted. Articles dealing with functioning in older adults were searched and assessed for eligibility. The study population included community-dwelling adults (≥75 years) without dementia, living in high-resource countries. Relevant concepts were extracted from assessment instruments and linked to the ICF using standardised linking rules. Finally, a frequency analysis was conducted. SETTING: Home, primary care. PARTICIPANTS: Community-dwelling adults aged 75 years and above. RESULTS: From 5060 identified publications, 68 were included and 30 assessment instruments extracted. Overall, 1182 concepts were retrieved. Most were linked to the 'activities and participation' component. The most frequently identified categories were 'memory functions', 'dressing' and 'changing basic body position'. CONCLUSIONS: This review provides a list of relevant ICF categories from the research perspective that will be used for developing an ICF Core Set for older primary care patients. TRIAL REGISTRATION NUMBERS: PROSPERO (CRD42017067784), Versorgungsforschung Deutschland Datenbank (VfD_17_003833) and ClinicalTrials.gov (NCT03384732).

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

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. What this paper adds 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.