Comparing perspectives from experts and individuals with lived experience in the Global North versus the Global South: ICF core sets for deafblindness.

Introduction There is no specific measure available for patients with spinal trauma to apply in comparative effectiveness analyses, which contributes to the present lack of consensus and ongoing controversies regarding the optimal treatment and evaluation of many types of spinal injuries. Therefore, the AOSpine Knowledge Forum on Spinal Cord Injury and Trauma initiated a project to develop and validate such an instrument, which includes both the patients' and health professionals' perspective. The International Classification of Functioning, Disability and Health (ICF) is used as the basis. The preparatory phase of this project focused on identifying all potentially meaningful ICF categories for patients with spinal trauma, excluding patients with complete paralysis and patients with polytrauma, from three different perspectives: research, expert, and patient perspective. The results of these studies created the necessary background for a consensus meeting during which a selection of core categories was decided. Material and Methods The research perspective was covered by a systematic literature review, from 2000 to June 2013, identifying outcome measures focusing on the functioning and health of patients with spinal trauma. The content of these outcome measures was linked to the ICF using established linking rules. The expert perspective was explored through an international cross-sectional web-based survey among spine surgeons from the five AOSpine International world regions. The surgeons were asked to give their opinion on the relevance of a compilation of 143 ICF categories for patients with spinal trauma. The patient perspective was investigated in an international empirical cross-sectional multicenter study, using the general ICF Checklist of 128 categories as a reference. Results Of 6,415 screened references, 217 were included in the systematic review, and 15 frequently used outcome measures were identified. The content of these measures was linked to 57 different ICF categories. A total of 150 AOSpine International members participated in the expert survey. Of 143 ICF categories included in the survey, 13 were identified as “definitely relevant” by ≥ 80% of the participants. The empirical study, including 187 patients from nine trauma centers in seven countries, yielded 38 ICF categories as the most important for ≥ 20% of the patients. Combining these results, the list of ICF categories presented at the consensus meeting included 157 different ICF categories at the first or second level (44 on the component body functions, 16 on body structures, 64 on activities and participation, and 33 on environmental factors). Overall, 11 experts from six countries attended the consensus meeting. Ultimately, a total of 25 ICF categories were selected for outcome measurement in adult spinal trauma patients. This core set included 9 categories from the component body functions, 14 from activities and participation, and 2 from environmental factors. Conclusion A formal consensus process integrating evidence and expert opinion led to a core set of ICF categories for outcome measurement in patients with spinal trauma. In future studies, the Patient Reported Outcome under development will be subjected to further validation and cross-cultural adaptation.

Aims: To compare patient- and carer-reported disability in motor neurone disease (MND) using the International Classification of Functioning, Disability and Health (ICF); and to describe carer burden, psychological coping, and quality of life. Methods: A prospective cross-sectional survey of MND patients (n=44) and carers (n=37). Their MND-related problems were linked with ICF categories (second level) using open-ended questionnaires and ‘linkage rules’. Standardized assessments measured carer psychological coping (depression/anxiety/ stress), strain/burden, quality of life (QoL), and coping strategies. Findings: MND patients were older than their carers (mean age 61, carers 57) there were more male patients than carers (66%, carers 27%). Most carers were spouses/partners (89%). MND patients identified 70 ICF categories whereas carers identified 8: body function 15 (carers 0); body structure 5 (carers 0); activities and participation 40 (carers 6); environmental factors 10 (carers 2). Main ICF categories in activities and participation linked by patients and carers were general tasks and demands, mobility, self-care, community, social and civic life. Environmental factors included support and relationships, services, systems and policies. Carer psychological coping and burden were significant, but self-reported QoL for carers was good, possibly related to use of problem-focused coping strategies. Conclusions: ICF adequately incorporates perspectives of MND patients and carers, which may enable development of a ‘core set’ (ICF categories selected by experts that list issues in impairment, disability, participation, and environmental factors that need to be addressed in multidisciplinary care settings) to optimize care. Reduction in carer burden will optimize outcomes for MND carers and patients.

To analyze the content of outcome measures commonly used to assess health in patients with fibromyalgia (FM) by linking the items of the instruments with the International Classification of Functioning, Disability and Health (ICF) in order to evaluate the adequacy of currently used measures. Questionnaires used in FM were identified in a structured literature search. All concepts included in the items of the questionnaires were linked to ICF categories, according to previously published linking rules, by 2 independent health professionals. The percentages of linked ICF categories addressing the different ICF components were calculated. Generic and symptom-specific instruments were included. From the 296 items contained in all 16 instruments, 447 concepts were extracted and then linked to 52 ICF categories of the component body functions, 1 category of the component body structure, 40 categories of the component activities and participation, and 9 categories of the component environmental factors. More than half of the concepts identified were linked to body function, fewer were linked to activities and participation, and only concepts of 4 instruments were linked to the ICF component environmental factors. Many concepts were linked to the categories in the ICF component body functions. While linking to the broad category, purportedly similar instruments often covered widely varying areas of function at more fine-grained levels of detail. Some categories, such as environmental factors, were barely covered by any of the instruments and might constitute an important aspect of health deserving better coverage and future development.

Purpose: To compare patient-reported disability across three long-term neurological conditions [motor neurone disease (MND), Guillain-Barré syndrome (GBS) and multiple sclerosis (MS)] using the International Classification of Functioning, Disability and Health (ICF). Methods: A prospective cross-sectional survey of Australian community-based persons with MND (n = 44). Their MND-related problems were linked with ICF categories (second level) using open-ended questionnaires and ‘linkage rules’ and compared to similar data collected for GBS (n = 77) and MS (n = 101) participants. Results: MND participants were older (mean age 61 years, GBS 55, MS 49) with more males (66%, GBS 59%, MS 29%). Seventy ICF categories in MND were identified (GBS 41, MS 63): “body function” 15 (GBS 7; MS 18); “body structure” 5 (GBS 3, MS 5); “activities and participation” 40 (GBS 25, MS 30); “environmental factors” 10 (GBS 6, MS 10). The main areas linked in “activities and participation” were mobility, self care, general tasks and demands, domestic life, interpersonal interactions and relationships, major life areas and community, social and civic life; environmental factors included products and technology, natural environment, support and relationships, services, systems and policies. Conclusions: Comparison of three long-term neurological conditions will assist with development of a core set of categories to optimise consensus of care and communication amongst treating clinicians.Implications for RehabilitationMotor Neurone Disease causes diverse and challenging symptoms and disability.A set of relevant ICF categories in Motor Neurone Disease would be useful in both clinical and research settings for optimising care given the rare incidence of Motor Neurone Disease.Motor Neurone Disease can be compared to other long-term neurological conditions (Multiple Sclerosis and Guillain-Barré Syndrome) to assist with development of a core set of categories to optimise consensus of care and communication amongst treating clinicians.

In line with the World Health Organizations' health definition, patient-reported outcome (PRO) measures frequently cover aspects of social health. Our study aimed to evaluate the role functioning (RF) and social functioning (SF) contents assessed by PRO measures commonly used in cancer patients. We analysed the item content of the SF and RF domains of the EORTC CAT Core, the EORTC QLQ-C30, the SF-36, and the FACT-G aswell as the PROMIS item bank covering the Ability to Participate in Social Roles and Activities. Following an established methodology we linked item content to the International Classification of Functioning, Disability and Health (ICF) framework. The content of 85 items was assigned to three ICF components ('Activities and Participation', 'Body Functions', and 'Environmental Factors'). The EORTC CAT Core RF items were mostly related to the first-level ICF categories'Domestic life' and 'Community, social and civic life', while its SF item bankfocused on 'Interpersonal interactions and relationships'. These three categories were also covered by the PROMIS social participation item bank. TheFACT-G Social/Family scale focused on environmental factors ('SupportandRelationships' and 'Attitudes') while the SF-36 Role-physical/emotional scales had a stronger focus on 'General tasks and demands' and 'Major life areas'. Our results highlight conceptual overlap and differences among PRO measures for the assessment of social health in cancer. This information may help toselect the most appropriate measure for a specific setting or study purpose and to better understand the possibilities of linking scores across different PRO measures.

Purpose: The purpose of the study was to identify aspects of functioning and related environmental factors that are relevant to schizophrenia from the perspective of health professionals experienced in treating individuals with this disorder using the International Classification of Functioning, Disability and Health (ICF).Method: An international pool of experts from diverse health care disciplines was surveyed to identify problems in functioning experienced by individuals with schizophrenia and the environmental factors that impact their functioning. On the basis of established rules, all answers were translated to the ICF by two independent researchers.Results: One-hundred and eighty-nine experts from all six World Health Organization regions identified 4776 meaningful concepts, of which 92% were linked to 347 different ICF categories. Of the 347 categories, 194 were second-level categories, 151 were third-level categories and 2 were fourth-level categories. Ninety-five second-level ICF categories, 43 third-level categories and 1 fourth-level category reached percentage frequency of at least 5%. The majority of the categories were attributed to body functions, activities and participation, and environmental factors.Conclusions: Health professionals identified a wide range of problems in functioning that reflect the complexity and breadth of schizophrenia, specifically activity limitations and participation restrictions that are particularly relevant for individuals with schizophrenia. Knowing these functioning problems can guide the design of patient-oriented rehabilitation programmes.Implications for rehabilitationSchizophrenia may result in impaired functioning in multiple daily life activities. The International Classification of Functioning, Disability and Health (ICF) can help in identifying the needs and problems of these individuals.The reported list of ICF categories can facilitate a systematic application of the ICF in schizophrenia and can help to design and implement coordinated and patient oriented rehabilitation programmes with a biopsychosocial approach.According to health professionals surveyed, activity limitations and participation restrictions are broadly affected in this population and are highly influenced by neurocognitive and social cognitive deficits and environmental factors.

Part 2. Identification of problems in functioning of persons with sleep disorders from the health professional perspective using the International Classification of Functioning, Disability and Health (ICF) as a reference: A worldwide expert survey

SAT0270 COMPREHENSIVE ICF CORE SET AND ICF-BASED QUESTIONNAIRE ASSESSING ACTIVITIES AND PARTICIPATION IN PATIENTS WITH SYSTEMIC SCLEROSIS: THE SCISCIF STUDY

PurposeImproved survival rates from cancer have increased the need to understand the health-related problems of cancer treatment. We aimed to develop and validate the “Cancer Survivor Core Set” representing the most relevant health-related problems in adult cancer survivors using the International Classification of Functioning, Disability, and Health (ICF).MethodsFirst, a Delphi study was conducted to select ICF categories representing the most relevant health-related problems. There were three Dutch expert panels, one each for lung, colorectal, and breast cancer. Each panel comprised lay experts and professionals. The experts reached within- and between-panel consensus in two rounds (≥70 % agreement). Second, a validation study was performed. Generic cancer survivorship questionnaires assessing health-related problems or quality of life among cancer survivors were selected. Items of selected questionnaires were linked to the best-fitting ICF category and to the selected ICF categories from the Delphi study, respectively.ResultsIn total, 101 experts were included, of which 76 participated in both rounds, reaching consensus on 18 ICF categories. The Distress Thermometer and Problem List, the Impact of Cancer (v2), and the Quality of Life in Adult Cancer Survivors questionnaires were selected for the validation study, which led to the inclusion of one additional ICF category.ConclusionsThe developed Cancer Survivor Core Set consisted of 19 ICF categories representing the most relevant health-related problems in adult cancer survivors: five from the “body functions and structures” component, eight from the “activities and participation” component, and six from the “environmental factors” component.Highlights• Many adult cancer survivors have persistent health-related problems.• The Cancer Survivor Core Set was developed using the Delphi method.• The patients’ perspectives were prioritized in this Delphi study• Content validity was confirmed by validated cancer survivorship questionnaires.• The Cancer Survivor Core Set may help optimize care for cancer survivors.

BackgroundThe concept of participation is recognized as an important rehabilitation outcome and instruments have been developed to measure participation using the International Classification of Functioning, Disability and Health (ICF). To date, few studies have examined the content of these instruments to determine how participation has been operationalized. The purpose of this study was to compare the content of participation instruments using the ICF classification.MethodsA systematic literature search was conducted to identify instruments that assess participation according to the ICF. Instruments were considered to assess participation and were included if the domains contain content from a minimum of three ICF chapters ranging from Chapter 3 Communication to Chapter 9 Community, social and civic life in the activities and participation component. The instrument content was examined by first identifying the meaningful concepts in each question and then linking these concepts to ICF categories. The content analysis included reporting the 1) ICF chapters (domains) covered in the activities and participation component, 2) relevance of the meaningful concepts to the activities and participation component and 3) context in which the activities and participation component categories are evaluated.ResultsEight instruments were included: Impact on Participation and Autonomy, Keele Assessment of Participation, Participation Survey/Mobility, Participation Measure-Post Acute Care, Participation Objective Participation Subjective, Participation Scale (P-Scale), Rating of Perceived Participation and World Health Organization Disability Assessment Schedule II (WHODAS II). 1351 meaningful concepts were identified in the eight instruments. There are differences among the instruments regarding how participation is operationalized. All the instruments cover six to eight of the nine chapters in the activities and participation component. The P-Scale and WHODAS II have questions which do not contain any meaningful concepts related to the activities and participation component. Differences were also observed in how other ICF components (body functions, environmental factors) and health are operationalized in the instruments.ConclusionLinking the meaningful concepts in the participation instruments to the ICF classification provided an objective and comprehensive method for analyzing the content. The content analysis revealed differences in how the concept of participation is operationalized and these differences should be considered when selecting an instrument.

INTRODUCTION A mixed-methods (qualitative-quantitative), multicenter study was conducted using a focus group design to explore the lived experiences of persons in vocational rehabilitation (VR) with regard to functioning and contextual factors using six open-ended questions related to the ICF components. The results were classified by using the International Classification of Functioning, Disability and Health (ICF) as a frame of reference. METHODS The meaningful concepts within the transcribed data were identified and linked to ICF categories according to established linking rules. RESULTS The seven focus groups with 26 participants yielded a total of 4,813 relevant concepts which were linked to a total of 160 different second-level ICF categories. From the client perspective, the ICF components (a) body functions, (b) activities and participation and (c) environmental factors were equally represented, while (d) body structures appeared less frequently. Out of the total number of concepts, 864 concepts (18%) were assigned to the ICF component personal factors which is not yet classified but could indicate important aspects of resource management and strategy development of patients in VR. CONCLUSION Therefore, VR of patients must not be limited to anatomical and pathophysiologic changes, but should also consider a more comprehensive view which includes client's demands, strategies and resources in daily life and the context around the individual and social circumstances of their work situation.

Capturing functional information is crucial in childhood disability. The International Classification of Functioning, Disability and Health (ICF) Core Sets promote assessments of functional abilities and disabilities in clinical practice regarding circumscribed diagnoses. However, the specificity of ICF Core Sets for childhood-onset disabilities has been doubted. This study aimed to identify content commonalities and differences among the ICF Core Sets for cerebral palsy (CP), and the newly developed Core Sets for autism spectrum disorder (ASD) and attention-deficit-hyperactivity disorder (ADHD). The categories within each Core Set were aggregated at the ICF component and chapter levels. Content comparison was conducted using descriptive analyses. The activities and participation component of the ICF was the most covered across all Core Sets. Main differences included representation of ICF components and coverage of ICF chapters within each component. CP included all ICF components, while ADHD and ASD predominantly focused on activities and participation. Environmental factors were highly represented in the ADHD Core Sets (40.5%) compared to the ASD (28%) and CP (27%) Core Sets. International Classification of Functioning, Disability and Health Core Sets for CP, ASD, and ADHD capture both common but also unique functional information, showing the importance of creating condition-specific, ICF-based tools to build functional profiles of individuals with childhood-onset disabilities. The International Classification of Functioning, Disability and Health (ICF) Core Sets for cerebral palsy (CP), autism spectrum disorder (ASD), and attention-deficit-hyperactivity disorder (ADHD) include unique functional information. The ICF-based tools for CP, ASD, and ADHD differ in terms of representation and coverage of ICF components and ICF chapters. Representation of environmental factors uniquely influences functioning and disability across ICF Core Sets for CP, ASD and ADHD.

Vocational rehabilitation (VR) is a key process in work disability (WD) management which aims to engage or re-engage individuals to work and employment. The International Classification of Functioning, Disability and Health (ICF) by the World Health Organization (WHO) can be interfaced with VR but there is a lack of evidence of what ICF contents experts in the field consider. The objective of this study is to survey the experts in the VR field with regard to what factors are considered important to patients participating in VR using the ICF as the language to summarize the results. An internet-based survey was conducted with experts from six WHO Regions (Africa, the Americas, Eastern Mediterranean, Europe, South-East Asia, and Western Pacific). Experts were asked six open-ended questions on factors that are important in VR. Each question was related to a component of the ICF (body functions, body structures, activities and, environmental factors, and personal factors). Responses were linked to the ICF. Using a modified stratified randomized sampling, 201 experts were sent the survey and 151 experts responded (75% response rate). We identified 101 ICF categories: 22 (21.8%) for body functions, 13 (12.9%) for body structures, 36 (35.6%) for activities and participation, and 30 (29.7%) for environmental factors. There was a multitude of ICF functioning domains according to the respondents which indicates the complexity of VR. This expert survey has provided a list of ICF categories which could be considered in VR.

With the International Classification of Functioning, Disability and Health (ICF), the impact of health conditions on functioning and disability can be described. A Comprehensive and a Brief ICF Core Set for osteoarthritis (OA) were developed. Our specific aims were to validate the Brief ICF Core Set for OA using a novel approach, i.e., to identify ICF categories that best explain patients' functioning, and to propose a statistically validated version. We performed a psychometric study using group lasso regression on data from a convenience sample of 879 OA patients from 20 countries. The general health subscale of the Medical Outcomes Study Short Form 36 was used as a dependent variable, and all ICF categories of the Comprehensive ICF Core Set for OA and some sociodemographic and disease-specific characteristics were used as independent variables. The most relevant ICF categories were identified as those showing a significant effect based on the pointwise 90% confidence intervals resulting from 1,000 bootstrap trials. The set of ICF categories that best explains patients' functioning consists of 4 body functions, 2 body structures, 2 activities and participation, and 3 environmental factors. Twelve of the original 13 Brief ICF Core Set categories were confirmed, and 3 additional ICF categories were identified. Our findings reassure the validity of the Brief ICF Core Set for OA. The statistically validated Core Set with the additional statistically derived ICF categories will likely perform better with regard to discrimination and sensitivity to change in studies and trials, and should be further explored in the future.

DR Jette has challenged the gerontological research community to adopt the language of the World Health Organization's International Classification of Functioning, Disability and Health (ICF) for the study of late-life disability (1). I agree that having an internationally agreed-upon language to advance the study of disability, one that can be used across nations and age groups, is extremely appealing. The field will surely benefit from discourse that is broadly understood. At the same time, two very practical challenges seem to be hindering the speedy embrace of the ICF language by the gerontological community. First, the lack of precision in the crosswalk between the ICF language and the existing measures of late-life functioning can leave a gerontologist who wants to embrace the new language understandably dissatisfied. The widely used measures of functional limitations, activities of daily living (ADLs), and instrumental activities of daily living (IADLs) that most existing surveys and studies of older adults include do not map precisely into the ICF categories as they now stand. Nor at first glance does the ICF language explicitly recognize that performance-based measures of lower extremity functioning, such as the short physical performance battery (2), convey information that is distinctive from—and indeed predictive of—the onset of activity limitations. Subsuming under the rubric of “activities”, functional limitations as well as ADLs and IADLs, ignores critical conceptual distinctions between the building blocks of activities—mobility, upper and lower body movements, sensory and cognitive capabilities—and the activities themselves. As Dr Jette points out, clarifying how the subdomains of activity limitations and participation fit together is an important next step in the development of the ICF that will surely counter some of the inertia. An additional challenge for purposes of studying disablement is that the ICF is not intended to be a dynamic model. In Dr Jette's words, it is a “framework to code information about health and to equip the international community with a standard language.” The Institute of Medicine's (IOM) Committee on the Future of Disability in America (3) went further, noting: [T]he ICF is a classification scheme. Unlike the Nagi and 1991 and 1997 IOM frameworks, it does not present a model of disability—or enablement/disablement—as a dynamic process. In this respect, even if a definitional “crosswalk” between these models and ICF concepts is required, process models and their elaborations remain important (see, e.g., Verbrugge and Jette [1994], Fougeyrollas et al. [1998], and Jette and Badley [2002]). Such models help focus research on identifying and understanding interactions among health conditions, other personal characteristics, and environmental factors that contribute to the movement of individuals from one health or disability state to another. (p. 47). Understandably, some researchers—even those eager to embrace more widely accepted and broadly conceived language—may be uncomfortable parting from a dynamic model with clear concepts, a set of prespecified testable relationships, and validated measures, for a new language not yet fully formulated. Nevertheless, I believe that if the field can meld the benefits that each approach has to offer, the gerontological community will, in time, adopt the language of the ICF. Over the past year, I have had the unique opportunity to work on this very challenge with a consortium of colleagues who are developing, testing, and fielding a state-of-the-art disability instrument for the National Health and Aging Trends Study (NHATS). Funded by the National Institute on Aging as the successor to the National Long Term Care Survey, NHATS will support studies of disability trends and trajectories in later life. A centerpiece of the study will be a new instrument to measure disability using both performance-based and self-reported measures. It is undeniably a tall order, and we are both excited and humbled by the opportunity. Our experience to date may be instructive. The group began with the premise that adopting the language of the ICF would indeed be useful. Beyond its broad acceptance and the potential for universal interpretation, the ICF also offers some new language for those interested in expanding the scope of study related to the disablement process. In particular, the addition of the term “participation” to our vocabulary brings into the dialogue concepts of participating in productive, generative, community, social, and civic life. Notably, Fried and colleagues (4) have already moved in this direction with their study of older adults’ participation in a volunteer school-based program, which suggested positive effects of such a program on physical, cognitive, and social activity. A second advantage is the explicit and broadly defined role for the environment, both physical and social, as well as more macro policies and systems. In this regard, explicit recognition that the environment plays a role at every stage of the disablement process is an important advancement, one ripe for hypothesis testing (5). Third, the availability of positive analogues for concepts that have traditionally been expressed in terms of loss is an advancement that allows researchers to bring into focus questions about how best to maximize functioning of older adults, irrespective of their stage in the disablement process (6). Finally, the distinction between capacity to perform and actual performance of a range of activities (7) opens up the possibility of studying how accommodations such as assistive devices and changes to the environment might bridge the gap between an individual's underlying capacity and actual performance of activities (8). During the design phase of NHATS, we have drawn upon this new language, as well as our highly valued Nagi roots. Four points regarding the middle panel of Figure 1—our current NHATS conceptualization—are noteworthy: We highlight the ICF term “capacity” to refer to an individual's physiological, cognitive, and sensory capabilities to carry out the building blocks of activities (e.g., mobility and other physical movements, learning, remembering, seeing, hearing, and communicating). Such measures are frequently subsumed in Nagi's “functional limitations,” whereas the ICF considers these for the most part subdomains of both “activities” and “participation.” We envision assessing these domains mainly through performance measures. We add a new domain—“accommodations”—that does not appear explicitly in either the Nagi model or the ICF framework. We define accommodations as behavioral responses to changes in capacity and include in this domain the receipt of help, take-up of assistive technology, changes to the environment, and other compensatory strategies (9) such as doing an activity less frequently, more slowly, or differently. The final “box” in the framework specifies two distinct concepts: the ability to carry out self-care (ADL-like) and domestic life (IADL-like) activities and the extent of participation in productive, generative, community, social, and civic life. The former reflects what is typically assessed as “disability” under the Nagi model. The latter explicitly captures elective but valued activities that represent an important extension of concerns about quality of life beyond the basics of self-care and domestic life. The work of Jette and colleagues (10,11) offers important foundations for empirically characterizing such distinctions. We recognize, as does the ICF, that the environment may influence the entire disablement process, and we envision measuring not only the physical but also the social and technological environments in which older adults carry out activities. Figure 1. Nagi, NHATs, and ICF frameworks. NHATS workgroups are currently operationalizing these concepts. It is early in the development process, with much testing yet to do before the new measures are deemed valid, and even more importantly, proven useful. But I hope—as in “A Field of Dreams”—if we build, validate, and disseminate such measures, gerontologists will surely come.