Dataset Information

Functioning and equality according to International Classification of Functioning, Disability and Health (ICF) in people with skeletal dysplasia compared to matched control subjects - a cross-sectional survey study.

ABSTRACT:

Background

Skeletal dysplasias are rare disorders often leading to severe short stature. This study aimed to gain new comprehensive information about functioning and equality in people affected by skeletal dysplasia compared to matched controls without skeletal dysplasia.

Methods

Functioning was assessed by questionnaire, which was formed by operationalizing International Classification of Functioning, Disability and Health (ICF) core set's categories into the items according to the ICF linking rules, using primarily Patient Reported Outcomes Measurement Information System PROMIS® - items.

Results

Altogether 80 subjects with skeletal dysplasia and 55 age-, gender- and place of residence -matched controls participated. People with skeletal dysplasia experienced more pain (p < 0.001) and the pain interfered more their daily lives (p = 0.037) compared to the controls. They had more problems related to musculoskeletal functions and exercise tolerance, difficulties in mobility, used more assistive products and technology and were more affected by climate and seasonal changes (p < 0.001). They met challenges in self-care, acquisition of goods and services and household tasks (p < 0.001) and in participating in close social relationships, leisure time activities (p < 0.001) and associations and organizational services (p = 0.007). They felt less satisfied with remunerative work (p = 0.003), felt more inequality (p = 0.008), met more negative attitudes of others (p < 0.001) and felt having less support given by family and friends (p = 0.022). They used more social and health services and experienced more dissatisfaction with those.

Conclusions

Our study indicates that skeletal dysplasias restrict functioning extensively and significantly affect daily living. By building accessible environment and improving equal services, functioning could be improved.

SUBMITTER: Hyvonen H

PROVIDER: S-EPMC7718696 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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Publications

Functioning and equality according to International Classification of Functioning, Disability and Health (ICF) in people with skeletal dysplasia compared to matched control subjects - a cross-sectional survey study.

Hyvönen Hanna H Anttila Heidi H Tallqvist Susanna S Muñoz Minna M Leppäjoki-Tiistola Sanna S Teittinen Antti A Mäkitie Outi O Hiekkala Sinikka S

BMC musculoskeletal disorders 20201204 1

<h4>Background</h4>Skeletal dysplasias are rare disorders often leading to severe short stature. This study aimed to gain new comprehensive information about functioning and equality in people affected by skeletal dysplasia compared to matched controls without skeletal dysplasia.<h4>Methods</h4>Functioning was assessed by questionnaire, which was formed by operationalizing International Classification of Functioning, Disability and Health (ICF) core set's categories into the items according to t ...[more]

PMID: 33276750

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Project description:BackgroundShoulder pain is a common condition with prevalence estimates of 7-26% and the associated disability is multi-faceted. For functional assessments in clinic and research, a number of condition-specific and generic measures are available. With the approval of the ICF, a system is now available for the analysis of health status measures. The aims of this systematic literature review were to identify the most frequently addressed aspects of functioning in assessments of shoulder pain and provide an overview of the content of frequently used measures.MethodsMeaningful concepts of the identified measures were extracted and linked to the most precise ICF categories. Second-level categories with a relative frequency above 1% and the content of measures with at least 5 citations were reported.ResultsA set of 40?second-level ICF categories were identified in 370 single-item measures and 105 multi-item measures, of these, 28 belonged to activities and participation, 11 to body functions and structures and 1 to environmental factors. The most frequently addressed concepts were: pain; movement-related body functions and structures; sleep, hand and arm use, self-care, household tasks, work and employment, and leisure. Concepts of psycho-social functions and environmental factors were less frequently included. The content overview of commonly used condition-specific and generic measures displayed large variations in the number of included concepts. The most wide-ranging measures, the DASH and ASES were linked to 23 and 16?second-level ICF categories, respectively, whereas the Constant were linked to 7 categories and the SST and the SPADI to 6 categories each.ConclusionsThis systematic review displayed that measures used for shoulder pain included more than twice as many concepts of activities and participation than concepts of body functions and structures. Environmental factors were scarcely addressed. The huge differences in the content of the condition-specific multi-item measures demonstrates the importance of clarifying the content to select the most appropriate measure both in research and in clinical work. For clinical situations, we propose use of a wide-ranging condition-specific measure that conceptualizes assessments of shoulder pain from a bio-psycho-social perspective. Further research is needed to assess how patient-reported problems in functioning are captured in the commonly used measures.

Project description:IntroductionDeafblindness, a health condition with varying combinations of hearing and vision impairment, affects functioning and social participation. In 2001, the World Health Organization (WHO) introduced the International Classification of Functioning, Disability, and Health (ICF) to examine human health and functioning. To use the ICF in clinical practice, smaller categories of ICF codes, referred to as Core Sets, were developed for specific health conditions. However, no ICF Core Set exists for deafblindness. As part of an ICF Core Set development, this paper examines the existing literature from an ICF perspective and links relevant data to the ICF categories.Evidence acquisitionThe systematic review followed the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA). Articles were selected from eight scientific databases, three journals, and Google Scholar. The research team linked outcome measures and qualitative studies to ICF codes using ICF linking rules. For each measure/qualitative study's final code list, they included each code only once after eliminating any duplicates. Subsequently, a frequency analysis was conducted, and ICF categories identified in at least five studies were included in the candidate categories list.Evidence synthesis147 articles met the eligibility criteria. Most studies were from Europe (N.=70) and North America (N.=41). 316 categories were identified in at least five studies that belong to one of four ICF components. This includes 112 categories in the body function component, 3 categories in body structure, 163 in activities and participation, and 38 in environmental factors. Additionally, 21 personal factors relating to demographics were identified. The most frequent category was listening (category d115) at 82.31%, followed by range of emotions (category b1522) at 78.91%, hearing function (category b230) at 68.03%, and assistive products and technology for communication (category e1251) at 63.27%.ConclusionsAs the second part of the first four studies in developing ICF Core Sets for deafblindness, this review described the ICF categories relevant to the functioning of individuals with deafblindness. These categories inform the development of the Core Sets on deafblindness from the researcher's perspective. The final Core Sets will guide clinical practice, programs, and policies for individuals with deafblindness.

Project description:Children in dentistry are traditionally described in terms of medical diagnosis and prevalence of oral disease. This approach gives little information regarding a child's capacity to maintain oral health or regarding the social determinants of oral health. The biopsychosocial approach, embodied in the International Classification of Functioning, Disability and Health - Child and Youth version (ICF-CY) (WHO), provides a wider picture of a child's real-life experience, but practical tools for the application of this model are lacking. This article describes the preliminary empirical study necessary for development of such a tool - an ICF-CY Core Set for Oral Health. An ICF-CY questionnaire was used to identify the medical, functional, social and environmental context of 218 children and adolescents referred to special care or paediatric dental services in France, Sweden, Argentina and Ireland (mean age 8 years ± 3.6 yrs). International Classification of Disease (ICD-10) diagnoses included disorders of the nervous system (26.1%), Down syndrome (22.0%), mental retardation (17.0%), autistic disorders (16.1%), and dental anxiety alone (11.0%). The most frequently impaired items in the ICF Body functions domain were 'Intellectual functions', 'High-level cognitive functions', and 'Attention functions'. In the Activities and Participation domain, participation restriction was frequently reported for 25 items including 'Handling stress', 'Caring for body parts', 'Looking after one's health' and 'Speaking'. In the Environment domain, facilitating items included 'Support of friends', 'Attitude of friends' and 'Support of immediate family'. One item was reported as an environmental barrier - 'Societal attitudes'. The ICF-CY can be used to highlight common profiles of functioning, activities, participation and environment shared by children in relation to oral health, despite widely differing medical, social and geographical contexts. The results of this empirical study might be used to develop an ICF-CY Core Set for Oral Health - a holistic but practical tool for clinical and epidemiological use.

Dataset Information

Functioning and equality according to International Classification of Functioning, Disability and Health (ICF) in people with skeletal dysplasia compared to matched control subjects - a cross-sectional survey study.

Background

Methods

Results

Conclusions

Publications

Functioning and equality according to International Classification of Functioning, Disability and Health (ICF) in people with skeletal dysplasia compared to matched control subjects - a cross-sectional survey study.

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