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Linking the Psychosocial Impact of Assistive Devices Scale (PIADS) to the International Classification of Functioning, Disability, and Health

Authors:
Silvia Traversoni at Istituti Clinici Scientifici Maugeri IRCCS
Silvia Traversoni
Jeffrey Jutai at University of Ottawa
Jeffrey Jutai
Cira Fundarò at Istituti Clinici Scientifici Maugeri IRCCS
Cira Fundarò
S. Salvini
S. Salvini
S. Salvini
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Abstract and Figures

Purpose Assistive technologies are widely implemented in clinical and research settings. Despite their dissemination, the psychosocial impact of their adoption still deserves further consideration. The aim of the present study is to determine the degree of compatibility between the Psychosocial Impact of Assistive Devices Scale (PIADS) and the International Classification of Functioning, Disability, and Health (ICF). Methods Six health professionals (two neurologists, one neuro-rehabilitation technician, two psychologists, one university professor of rehabilitation) created a technical board to discuss upon the PIADS–ICF linking. The standardized linking methodology was applied, and a Delphi technique was used to examine consensus. Results Five Delphi sessions were required to reach 100% of consensus and to finalize the procedure. Of the 26 PIADS’ items, 23 were linked to an ICF category: 9 items were endorsed at the 3rd ICF level, and 14 items at the 2nd ICF level. Two items were classified as “not defined” and 1 item as “not covered”. Conclusion The study highlighted the conceptual connection between the PIADS and the ICF framework and set a bio-psychosocial standpoint by which accounting the role of assistive devices in rehabilitation settings.
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Vol.:(0123456789)
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Quality of Life Research (2018) 27:3217–3227
https://doi.org/10.1007/s11136-018-1973-6
Linking thePsychosocial Impact ofAssistive Devices Scale (PIADS)
totheInternational Classification ofFunctioning, Disability,
andHealth
S.Traversoni1· J.Jutai2· C.Fundarò3· S.Salvini3· R.Casale4· A.Giardini1
Accepted: 16 August 2018 / Published online: 21 August 2018
© Springer Nature Switzerland AG 2018
Abstract
Purpose Assistive technologies are widely implemented in clinical and research settings. Despite their dissemination, the
psychosocial impact of their adoption still deserves further consideration. The aim of the present study is to determine the
degree of compatibility between the Psychosocial Impact of Assistive Devices Scale (PIADS) and the International Clas-
sification of Functioning, Disability, and Health (ICF).
Methods Six health professionals (two neurologists, one neuro-rehabilitation technician, two psychologists, one university
professor of rehabilitation) created a technical board to discuss upon the PIADS–ICF linking. The standardized linking
methodology was applied, and a Delphi technique was used to examine consensus.
Results Five Delphi sessions were required to reach 100% of consensus and to finalize the procedure. Of the 26 PIADS’
items, 23 were linked to an ICF category: 9 items were endorsed at the 3rd ICF level, and 14 items at the 2nd ICF level. Two
items were classified as “not defined” and 1 item as “not covered”.
Conclusion The study highlighted the conceptual connection between the PIADS and the ICF framework and set a bio-
psychosocial standpoint by which accounting the role of assistive devices in rehabilitation settings.
Keywords International Classification of Functioning Disability and Health· Psychosocial impact· Assistive devices·
Health-Related Quality of Life· Rehabilitation
Abbreviations
ICF International Classification of Functioning, Dis-
ability, and Health
PIADS Psychosocial Impact of Assistive Devices Scale
HRQoL Health-Related Quality of Life
Introduction
Compatibility of measures represents one of the major chal-
lenges in clinical practice and research [1, 2]. A brief but
effective communication among healthcare-professionals,
the comprehensive dissemination of a standardized unified
language, as well as the application of a consistent, shared,
and operational paradigm are essential for efficiency and
quality treatment in healthcare settings [3]. The statement
is pivotal within rehabilitation contexts, as health-care pro-
fessionals constantly need to cooperate in multidisciplinary
teams to accomplish effective care planning [4].
In recent decades, the clinical definition of disability has
been widened [5]. Research studies recognized the impor-
tance of psychological, environmental, and social variables,
emphasizing the need for an interdisciplinary and multidi-
mensional approach to the matter. With the introduction
of theWHO International Classification of Functioning,
Disability, and Health (ICF), the deterministic approach
which assigns the origin of an impairment exclusively to
organic outputs of an underlying physical disease has been
* A. Giardini
anna.giardini@icsmaugeri.it
1 Psychology Unit, Istituti Clinici Scientifici Maugeri, IRCSS,
Montescano, PV, Italy
2 Interdisciplinary School ofHealth Sciences, University
ofOttawa, Ottawa, Canada
3 Neurophysiopathology Unit, Istituti Clinici Scientifici
Maugeri, IRCSS, Montescano, PV, Italy
4 Department ofAdvanced Technology Rehabilitation
andPain Rehabilitation Unit, Habilita Hospitals & Research,
ZingoniadiCiserano, BG, Italy
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
... To assess QoL quantitatively, the Psychosocial Impact of Assistive Devices Scale (PIADS) was used. The PIADS consists of a brief self-report questionnaire of 26 items, designed to assess the impact of an assistive device on psychological well-being and subjective QoL of the users (Day and Jutai, 1996;Day et al., 2002;Jutai and Day, 2002;Traversoni et al., 2018). The scale has three subscales: competence (12 items), adaptability (6 items), and selfesteem (8 items). ...
... Each item on all subscales is measured on a seven-point Likert scale, ranging from −3 (maximum negative impact) to + 3 (maximum positive impact). The neutral score (zero score) represents no change or no perceived impact by using the device (Devitt et al., 2004;Traversoni et al., 2018). The results of the PIADS are reported as median scores for all three subscales and each item. ...
... internal consistency (Cronbach's alpha 0.95 for PIADS total score, 0.92 for competence subscale, 0.88 for adaptability subscale and 0.87 for self-esteem subscale) (Chae and Jo, 2014) and acceptable concurrent validity (ICC: 0.77-0.83) (Traversoni et al., 2018). It has been used in research with different assistive technologies, although not yet with the running frame. ...
The Impact of Frame Running on Quality of Life in Young Athletes With Mobility Limitations
Article
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  • Apr 2022
Purpose The para-athletic sport Frame Running is developed for persons with neurological impairments causing severe limitations of walking ability. Participating in sports can contribute to a better quality of life (QoL). It is unknown if participation in Frame Running contributes to QoL in children with mobility limitations. This study aims to explore the changes in QoL in children and youth who started Frame Running. Materials and Methods We conducted a cross-sectional study amongst young Frame Running athletes with mobility limitations due to various underlying causes, aged 6–19 years, who are members of one of the Frame Running groups in the Netherlands. For 62 athletes, parents completed the Psychosocial Impact of Assistive Devices Scale (PIADS) questionnaire (subscales: competence, adaptability, and self-esteem). For six athletes, parents were interviewed to obtain more in-depth insight in the perceived changes in the QoL of their children. Results Parents (of 58% boys, mean age 12 years 4 months; SD 3 years 3 months; 52% supported walkers) reported a significant positive change on all three subscales of the PIADS questionnaire since their children started Frame Running. Most change was experienced in the items performance, the ability to participate, happiness and self-confidence. Quotes of the parents who were interviewed elucidated these changes. Conclusion Frame Running increased QoL in young athletes with a mobility limitation. Frame Running may therefore be advised for these children and youth to improve QoL.
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... The ICF aims to establish a common language to improve communication between different users, allow data comparison and provide a systematic coding scheme for health information systems. Studies have sought to develop and identify the content of specific instruments by linking them to the ICF framework [6,[17][18][19][20][21]. ...
... Recently, researchers have been conducting studies designed to determine the extent to which measurement instruments developed before the ICF are compatible with that biopsychosocial model of functioning model [19,27,28]. Research is also being conducted into linking the ICF with instruments developed since the development of the ICF to classify and describe the concepts in those instruments, such as our study [17,20,27,28]. ...
Identifying the content of the Lower Extremity Motor Activity Log based on the International Classification of Functioning, Disability and Health
Article
Purpose: To identify the content and the constructs measured in the Lower Extremity Motor Activity Log (LE-MAL) based on the International Classification of Functioning, Disability and Health (ICF) framework and to determine whether the instrument items fit within the ICF mobility domain. Methods: Concepts and constructs measured within each scale were linked to the best-matched ICF categories and classified using established linking rules. Two independent researchers determined the initial linkages. A final consensus was reached with the other researchers. The agreement was analysed through the agreement percentage and the kappa coefficient. Results: The subscales assess performance through information about need or dependency, personal and environmental factors, and appraisal of the items. Thirteen concepts were identified in LE-MAL: two concepts for the Assistance Scale are covered in the environmental factors component; 10 concepts for the Functional Performance Scale where all items are covered in the mobility domain; one concept for the confidence scale is covered in the body functions component. Conclusions: The general construct of LE-MAL assessed is performance in the ICF mobility domain and provides additional information about the mental function, environmental factors, independence, appraisal, and personal factors. The study highlighted the conceptual connection between the LE-MAL and the ICF framework.
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... Frameworks such as the International Classification of Functioning, Disability and Health (ICF) and the World Health Organization Quality of Life (WHOQOL)(World Health Organization, 2012) now emphasise the importance of psychological and social dimensions in understanding and enhancing the quality of life for disabled individuals. However, much of the existing research on the impact of ATs has primarily focused on the functional outcomes associated with their use and attributed the poor uptake of these technologies to functional issues (Jutai & Day, 2002;Traversoni et al., 2018). Two key points should be raised in relation to this. ...
Understanding the psychosocial impact of assistive technologies for blind and partially sighted people: a scoping review protocol (Preprint)
Preprint
Full-text available
  • Aug 2024
BACKGROUND There has been a rapid growth in the literature on the design and evaluation of assistive technologies for blind and partially sighted people, yet there is a lack of a comprehensive analysis of the existing literature on the classification of immediate-, short-, medium-, and long-term psychosocial impact of assistive technologies on the quality of life of blind and partially sighted people. OBJECTIVE This scoping review aims to identify and synthesise the existing literature on the psychosocial impact of assistive technologies on the quality of life of blind and partially sighted people. METHODS Searches will be conducted across seven electronic research databases - CINAHL (EBSCO), PsycINFO (EBSCO), ACM Digital Library, IEEE Xplore, Scopus, Web of Science, and Google Scholar (first 100 records). Data will be extracted for author(s), year of publication, country of origin, purpose, population, methodology, concepts of interest, outcomes, and key findings relating to the scoping review objectives. The findings will present a descriptive synthesis of the search results. RESULTS The database search was conducted in July 2024. The database search identified a total of 1,145 records. It is anticipated that the study findings will be submitted for publication in a peer-reviewed journal by the end of September 2024. CONCLUSIONS This study will provide a synthesis of the recent body of work on the psychosocial impact of assistive technologies for blind and partially sighted people and recommendations for researchers and designers interested in this research area. CLINICALTRIAL https://osf.io/sk7n8/?view_only=d95ccaf7b674418db27ac9935a23a0bd
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... By allowing clinicians and researchers to use a common language when describing functioning in different health conditions, the ICF facilitates the comparison of results. Accordingly, and because it is a useful framework for identifying and comparing the concepts that underpin outcome measures (Cieza et al., 2002), several assessment instruments have been successfully linked to the ICF language (Azzopardi et al., 2016;Jamshidi et al., 2022;Letellier et al., 2015;Marques et al., 2014;Nicol et al., 2016;Tiwari et al., 2022;Traversoni et al., 2018;Wong et al., 2017). In fact, linking an instrument to the ICF is now considered good practice so that clinicians and researchers are aware of which specific ICF domains are addressed by a given instrument (Riva et al., 2010). ...
Symptoms and functioning: a content analysis of the PANSS under the ICF framework
Article
  • Mar 2023
  • J Ment Health
Purpose: The study aimed to compare the content of the Positive and Negative Syndrome Scale (PANSS) with that of the International Classification of Functioning, Disability, and Health (ICF) and to examine the extent to which PANSS items are represented in the ICF Core Sets (ICF-CS) for schizophrenia. Methods: The 30 items of the PANSS were linked to the ICF using established rules by two health professionals experienced in applying the ICF conceptual framework. Results: PANSS items were linked to 42 unique ICF categories, corresponding mainly to the Body functions component; categories b160 Thought functions and b152 Emotional functions from this component were the most frequently linked. Regarding the Activities and participation component, the second-level category d720 Complex interpersonal interactions was the most frequently linked to PANSS items. Overall, PANSS items covered 18% and 40% of the categories included, respectively, in the Comprehensive and Brief versions of the ICF-CSs for schizophrenia. No PANSS items were linked to categories from the Body structures or Environmental factors components. Conclusions: The PANSS broadly covers the content of the ICF, especially as regards mental and movement-related functions, although it also covers some aspects of interpersonal relationships.
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... No obstante, no ha sido empleado en PA realizados en impresión 3D, pero sí para ver el impacto de PA muy específicos como la férula SaebloFlex (Andriske, Verikios y Hitch, 2017). Además, parece subyacer que la escala PIADS está muy ligada a la CIF, y puede ser útil para la clínica diaria ya que la CIF ofrece no solo un lenguaje común entre profesionales sino que es válida para cualquier tipo de discapacidad (Traversoni et al., 2018). ...
Psychosocial impact of low cost assistive technologies vs. products in 3D printing in people with adult cerebral palsy
Article
Full-text available
  • Jul 2021
Resumen Los productos y tecnologías de apoyo son una estrategia habitual de intervención para personas que presentan parálisis cerebral. Son muchos los profesionales que emplean en su clínica diaria productos de apoyo de bajo coste, e incluso el uso de nuevas tecnologías como la impresión 3D para su elabo-ración. El diseño de este estudio es no experimental trasversal correlacional, con un total de 8 partici-pantes pertenecientes a ASPACE-ASTURIAS. Los instrumentos empleados fueron la escala PIADS, el ATD-PA, y un Ad-hoc, además se empleó el modelo Wisconsin Assistive Technology Iniative como guía. La mayor parte de los PA obtuvieron una puntuación positiva en cuanto al impacto psicosocial percibi-do, salvo el producto de apoyo tipo licornio. Es necesario realizar estudios en medidas de resultados en productos de apoyo de bajo coste para mejorar los servicios de atención a personas con discapacidad y mejorar los servicios de asesoramiento, evaluación y creación de productos de apoyo. Palabras clave: tecnología asistiva, productos de apoyo, parálisis cerebral, innovación en 3D. Abstract Assistive products and technologies are a common intervention strategy for people with cerebral palsy. There are many professionals who use low-cost assistive technologies in their daily clinical activities, as well as new technologies such as 3D printing for making the products. This study is of a non-experimental correlational transversal design, involving a total of 8 participants belonging to the Association for the aid of people with Cerebral Palsy (ASPACE) in Oviedo, Spain. The instruments used were the PIADS scale, the ATD-PA, and an ad-hoc instrument; and the Wisconsin Assistive Technology Initiative model was used as a guide. Most PAs obtained positive scores with regard to the psychosocial impact perceived, except for the licorin-like assistive technology. Studies on the outcome measures of low-cost assistive technologies are necessary for improving care services for people with disabilities and for improving consultancy, assessment and product creation services.
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... The PIADS has been found to be linked to the International Classification of Functioning, Disability and Health (ICF). 22 The 2 highest rated items from the current study are included in the Adaptability subscale of PIADS and represent a positive impact on the ICF Activities and Participation Domain. 23 ...
Exploring the psychosocial impact of simple robotic assistive technology on adolescents with neuromuscular disease
Article
Full-text available
  • Apr 2022
Introduction Adolescents with neuromuscular disease face significant challenges accessing social leisure activities. Assistive technology has provided new opportunities for those with neuromuscular disease to augment their social lives and leisure pursuits. However, there is limited research evaluating the impact of these technologies. Methods This study employed mixed methods to evaluate the potential impact of simple robotics on psychosocial factors and quality of life for those adolescents living with neuromuscular diseases. Semi-structured qualitative interviews were performed, as well as the adult Psychosocial Impact of Assistive Technology Device (PIADS) with 9 adolescents, ranging in age from 13 to 19 years old. Results Thematic analysis of the qualitative data resulted in five major themes: everyday lives and seasonality; socialization; leisure activities; robotics as a leisure activity; and ease of use of robotics. The PIADS found the individual scores demonstrated a range from very little yet positive perceived impact to maximum positive impact in each subscale (competence, adaptability, and self-esteem). Conclusions Simple mainstream robotics, paired with personalized access methods to control them, offer potential leisure and social integration opportunities to adolescents with neuromuscular diseases in a variety of settings, indoors and outdoors. The findings of this study suggest there are opportunities for this type of mainstream technology to be applied not just to adolescents, but potentially children of all ages with neuromuscular disease, across a variety of environments.
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... In summary, our results build on existing evidence of the good to excellent psychometric properties of the PIADS scale and corroborate the possibility of using it in subsequent studies as a valid and reliable outcomes measure of the psychosocial impact of assistive technology users. In addition, other recent results have also shown the compatibility of the PIADS language with models of human functioning frequently used in the rehabilitation field, such as the International Classification of Functioning, Disability and Health (ICF), which strengthens the potential implementation of PIADS in those contexts (Traversoni et al., 2018). Also, the three PIADS dimensions have proved their usefulness as relevant determinants of the adoption of eHealth solutions in the elderly (Axelsson and Wikman, 2016). ...
Psychometric Properties of the Spanish Version of Psychosocial Impact of Assistive Devices Scale in a Large Sample of People With Neuromuscular, Neurological, or Hearing Disabilities
Article
Full-text available
  • Jun 2021
Assistive technology (AT) is any device, software, or equipment designed for and used by individuals with disabilities to engage in everyday activities and achieve independence. However, the usefulness of those technology-based or supported treatments is a complex issue that has led to the development of various conceptual models for assistive technology outcomes research and practice as well as different assessment tools that help to explore the effect of technology on people's lives. One of those instruments is the Psychosocial Impact of Assistive Device Scale (PIADS), a 26-item questionnaire that measures the psychosocial impact of interventions, using assistive devices in three quality-of-life domains: competence, adaptability, and self-esteem. PIADS scale has been translated and adapted to several languages, and it has been successfully used to measure AT outcomes in different disability profiles to predict abandonment or even as a relevant determinant of future adoption of eHealth. Quinteiro (2010) adapted PIADS to Spanish for the first time, although no studies have yet been published to systematically study its psychometric properties. Therefore, the purpose of this study was to evaluate measurement properties of the Spanish version of PIADS scale by means of a dataset obtained from its application to a large sample (n = 417) of people with neuromuscular, neurological, or hearing disabilities that used different assistive devices. The results will provide valuable indicators about the measurement quality of the Spanish PIADS scale and will help to promote the use of reliable and valid AT outcome assessment tools for research and clinical purposes.
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... End users saw a reduction in IPPA scores and positive impact in PIADS scores after routine use of the AgileLife PTS. Both the PIADS and IPPA are user-centered measures of quality of life, meaning that they measure device acceptance based on the goals or values of an individual [18,24]. While end users identified a small number of problems that they thought would be improved via the assistive technology solution using the IPPA, they reported reduced difficulty of the identified tasks after intervention with the AgileLife PTS. ...
Preliminary evaluation of an automated robotic transfer assist device in the home setting
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  • Feb 2021
Purpose: The purpose of this study was to examine the effects of six weeks of routine use of a novel robotic transfer device, the AgileLife Patient Transfer System, on mobility-related health outcomes, task demand, and satisfaction relative to previous transfer methods. Materials and methods: Six end users and five caregivers used the system in their homes for six weeks. Participants completed several surveys examining perceived demands related to preparing and performing a transfer and mobility-related health outcomes pre and post intervention. Participants were also asked about their satisfaction with using the technology compared to previous transfer methods. Results: Both end users and caregivers reported reduction in perceived physical demand (p = 0.007) and work (p ≤ 0.038) when preparing for and performing a transfer. End users indicated that the device intervention had a positive impact, indicating some improvements to health-related quality of life as well as improved competence, adaptability, and self-esteem post-intervention. All participants were highly likely to recommend the technology to others. Conclusion: The AgileLife Patient Transfer System is a promising new form of transfer technology that may improve the mobility and mobility-related health of individuals with disabilities and their caregivers in home settings. Implications for rehabilitation Robotic transfer assistance reduced physical demand and work among end users and caregivers. The robotic device had a positive impact on some quality of life outcomes after 6 weeks of use. Users were highly likely to recommend the robotic transfer device to others.
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User experience of passive hip flexion device in people with multiple sclerosis: Exploring improvements and overcoming barriers
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Background Multiple sclerosis (MS) is a chronic disease that primarily affects young adults and causes disability by impairing the central nervous system. Gait impairments are common in people with MS (pwMS), and lower limb orthoses are often used to improve stability and mobility. However, compliance with orthotic devices can vary among individuals due to issues related to the appropriate prescription and lack of acceptability. Objective In this observational, cross-sectional study, we aimed to explore the experience of wearing a passive hip flexion device in a cohort of pwMS. Methods We included men and women >18 years old affected by MS (Expanded Disability Status Scale >4) who have been using a passive hip flexion device (ExoBand, Moveo srl) since 2020 for at least 15 days. The participants completed a phone survey that collected demographic, anthropometric, and clinical data, their perceptions of the device’s impact using the Psychosocial Impact of Assistive Devices (PIADS) questionnaire, and a qualitative part with an open-ended question. Results A total of 41 patients completed the survey. The participants experienced improvements in all 3 areas of the PIADS questionnaire since using the ExoBand ( P <0.001). The area of competence showed the highest improvement, particularly in terms of efficiency and usefulness. The majority of participants (85.4%) perceived an improvement from using the device, reporting better quality of movement and increased walking distance. Only a small percentage (26.8%) did not perceive any benefits, mainly due to discomfort and personal factors. Conclusions This study highlighted the satisfaction among pwMS with the use of the ExoBand device and emphasized the importance of addressing individual needs during the orthotic prescription process. This study represents the first exploration of the perspective and perception of using a passive hip flexion device in pwMS. Our results support the need to assess user experience and the psychosocial impact of these devices on people’s lives to better understand the barriers and reasons behind their underutilization. Further research with a larger and heterogeneous population is recommended to gather more comprehensive data.
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Implementation of a real-world based ICF set for the rehabilitation of respiratory diseases: a pilot study
Article
  • Oct 2019
  • MINERVA MED
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Health-related quality of life in coronary heart disease: A systematic review and meta-analysis mapped against the International Classification of Functioning, Disability and Health
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Full-text available
  • Oct 2018
  • QUAL LIFE RES
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Motor and psychosocial impact of robot-assisted gait training in a real-world rehabilitation setting: A pilot study
Article
Full-text available
In the last decade robotic devices have been applied in rehabilitation to overcome walking disability in neurologic diseases with promising results. Robot assisted gait training (RAGT) using the Lokomat seems not only to improve gait parameters but also the perception of well-being. Data on the psychosocial patient-robot impact are limited, in particular in the real-world of RAGT, in the rehabilitation setting. During rehabilitation training, the Lokomat can be considered an “assistive device for movement”. This allowed the use of the Psychosocial Impact of Assistive Device Scale- PIADS to describe patient interaction with the Lokomat. The primary aim of this pilot study was to evaluate the psychosocial impact of the Lokomat in an in-patient rehabilitation setting using the PIADS; secondary aims were to assess whether the psychosocial impact of RAGT is different between pathological sub-groups and if the Lokomat influenced functional variables (Functional Independence Measure scale–FIM and parameters provided by the Lokomat itself). Thirty-nine consecutive patients (69% males, 54.0±18.0 years) eligible for Lokomat training, with etiologically heterogeneous walking disabilities (Parkinson’s Disease, n = 10; Spinal Cord Injury, n = 21; Ictus Event, n = 8) were enrolled. Patients were assessed with the FIM before and after rehabilitation with Lokomat, and the PIADS was administered after the rehabilitative period with Lokomat. Overall the PIADS score was positive (35.8±21.6), as well as the three sub-scales, pertaining to “ability”, “adaptability” and “self-esteem” (17.2±10.4, 8.9±5.5 and 10.1±6.6 respectively) with no between-group differences. All patients significantly improved in gait measure and motor FIM scale (difference after—before treatment values: 11.7±9.8 and 11.2±10.3 respectively), increased treadmill speed (0.4 ± 0.2m/s), reduced body weight support (-14.0±9.5%) and guidance force (-13.1 ± 10.7%). This pilot study indicates that Lokomat, in a real-world in-patient setting, may have a generalised approval, independent of disease, underlining the importance of the psycho-social framework for patients training with assistive robotic-devices.
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Computer assistive technology and associations with quality of life for individuals with spinal cord injury: a systematic review
Article
Full-text available
  • Mar 2018
  • QUAL LIFE RES
Study design: Systematic review. Objective: The purpose of the study was to identify and organize evidence regarding quality of life influenced by assistive technology related to computers for people with traumatic and non-traumatic spinal cord injury (SCI). Setting: Distrito Federal, Brazil. Methods: A search strategy was conducted on the PubMed, PEDro, LILACS, PsycINFO, and SCIELO. All types of study designs considering assistive technology to improve quality of life for individuals with SCI were included. After search strategy procedures, ten references were included to review. The methodologic quality of each study was evaluated using the Level of Evidence proposed by the Oxford Centre for Evidence-based Medicine. Results: Most of the studies showed that devices for computer access improve the quality of life of people with SCI, regardless of the level of injury and type of resource. However, the positive outcomes in the quality of life should be interpreted with caution, as several methodological limitations were observed in the articles. Conclusions: Despite the scarcity of studies and their methodological limitations, there is evidence that assistive technology for computer access favors the quality of life of people with tetraplegia due to SCI, since it improves participation, independence, and self-esteem.
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Applying the ICF linking rules to compare population-based data from different sources: an exemplary analysis of tools used to collect information on disability
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Full-text available
  • Oct 2017
Background: Data on disability are regularly collected by different institutions or ministries using specific tools for different purposes, for instance to estimate the prevalence of disability or eligibility of specific populations for social benefits. The interoperability of disability data collected in countries is essential for policy making and to monitor the implementation of the Convention on the Rights of Persons with Disabilities. The first objective of this paper is to map and compare tools that collect data on disability for different purposes, more specifically the Brazilian National Health Survey and the Brazilian Functioning Index to the World Health Organization (WHO) and the World Bank Model Disability Survey (MDS), currently recommended as a standard tool for disability measurement. The second objective is to demonstrate the usefulness and value of the International Classification of Functioning, Disability and Health Linking Rules to map and compare population-based surveys and other content-related tools collecting data on disability, even when these have already been developed based on the International Classification of Functioning, Disability and Health. Methods: Disability information collected with the three different tools was mapped and compared using the International Classification of Functioning, Disability and Health Linking Rules. Results: Although the disability module in the Brazilian National Health Survey is fundamentally different from the MDS, the mapping disclosed that several modules of the Brazilian National Health Survey already cover many aspects necessary to estimate prevalence and understand disability as currently recommended by the WHO and the World Bank. The Brazilian Functioning Index and the MDS are both based on the International Classification of Functioning, Disability and Health and are very similar in the approach and content of their questions on functioning. Specific information on environmental factors is essential to identify needs and barriers, as well as to devise procedures to reduce injustice and inequalities. This information is still not targeted broadly enough in both the Brazilian National Health Survey and the Brazilian Functioning Index. Conclusions: Overall, this mapping exercise showed that applying the International Classification of Functioning, Disability and Health linking rules to population-based data coming from different sources provides researchers and stakeholders involved in decision-making with standardized and straightforward information about overlaps and gaps. • Implications for Rehabilitation • Data on functioning and disability regularly collected with different purposes and by different institutions or ministries within a country can be compared using the International Classification of Functioning, Disability and Health as a reference framework and the International Classification of Functioning, Disability and Health linking rules. • The recently published refinements of the International Classification of Functioning, Disability and Health Linking Rules go beyond the sole linking to International Classification of Functioning, Disability and Health categories and provide standardized procedures to document the perspective of linked questions or the categorization of response options. They are therefore useful to compared tools that have been developed based on the International Classification of Functioning, Disability and Health. • The current disability module of the Brazilian Health Survey needs a revision to be suitable to collect data on disability that is Convention on the Rights of Persons with Disabilities conform and guarantees interoperability with disability data from other sources in Brazil, especially from disability assessment for social benefits and implementation of policies.
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Linking of the quality of life in neurological disorders (Neuro-QoL) to the international classification of functioning, disability and health
Article
Full-text available
  • Sep 2017
  • QUAL LIFE RES
Background: The quality of life in neurological disorders (Neuro-QoL) is a U.S. National Institutes of Health initiative that produced a set of self-report measures of physical, mental, and social health experienced by adults or children who have a neurological condition or disorder. Objective: To describe the content of the Neuro-QoL at the item level using the World Health Organization's international classification of functioning, disability and health (ICF). Methods: We assessed the Neuro-QoL for its content coverage of functioning and disability relative to each of the four ICF domains (i.e., body functions, body structures, activities and participation, and environment). We used second-level ICF three-digit codes to classify items into categories within each ICF domain and computed the percentage of categories within each ICF domain that were represented in the Neuro-QoL items. Results: All items of Neuro-QoL could be mapped to the ICF categories at the second-level classification codes. The activities and participation domain and the mental functions category of the body functions domain were the areas most often represented by Neuro-QoL. Neuro-QoL provides limited coverage of the environmental factors and body structure domains. Conclusions: Neuro-QoL measures map well to the ICF. The Neuro-QoL-ICF-mapped items provide a blueprint for users to select appropriate measures in ICF-based measurement applications.
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Health-related quality of life and orthosis use in a Swedish population with arthrogryposis
Article
  • May 2018
Background: Joint contractures are the main characteristics for children with arthrogryposis multiplex congenita. Orthoses are often used to enable or facilitate walking. Objectives: To describe health-related quality of life in children with arthrogryposis multiplex congenita and satisfaction with orthoses in those using orthoses. Study design: Cross-sectional study. Methods: A total of 33 children with arthrogryposis multiplex congenita participated in the study. Questionnaires were used which measured health-related quality of life (Child Health Questionnaire-Parent Form and EQ-5D youth), mobility and self-care (Paediatric Evaluation of Disability Inventory) and satisfaction with orthoses (Quebec User Evaluation of Satisfaction with Assistive Technology 2.0). Children were divided into groups based on the use of orthoses: Ort-D were dependent on orthoses for walking, Ort-ND used orthoses but were not dependent on them for walking and Non-Ort did not use orthoses. Results: Children with arthrogryposis multiplex congenita had significantly lower Child Health Questionnaire scores in 9 of 12 subscales compared to healthy controls. The children's reported perceived health with EQ-5D youth did not show any difference between children using orthoses or children using only shoes. Paediatric Evaluation of Disability Inventory showed less mobility in Ort-D than in Non-Ort. In total, both orthosis groups were 'quite satisfied' with their orthoses. Conclusion: Child Health Questionnaire-physical functioning was lowest in children who were dependent on orthoses (Ort-D) for walking. Both Ort-D and Ort-ND were similar satisfied with their orthoses. Clinical relevance This study contributes to knowledge about health-related quality of life in a group of ambulatory children with arthrogryposis multiplex congenita. For children using orthoses, it is relevant to capture their opinion about their orthoses but a questionnaire specifically for children should be developed.
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The ICF has made a difference to functioning and disability measurement and statistics
Article
  • Feb 2018
Aims: Fifteen years after the publication of the International Classification of Functioning, Disability and Health (ICF), we investigated: How ICF applications align with ICF aims, contents and principles, and how the ICF has been used to improve measurement of functioning and related statistics. Methods: In a scoping review, we investigated research published 2001–2015 relating to measurement and statistics for evidence of: a change in thinking; alignment of applications with ICF specifications and philosophy; and the emergence of new knowledge. Results: The ICF is used in diverse applications, settings and countries, with processes largely aligned with the ICF and intended to improve measurement and statistics: new national surveys, information systems and ICF-based instruments; and international efforts to improve disability data. Knowledge is growing about the components and interactions of the ICF model, the diverse effects of the environment on functioning, and the meaning and measurement of participation. Conclusion: The ICF provides specificity and a common language in the complex world of functioning and disability and is stimulating new thinking, new applications in measurement and statistics, and the assembling of new knowledge. Nevertheless, the field needs to mature. Identified gaps suggest ways to improve measurement and statistics to underpin policies, services and outcomes. • Implications for Rehabilitation • The ICF offers a conceptualization of functioning and disability that can underpin assessment and documentation in rehabilitation, with a growing body of experience to draw on for guidance. • Experience with the ICF reminds practitioners to consider all the domains of participation, the effect of the environment on participation and the importance of involving clients/patients in assessment and service planning. • Understanding the variability of functioning within everyday environments and designing interventions for removing barriers in various environments is a vital part of rehabilitation planning.
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Research on physical disability in sociological social psychology: The state of the field and future directions
Article
  • Dec 2017
We discuss the state of the research literature on physical disability in sociology, focusing particularly on social psychology. We first trace the history of treatments of disability in the field, noting a movement from a medical model that located disability in the individual to a social model that recognizes physical disability as an important social characteristic that is both produced by and has important consequences for social interactions. We then summarize contemporary research, identifying areas in which sociological research tends to be located, particularly in critical approaches, health-related outcomes, and stigma. Finally, we discuss areas in which more research on physical disability would be fruitful. We believe that research on group processes, intersectionality, and identity would each especially benefit from greater attention to physical disability.
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Standardized reporting of functioning information on ICF--based common metrics
Article
  • May 2017
  • Eur J Phys Rehabil Med
Background: In clinical practice and research a variety of clinical data collection tools are used to collect information on people's functioning for clinical practise and research and National Health Information Systems. Reporting on ICF-based common metrics enables standardized documentation of functioning information in national health information systems. Objective: The objective of this methodological note on applying the ICF in rehabilitation is to demonstrate how to report functioning information collected with a data collection tool on ICF-based common metrics. We first specify the requirements for the standardized reporting of functioning information. Secondly, we introduce the methods needed for transforming functioning data to ICF-based common metrics. Finally, we provide an example. Methods: The requirements for standardized reporting are as follows: 1) having a common conceptual framework to enable content comparability between any health information; and 2) a measurement framework so that scores between two or more clinical data collection tools can be directly compared. The methods needed to achieve these requirements are the ICF Linking Rules and the Rasch Measurement Model. Using data collected incorporating the 36- item Short Form Health Survey (SF-36), the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0), and the Stroke Impact Scale 3.0 (SIS 3.0), the application of the standardized reporting based on common metrics is demonstrated. Results: A subset of items from the three tools linked to common chapters of the ICF (d4 Mobility, d5 Self-care and d6 Domestic life), were entered as 'super items' into the Rasch model. Good fit was achieved with no residual local dependency and a unidimensional metric. A transformation table allows for comparison between scales, and between a scale and the reporting common metric. Discussion: Being able to report functioning information collected with commonly used clinical data collection tools with ICF-based common metrics enables clinicians and researchers to continue using their tools while still being able to compare and aggregate the information within and across tools.
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