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Living with spinal cord injury in Mongolia: A qualitative study on perceived environmental barriers
(2020)
Context: Environmental factors play a key role in the lives of individuals with a spinal cord injury (SCI). This study identifies environmental barriers and their impacts on daily lives as perceived by individuals living with SCI in Mongolia.
Design: A qualitative study with semi-structured interviews was conducted. A topic guide for the interviews was structured around the components of the International Classification of Functioning, Disability, and Health.
Setting: Urban and rural areas of Mongolia.
Participants: A purposive sample of 16 persons with traumatic SCI.
Interventions: Not applicable.
Outcome Measures: Not applicable.
Results: Seven categories of environmental barriers were mentioned, such as poor access to the physical environment, absence of wheelchair-friendly transportation, negative societal attitudes, inadequate health and rehabilitation services, lack of access to assistive devices and medicines, limited financial resources for healthcare, and inaccurate categorization of disabilities in laws. These barriers were claimed to have an impact on physical and psychological health, limit activities, and restrict participation in almost all areas of life.
Conclusion: This study contributes to the identification of targets for interventions aimed at improving the lived experience of persons with SCI in a low-resource context. The findings reveal that while the Mongolian government already has laws and policies in place to improve access to the physical environment, transportation, assistive devices and employment, much more has to be done in terms of enforcement. Specialized SCI care and rehabilitation services are highly demanded in Mongolia.
Quality issue
Responding to person's health and related needs requires the availability of health information that reflects relevant aspects of a health condition and how this health condition impacts on a person's daily life.
Initial assessment
Health information is routinely collected at different time points by diverse professionals, in different settings for various purposes with varying methods. Consequently, health information is not always comparable, posing a challenge to the regular monitoring of quality.
Choice of solution
The World Health Organization's (WHO) International Classification of Diseases (ICD), International Classification of Functioning, Disability and Health (ICF), and International Classification of Health Interventions (ICHI; under development) are complementary and serve as meaningful reference classifications for comparing data on persons’ health and related interventions across health systems.
Implementation
We developed a systematic approach of translating routinely collected information into a standardized report based on the three WHO reference classifications and the Rehab-Cycle®. Subsequently, we have demonstrated its application using five random case records of individuals attending a rehabilitation program.
Evaluation
All identified concepts were able to be linked to WHO's reference classifications. The ICF served as a tool to standardize information on rehabilitation goals and their achievement. The ICHI served as the basis for reporting the interventions that were documented in the case records, including the intervention targets that were derived from the ICF codes.
Lessons learned
Our experience shows that, it is possible to translate routinely collected information into standardized reports by linking existing narrative records with WHO's reference classifications.
Making one's own choices is an important part of leading a fulfilling life within society. However, people with IDs often face significant obstacles when making their own decisions. Article 12 (Equal recognition before the law) of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) aims to ensure firstly that people with IDs and others with compromised capacity are nonetheless recognized as legal individuals, and secondly that assistance is provided in the form of supported decision‐making in order to exercise this resulting legal capacity. It is unclear whether current national legislation in any country satisfies these requirements in practice. This study utilizes institutional ethnography to reveal how decision‐making is coordinated in practice for people with mild to moderate IDs living in supported residential environments in England, and to determine whether these processes are compliant with Article 12 of the CRPD. Data collection was based on observations, semi‐structured interviews, and documentary analysis, involving 29 participants including people with mild to moderate IDs. The results point to the complexity of supported decision‐making and identify three main categories of decision‐making: spontaneous decisions, mid‐term decisions, and strategic decisions. The data also show that people with mild to moderate IDs are able to exercise their legal capacity through support decision‐making in their everyday life. Immediate and informal supported decision‐making exists in daily practice for people with mild to moderate IDs living in supported residential environments. Although there are structures in place for implementing supported decision‐making, various barriers persist that limit the overall efficacy and consistency of the realization of supported decision‐making, for example, multiple use of mental capacity assessments. Such practices move away from the supported decision‐making model toward substituted decision‐making.
Purpose
The content of and methods for collecting health information often vary across settings and challenge the comparability of health information across time, individuals or populations. The International Classification of Functioning, Disability and Health (ICF) contains an exhaustive set of categories of information which constitutes a unified and consistent language of human functioning suitable as a reference for comparing health information.
Methods and results In two earlier papers, we have proposed rules for linking existing health information to the ICF. Further refinements to these existing ICF Linking Rules are presented in this paper to enhance the transparency of the linking process. The refinements involve preparing information for linking, perspectives from which information is collected and the categorization of response options. Issues regarding the linking of information not covered or unspecified within the ICF are also revisited in this paper.
Conclusion:
The ICF Linking Rules are valuable for enhancing comparability of health information to ensure that information is available in a consistent manner to serve as a foundation for evidence-based decision-making across all levels of health systems. The refinements presented in this paper enhance transparency in, and ultimately reliability of the process of, linking health information to the ICF.
Implications for Rehabilitation
The International Classification of Functioning, Disability and Health (ICF) constitutes a unified and consistent language of human functioning suitable as a reference for comparing health information.
Comparability of information is essential to ensure that the widest range of information is available in a consistent manner for any decision-maker at all levels of the health system.
The refined ICF Linking Rules presented in this article outline the method to establish comparability of health information based on the ICF.
Objective:
Patient reported outcomes (PROs) are relevant in rheumatology. Variable accessibility and validity of commonly used PROs are obstacles to homogeneity in evidence synthesis. The objective of this project was to provide a comprehensive library of “validated PROs”.
Methods:
A launch meeting with rheumatologists, PROs methodological experts, and patients, was held to define the library’s aims and scope, and basic requirements. To feed the library we performed systematic reviews on selected diseases and domains. Relevant information on PROs was collected using standardised data collection forms based on the COSMIN checklist.
Results:
The EULAR Outcomes Measures Library (OML), whose aims are to provide and to advise on PROs on a user-friendly manner albeit based on scientific grounds, has been launched and made accessible to all. PROs currently included cover any domain and, are generic or specifically target to the following diseases: rheumatoid arthritis, osteoarthritis, spondyloarthritis, low back pain, systemic lupus erythematosus, gout, osteoporosis, juvenile idiopathic arthritis, and fibromyalgia. Up to 236 instruments (106 generic and 130 specific) have been identified, evaluated, and included. The systematic review for SLE, which yielded 10 specific instruments, is presented here as an example.
The OML website includes, for each PRO, information on the construct being measured and the extent of validation, recommendations for use, and available versions; it also contains a glossary on common validation terms.
Conclusion:
The OML is an in progress library led by rheumatologists, related professionals and patients, that will help to better understand and apply PROs in rheumatic and musculoskeletal diseases.
Objective
To identify the most important and relevant concepts of daily functioning from the perspective of patients with systemic lupus erythematosus (SLE).
Methods
We conducted a consensus‐building, 3‐round, electronic mail survey with SLE patients using the Delphi technique. The Delphi technique is a structured communication process with 4 key characteristics: anonymity, iteration with controlled feedback, statistical group response, and informed input. The concepts contained in the answers of the patients were extracted and linked to the International Classification of Functioning, Disability and Health (ICF).
Results
Of the total 225 participants, 194 (86.2%) completed the questionnaires from all 3 Delphi rounds. In total, after the third Delphi round, 307 concepts were identified. Ninety concepts (55 in the domain body functions and structures, 16 in activities and participation, and 19 in environmental factors) were considered relevant by at least 50% of the participants in the third round and linked to the ICF. Twelve concepts were considered important by at least 75% of the participants.
Conclusion
The high number of concepts resulting from this large‐scale patient Delphi approach underlines the great variety of SLE patients' problems in daily functioning. The results of this patient Delphi project supplement the findings of our focus‐group study in establishing a comprehensive overview of the patient perspective in SLE.
Background: Existing instruments measuring participation may vary with respect to various aspects. This study aimed to examine the comparability of existing instruments measuring participation based on the International Classification of Functioning, Disability and Health (ICF) by considering aspects of content, the perspective adopted and the categorization of response options.
Methods: A systematic literature review was conducted to identify instruments that have been commonly used to measure participation. Concepts of identified instruments were then linked to the ICF following the refined ICF Linking Rules. Aspects of content, perspective adopted and categorization of response options were documented.
Results: Out of 315 instruments identified in the full-text screening, 41 instruments were included. Concepts of six instruments were linked entirely to the ICF component Activities and Participation; of 10 instruments still 80% of their concepts. A descriptive perspective was adopted in most items across instruments (75%), mostly in combination with an intensity rating. An appraisal perspective was found in 18% and questions from a need or dependency perspective were least frequent (7%).
Conclusion: Accounting for aspects of content, perspective and categorization of responses in the linking of instruments to the ICF provides detailed information for the comparison of instruments and guidance on narrowing down the choices of suitable instruments from a content point of view.
Implications for Rehabilitation
For clinicians and researchers who need to identify a specific instrument for a given purpose, the findings of this review can serve as a screening tool for instruments measuring participation in terms of the following:
• Their content covered based on the ICF.
• The perspective adopted in the instrument (e.g., descriptive, need/dependency or appraisal).
• The categorization of their response options (e.g., intensity or frequency).
Objective: To examine the use of the term ‘metric’ in health and social sciences’ literature, focusing on the interval scale implication of the term in Modern Test Theory (MTT).
Materials and methods: A systematic search and review on MTT studies including ‘metric’ or ‘interval scale’ was performed in the health and social sciences literature. The search was restricted to 2001–2005 and 2011–2015. A Text Mining algorithm was employed to operationalize the eligibility criteria and to explore the uses of ‘metric’. The paradigm of each included article (Rasch Measurement Theory (RMT), Item Response Theory (IRT) or both), as well as its type (Theoretical, Methodological, Teaching, Application, Miscellaneous) were determined. An inductive thematic analysis on the first three types was performed.
Results: 70.6% of the 1337 included articles were allocated to RMT, and 68.4% were application papers. Among the number of uses of ‘metric’, it was predominantly a synonym of ‘scale’; as adjective, it referred to measurement or quantification. Three incompatible themes ‘only RMT/all MTT/no MTT models can provide interval measures’ were identified, but ‘interval scale’ was considerably more mentioned in RMT than in IRT.
Conclusion: ‘Metric’ is used in many different ways, and there is no consensus on which MTT metric has interval scale properties. Nevertheless, when using the term ‘metric’, the authors should specify the level of the metric being used (ordinal, ordered, interval, ratio), and justify why according to them the metric is at that level.