Functioning and disability in spinal cord injury from the consumer perspective: an international qualitative study using focus groups and the ICF

Kirchberger, Inge; Sinnott, Anne; Charlifue, Susan; Kovindha, Apichana; Lüthi, Hansjörg; Campbell, Ruth; Zwecker, Manuel; Scheuringer, Monika; Cieza, Alarcos

doi:10.1038/sc.2009.184

Cited by 42 publications

(40 citation statements)

References 58 publications

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“…Five studies collected data from more than one country [53,56,[76][77][78]. Two of these studies compared data across countries [53,78], which illustrates the use of the ICF for comparing health status data across population groups, while the other three studies combined data from each country before linking the information to the ICF [56,76,77]. Kirchberger collected data in six countries covering six WHO world regions -Africa, Americas, Eastern Mediterranean, Europe, South-East Asia and Western Pacific [79].…”

Section: Geographical Locationmentioning

confidence: 99%

The use of the International Classification of Functioning, Disability and Health to understand the health and functioning experiences of people with chronic conditions from the person perspective: a systematic review

Alford

Ewen

Webb

et al. 2014

Disability and Rehabilitation

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The ICF encourages a bio-psycho-social and person-centred approach to healthcare and may provide a useful tool for guiding clinical assessment and encouraging clinicians to consider the multitude of factors which impact health, which may result in more specific and individualised treatment targeted at individual needs. Using a common framework that can be understood across health disciplines may enhance interdisciplinary communication and collaboration, improving health care delivery. The ICF may be used to compare perspectives of individuals and their health professionals and to identify people's needs that are not adequately being addressed, which may have significant implications for improving healthcare provided and overall health outcomes.

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Section: Geographical Locationmentioning

confidence: 99%

The use of the International Classification of Functioning, Disability and Health to understand the health and functioning experiences of people with chronic conditions from the person perspective: a systematic review

Alford

Ewen

Webb

et al. 2014

Disability and Rehabilitation

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“…9 Implementation of the electronic tool: organization of the annual check-up As it was evident that a physician cannot possibly answer all of these 165 categories in a single consultation, it was decided to share this task between all the participants in the process. This implies that the patient would be responsible for answering questions in categories related to activities and participation, 10 the PT for categories regarding the lower limbs, the OT for those of the upper limbs and the physician for all the remaining categories of body function. A questionnaire is sent to the patients 2 weeks before the annual check-up, and the details are explained to him/her by telephone and by a subsequent letter.…”

Section: Electronic Toolmentioning

confidence: 99%

Long-term follow-up of patients with spinal cord injury with a new ICF-based tool

et al. 2010

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Study design: To develop a computer program that supports the overview of a follow-up care process in people with spinal cord injury (SCI) in daily clinical practice. Objectives: To create a new electronic tool based on the International Classification of Functioning, Disability and Health (ICF) that enables information to be registered and visualized, including the use of a net-diagram ('spider') to show a patient's long-term development. This diagram helps the clinician to recognize predispositions over time, as well as making information accessible to the patient, so as to involve him as a participant in defining current and future treatment options. Furthermore, guidelines for the prevention of common diseases, based on the recommendations of internal medicine, rehabilitation medicine and findings in the SCI literature, were implemented to provide enhanced health coaching in the area of preventative care. Methods: In an outpatient setting, four perspectives were assessed: patient, physician, occupational therapist and physiotherapist for a comprehensive bio-psycho-social consideration. All categories were assessed and graphically visualized with the electronic tool, on the basis of the ICF domains: body function, activities/participation and environmental factors. Results: The assessed data were summarized and graphically represented using three spider charts. Conclusion: The tool facilitates the patient counselling and the interdisciplinary work in daily clinical practice. Such a visual report helps to recognize predispositions over time. Furthermore, it helps to explain the clinical and patient-related findings accessible to the patients, to involve them as participants in defining the goals and the treatment plan.

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“…As outlined in Tables 1 and 2, the ICF lists types of outcome assessments within three broad domains (categories) of body structure and function, activity and participation. 42,43 Within the domain of body structure and function, assessments are often aimed at describing the structural and functional changes associated with the tissue targeted by the therapeutic. A change in neurological function or impairment of the injured spinal cord, regardless of the ability of the patient to functionally use any change in neural connectivity for improved independent ADLs and mobility, is one type of body structure/ function assessment.…”

Section: Determining Mcid Within the Realm Of Icf Domainsmentioning

confidence: 99%

Challenges for defining minimal clinically important difference (MCID) after spinal cord injury

Liu

Tanadini

et al. 2014

Spinal Cord

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Study design: This is a review article. Objectives: This study discusses the following: (1) concepts and constraints for the determination of minimal clinically important difference (MCID), (2) the contrasts between MCID and minimal detectable difference (MDD), (3) MCID within the different domains of International Classification of Functioning, disability and health, (4) the roles of clinical investigators and clinical participants in defining MCID and (5) the implementation of MCID in acute versus chronic spinal cord injury (SCI) studies. Methods: The methods include narrative reviews of SCI outcomes, a 2-day meeting of the authors and statistical methods of analysis representing MDD. Results: The data from SCI study outcomes are dependent on many elements, including the following: the level and severity of SCI, the heterogeneity within each study cohort, the therapeutic target, the nature of the therapy, any confounding influences or comorbidities, the assessment times relative to the date of injury, the outcome measurement instrument and the clinical end-point threshold used to determine a treatment effect. Even if statistically significant differences can be established, this finding does not guarantee that the experimental therapeutic provides a person living with SCI an improved capacity for functional independence and/or an increased quality of life. The MDD statistical concept describes the smallest real change in the specified outcome, beyond measurement error, and it should not be confused with the minimum threshold for demonstrating a clinical benefit or MCID. Unfortunately, MCID and MDD are not uncomplicated estimations; nevertheless, any MCID should exceed the expected MDD plus any probable spontaneous recovery. Conclusion: Estimation of an MCID for SCI remains elusive. In the interim, if the target of a therapeutic is the injured spinal cord, it is most desirable that any improvement in neurological status be correlated with a functional (meaningful) benefit.

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Functioning and disability in spinal cord injury from the consumer perspective: an international qualitative study using focus groups and the ICF

Abstract: A broad range of the individual experiences of persons with SCI is covered by the ICF. A large number of experiences were related to Personal Factors.

Cited by 42 publications

References 58 publications

The use of the International Classification of Functioning, Disability and Health to understand the health and functioning experiences of people with chronic conditions from the person perspective: a systematic review

The use of the International Classification of Functioning, Disability and Health to understand the health and functioning experiences of people with chronic conditions from the person perspective: a systematic review

Long-term follow-up of patients with spinal cord injury with a new ICF-based tool

Challenges for defining minimal clinically important difference (MCID) after spinal cord injury

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