The individual experience of functioning and disability in Switzerland--patient perspective and person-centeredness in spinal cord injury.

STUDY DESIGN: Qualitative, multi-center study. OBJECTIVES: The objective of this study is to explore the aspects of functioning and disability that are relevant to individuals with spinal cord injury (SCI), using a comprehensive approach based on the International Classification of Functioning, Disability and Health (ICF). METHODS: Forty-nine people with SCI from early post-acute and long-term rehabilitation settings participated in nine focus groups. Five open-ended questions based on the ICF were used to initiate discussion about relevant Body Functions and Structures, Activities and Participation, Environmental and Personal Factors. The focus groups were audiotaped and the recording was transcribed verbatim. Qualitative analyses included the identification, extraction and coding of meaningful concepts from the transcribed dialogue. Concepts were coded according to established rules using ICF categories and were summarized semi-quantitatively. RESULTS: In the analysis, 1582 different concepts were identified. For coding one concept, an average of 1.4 ICF categories was used. This resulted in 2235 concept-ICF category links, 1068 in the early post-acute and 1167 in the long-term context, respectively. For the coding, 274 out of the 1454 categories contained in the ICF were used. CONCLUSION: The ICF coding showed the broad range of relevant aspects in the functioning experience of persons with SCI. Besides body limitations (especially paralysis and pain), the most relevant concepts covered mainly barriers in physical environment, assistive devices and social support, as well as the impact on everyday life regarding leisure and work. The resulting list of ICF categories can be helpful in facilitating person-centered clinical care and research.

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

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.