ABSTRACT
Understanding human functioning and disablement, the contributing factors and their interactions in individuals with tetraplegia is important since elective upper extremity (UE) reconstructive surgery is now offered earlier after injury prior to full recognition of what lies ahead. Qualitative and quantitative data were available from a prior series of mixed methods studies, including a case series design capturing the patients' lived-experience perspectives of nerve or tendon transfer surgery, or not as the case may be. The objective of this study was to perform secondary data analysis to determine whether the recommended outcome tools being used by clinicians reflect the all important domains of functioning identified by people with tetraplegia who were considering UE reconstructive procedures. The original 18 candidate themes derived from qualitative analysis were reviewed in retrospect, along with a content analysis of the tools' questions, undertaking word mapping links to the ICF taxonomy. The outcomes tools included in the content analysis were the Canadian Occupational Performance Measure, the Capabilities of Upper Extremity Questionnaire, The Personal Wellbeing Index, and the Grasp and Release Test. Comparison between clinical outcomes tools and the patient lived-experience data uniquely identified links to Chapter1 (b) Mental functions, which include consciousness, orientation, temperament/personality, energy/drive, and higher-level cognition.
ABSTRACT
Cervical spinal cord injury (SCI) causing tetraplegia is extremely disabling. In such circumstances, restoration of upper extremity (UE) function is considered the highest priority. The advent of early nerve transfer (NT) procedures, in addition to more traditional tendon transfers (TT), warranted in-depth consideration given the time-limited nature of NT procedures. Potential surgery candidates may not yet have come to terms with the permanence of their disability. A mixed methods convergent design was utilized for concurrent analysis of the Aotearoa/New Zealand upper limb registry data from the clinical assessments of all individuals considering UE surgery, regardless of their final decision. The International Classification of Functioning, Disability and Health (ICF) taxonomy guided data interpretation during the three-phased study series. It was the integration of the findings using the Stewart Model of care drawn from palliative health that enabled the interpretation of higher order messages. It is clear the clinical assessment and selection processes in use require reconsideration given the complexities individuals face following onset of SCI. We draw attention to the higher order cognitive demands placed on individuals, the requirement for SCI peer involvement in decision making and the need for acknowledgment of interdependence as a relational construct when living with tetraplegia.
ABSTRACT
Purpose: This study determines the clinical utility of patient-reported outcome measures used to measure outcomes of upper extremity (UE) reconstructive procedures in individuals with tetraplegia. The patient-reported outcome measures are the Canadian Occupational Performance Measure, the Capabilities of Upper Extremity Questionnaire (CUE-Q), and the Personal Wellbeing Index. Methods: Retrospective data of 43 individuals with spinal cord injury (SCI) levels C4-C7 tetraplegia, and American Spinal Injury Association Impairment Scale grades A-D who had upper limb reconstructive surgery were reviewed. Participants were grouped according to their SCI level and resultant surgical procedures into higher SCI severity and lower SCI severity groups. Results: The mean age of participants was 26.3 years (SD 13.4; range 13-64 years). The higher-severity SCI group required elbow and hand reconstruction surgery, whereas the lower-severity group only required hand reconstruction surgery. Important differences in Canadian Occupational Performance Measure priorities were identified between the higher and lower SCI severity groups. Question redundancy was evident with the CUE-Q. The self-report Personal Wellbeing Index captures the possible impacts of improved UE function on an individual's perceived sense of personal wellbeing. Conclusions: In this patient-reported outcome measure analysis, we found that the level of impairment influences patient priorities. Functional measures ought to consider UE impairment and personal wellbeing as a construct in this population, given the demands of surgery. Type of Study/Level of Evidence: Prognostic II.
ABSTRACT
AIMS: To identify and establish a research database of ageing New Zealand people who sustained a traumatic or non-traumatic spinal cord injury (SCI) before 1990. METHODS: All living New Zealand residents incurring a SCI before 1 January 1990 were eligible. A co-ordinated consultation with apposite New Zealand organisations was undertaken to identify and access existing SCI databases, and remove duplicate or ineligible records. RESULTS: 1,400 people were identified. Using the national patient information management system to determine eligibility, 1,174 people remained after exclusions; 600 (51.1%) through the Auckland Spinal Rehabilitation Unit and 574 (48.9%) through the Burwood Spinal Unit. Common to both databases were people's National Health Index number, contact details, basic demographic data, date of injury, and neurological level of SCI. CONCLUSIONS: An unexpectedly large SCI population was uncovered; a population largely hidden due to the uncoordinated, fragmented and inconsistently collected information held within different organisations. As life expectancy rapidly increases for those with SCI, coupled with an accelerated ageing general population, this hidden SCI population can be expected to grow. A single, well-managed and coordinated national SCI registry is urgently needed in New Zealand for planning and delivery of services, especially for those developing age-related complex interwoven secondary conditions.
