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Project

Validation of the International SCI Quality of Life Basic Data Set (SCI-QOLBDS)

Funder: Craig H Neilsen Foundation

Funding period
USD 400 K
Funding amount
Abstract
Spinal cord damage, caused by an injury (SCI) or disease process (SCD), can result in neurological and functional impairment, activity limitations, participation’ restrictions and decreased quality of life (QoL). The fast pace of advances in clinical care and research indicate a clear need for an easy to use tool and uniform way of assessing QoL after SCI/D. QoL assessments are helpful in determining perspectives of people with SCI/D when making decisions about treatments while also reflecting changes over the life course that are linked to important clinical outcomes such as increased pain, secondary complications, or presence of co-morbidities. Emphasis on patient-reported outcomes such as QoL, and its association to quality of services received by health care recipients is increasing throughout the world.The use of well validated QoL measures in SCI/D is critical in order to compare innovative treatments in clinical trials aimed at symptom relief and improvement of outcomes across countries and to assess the effects of rehabilitation care following hospitalization into community integrationThe International SCI QoL Basic Data Set (SCI-QoLBDS) was developed by a team of experts to standardize the collection and reporting of a minimal amount of information needed to compare clinical data and research results across sites and countries. Three aims guide this investigation: 1) evaluate the psychometric properties of the SCI-QoLBDS and to determine its applicability cross-culturally, documenting the equivalence of scale scores across languages and cultures; 2) examine the clinical value of the SCI-QoLBDS by determining its association with key clinical and psychosocial outcomes such as pain, bladder and bowel complications, and participation; and 3) gather preliminary data to allow for the development of norms based on sample characteristics (age, time since onset, neurological classification and etiology – traumatic versus non-traumatic). Both standard psychometric and Item Response Theory based analyses will be conducted including: reliability analysis; assessment of convergent, concurrent and construct validity; and formal tests of precision for purposes of hypothesis testing. Responsiveness to change will also be assessed. The validation of the SCI-QoLBDS is a necessary step towards the acceptance and widespread use of this instrument. The proposed project goal is to conduct a prospective international validation of the SCI-QoLBDS utilizing a large and diverse sample (n=560) collected from two SCI Model Systems in the US (Michigan and Colorado) and sites in The Netherlands, Australia and Brazil. The selection of these five sites was made based on the investigators and collaborators countries of origin and their past history of working together. Nevertheless, it represents three continents, two with languages other than English. This application represents a first step toward a larger study that will expand upon these cross-cultural comparisons. (CHN: PSR chn:wdg)
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System

Categories
  • FOR (ANZSRC)

    1103 Clinical Sciences

  • RCDC

    Injury (total) Accidents/Adverse Effects

  • RCDC

    Injury - Trauma - (Head and Spine)

  • RCDC

    Neurosciences

  • RCDC

    Pain Research

  • RCDC

    Pain Conditions - Chronic

  • RCDC

    Spinal Cord Injury

  • RCDC

    Clinical Research

  • RCDC

    Neurodegenerative

  • Health Research Areas

    Clinical

  • Broad Research Areas

    Clinical Medicine and Science