Common Data Elements for Concussion in Tertiary Care: Phase One in Ontario

Abstract

Background: Standardized data collection for traumatic brain injury (TBI) (including concussion) using common data elements (CDEs) has strengthened clinical care and research capacity in the United States and Europe. Currently, Ontario healthcare providers do not collect uniform data on adult patients diagnosed with concussion. Objective: The Ontario Concussion Care Strategy (OCCS) is a collaborative network of multidisciplinary healthcare providers, brain injury advocacy groups, patient representatives, and researchers with a shared vision to improve concussion care across the province, starting with the collection of standardized data. Methods: The International Framework of Functioning Disability and Health was selected as the conceptual framework to inform the selection of CDEs. The CDEs recommended by the OCCS were identified using key literature, including the National Institute of Neurological Disorders and Stroke-Zurich Consensus Statements for concussion in sport and the Ontario Neurotrauma Foundation Concussion/mTBI clinical guidelines. Results: The OCCS has recommended and piloted CDEs for Ontario that are readily available at no cost, clinically relevant, patient friendly, easy to interpret, and recognized by the international scientific community. Conclusions: The implementation of CDEs can help to shift Ontario toward internationally recognized standard data collection, and in so doing yield a more comprehensive evidence-based approach to care while also supporting rigorous research.RÉSUMÉ: Éléments de données communs concernant le traitement des commotions cérébrales dans les centres de soins tertiaires : la première phase en Ontario. Contexte: En utilisant des éléments de données communs (common data elements), la collecte normalisée de données au sujet des lésions cérébrales traumatiques (LCT), ce qui inclut les commotions cérébrales, a pu renforcer les soins cliniques et les capacités de la recherche aux États-Unis et en Europe. Au moment où l'on se parle, les fournisseurs ontariens de soins de santé ne collectent pas de données uniformes en ce qui concerne les patients adultes chez qui on a diagnostiqué une commotion cérébrale. Objectifs: La Ontario Concussion Care Strategy (OCCS) est un réseau coopératif qui rassemble des fournisseurs multidisciplinaires de soins de santé, des groupes de défense des personnes ayant subi des lésions, des représentants des patients et des chercheurs qui partagent une vision commune quant à la nécessité d'améliorer, partout dans la province, les soins prodigués à la suite d'une commotion cérébrale. Cela commence, selon eux, par une collecte normalisée de données. Méthodes: Nous avons choisi la Classification internationale du fonctionnement, du handicap et de la santé (CIF) à titre de cadre conceptuel sur lequel devait reposer la collecte de nos éléments de données communs. La OCCS a recommandé ces éléments en s'appuyant sur des publications clés, par exemple celles du National Institute of Neurological Disorders and Stroke, sur les énoncés du consensu...

Quality of life measures in older adults after traumatic brain injury: a systematic review

“…Understanding the economic costs associated with Qol can be important given the strong financial impact of TBI on the health care system, particularly among older adults. Older adults with TBI have a rising number of emergency department visits, hospitalizations, and long recovery periods that require medical supervision [2, 13]. The WHO-Qol BREF is recommended in the data repository for the Ontario Brain Institute [67].…”

“…The QOLIBRI and abbreviated version QOLIBRI-OS were the only TBI-specific Qol instruments and were implemented in four studies [24, 32, 35, 40]. QOLIBRI is recommended for the general adult population of TBI by the National Institute of Neurological Disorders and Stroke [13]. It has the potential to identify specific consequences of a TBI injury and it can also detect the effects of interventions.…”

“…A standardized Qol measurement for older adults post TBI could improve clinical practice, enhance health care delivery, inform health policy, and support allocation of health service funds [12]. Local-level [13] and international [14] TBI research has recognized the importance of using standardized measures to improve data quality and patient care. A standard QoL measure for older adults with TBI could facilitate accurate and reliable data within an individual patient care continuum and across clinical care settings, and support more rigorous research studies with metadata.…”