Defining the content of a minimal dataset for acquired brain injury using a Delphi procedure

• Published in: Health and quality of life outcomes 2020-02, Vol.18 (1), p.30-30, Article 30
• Main Authors: Domensino, Anne-Fleur, Winkens, Ieke, van Haastregt, Jolanda C M, van Bennekom, Coen A M, van Heugten, Caroline M
• Format: Article
• Language: English
• Subjects: Acquired brain injury; Brain; Brain injuries; Brain injury; Brain research; Cognitive ability; Collaboration; Communication; Comorbidity; Cooperation; Data collection; Datasets; Delphi procedure; Demography; Disabilities; Domains; FAIR data; Head injuries; Injury prevention; Interdisciplinary aspects; International Classification of Functioning, Disability and Health; Measurement methods; Measuring instruments; Minimal dataset; Outcome and process assessment (Medical care); Participation; Patient outcomes; Patients; Preferences; Professionals; Quality of life; Researchers; Social interactions; Social support; Stroke; Studies; Traumatic brain injury
• ISSN: 1477-7525; 1477-7525
• DOI: 10.1186/s12955-020-01286-3

The lack of consistency in outcome measurement within the field of acquired brain injury (ABI) leads to incomparability of collected data and, consequently, reduced generalisation of findings. We aim to develop a set of standardised measures which can be used to obtain the minimum amount of data necessary to characterise ABI-patients across all healthcare sectors and disciplines and in every stage of recovery; i.e., an ABI-specific minimal dataset (MDS-ABI). The current study was conducted to identify the core outcome domains for adults with ABI (what to measure?) and to select the most suitable measurements within these domains (how to measure it?). An initial comprehensive set of outcome domains and measurement instruments relevant for measuring the consequences of ABI was identified by a literature study. The selection of relevant domains was based on the International Classification of Functioning, Disability and Health framework. Measurement instruments were included in the Delphi procedure when they met pre-set requirements. A three-round Delphi study was conducted among Dutch experts (n = 48) using iterative web-based surveys to prioritise the proposed domains and instruments for the MDS-ABI. Throughout all rounds, participants could recommend additional or alternative domains and measurement instruments, and were fed back the collated group responses of the previous round. Response rates ranged from 89 to 100%. After three rounds, the expert panel reached consensus (≥51%) on the inclusion of 12 outcome domains (demographics, injury characteristics, comorbidity, cognitive functioning, emotional functioning, energy, mobility, self-care, communication, participation, social support and quality of life), measured with six measurement instruments, two screening questions and a registry of demographic- and injury information. No consensus was reached on how to measure quality of life. The current study achieved consensus on the content of a minimal dataset for patients with ABI. The current version of the MDS-ABI will be evaluated and optimised if necessary in the near future.