TY - JOUR
T1 - Feasibility of a minimal dataset for adults with acquired brain injury in Dutch healthcare practice
AU - Domensino, Anne-Fleur
AU - van Haastregt, Jolanda C M
AU - Winkens, Ieke
AU - van Bennekom, Coen A M
AU - van Heugten, Caroline M
N1 - Funding Information:
Financial support for this work was received from the'Gewoon Bijzonder' Programme on behalf of the Organisation of Health Research and Development (ZonMw - The Netherlands; www.zonmw.nl) (Grant reference 845004001), cofinanced by the Brain Foundation of The Netherlands to CMvH. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Publisher Copyright:
Copyright: © 2020 Domensino et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
PY - 2020/6/22
Y1 - 2020/6/22
N2 - OBJECTIVE: Data collection in the field of acquired brain injury (ABI) lacks uniformity due to the broad spectrum of available measurement instruments, leading to incomparability of data and the need for patients to 'repeat their story'. To pursue uniform data collection, an ABI-specific minimal dataset (MDS-ABI) is currently under development. The current study aimed to assess the feasibility (performance according to protocol, user opinion, potential implementation barriers, and suggested improvements) of the MDS-ABI in clinical settings.METHODS: A mixed-methods approach was used in a range of healthcare sectors for persons with ABI. Clinicians of several relevant disciplines within these sectors were asked to administer the MDS-ABI to five patients. Subsequently, feasibility according to clinicians was assessed by means of a paper questionnaire about every administration and an online questionnaire about the feasibility in general. Feasibility according to patients was assessed with a paper questionnaire and think aloud interviews.RESULTS: Thirteen clinicians and 50 patients were included. In general, the MDS-ABI performed according to protocol. Both clinicians and patients were overall satisfied with the content of the MDS-ABI. The Cumulative Illness Rating Scale was regarded incomprehensible, leading to missing data. Further, clinicians indicated that the MDS-ABI would not be suitable for all ABI-patients, as some are incapable of self-report due to potential cognitive problems, communicative problems, fatigue, perceptual problems, or impaired awareness of deficits.CONCLUSION: The MDS-ABI is a promising tool for obtaining core information on ABI-patients. The MDS-ABI will be adjusted according to the suggestions. For patients who are incapable of self-report, a proxy-reported version of the self-reported part was developed.
AB - OBJECTIVE: Data collection in the field of acquired brain injury (ABI) lacks uniformity due to the broad spectrum of available measurement instruments, leading to incomparability of data and the need for patients to 'repeat their story'. To pursue uniform data collection, an ABI-specific minimal dataset (MDS-ABI) is currently under development. The current study aimed to assess the feasibility (performance according to protocol, user opinion, potential implementation barriers, and suggested improvements) of the MDS-ABI in clinical settings.METHODS: A mixed-methods approach was used in a range of healthcare sectors for persons with ABI. Clinicians of several relevant disciplines within these sectors were asked to administer the MDS-ABI to five patients. Subsequently, feasibility according to clinicians was assessed by means of a paper questionnaire about every administration and an online questionnaire about the feasibility in general. Feasibility according to patients was assessed with a paper questionnaire and think aloud interviews.RESULTS: Thirteen clinicians and 50 patients were included. In general, the MDS-ABI performed according to protocol. Both clinicians and patients were overall satisfied with the content of the MDS-ABI. The Cumulative Illness Rating Scale was regarded incomprehensible, leading to missing data. Further, clinicians indicated that the MDS-ABI would not be suitable for all ABI-patients, as some are incapable of self-report due to potential cognitive problems, communicative problems, fatigue, perceptual problems, or impaired awareness of deficits.CONCLUSION: The MDS-ABI is a promising tool for obtaining core information on ABI-patients. The MDS-ABI will be adjusted according to the suggestions. For patients who are incapable of self-report, a proxy-reported version of the self-reported part was developed.
KW - COMPREHENSION
KW - DEPRESSION
KW - FATIGUE SEVERITY SCALE
KW - HOSPITAL ANXIETY
KW - INTERVENTION
KW - QUALITY-OF-LIFE
KW - REHABILITATION
KW - SCREENING INSTRUMENTS
KW - UTRECHT SCALE
KW - VALIDITY
U2 - 10.1371/journal.pone.0235085
DO - 10.1371/journal.pone.0235085
M3 - Article
C2 - 32569269
SN - 1932-6203
VL - 15
JO - PLOS ONE
JF - PLOS ONE
IS - 6
M1 - 0235085
ER -