Dataset Information

Feasibility of a minimal dataset for adults with acquired brain injury in Dutch healthcare practice.

ABSTRACT:

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.

SUBMITTER: Domensino AF

PROVIDER: S-EPMC7307757 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Feasibility of a minimal dataset for adults with acquired brain injury in Dutch healthcare practice.

Domensino Anne-Fleur AF van Haastregt Jolanda C M JCM Winkens Ieke I van Bennekom Coen A M CAM van Heugten Caroline M CM

PloS one 20200622 6

<h4>Objective</h4>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 suggest ...[more]

PMID: 32569269

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Project description:BACKGROUND: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?). METHODS: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. RESULTS: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. CONCLUSIONS: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.

Project description:BackgroundSpinal Cord Injury (SCI) or Acquired Brain Injury (ABI) leads to disability, unemployment, loss of income, decreased quality of life and increased mortality. The impact is worse in Low-and Middle-Income Countries (LMICs) due to a lack of efficient long-term rehabilitative care. This study aims to explore the feasibility and acceptability of a telerehabilitation programme in Nepal.MethodsProspective cohort feasibility study in a community setting following discharge from a specialist rehabilitation centre in Nepal. Patients with SCI or ABI who had previously accessed specialist rehabilitation were connected to a specialist Multidisciplinary Team (MDT) in the centre through a video conference system for comprehensive remote assessments and virtual individualised interventions. Data were captured on recruitment, non-participation rates, retention, acceptability (via end-of-study in-depth interviews with a subset of participants) and outcome measures including the Modified Barthel Index (MBI), Depression Anxiety Stress Scale (DASS) and EuroQol-5D (EQ-5D), completed pre- and post-programme.Results97 participants with SCI (n = 82) or ABI (n = 15) discharged from the centre during an 18-month period were approached and enrolled on the study. The telerehabilitation programme facilitated the delivery of support around multiple aspects of rehabilitation care, such as spasticity treatments and pain management. Outcome measures indicated a significant improvement in functional independence (P < .001), depression, anxiety and stress (P < .001) and quality of life (P < .001). Qualitative interviews (n = 18) revealed participants found the programme acceptable, valuing regular contact and input from MDT professionals and avoiding expensive and lengthy travel.ConclusionThis is the first study in Nepal to identify telerehabilitation as a feasible and acceptable approach to augment the provision of specialist rehabilitation. Future research is needed to assess the suitability of the programme for other conditions requiring specialist rehabilitation and determine the mechanisms underpinning improved outcomes for people with SCI or ABI.Trial registrationClinicalTrials.gov Identifier: NCT04914650.

Project description:BackgroundResearch in animal models on cerebral metabolism after brain injury highlights the potential benefits of ketosis in reducing secondary brain injury, but studies in humans are lacking.AimThis study aimed to examine if a 6-week ketogenic diet intervention with added medium-chain triglycerides (MCT) was feasible in adult patients with acquired brain injury in the subacute phase, whether ketosis could be achieved and maintained, and to what extent serious adverse reactions, adverse reactions, serious adverse events, and adverse events occured.MethodsPatients ≥18 years of age diagnosed with subacute acquired brain injury and an expectation of hospitalisation ≥6 weeks were included in the intervention group. Patients not included in the intervention group were included in a standard care reference group. The intervention consisted of a ketogenic diet supplemented with MCT to obtain a plasma concentration of β-hydroxybutyrate (BHB) ≥0.5 mmol/L. Patients who were enterally fed were given KetoCal® 2.5:1 LQ MCT Multi Fiber (Nutricia A/S, Allerød, Denmark), supplemented with Liquigen® (Nutricia A/S, Allerød, Denmark). Patients consuming oral nutrition were given KetoCal® 2.5:1 LQ MCT Multi Fiber supplemented with Liquigen®, in addition to ketogenic meals.ResultsDuring a 13-week inclusion period, 12 of 13 eligible patients (92% [95% CI: 67% to 99%]) were included in the intervention group, and 17 of 18 excluded patients (94% [95% CI: 74% to 99%]) were included in the reference group. Eight patients (67%) completed the 6-week intervention. It took a median of 1 day to achieve ketosis from starting a 100% MCT ketogenic diet, and it was maintained for 97% of the intervention period after ketosis was obtained. There were no serious adverse reactions to the MCT ketogenic diet, and patients experienced adverse reactions not considered serious in 9.5% of days with the intervention. The MCT ketogenic diet was accepted by patients on all intervention days, and in the two patients transitioning from enteral feeding to oral intake, there were no complications related to transitioning.ConclusionIntervention with MCT ketogenic diet is feasible and tolerated for 6 weeks in hospitalised adult patients with subacute acquired brain injury. Randomised controlled trials are needed to assess the benefits and harms of the MCT ketogenic diet and the effect on patients' recovery.Clinical trial registration: ClinicalTrials.gov, identifier [NCT04308577].

Project description:Objective: Acquired brain injury (ABI) is a leading cause of long-term disability. This calls for effective and accessible interventions to support participation in the community over time. One promising avenue to answer this need is telerehabilitation. Prior to conducting a larger trial, the main objective of this pilot study is to explore the feasibility, acceptability, and preliminary efficacy of a metacognitive occupation-based intervention in a telerehabilitation format with adults and older adults in the chronic phase after ABI. Methods: Five community dwelling participants (ages 65-72), 6-10 months post-ABI, with scores 2-4 on the modified Rankin scale and without dementia, completed the teleintervention. The intervention included ~10 weekly videoconferencing sessions administered by an occupational therapist using the Cognitive Orientation to Daily Occupational Performance approach. Each participant defined five functional goals and three were trained and two were not trained during the intervention. Evaluations were conducted at pre, post, and 3-month follow-up. The primary outcome measures included activity performance (The Canadian Occupational Performance Measure; COPM), participation (the Mayo-Portland Adaptability Inventory-4 Participation Index; MPAI-4-P), and quality of life (QoL) (stroke impact scale; SIS). Other measures included a feedback interview, satisfaction questionnaire, field notes, and a treatment fidelity checklist. Results: The teleintervention was found to be feasible and the participants expressed a high degree of satisfaction with the intervention and the technology use. A Wilcoxon Signed-Ranks test indicated statistically significant improvements post intervention in COPM performance (z = -2.023, p = 0.043) and satisfaction (z = -2.023, p = 0.043) ratings. Additionally, clinically significant improvements (≥2 points) in both performance and satisfaction with performance were found for each participant in at least three of their five defined functional goals. Trends toward significant improvement were found in MPAI-4-P ratings post intervention (z = -1.826, p = 0.068). Furthermore, clinically significant improvements (≥15 points) post intervention were found for each participant in some subscales of the SIS. Results were partially maintained at 3-month follow-up. Conclusions: This pilot study demonstrated the feasibility of a metacognitive occupation-based telerehabilitation intervention and its potential benefits in activity performance, participation, and QoL for older adults coping with long-term disability following ABI. Clinical Trial Registration: www.ClinicalTrials.gov, identifier: NCT03048708.

Dataset Information

Feasibility of a minimal dataset for adults with acquired brain injury in Dutch healthcare practice.

Objective

Methods

Results

Conclusion

Publications

Feasibility of a minimal dataset for adults with acquired brain injury in Dutch healthcare practice.

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