Current Status of Websites Offering Information to Patients with Traumatic Brain Injury and Caregivers: Time for Reform?

Manivannan, Susruta; Baskaran, Ravanth; Fisher, Jack; Tasker, Imogen; Zaben, Malik

doi:10.1016/j.wneu.2021.06.140

Cited by 3 publications

(3 citation statements)

References 35 publications

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“…Despite videos being rated by patients as the most effective medium for enforcing communication [ 44 ], there was only one resource available that utilised this approach. Patient based resources in CSDH have been scarcely researched, but studies examining Traumatic Brain Injury (TBI) based resources have demonstrated poor global quality, in keeping with the findings of our study [ 45 ].…”

Section: Discussionsupporting

confidence: 77%

Is information provided within chronic subdural haematoma education resources adequate? A scoping review

et al. 2023

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Background Chronic subdural haematoma (CSDH) is becoming increasingly prevalent, due to an aging population with increasing risk factors. Due to its variable disease course and high morbidity, patient centred care and shared decision making are essential. However, its occurrence in frail populations, remote from specialist neurosurgeons who currently triage treatment decisions, challenges this. Education is an important component of enabling shared decisions. This should be targeted to avoid information overload. However, it is unknown what this should be. Objectives Our objectives were to conduct analysis of the content of existing CSDH educational materials, to inform the development of patient and relative educational resources to facilitate shared decision making. Methods A literature search was conducted (July 2021) of MEDLINE, Embase and grey literature, for all self-specified resources on CSDH education, and narrative reviews. Resources were classified into a hierarchical framework using inductive thematic analysis into 8 core domains: Aetiology, epidemiology and pathophysiology; natural history and risk factors; symptoms; diagnosis; surgical management; nonsurgical management; complications and recurrence; and outcomes. Domain provision was summarised using descriptive statistics and Chi-squared tests. Results 56 information resources were identified. 30 (54%) were resources designed for healthcare professionals (HCPs), and 26 (46%) were patient-orientated resources. 45 (80%) were specific to CSDH, 11 (20%) covered head injury, and 10 (18%) referenced both acute and chronic SDH. Of 8 core domains, the most reported were aetiology, epidemiology and pathophysiology (80%, n = 45) and surgical management (77%, n = 43). Patient orientated resources were more likely to provide information on symptoms (73% vs 13%, p<0.001); and diagnosis (62% vs 10%, p<0.001) when compared to HCP resources. Healthcare professional orientated resources were more likely to provide information on nonsurgical management (63% vs 35%, p = 0.032), and complications/recurrence (83% vs 42%, p = 0.001). Conclusion The content of educational resources is varied, even amongst those intended for the same audience. These discrepancies indicate an uncertain educational need, that will need to be resolved in order to better support effective shared decision making. The taxonomy created can inform future qualitative studies.

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Section: Discussionsupporting

confidence: 77%

Is information provided within chronic subdural haematoma education resources adequate? A scoping review

et al. 2023

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“…Numerous studies have demonstrated the effectiveness of using online patient education resources, including websites, in the treatment of illnesses like diabetes, 25 cancer, 26 traumatic brain injury, 27 and cardiovascular disease. 28 Due to the rise in website usage, evaluations may become more and more important to find gaps and enhance the user experience.…”

Section: Discussionmentioning

confidence: 99%

Arabic websites assessment of irritable bowel syndrome: How trustworthy are they? A cross‐sectional study

Abugharbieh,

Alshareef,

Ghazaleh

et al. 2024

Health Science Reports

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Background and AimsIrritable bowel syndrome (IBS) is a chronic GI disorder that affects people all over the world. Patients frequently look for information about their ailments online. Despite being widely and easily accessible, online information's quality and readability are under doubt. In this investigation, we assessed the effectiveness and usability of IBS Arabic websites found on significant search engines.MethodsIBS‐related search terms in Arabic were entered into two search engines (Google and YouTube), and the first 30 websites per word from Google, and the first 20 websites per word from YouTube were assessed for eligibility. Eligible Google websites were assessed for quality and readability, while YouTube websites were assessed for quality. Quality was assessed using the DISCERN score and the JAMA Benchmark. Readability was assessed using the automatic Arabic readability index (AARI). Associations between quality, readability, types of websites (medical/nonmedical), and video length were analyzed.ResultsFor Google: A total of 48 websites were evaluated, mean DISCERN score was 40.4 (SD = 10.28) indicating fair quality. The mean JAMA score was 1.6 (SD = 0.69), with the readability being worse the higher the quality. Medical websites had higher quality scores than nonmedical ones. For YouTube: A total of 34 YouTube videos were evaluated, mean DISCERN score was 34.7 (SD = 7.35), indicating poor quality. The mean JAMA score was 1.4 (SD = 0.72). Medical websites had higher quality scores than nonmedical ones. There was no association between the quality of the videos and their length.ConclusionThe majority of websites were of low to fair quality and required a high degree of readability. As a result, we advise (1) healthcare practitioners to offer helpful websites to their patients, and (2) the development of IBS‐related websites under the guidance of experts, with the involvement of patients.

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“…Among the barriers to accessibility identified in the literature, the reading age required to understand the content of the online resources is often raised; the study of Manivannan et al (2021), for instance, reports that less than 30% of the websites included in their study followed the recommended reading age for people with TBI [ 24 ]. The present study confirms this concern with most of the included online resources using a language level above junior high school according to Scolarius [ 25 ].…”

Section: Discussionmentioning

confidence: 99%

Accessibility of Online Resources for Associations Providing Services to People with Brain Injuries in Covid-19 Pandemic

Lapierre

Piquer

Celikovic

et al. 2021

IJERPH

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Background. Since the Covid-19 pandemic, many community-based services for people with traumatic brain injury (TBI) have been moved online, which may have hindered their accessibility. The study aims to assess the accessibility of online information and resources dedicated to people with TBI. Methods. The websites of 14 organizations offering information and resources to people with TBI in Quebec were evaluated. Two co-authors independently evaluated one page of each website and compared their results. Descriptive statistical analyses were performed. Results. The average accessibility score of the 14 websites evaluated was 54% with a standard deviation of 16%. Website design and writing were the most accessible aspects (72.3%). Only two out of the 14 websites (14%) presented multimedia content. This category presented the most barriers to accessibility with a score of 42%. Regarding images, they reached an accessibility score of 46%. Their main shortcoming was the absence of a caption. Conclusion. This study highlights accessibility issues specific to people with TBI to access online resources and identifies specific areas of improvement. The results of this study provide community organizations with avenues of improvement to make their online resources more accessible to people with TBI and may therefore lead to improved community practices.

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Current Status of Websites Offering Information to Patients with Traumatic Brain Injury and Caregivers: Time for Reform?

Cited by 3 publications

References 35 publications

Is information provided within chronic subdural haematoma education resources adequate? A scoping review

Is information provided within chronic subdural haematoma education resources adequate? A scoping review

Arabic websites assessment of irritable bowel syndrome: How trustworthy are they? A cross‐sectional study

Accessibility of Online Resources for Associations Providing Services to People with Brain Injuries in Covid-19 Pandemic

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