bims-librar 2020-03-01 papers

bims-librar

Biomed News

on Biomedical librarianship

Issue of 2020‒03‒01
fifteen papers selected by
Thomas Krichel
Open Library Society

Health sciences libraries in Germany: new directions.
The Robert and Lilian Lindsay Library - Part one: in search of a home.
Data libraries: the missing element for modeling biological systems.
Talking about Dr. Google: Communication strategies used by nurse practitioners and patients with inflammatory bowel disease in the Netherlands to discuss online health information.
DISNET: a framework for extracting phenotypic disease information from public sources.
DL4papers: a deep learning approach for the automatic interpretation of scientific articles.
Comparing Different Methods for Named Entity Recognition in Portuguese Neurology Text.
Quality of available internet information regarding IV sedation for dental treatment.
A study on users' preference towards diabetes-related video clips on YouTube.
Is Information for Surgically Assisted Rapid Palatal Expansion Available on YouTube Reliable?
Quantitative readability analysis of websites providing information on traumatic brain injury and epilepsy: A need for clear communication.
The reliability of Deep Brain Stimulation YouTube videos.
Online Information for Treatment for Low-Risk Thyroid Cancer: Assessment of Timeliness, Content, Quality, and Readability.
Plastic Surgery on YouTube.
Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland.

Health Info Libr J. 2020 Feb 25.

Health sciences libraries in Germany: new directions.

Helge Knüttel, Evamaria Krause, Martina Semmler-Schmetz, Iris Reimann, Maria-Inti Metzendorf.

  This feature is part of a series about medical library services in various countries. It gives an overview of the state of and selected current developments of medical library services to support research, education and clinical practice in Germany. Findings from an online survey and issues of access to health information are discussed in relation to the German health care system.J.M.

Keywords:  Europe, central; access to information; health science; librarianship, libraries, health care; library services

DOI:  https://doi.org/10.1111/hir.12299
Br Dent J. 2020 Feb;228(4): 297-305

The Robert and Lilian Lindsay Library - Part one: in search of a home.

Helen Nield.

A history of the BDA Library from its beginnings up to the move to its current home in 64 Wimpole Street. In its centenary year of 2020, this article looks back and reflects on how the library was first thought of, its inception and growth under the nurturing hand of its Honorary Librarian, Lilian Lindsay, and through its move from 23 Russell Square to 13 Hill Street and the tribulations of the Second World War. The development of the Robert and Lilian Lindsay Library is then followed post-war when its first full-time professionally qualified librarian was engaged, through the tribulations of the late 1950s into the 1960s and the safe hands of Muriel Spencer, who brought the collection to its specifically designed area at 64 Wimpole Street.

DOI: https://doi.org/10.1038/s41415-020-1303-6
FEBS J. 2020 Feb 25.

Data libraries: the missing element for modeling biological systems.

Anastasia Baryshnikova.

  The primary bottleneck in understanding and modeling biological systems is shifting from data collection to data analysis and integration. This process critically depends on data being available in an organized form, so that they can be accessed, understood and reused by a broad community of scientists. A proven solution for organizing data is literature curation which extracts, aggregates and distributes findings from publications. Here, I describe the benefits of extending curation practices to datasets, especially those that are not deposited in centralized databases. I argue that dataset curation (or "data librarianship" as I suggest we call it) will overcome many barriers in data visibility and reusability and make a unique contribution to integration and modeling.

Keywords:  Systems biology; curation; databases; librarianship; modeling; omics

DOI:  https://doi.org/10.1111/febs.15261
Patient Educ Couns. 2020 Jan 20. pii: S0738-3991(20)30038-0. [Epub ahead of print]

Talking about Dr. Google: Communication strategies used by nurse practitioners and patients with inflammatory bowel disease in the Netherlands to discuss online health information.

Annemiek J Linn, Barbara C Schouten, Remco Sanders, Julia C M van Weert, Carma L Bylund.

  OBJECTIVE: This study explores how patients with Inflammatory Bowel Disease (IBD) and nurse practitioners (NPs) in the Netherlands communicate about online health information-seeking.METHODS: We analyzed 165 consultations of patients at the start of maintenance treatment using grounded theory. Consultations in which the words; internet, website, Google, Googled, webpages, online (forum/blog/platform) or a website was mentioned, were included. Segments were identified and analyzed that represented a discussion about online health information-seeking (n = 87). We coded the initiator, initiation and reaction communication strategy.
RESULTS: Half of the sample was female, most patients were moderately to highly educated and aged on average 48 years. One third of the consultations included a discussion about online health information-seeking. Seventeen communication initiation and reactions strategies were identified. Patients and NPs were equally as likely to initiate a neutral discussion about online health information-seeking. Patients repeatedly reacted with disclosing their concerns. NPs responded by taking patients' online health information-seeking seriously or affirming patients' beliefs.
CONCLUSION: This exploration makes a unique contribution by demonstrating that NPs particularly adopt a patient-centered communication style while communicating about patients' online health information-seeking.
PRACTICE IMPLICATIONS: Results of this study could guide interventions to train providers in talking about patients' online health information-seeking.

Keywords:  Medication; Online health information-seeking; Patient education; Patient-provider communication; Qualitative research

DOI:  https://doi.org/10.1016/j.pec.2020.01.011
PeerJ. 2020 ;8 e8580

DISNET: a framework for extracting phenotypic disease information from public sources.

Gerardo Lagunes-García, Alejandro Rodríguez-González, Lucía Prieto-Santamaría, Eduardo P García Del Valle, Massimiliano Zanin, Ernestina Menasalvas-Ruiz.

  Background: Within the global endeavour of improving population health, one major challenge is the identification and integration of medical knowledge spread through several information sources. The creation of a comprehensive dataset of diseases and their clinical manifestations based on information from public sources is an interesting approach that allows one not only to complement and merge medical knowledge but also to increase it and thereby to interconnect existing data and analyse and relate diseases to each other. In this paper, we present DISNET (http://disnet.ctb.upm.es/), a web-based system designed to periodically extract the knowledge from signs and symptoms retrieved from medical databases, and to enable the creation of customisable disease networks.Methods: We here present the main features of the DISNET system. We describe how information on diseases and their phenotypic manifestations is extracted from Wikipedia and PubMed websites; specifically, texts from these sources are processed through a combination of text mining and natural language processing techniques.
Results: We further present the validation of our system on Wikipedia and PubMed texts, obtaining the relevant accuracy. The final output includes the creation of a comprehensive symptoms-disease dataset, shared (free access) through the system's API. We finally describe, with some simple use cases, how a user can interact with it and extract information that could be used for subsequent analyses.
Discussion: DISNET allows retrieving knowledge about the signs, symptoms and diagnostic tests associated with a disease. It is not limited to a specific category (all the categories that the selected sources of information offer us) and clinical diagnosis terms. It further allows to track the evolution of those terms through time, being thus an opportunity to analyse and observe the progress of human knowledge on diseases. We further discussed the validation of the system, suggesting that it is good enough to be used to extract diseases and diagnostically-relevant terms. At the same time, the evaluation also revealed that improvements could be introduced to enhance the system's reliability.

Keywords:  Disease understanding; Disnet framework; Natural language processing; Phenotypic information; Public sources

DOI:  https://doi.org/10.7717/peerj.8580
Bioinformatics. 2020 Feb 24. pii: btaa111. [Epub ahead of print]

DL4papers: a deep learning approach for the automatic interpretation of scientific articles.

L Bugnon, C Yones, J Raad, M Gerard, M Rubiolo, G Merino, M Pividori, L Di Persia, D H Milone, G Stegmayer.

MOTIVATION: In precision medicine, next-generation sequencing and novel preclinical reports have led to an increasingly large amount of results, published in the scientific literature. However, identifying novel treatments or predicting a drug response in, for example, cancer patients, from the huge amount of papers available remains a laborious and challenging work. This task can be considered a text mining problem that requires reading a lot of academic documents for identifying a small set of papers describing specific relations between key terms. Due to the infeasibility of the manual curation of these relations, computational methods that can automatically identify them from the available literature are urgently needed.RESULTS: We present DL4papers, a new method based on deep learning that is capable of analyzing and interpreting papers in order to automatically extract relevant relations between specific keywords. DL4papers receives as input a query with the desired keywords, and it returns a ranked list of papers that contain meaningful associations between the keywords. The comparison against related methods showed that our proposal outperformed them in a cancer corpus. The reliability of the DL4papers output list was also measured, revealing that 100% of the first two documents retrieved for a particular search have relevant relations, in average. This shows that our model can guarantee that in the top-2 papers of the ranked list, the relation can be effectively found. Furthermore, the model is capable of highlighting, within each document, the specific fragments that have the associations of the input keywords. This can be very useful in order to pay attention only to the highlighted text, instead of reading the full paper. We believe that our proposal could be used as an accurate tool for rapidly identifying relationships between genes and their mutations, drug responses and treatments in the context of a certain disease. This new approach can certainly be a very useful and valuable resource for the advancement of the precision medicine field.
AVAILABILITY AND IMPLEMENTATION: A web-demo is available at: http://sinc.unl.edu.ar/web-demo/dl4papers/. Full source code and data are available at: https://sourceforge.net/projects/sourcesinc/files/dl4papers/.

DOI: https://doi.org/10.1093/bioinformatics/btaa111
J Med Syst. 2020 Feb 28. 44(4): 77

Comparing Different Methods for Named Entity Recognition in Portuguese Neurology Text.

Fábio Lopes, César Teixeira, Hugo Gonçalo Oliveira.

  Electronic Medical Records (EMRs) are written in an unstructured way, often using natural language. Information Extraction (IE) may be used for acquiring knowledge from such texts, including the automatic recognition of meaningful entities, through models for Named Entity Recognition (NER). However, while most work on the previous was made for English, this experience aimed at testing different methods in Portuguese text, more precisely, on the domain of Neurology, and take some conclusions. This paper comprised the comparison between Conditional Random Fields (CRF), bidirectional Long Short-term Memory - Conditional Random Fields (BiLSTM-CRF) and a BiLSTM-CRF with residual learning connections, using not only Portuguese texts from medical journals but also texts from the Coimbra Hospital and Universitary Centre (CHUC) Neurology Service. Furthermore, the performances of BiLSTM-CRF models using word embeddings (WEs) trained with clinical text and WEs trained with general language texts were compared. Deep learning models achieved F1-Scores of nearly 83% and 75%, respectively for relaxed and strict evaluation, on texts extracted from the medical journal. For texts collected from the Hospital, the same achieved F1-Scores of nearly 71% and 62%. This work concludes that deep learning models outperform the shallow learning models and that in-domain WEs get better results than general language WEs, even when the latter are trained with much more text than the former. Furthermore, the results show that it is possible to extract information from Hospital clinical texts with models trained with clinical cases extracted from medical journals, and thus openly available. Nevertheless, such results still require a healthcare technician to check if the information is well extracted.

Keywords:  Machine learning; Named entity recognition; Natural language processing; Portuguese clinical text

DOI:  https://doi.org/10.1007/s10916-020-1542-8
Br Dent J. 2020 Feb;228(4): 279-282

Quality of available internet information regarding IV sedation for dental treatment.

Claudia Heggie, Sarah L McKernon, Laura Gartshore.

Aim Evaluate the content and quality of internet information for patients regarding intravenous sedation in dentistry.Methodology Google was queried with predefined search terms that might be chosen by patients wishing to seek information: 'dental IV sedation OR dental intravenous sedation OR dental sedation'. The first hundred search results were identified. Invalid hyperlinks and duplicates were excluded. Providers, format and location of information were extracted. For webpages detailing treatment options, the DISCERN instrument and JAMA benchmark were used to determine the quality of the information provided.Results Of the first hundred search results, 89 webpages met the initial inclusion criteria. A majority (79%) originated from dental providers. Information was commonly presented as patient information leaflets. Of the 78 webpages detailing treatment options, 3% of webpages received a maximum DISCERN score of 5 and 64% a score of 1. No webpages fulfilled all JAMA criteria and 89% met only one criterion. Secondary care providers scored higher in both scales; however, this represents only 5% of the information available.Conclusion The internet is a commonly accessed information resource for patients. The quality of internet information available regarding intravenous sedation in dentistry is suboptimal. There is a need for more high-quality information resources.

DOI: https://doi.org/10.1038/s41415-020-1258-7
BMC Med Inform Decis Mak. 2020 Feb 28. 20(1): 43

A study on users' preference towards diabetes-related video clips on YouTube.

Jin Zhang, Zhong Zheng, Yanyan Wang, Yifan Zhu.

  BACKGROUND: Social media has arisen to be a new and important channel for information users for seeking and creating user-generated content. For health consumers, social media has long been regarded and employed as an important source to find health-related information and emotional support. This study investigated the characteristics of diabetes-related videos posted on YouTube, one of the most popular video-based social media platforms, and explored the factors influencing users' preference towards the investigated videos.METHODS: A mixed research method including coding and negative binomial regression test was applied. Coding was utilized to identify the status of the diabetes-related video clips and the factors related to users' attitude to them. Negative binomial regression approach was employed to detect significant relationships among the factors and users' attitude.
RESULTS: The researchers selected eight factors (e.g. number of views, post period, presenters' gender, and subject) to represent the characteristics of the diabetes-related video clips. Eleven subjects were identified by examining the diabetes-related videos and three subjects, Treatment, Sign & Symptom, and Social & Culture, appeared the most frequently. Media type, presentation setting, post period, presenter role, and presenters' gender affect the users' positive attitude significantly. Post period, presenter role, and the Sign & Symptom subject and the Nutrient subject have significant influence on the users' negative attitude.
CONCLUSIONS: Treatment, Sign & Symptom, and Social & Culture are the most popular subjects of the investigated video clips. The users are less likely to show their attitude to old videos. They prefer journalists and patients on videos but dislike male presenters compared with other presenters, and show more negative attitude towards the videos about nutrients. The findings of this study can be used to enhance the content creation of diabetes-related video clips for video contributors, the design and organization of the diabetes-related content for multimedia-based social media Website designers, and the information seeking and communication among health information users.

Keywords:  Content evaluation; Diabetes; User behavior; Video-based social media; YouTube

DOI:  https://doi.org/10.1186/s12911-020-1035-1
J Oral Maxillofac Surg. 2020 Jan 27. pii: S0278-2391(20)30082-3. [Epub ahead of print]

Is Information for Surgically Assisted Rapid Palatal Expansion Available on YouTube Reliable?

Şirin Hatipoğlu, Selin Gaş.

PURPOSE: The purpose of the present study was to assess the quality and accuracy of the information provided by YouTube videos related to surgically assisted rapid palatal expansion (SARPE).MATERIALS AND METHODS: In the present cross-sectional research, a systematic exploration of YouTube videos on SARPE was performed using the search phrase surgically assisted rapid palatal expansion (SARPE) in Google Trends. The first 200 videos were viewed, and 132 videos were included in the present study. The demographic data of the videos, including type, source, duration, date of upload, interaction index, and viewing rates, were recorded. Low-, moderate-, and high-content video groups were classified using a 22-point score scale for classification of the video content. Evaluation of the quality of videos was assessed using the video information and quality index (VIQI).
RESULTS: We graded 34 videos as having moderate and 98 as having low content. We found no high-content videos. Individual (vs corporate or professional) providers had uploaded most of the videos (94.7%). The topics most mentioned were facial changes/gap/smile (65.9%), swallowing/eating performance/diet (56.1%), swelling (49.2%), and pain (44.7%). Prognosis and survival (0.8%) and cost (3%) were the least mentioned. The moderate content scores for procedure, instructions, indications, advantages, complications, cost, pain, swelling, bruising, bleeding, tongue soreness, speech, swallowing/eating performance/diet, psychological and psychosocial impact, facial changes, pressure, breathing, and numbness were greater than the low content scores. The VIQI total scores were significantly greater in the moderate content category than in the low (P < .05).
CONCLUSIONS: Although various videos concerning SARPE are available on YouTube, the quality of the content of the videos in our sample was generally low. Specialists performing SARPE procedures should be aware of the information currently available on the Internet and actively direct their patients toward the most accurate and up-to-date sites.

DOI: https://doi.org/10.1016/j.joms.2020.01.013
Epilepsia. 2020 Feb 24.

Quantitative readability analysis of websites providing information on traumatic brain injury and epilepsy: A need for clear communication.

Daniel José Correa, Lindsey Milano, Churl-Su Kwon, Nathalie Jetté, Dennis Dlugos, Lauren Harte-Hargrove, Mary Jo Pugh, Jessica K Smith, Solomon L Moshé.

  OBJECTIVE: The use of the Internet for health-related questions is increasing, but it is not clear whether individuals can understand the information available online. Most health organizations recommend that health educational materials (HEMs) be written below the sixth grade reading level. This study was designed to evaluate the readability level of available online HEMs pertaining to traumatic brain injury (TBI), epilepsy, and posttraumatic epilepsy (PTE).METHODS: This cross-sectional readability assessment included HEMs from TBI and epilepsy stakeholder organizations and those obtained from four Internet searches. The search strategy was designed to replicate a nonmedical individual's keyword searches. Each HEM was assessed with an online automated readability tool using three indices (Flesch Reading Ease Score, Flesch-Kincaid Grade Level, and Simple Measure of Gobbledygook). Findings were compared as a function of organization type (journalistic news or health organization), targeted medical condition (TBI, epilepsy, or PTE), or content topic (patient health education, clinical research education, or both).
RESULTS: Readability analysis of 405 identified HEMs revealed scores above the sixth grade reading level recommendation. Only 6.2% of individual HEMs met the sixth grade recommendation. Journalistic news organizations' HEMs had similar readability levels to health organizations' HEMs. PTE-related HEMs required the highest readability level, >11th grade (P < .001). There were significant differences in the readability scores (P < .01 for all indices) among HEMs with information on health education, research education, or both topics. The highest required readability level (>12 grade level) was for HEMs that included both health and research education.
SIGNIFICANCE: The majority of TBI-, epilepsy-, and PTE-related online HEMs do not meet the sixth grade reading recommendation. Improving the readability of HEMs may advance health literacy around TBI, epilepsy, and PTE, leading to more effective participant recruitment/retention strategies for future antiepileptogenesis trials in persons with TBI and perhaps better patient-centered outcomes.

Keywords:  community health; health literacy; plain language; posttraumatic epilepsy; readability

DOI:  https://doi.org/10.1111/epi.16446
J Clin Neurosci. 2020 Feb 21. pii: S0967-5868(19)32366-5. [Epub ahead of print]

The reliability of Deep Brain Stimulation YouTube videos.

Shashwat Tripathi, Karim ReFaey, Rachel Stein, Breanna J Calhoun, Amanda N Despart, Megan C Brantley, Sanjeet S Grewal, Alfredo Quinones-Hinojosa, Robert E Wharen.

  BACKGROUND: Deep Brain Stimulation (DBS) was approved by the FDA in the 1990s and is used to treat a variety of movement disorders. Patients are increasingly turning to the internet for information regarding their ailments. In this study, we aim to evaluate the accuracy and reliability of information presented in DBS-related YouTube videos.METHODS: Using the "Relevance-Based Ranking" strategy for analysis we assessed the first 3 pages of YouTube for each of the following keywords: "Deep Brain Stimulation", "DBS", "DBS for Parkinson's disease", "DBS for essential tremor", and "DBS for movement disorders". Four independent healthcare personnel evaluated the videos' education quality and informational material using the validated DISCERN tool.
RESULTS: Our study found that only 24% of the 42 published videos analyzed scored above a 3 on the DISCERN scoring scale (considered a "good" video). The search term "Deep Brain Stimulation" had the highest percentage of good videos (DISCERN > 3) (32%). We also found that the duration of videos was longer for the "good" videos (Good = 25.6 min vs Unhelpful = 3.0 min, P = 0.01).
CONCLUSION: YouTube is one of the largest video platforms; the uploaded videos lack reliability and institutional oversight by the experts. We believe that medical institutions should explore this way of communicating to patients by publishing evidence-based and informative videos on diseases and their management. As it is imperative that the medical field advance to combat medical misinformation.

Keywords:  DBS; Deep Brain Stimulation; Parkinson Disease; Patient education; Quality of life; YouTube

DOI:  https://doi.org/10.1016/j.jocn.2020.02.015
J Cancer Educ. 2020 Feb 27.

Online Information for Treatment for Low-Risk Thyroid Cancer: Assessment of Timeliness, Content, Quality, and Readability.

Amanda R Doubleday, Sherwin Novin, Kristin L Long, David F Schneider, Rebecca S Sippel, Susan C Pitt.

  The Internet is a key source of health information, yet little is known about resources for low-risk thyroid cancer treatment. We examined the timeliness, content, quality, readability, and reference to the 2015 American Thyroid Association (ATA) guidelines in websites about thyroid cancer treatment. We identified the top 60 websites using Google, Bing, and Yahoo for "thyroid cancer." Timeliness and content analysis identified updates in the ATA guidelines (n = 6) and engaged a group of stakeholders to develop essential items (n = 29) for making treatment decisions. Website quality and readability analysis used 4 validated measures: DISCERN; Journal of the American Medical Association (JAMA) benchmark criteria; Health on the Net Foundation certification (HONcode); and the Suitability Assessment of Materials (SAM) method. Of the 60 websites, 22 were unique and investigated. Content analysis revealed zero websites contained all updates from the ATA guidelines and rarely (18.2%) referenced them. Only 31.8% discussed all 3 treatment options: total thyroidectomy, lobectomy, and active surveillance. Websites discussed 28.2% of the 29 essential items for making treatment decisions. Quality analysis with DISCERN showed "fair" scores overall. Only 29.9% of the JAMA benchmarks were satisfied, and 40.9% were HONcode certified. Readability analysis with the SAM method found adequate readability, yet 90.9% scored unsuitable in literacy demand. The overall timeliness, content, quality, and readability of websites about low-risk thyroid cancer treatment is fair and needs improvement. Most websites lack updates from the 2015 ATA guidelines and information about treatment options that are necessary to make informed decisions.

Keywords:  American Thyroid Association; DISCERN; Health on the Net Foundation certification (HONcode); Internet resources; Journal of the American Medical Association (JAMA) benchmark criteria; Shared decision-making; Suitability Assessment of Materials (SAM); Thyroid Cancer

DOI:  https://doi.org/10.1007/s13187-020-01713-5
Plast Reconstr Surg Glob Open. 2020 Jan;8(1): e2586

Plastic Surgery on YouTube.

Mohammed A Almarghoub, Muath A Alghareeb, AlAnoud K Alhammad, Haya F Alotaibi, Abdullah E Kattan.

YouTube is the most accessed video website in the world. It hosts a variety of medical content. Plastic surgery-related content on YouTube has not been investigated before. In this study, we analyzed the most prevalent plastic surgery-related content available on YouTube.Methods: Search terms were selected to cover the broad topics of plastic surgery. The top 20 most-viewed videos returned for each search term were analyzed. The videos were classified by the type of content, authorship, number of views, and number of likes. Data were collected and analyzed using Microsoft Excel (2016) program.
Results: Out of the 280 videos analyzed, "patient experience" was the most prevalent content type. Thirty percent of the analyzed videos were uploaded by medical centers, and 29% were uploaded from personal accounts. Educational video content constituted 6% of the total videos analyzed. Entertainment was the most prevalent (60%) content type returned when "plastic surgery" was used as the search term.
Conclusions: YouTube is an underutilized social media platform by plastic surgeons. The entertainment industry is taking advantage of the social media platform to attract and gain millions of views. Educational videos are low in number and quality.

DOI: https://doi.org/10.1097/GOX.0000000000002586
Patient Educ Couns. 2020 Feb 17. pii: S0738-3991(20)30095-1. [Epub ahead of print]

Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland.

Nicola Diviani, Claudia Zanini, Rebecca Jaks, Mirjam Brach, Armin Gemperli, Sara Rubinelli.

  OBJECTIVE: To examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience.METHODS: Nationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed.
RESULTS: Health professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers' satisfaction with own health.
CONCLUSION: Caregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it.
PRACTICE IMPLICATIONS: Building health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues.

Keywords:  Caregiver burden; Caregiver outcomes; Family caregivers; Health literacy; Information seeking; Paraplegia; Tetraplegia

DOI:  https://doi.org/10.1016/j.pec.2020.02.024