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1.
J Cancer Educ ; 37(5): 1349-1356, 2022 10.
Article in English | MEDLINE | ID: mdl-33496934

ABSTRACT

The aim of this study is to assess the Internet usage pattern amongst glioma patients and to characterize its impact in their decision-making and clinical interactions. Glioma patients attending a tertiary cancer center between June and December 2019 were invited to participate in this study. A 26-item survey consisting of closed and open-ended questions was distributed with a unique identifier. Quantitative data were analyzed with descriptive statistics using SPSS Statistical package, and qualitative data with grounded theory approach. Thirty-two patients completed the survey. Demographics varied in age, time since diagnosis, glioma type, and level of education. Eighty-one percent were identified as "Internet users" who sought online glioma information. Google was the most popular search engine (96%), with "glioma" being the most frequent search term. The selection of websites often relied on perceived credibility and top search hits. The most searched topic was prognosis (73%). The majority of patients found that online information was easy to understand, and this did not vary significantly amongst age groups. Website quality was always assessed by 60% of patients. Only 62% patients found the Internet a useful resource, and 70% patients found it facilitated their understanding. Most patients discussed their Internet findings with a physician, largely regarding concerns about reliability. There is variable glioma information available online. Patients with glioma use the Internet as a resource, with variable impact on their interactions and decision-making. This information can be used by physicians, educators, and website developers to support glioma patients' needs.


Subject(s)
Physicians , Search Engine , Humans , Internet , Reproducibility of Results , Surveys and Questionnaires
2.
Neurooncol Pract ; 8(2): 129-136, 2021 Apr.
Article in English | MEDLINE | ID: mdl-35112670

ABSTRACT

BACKGROUND: Meningiomas are the most common primary central nervous system tumors and patients face difficulty evaluating resources available online. The purpose of this study is to systematically evaluate the educational resources available for patients seeking meningioma information on the Internet. METHODS: A total of 127 meningioma websites were identified by inputting the term "meningioma" on Google and two meta-search engines. A structured rating tool developed by our research group was applied to top 100 websites to evaluate with respect to accountability, interactivity, readability, and content quality. Responses to general and personal patient questions were evaluated for promptness, accuracy, and completeness. The frequency of various social media account types was analyzed. RESULTS: Of 100 websites, only 38% disclosed authorship, and 32% cited sources. Sixty-two percent did not state date of creation or modification, and 32% provided last update less than 2 years ago. Websites most often discussed the definition (99%), symptoms (97%), and treatment (96%). Prevention (8%) and prognosis (47%) were most often not covered. Only 3% of websites demonstrated recommended reading level for general population. Of 84 websites contacted, 42 responded, 32 within 1 day. CONCLUSIONS: Meningioma information is readily available online, but quality varies. Sites often lack markers for accountability, and content may be difficult to comprehend. Information on specific topics are often not available for patients. Physicians can direct meningioma patients to appropriate reliable online resources depicted in this study. Furthermore, future web developers can address the current gaps to design reliable online resources.

3.
PM R ; 11(12): 1278-1286, 2019 12.
Article in English | MEDLINE | ID: mdl-30900829

ABSTRACT

BACKGROUND: Following spinal cord injury (SCI), up to 64% of individuals experience cognitive deficit. However, the reliability of commonly used neuropsychological tests is currently unknown in this population. OBJECTIVES: To evaluate the test-retest reliability of cognitive measures in individuals with SCI. DESIGN: Cross-sectional study. SETTING: Vancouver General Hospital. PARTICIPANTS: Individuals with a chronic (>2 years) SCI (n = 22). METHODS: Across three visits (separated by ~16 days), 22 participants with chronic SCI completed a neuropsychological battery evaluating memory (Rey Auditory-Verbal Learning Test [RAVLT]), attention/concentration/psychomotor speed (Digit Span Task, Stroop Test), and executive function (Trail Making Test A&B, Symbol Digit Modalities Test, Controlled Oral Word Association Test). Coefficients of variation (CVintra ) and intraclass correlation coefficients (ICCs) were calculated to determine the reliability of each test between visits. Linear regressions were performed to assess the associations between variability (CVintra ) and participant characteristics, such as age or highest education level attained. Repeated-measures, one-way analysis of variance (ANOVA) was conducted to determine any significant practice effects, and smallest real differences (SRDs) were calculated. MAIN OUTCOME MEASUREMENTS: Repeated scores on aforementioned neuropsychological tests. RESULTS: ICCs ranged from 0.77 to 0.93, with the exception of RAVLT recognition score (ICC = 0.27). Age showed a moderate association with CVintra in RAVLT interference recall scores (r = 0.43, P = .047), but was not a confounding factor for other measures. Education was not associated with CVintra . Significant practice effects were noted for most of the cognitive tests assessed. CONCLUSIONS: Other than the RAVLT recognition score, these cognitive measures demonstrated good-to-excellent reliability. Although this is encouraging, test-retest variability should be considered when interpreting the efficacy of various cognitive training strategies to mitigate cognitive decline in this population. Thus, the SRD values presented herein will allow researchers and clinicians to identify "true" changes in cognitive function with repeated testing. LEVEL OF EVIDENCE: III.


Subject(s)
Cognition Disorders/diagnosis , Cognition Disorders/etiology , Executive Function/physiology , Memory and Learning Tests/standards , Spinal Cord Injuries/complications , Adult , Analysis of Variance , British Columbia , Chronic Disease , Cross-Sectional Studies , Female , Follow-Up Studies , Hospitals, General , Humans , Incidence , Linear Models , Male , Reproducibility of Results , Severity of Illness Index , Spinal Cord Injuries/psychology
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