INVESTIGATING CANADIANS’ INFORMATION NEEDS RELATED TO LUPUS: A GOOGLE TRENDS ANALYSIS OF ONLINE SEARCH QUERY DATA
Notice bibliographique
Résumé
PV096 / #835 Poster Topic: AS11 - Epidemiology and Public Health Background/Purpose SLE impacts 1 in 2000 Canadians, with indirect impacts on caregivers, households, family members, and healthcare professionals. SLE is idiosyncratic, with largely invisible symptoms that vary significantly from person to person, and disproportionately impacts groups considered vulnerable such as women, racialized, and low-income populations. These inequities are further underscored by a lack of public education and awareness about SLE, leading to delays in diagnosis and critical care and support. Indeed, lack of knowledge surrounding SLE has been identified as a main challenge for patients, particularly those seeking a diagnosis or recently diagnosed. Facing this challenge, many turn to online sources for information, where they risk encountering misleading or even endangering mis- or disinformation. The purpose of this research is to investigate public awareness of SLE and how this varies spatially across Canada using health geographical approaches to examine Google Trends (GT) data. Methods This research employs a health geographical approach to exploring spatial and temporal trends in information-seeking behaviors and associated knowledge gaps related to SLE in Canada. Using GT, relative search volumes (RSV), associated topics and queries were collected from 2004-present, using key words for “lupus.” The top 25 search terms were collected from each province and territory, and these search terms were analyzed thematically. The research process leveraged an integrated knowledge translation approach (iKT), in which a patient partner living with SLE was a core member of the research team. Results Search volumes for the search term “lupus” in Canada hit an all-time peak in October 2015 (RSV=1.0). This peak occurred in all provinces simultaneously, correlating with celebrity Selena Gomez’s diagnosis with SLE. Additional peaks were observed across Canada in July 2009 (RSV=0.58), September 2016 (RSV=0.69), and September 2017 (RSV=0.78), all of which were correlated with milestones in the development and eventual approval of belimumab for SLE. Similarly, a peak in August 2016 (RSV=0.66) was associated with positive Phase II trials for voclosporin. A national peak in June 2010 (RSV=0.60) was associated with the 9 th International Congress on SLE held in Vancouver. There was a marked trough across all provinces in November and December of 2020 (RSV=0.28), perhaps reflecting that SLE-related concerns were overshadowed by the ongoing COVID-19 pandemic. Overall interest was highest in Newfoundland (RSV=1.0), New Brunswick (RSV=0.83) and Manitoba (RSV=0.80), though the top related topics and queries varied spatially among provinces. The most frequently searched terms typically fell within the following themes: causes of lupus, diagnosis, symptoms, medication, and treatment. Some search terms were spatially unique, only appearing in 1 province, including search terms in French (“lupus maladie”, Quebec), and Indonesian (“penyakit lupus”, Newfoundland) languages. Conclusions An understanding of the information needs of the general public related to SLE, and how they vary spatially, is critical for designing and implementing targeted and effective patient education interventions. To this end, these research results will be shared and triangulated with the knowledge needs of advocacy organizations, and the realities of lived SLE experience, through a deliberative dialogue with key stakeholders from across Canada. This will set a foundation for the design and implementation of relevant interventions to effectively reduce SLE-related health disparities and improve SLE-related quality of life nationwide.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,003 | 0,021 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,028 | 0,077 |
| Études des sciences et des technologies | 0,002 | 0,001 |
| Communication savante | 0,004 | 0,002 |
| Science ouverte | 0,001 | 0,002 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,002 | 0,001 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».