Sample Bias in Web-Based Patient-Generated Health Data of Dutch Patients with Gastrointestinal Stromal Tumor:Survey Study

Background: Increasingly, social media is being recognized as a potential resource for patient-generated health data, for example, for pharmacovigilance. Although the representativeness of the web-based patient population is often noted as a concern, studies in this field are limited. Objective: This study aimed to investigate the sample bias of patient-centered social media in Dutch patients with gastrointestinal stromal tumor (GIST). Methods: A population-based survey was conducted in the Netherlands among 328 patients with GIST diagnosed 2-13 years ago to investigate their digital communica... Mehr ...

Verfasser: Dirkson, Anne
den Hollander, Dide
Verberne, Suzan
Desar, Ingrid
Husson, Olga
van der Graaf, Winette T.A.
Oosten, Astrid
Reyners, Anna K.L.
Steeghs, Neeltje
van Loon, Wouter
van Oortmerssen, Gerard
Gelderblom, Hans
Kraaij, Wessel
Dokumenttyp: Artikel
Erscheinungsdatum: 2022
Reihe/Periodikum: Dirkson , A , den Hollander , D , Verberne , S , Desar , I , Husson , O , van der Graaf , W T A , Oosten , A , Reyners , A K L , Steeghs , N , van Loon , W , van Oortmerssen , G , Gelderblom , H & Kraaij , W 2022 , ' Sample Bias in Web-Based Patient-Generated Health Data of Dutch Patients with Gastrointestinal Stromal Tumor : Survey Study ' , JMIR Formative Research , vol. 6 , no. 12 , e36755 . https://doi.org/10.2196/36755
Schlagwörter: patient forum / pharmacovigilance / rare cancer / representativeness / sample bias / social media
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-29027699
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : https://hdl.handle.net/11370/4648b6a1-46a6-4d07-af61-3337e57e7438

Background: Increasingly, social media is being recognized as a potential resource for patient-generated health data, for example, for pharmacovigilance. Although the representativeness of the web-based patient population is often noted as a concern, studies in this field are limited. Objective: This study aimed to investigate the sample bias of patient-centered social media in Dutch patients with gastrointestinal stromal tumor (GIST). Methods: A population-based survey was conducted in the Netherlands among 328 patients with GIST diagnosed 2-13 years ago to investigate their digital communication use with fellow patients. A logistic regression analysis was used to analyze clinical and demographic differences between forum users and nonusers. Results: Overall, 17.9% (59/328) of survey respondents reported having contact with fellow patients via social media. Moreover, 78% (46/59) of forum users made use of GIST patient forums. We found no statistically significant differences for age, sex, socioeconomic status, and time since diagnosis between forum users (n=46) and nonusers (n=273). Patient forum users did differ significantly in (self-reported) treatment phase from nonusers (P=.001). Of the 46 forum users, only 2 (4%) were cured and not being monitored; 3 (7%) were on adjuvant, curative treatment; 19 (41%) were being monitored after adjuvant treatment; and 22 (48%) were on palliative treatment. In contrast, of the 273 patients who did not use disease-specific forums to communicate with fellow patients, 56 (20.5%) were cured and not being monitored, 31 (11.3%) were on curative treatment, 139 (50.9%) were being monitored after treatment, and 42 (15.3%) were on palliative treatment. The odds of being on a patient forum were 2.8 times as high for a patient who is being monitored compared with a patient that is considered cured. The odds of being on a patient forum were 1.9 times as high for patients who were on curative (adjuvant) treatment and 10 times as high for patients who were in the palliative phase ...