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Dirkson A, den Hollander D, Verberne S, Desar I, Husson O, van der Graaf WT, Oosten A, Reyners A, Steeghs N, van Loon W, van Oortmerssen G, Gelderblom H, Kraaij W
Sample Bias in Web-Based Patient-Generated Health Data of Dutch Patients With Gastrointestinal Stromal Tumor: Survey Study
Sample bias in online patient generated health data of Dutch Gastrointestinal Stromal Tumor patients: Survey study
Anne Dirkson;
Dide den Hollander;
Suzan Verberne;
Ingrid Desar;
Olga Husson;
Winette T.A. van der Graaf;
Astrid Oosten;
An Reyners;
Neeltje Steeghs;
Wouter van Loon;
Gerard van Oortmerssen;
Hans Gelderblom;
Wessel Kraaij
ABSTRACT
Background:
Increasingly, social media is being recognized as a potential resource for patient-reported outcomes in particular for pharmacovigilance. Although representativeness of the online patient population is an often noted as a concern, studies in this field are limited.
Objective:
The objective of our study was to investigate the sample bias of patient-centered social media in Dutch Gastrointestinal Stromal Tumor (GIST) patients.
Methods:
A population-based survey was conducted in the Netherlands among 328 GIST patients 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 non-users.
Results:
Eighteen percent of survey respondents reported having contact with fellow patients via social media. The majority made use of GIST patient forums. Forum users are more likely to be monitored on adjuvant or palliative treatment and less likely to be considered cured than non-users (P=.001). Forum users also report a lower level of social functioning (84.8 of 100) than non-users (93.8 of 100) (P=.008). We found no statistically significant differences for age, sex, socioeconomic status and time since diagnosis.
Conclusions:
Over- and underrepresentation of GIST patients in different treatment phases on social media should be taken into account when sourcing patient forums for patient-reported outcomes. A further investigation of the sample bias in other online patient populations is warranted as well as research into methods for bias mitigation.
Citation
Please cite as:
Dirkson A, den Hollander D, Verberne S, Desar I, Husson O, van der Graaf WT, Oosten A, Reyners A, Steeghs N, van Loon W, van Oortmerssen G, Gelderblom H, Kraaij W
Sample Bias in Web-Based Patient-Generated Health Data of Dutch Patients With Gastrointestinal Stromal Tumor: Survey Study