Table 1 Study characteristics.
From: Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review
Number of studies, n (%)a | ||
Study goal(s)a | ||
Evaluation of psychosocial needs of patient or caregiver | 48 (40.0%) | |
Evaluation of patient health status or outcomes | 40 (33.3%) | |
Evaluation of social media use | 34 (28.3%) | |
Development of research methods | 14 (11.7%) | |
Other | 6 (5.0%) | |
Study typea | ||
Observational | 114 (95.0%) | |
Cross-sectional | 107 (89.2%) | |
Longitudinal | 11 (9.2%) | |
Experimental | 5 (4.2%) | |
Other | 1 (0.8%) | |
Methodologya | ||
Survey | 69 (57.5%) | |
Secondary data analysis | 37 (30.8%) | |
Interview | 10 (8.3%) | |
Treatment study | 11 (9.2%) | |
Online intervention | 5 (4.2%) | |
Other | 5 (4.2%) | |
Year of publication | ||
2004 to 2011 | 9 (7.5%) | |
2012 to 2014 | 12 (10.0%) | |
2015 to 2017 | 40 (33.3%) | |
2017 to 2020 | 59 (49.2%) | |
