Skip to main content
. Author manuscript; available in PMC: 2022 Jun 1.
Published in final edited form as: Genet Med. 2021 Jul 19;23(12):2250–2259. doi: 10.1038/s41436-021-01273-z

Table 1:

Study Characteristics

The number and percent of the n = 120 papers by study goals, study type, methods, and year of publication.

Number of Studies, n (%)*
Study Goal(s)*
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 Type*
Observational 114 (95.0%)
Cross-sectional 107 (89.2%)
Longitudinal 11 (9.2%)
Experimental 5 (4.2%)
Other 1 (0.8%)
Methodology*
Survey 69 (57.5%)
Secondary data analysis 37 (30.8%)
Interview 10 (8.3%)
Treatment study 11 (9.1%)
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%)
*

Categories are not mutually exclusive, percentages may sum to >100.