Patient and family social media use surrounding a novel treatment for a rare genetic disease: a qualitative interview study

Nine included studies collected data using surveys or semistructured interviews to gain an understanding of parental views, mostly advertised through rare disease organizations.

“9 studies [14-16,18,19,22-24,26] collected data using surveys or semistructured interviews to gain an understanding of parental views, mostly advertised through rare disease organizations.”

Around 5 included study cohorts were based in the United States, 1 in Canada, and 2 in Europe.

“Around 5 [14-16,24,26] study cohorts were based in the United States, 1 [22] in Canada, and 2 [19,23] in Europe.”

Advocacy groups cannot offer the same responsiveness, interactivity, and community as Facebook groups.

“Another study reported that advocacy groups cannot offer the same responsiveness, interactivity, and community as Facebook groups [24].”

Disease advocacy was often prevalent in online support groups.

“Altogether, 3 studies [20,21,24] highlighted that disease advocacy was often prevalent”

Day-to-day care information and guidance were often shared, such as the practicalities of medication administration.

“Day-to-day care information and guidance were often shared, such as the practicalities of medication administration [22,24].”

Facebook was reported to provide guidance and experience from other families, personal story sharing, and information on events.

“Facebook was reported to provide guidance and experience from other families, personal story sharing, and information on events [21,24,26].”

Three studies mentioned increased use of online communities in stressful periods, such as initial diagnosis, receipt of results, and medical procedures.

“Three studies [15,24,26] mentioned the increased use of online communities in stressful periods, such as initial diagnosis, receipt of results, and medical procedures.”

Almost half of the included studies reported that parents were sharing their child's personal experiences and stories within these groups.

“Almost half of the included studies reported that parents were sharing their child’s personal experiences and stories within these groups [14,18,20,21,24].”

Group members were sharing information on treatments, including medication, procedures, novel treatments, and alternative therapies.

“Overall, 3 studies [14,24,25] noted that group members were sharing information on treatments, including medication, procedures, novel treatments, and alternative therapies.”

Four included studies commented on the sharing of information by parents via these groups.

“Not only are parents accessing information via these groups, but also 4 studies [18,21,22,24] commented on the sharing of information.”

Parents sought or shared practical information on caring for a child with a rare genetic disease in 9 included studies.

“Practical information on caring for a child with a rare genetic disease was sought or shared by parents in 9 [14-16,18,21-25] of the included studies.”

Parents of children with spinal muscular atrophy used social media to gather information on nusinersen following its approval.

“An example of this is shown in 1 study [24] where parents of children with spinal muscular atrophy used social media to gather information on nusinersen (a possible drug treatment) following its approval [24].”

Parents use social media for medical information finding.

“Eight studies [16,20-26] showed parental use of social media for medical information finding.”

Parental discussion of online findings with health care providers was reported by 5 studies.

“Parental discussion of online findings with health care providers was reported by 5 studies [15,19,23,24,26].”

Some studies report a 'fact-checking culture' within online groups.

“Some studies report “fact-checking culture” within online groups, although the methods by which this occurs are not explored [24].”