Background/Purpose:

Patients with systemic juvenile idiopathic arthritis (SJIA) frequently encounter delays from symptom onset to SJIA diagnosis (dx), partly due to the broad differential of fever of unknown origin, lack of provider recognition, and its rarity.  Given this typical diagnostic delay, families often seek multiple medical opinions and post to social media about their frustration.  This linguistic analysis observed the changing language and social media posting behavior of parents during the time period to SJIA dx.

Methods: US-hosted English-language public social media sites were manually reviewed by linguists to identify posts consistent with an SJIA dx, divided into pre- and post-dx periods, with a linguistic analysis.

Results:

4221 posts with a date range of 7/10/01-1/7/15 on 108 sites were reviewed from 1/11-3/12/15.  283 posts (all unique authors) consistent with pre-dx SJIA patients (pts), and 722 posts (381 unique authors) involving post-SJIA dx pts were found.  Parents of pre-dx pts looked to social media for answers and to share status updates, focusing on 3 site types: natural therapy forums (39%), Facebook (27%), and disease-specific forums (17%).  Posts in the early pre-dx phase were characterized by language showing confidence in the healthcare provider (HCP) and trust in parental instincts, with frequent expressive language.  As time passed without a dx, posts showed parents beginning to doubt their intuition and faith in the HCP’s ability to dx their child.   Later posts also had more objective narratives of symptoms observed with less of a child-centered emotional focus and reduced-to-absent expressive language as parents became caregivers.  At later pre-dx stages, caregivers continued to post most often to alternative/natural parenting forums (22%) and Facebook (18%).  Once dx of SJIA became clear, caregivers moved to disease specific websites–although they still used Facebook.  At the time of dx, caregivers used dry straightforward language in their “announcement” posts.  After dx, caregivers posted about renegotiating HCP relationships and usually did not explicitly solicit advice but asked for other parents’ experiences, analogies and anecdotes. With initiation of treatment, posts began to show a slow return of expressive language and understanding of their “new normal.”

Conclusion:

Caregiver presence on social media sites provides key indicators about the stages in the diagnostic journey for SJIA pts.  Analysis of posts reveals the often delayed diagnosis of SJIA, its complex course and impact on relationships of pts and caregivers with their HCP.  Caregivers use different language, references and websites pre-dx than post-dx and demonstrate gaps in caregiver/HCP communication.  Importantly, post-dx parent language in social media posting did not return to the original linguistic parent frame prior to disease onset.   This diagnostic process changes the parents – not just the child, as evidenced by social media posts.  Furthermore, the parents’ role changes from parent to caregiver, and this role fluctuates throughout the disease course and treatment. They do continue to actively develop understanding of SJIA and treatment options through social media.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-family-journey-to-diagnosis-with-systemic-juvenile-idiopathic-arthritis-as-evidenced-through-changing-social-media-presence/