Session Title: Pediatrics: Disease Flares
Session Type: Abstract Submissions (ARHP)
Background/Purpose: Anecdotal evidence suggests that patients vary in how long they wait before seeking medical help for an RA flare. The aim of this research is to explore why, and their tipping points for seeking help.
Methods: Q-Methodology: 29 RA patients sorted 23 statements (generated in previous qualitative interviews) about their help seeking behaviours when in a flare, across a forced distribution in ranked order of agreement. Data were analysed using centroid factor analysis with varimax rotation (i.e. the participants and not the items are the variables). Demographic and clinical data were collected and patients completed comments booklets about their rationale for sorting the statements.
Results: Consensus was reached on 9 statements and two factors were produced, which explained 51% of the study variance and accounted for 22 of the 29 participants. None of the Q-sorts were confounded (loading on more than one factor). A participant loading of 0.54 reached significance at p<.01.
Consensus: “When I just don’t know what to do anymore”: The top 3 of the 9 consensus statements are ‘when the pain becomes too intense’, ‘when the Flare has gone on longer than expected’ and ‘when the symptoms become uncontrollable’, suggesting these are the tipping points for seeking help.
Factor A: Definite Decision: “It won’t go away, so I won’t wait”: Sixteen participants: mean disease duration 15.2yrs (SD 10.3), age 54.8yrs (SD 9.6), HAQ score 1.360 (SD 0.8), 69% female, 69% on biologic therapies.
These patients will seek help quickly when they are in a flare, they know that their medical team can help and that their flare won’t go away on its own. They don’t worry about wasting their own or the Rheumatologist’s time and will not wait until their next scheduled appointment for help. Tipping points for seeking help for these patients are worries about long term damage to their joints, knowing their flare needs to be controlled by new medication and their quality of life being affected.
Factor B: Cautious Indecision: “Lying down and not moving until it goes”: Six participants: mean disease duration 18.7yrs (SD 13.9), age 50.5yrs (SD 15.4), HAQ score 1.23 (SD 0.9) 67% female, 0% on biologic therapies.
These patients wait to contact the medical team when they are in a flare. They are reluctant to seek help as they hope the flare will go away on its own and do not believe it will last until they seek medical help. They don’t like asking for help and worry about wasting the Rheumatologist’s time. They may wait until their next scheduled appointment before seeking help and will try to manage their symptoms themselves. These patients need to be prompted by a friend or family member to seek help.
Conclusion: Whilst consensus indicates pain is a tipping point, for some patients a complex interaction of beliefs hinders their help-seeking behaviour. Health care professionals should be aware that some patients delay help-seeking due to fears of time wasting, thus potentially risking further damage.
C. A. Flurey,
R. A. Hughes,
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/will-i-waste-your-time-delays-in-help-seeking-for-ra-flares/