RESUMEN
Background: Narrative medicine allows patients to reconstruct medical experiences through written portrayals of perspectives, building a mutual depiction of illness while creating a sense of belonging. This modality has not been previously studied in youth with rheumatologic illnesses, a population with high mental health burden and worse health-related quality of life. We aimed to assess the feasibility of a storytelling intervention in this patient population. Methods: This is a mixed-methods study of 14−21-year-olds with rheumatologic diseases followed in the Bronx, NY. Participants completed an hour-long creative writing session focused on patient experience with chronic disease. Pre- and post-questionnaires assessed patient-reported outcomes, and post-participation video interviews assessed personal experiences through the storytelling session. Results: Thirteen female patients were divided amongst four creative writing sessions. Twelve patients completed pre-study questionnaires and 10 completed post-study questionnaires, with 100% completion of the post-participation interviews. PedsQL surveys showed statistically significant improvement in physical health (p < 0.02), and there was no significant difference between pre- and post-scores for any other questionnaires. Interview thematic domains included writing motivation, prior writing experience, illness experience, relating to others, relationship with providers, and support. Conclusion: Creative writing is a feasible and acceptable intervention for youth with rheumatologic illnesses.
RESUMEN
OBJECTIVE: Due to concerns of infection and medication disruptions during the COVID-19 pandemic, rheumatology patients at the pandemic epicenter were at risk of distress and poor health outcomes. We sought to investigate medication disruptions and COVID-19-related distress in the Bronx, New York shortly after the peak of the pandemic and determine whether factors related to the pandemic were associated with flares, disease activity, and overall health. METHODS: In the month following the epidemic peak, we surveyed adult patients and parents of pediatric patients from rheumatology clinics in the Bronx regarding medication access, medication interruptions, COVID-19 infection, COVID-19 hospitalization, and COVID-19-related distress. We examined which factors were associated with patient-reported flares, disease activity, and overall health scores in regression models accounting for sociodemographic characteristics and rheumatologic disease type. RESULTS: Of the 1,692 patients and parents of pediatric patients that were contacted, 361 (21%) responded; 16% reported medication access difficulty, 14% reported medication interruptions, and 41% reported experiencing flare(s). In a multivariable logistic regression model, medication access difficulty was associated with increased odds of flare (odds ratio [OR] 4.0 [95% confidence interval (95% CI) 1.5, 10.4]; P = 0.005), as was high COVID-19-related distress (OR 2.4 [95% CI 1.2, 4.6]; P = 0.01). In multivariable linear regression models, medication access difficulty and high COVID-19-related distress were associated with worse disease activity scores, and high COVID-19-related distress was associated with worse health scores. CONCLUSION: Medication access difficulties and flares were common among rheumatology patients from the Bronx, New York in the month following the peak of the epidemic. Medication access difficulty and COVID-19-related distress were highly associated with flare and disease activity. COVID-19-related distress was associated with overall health scores.