Background/Purpose: Storytelling is a universal form of communication that allows expression of experiences. Narrative medicine can be described as a subset of storytelling in which patients reconstruct their medical experiences through written or oral portrayals of emotions and perspectives. By sharing these experiences, research has shown participants build experiential knowledge and a mutual depiction of illness while creating a sense of belonging. Currently, there are limited available group-sharing opportunities for pediatric patients with chronic rheumatologic illnesses, a population with a high prevalence of mental health symptoms and worse health-related quality of life. The current study aims to assess the feasibility of a storytelling intervention in this patient population. The primary hypothesis was that the study would be feasible, where 80% of all recruited participants were expected to complete all surveys as well as post-participation interviews.

Methods: This is a mixed methods study of English-speaking patients with chronic rheumatologic diseases, 13-21 years old, followed in the pediatric rheumatology clinic at the Children’s Hospital of Montefiore in the Bronx, NY. Participants completed an hour-long interactive virtual creative writing session focused on patient experience with chronic disease. Pre- and post- questionnaires were completed to assess potential risks and benefits of storytelling, and post-participation video interviews were completed to assess personal experiences of participating in the storytelling session. Questionnaires included Peds Quality of Life Inventory (PedsQL), Pediatric Symptom Checklist-17 (PSC-17), Patient Health Questionnaire-9 (PHQ-9), and the Child Attitude Toward Illness Scale (CATIS). Post-participation interviews were reviewed by three independent researches using qualitative software (Dedoose) for coding and thematic analysis.

Results: Thirteen female patients, ages 14-21 years, were divided amongst four creative writing sessions, with groups ranging from two to six participants per session. Diseases included lupus, juvenile dermatomyositis, systemic sclerosis, juvenile idiopathic arthritis, polyarteritis nodosa, and amplified musculoskeletal pain syndrome. Twelve of the 13 patients completed pre-study questionnaires and 10 completed post-study questionnaires, with 100% completion of the post-participation interviews. PedsQL surveys showed a trend toward improvement in physical health, with pre-participation median 64.95 [IQR 56.25-79.95] and post-participation median 78.15 [IQR 62.5-93.8]. Preliminary analysis revealed no significant difference between pre- and post-scores for any of the questionnaires. Preliminary post-participation interview analysis showed thematic domains of writing motivation, prior writing experience, illness experience, relating to others, relationship with providers, and support.

Conclusion: Creative writing is an intervention that is feasible and acceptable for youth with rheumatologic illnesses. Further evaluation is needed to understand if such interventions improve mental and physical symptoms, and children’s attitude towards their illnesses.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/storytelling-of-young-adults-with-chronic-rheumatologic-illnesses-a-pilot-study/