Ab1427-Pare patients as Researchers of Tietzes Syndrome and Costochondritis Using Participatory Narrative Methods of Inquiry

Abstract

BackgroundTietzes syndrome and costochondritis are rare, inflammatory rheumatic disorders characterised by chest pain. Pain is most commonly localised unilaterally at the costochondral junctions, with more than one junction generally affected (1). Whereas the conditions are considered self-limiting and in two third of the cases resolve within one year (2,3), they can last up to several years or be recurring (4), limiting the patients ability to function in occupational demands and activities of daily living. The exact cause is not known and therefore it remains a challenge to take on an effective treatment approach.ObjectivesThis study aims to gain more insight into patients and medical professionals experiences with and handling of Tietzes syndrome and costochondritis.MethodsIt was noticed that hardly any research is done on Tietzes syndrome and costochondritis and hardly any medical professionals are specialised in these conditions. This sparked the idea to involve patients themselves as researchers of the conditions. To that end an online platform called a StoryPoint was designed, based on the Participatory Narrative Inquiry (PNI) approach (5). This StoryPoint allowed patients and medical professionals to anonymously share and do research on their personal experiences with the conditions.This online assessment was followed by a live meeting with patients suffering from Tietzes syndrome or costochondritis. During this meeting the online gathered narratives were evaluated using group narrative evaluation methods (5).ResultsIn total 53 experiences were retrieved. Approximately 60% of patients experienced complaints on a daily basis (figure 1). The reported limitations in daily living were inability to perform physical exercise, a lack of energy and incomprehension from the environment.Treatments advised by specialists that relieved complaints were physical therapy, breathing techniques and NSAIDs. Relaxation, low impact movement and warmth were solutions that patients initiated themselves and were perceived helpful. Of all treatments advised by a medical professional 70% improved complaints, 22% had no effect at all, and 8% worsened the complaints (figure 2). Of the treatments that patients initiated themselves, 78% improved complaints and 22% had no effect (figure 2).We are currently involving a wide variety of medical professionals and researchers for further evaluation of the narratives.ConclusionTietzes syndrome and costochondritis can be very limiting conditions, especially when complaints become chronic. Treatments advised by medical professionals are hardly any more effective than treatments initiated by patients themselves. Since both conditions are rare and relatively unknown, medical specialists have difficulties recognising, diagnosing and treating these conditions. It is important that medical professionals become more familiar with Tietzes syndrome and costochondritis and become involved in this type of patient-driven research approaches.References[1] Proulx AM, Zryd TW. Costochondritis: diagnosis and...