Poster Presentation 46th Annual ARA NSW-ACT Branch Meeting 2024

Idiopathic Inflammatory Myositis Qualitative Interview Study (#32)

Grace GB Bak 1 , Katherine KN Nguyen 2 , Daniel DS Sumpton 1
  1. Rheumatology, Concord Repatriation General Hospital, Sydney, NSW, Australia
  2. Rheumatology, Prince of Wales Hospital, Sydney, NSW, Australia

Background:

Idiopathic inflammatory myopathies (IIMs) describe a group of rheumatological autoimmune disorders which are characterised by muscle inflammation and weakness.1,2,3 Pulmonary, gastrointestinal and cutaneous manifestations lead to increased morbidity and mortality compared to the general population.1,4,5 People with inflammatory myopathies also suffer significant functional impairment, low health status and negative effects on their health-related quality of life.6,7,8

The health impacts of Idiopathic inflammatory myopathies (IIMs) have been studied quantitatively using a variety of measurement instruments,6,9,10 as well as in comparison to other chronic diseases such as diabetes and hypertension.7 Consistently, this speaks to the chronic and life-changing experience of a diagnosis of IIM, as well as difficulties in day-to-day life.11,12 However, these outcomes are measured through survival, disease activity and functional scoring, and are unable to capture the true, lived experiences of patients who live with IIMs.

There are only few primary qualitative studies12,13,14 looking at the perspectives and experiences of patients living with IIMs, and only one focus group study in Australia.15 As such, there is a paucity of qualitative studies which leads to a disconnect between physicians and patients in their perceptions and expectations of disease outcomes.16

There is a need for further qualitative research into IIMs in order to gain a deeper understanding of patients’ beliefs and values, and therefore the drivers behind patient and clinician interactions.16,17,18 This proposed study would therefore help to address the gaps in this field, ultimately aiming to realign patient and physician expectations of treatment and disease outcome.

 

Study objectives:

To describe the perspectives of patients and their experiences of living with IIMs through a primary qualitative interview study. This would enable improved clinical practice by allowing clinicians to move beyond simplistic themes, and to elaborate on causal explanations and contextual understanding in the provision of health and social care17 to people living with IIMs. This study has secondary objectives of identifying areas of deficiency within the patients’ health care experience and highlighting aspects of care which can be improved. 

 

Study design:

This is a primary qualitative interview study involving semi-structured face-to-face or video-conferenced interviews with patients living with a diagnosis of IIM. It will be multi-site study recruiting patients from metropolitan hospitals in Sydney, NSW.

 

Analysis:

Patients will be recruited until data saturation is achieved. Interviews will be coded and thematically analysed to identify major themes and subthemes.

 

Results and conclusion:

In progress. Results anticipated by October/November 2024.

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  2. 2. Selva-O'Callaghan, A., Pinal-Fernandez, I., Trallero-Araguás, E., Milisenda, J. C., Grau-Junyent, J. M., & Mammen, A. L. (2018). Classification and management of adult inflammatory myopathies. The Lancet Neurology, 17(9), 816-828.
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