P169 Optimising self-management in axial spondyloarthritis: a qualitative exploration of patient perspectives
Authors: Barnett Rosie , Clarke Christopher , Sengupta Raj , Rouse Peter 
Published: April 2024

Background/Aims

In the UK, people living with axial spondyloarthritis (axSpA) will see their rheumatology team once a year, or less during routine clinical practice. Providing patients with the knowledge, tools and resources to confidently self-manage their condition is therefore an important component of patient care. The 2022 NICE Impact Arthritis report indicates that education and non-pharmacological treatment is lacking, making long-term self-management difficult for patients. Development of effective self-management interventions requires a deep understanding of the psychosocial context of people living with axSpA and the challenges they face when managing the practical, physical and psychological impacts of axSpA. This study therefore aimed to collect rich qualitative data from people living with axSpA to understand their experiences living with and managing their condition.

Methods

Online surveys were designed in alignment with guidance from Braun et al., (2021), regarding online surveys as a qualitative research tool. Open-ended questions were prioritised to collect rich qualitative data. Surveys were distributed via patient organisations and Twitter. Responses were collected via the Jisc online surveys platform from July 2022-January 2023. Results were interpreted using inductive reflexive thematic analysis.

Results

Data were collected from 30 axSpA participants, with varying durations of diagnosis (&lt;1 year to &gt; 20 years). 70% of respondents were female, and all participants were aged 25-84 years. Over half (63.3%) had experienced symptoms for ≥10 years before diagnosis. Three themes were generated from the qualitative data. Theme 1) Personalised, flexible approach: AxSpA is a heterogenous, fluctuating, unpredictable condition, thus requiring a personalised, flexible approach to self-management. Optimal self-management requires a deep understanding and acceptance of one’s own condition and symptoms, to effectively self-regulate emotions and behaviour and communicate changing needs in response to fluctuating symptoms. Theme 2) Making the invisible, visible: people living with axSpA often have no visible disability, and can struggle to feel seen and believed, especially if experiencing diagnostic delay and lacking education about axSpA. Feeling supported, believed and understood is critical for disease acceptance and feeling confident and able to engage with positive health behaviours and communicate needs, versus isolation, inner conflict, guilt and suffering through a “personal world of pain”. Theme 3) Coping with fatigue and pain: fatigue and pain are the most challenging aspects of the condition to manage, due to their unpredictability and impact on emotional resilience, autonomy, and motivation or ability to perform self-care behaviours.

Conclusion

Optimal self-management in axSpA requires early diagnosis, education and reassurance from healthcare professionals, including guidance for communicating with friends, family and colleagues about axSpA, and signposting to patient organisations/communities. Self-management interventions should target fatigue, pain and disease acceptance, and support patients to gain a deep understanding of their own condition to identify personalised, flexible self-care strategies that work for them.

Disclosure

R. Barnett: None. C. Clarke: None. R. Sengupta: Honoraria; RS has received honoraria from Abbvie, Biogen, BMS, Eli Lilly, MSD, Novartis, Pfizer, Roche and UCB, all unrelated to this abstract. P. Rouse: None.