E013 Co-production of a quality improvement project to address glucocorticoid toxicity
Authors: Morgan Funmi , Al-Hilali Hussain , Grover Margaret , Neill Lorna , Snowden Eleanor , Scopes Jean , Crowther George , Rebane Amy , Ismail Hanif , Mackie Sarah L 
Published: April 2023

Background/Aims

Glucocorticoid toxicities are well-known, but patient involvement work (PMR Voices 2021) had highlighted a need for better patient education/counselling about side-effects, including early neuropsychiatric toxicity, and support for self-management. In our audit of steroid-induced hyperglycaemia, our attempts to improve counselling had proved challenging to implement. Therefore, we sought patient involvement in designing a quality improvement (QI) project informed by their lived experience.

Methods

Using insight gathered from previous patient involvement and the clinical team, we held a workshop with ten patient partners living with polymyalgia rheumatica (PMR) to share stories and define relevant themes. We then collected narratives using a distributed ethnographic and mixed-methods tool, Sensemaker®, designed to enable multi-perspective narrative methods at scale. The SenseMaker site was disseminated via patient organisations including PMRGCAuk, PMR GCA Scotland and VasculitisUK, along with a parallel survey for professionals. The survey centred around gathering a narrative from the perspective of the patient, healthcare professional (HCP), or carer; and self-signification of that narrative against a conceptual framework based on theory (Leventhal’s Common-sense Model) and themes identified by the patient partners. The group of ten patients discussed the emerging patterns, after which further analysis of the narratives was conducted to link them to feasible actions.

Results

The clinical team identified access and communication, echoed by the patient team with particular focus on trustworthy information sources, visibility of side-effects, and future health significance. We piloted and improved the survey with patient partners. In 4 weeks we received 198 patient responses, mostly from the UK, and those of 28 HCPs. HCPs informally fed back that the survey was interesting to complete because it prompted thought and reflection. The patient narratives conveyed multi-layered messages; physical and mental health were intertwined. The two groups described the same spectrum of steroid side-effects (mood disturbance commonest). Compared to HCPs, patients chose to share narratives focused less on prevention and more on managing/mitigating, and often spoke of “trustworthy information” coming from the lived experience of themselves or others, rather than medical sources. Many of the narratives suggested simple actions that might improve clinical services, yet might not have been visible in the context of clinical encounters or quantitative survey measures alone.

Conclusion

We used co-production to inform healthcare improvement. The method can reveal biases of perspective and entrained patterns of thinking amongst both experts and patients that can affect decision-making relevant to health outcomes. Limitations include lack of a defined sampling frame (dissemination via informal networks), and limitations related to digital exclusion; with more time/resources it would be possible to access a wider patient audience. This method helped us prioritise feasible actions to take forward in QI work to evaluate their effectiveness as we incorporate them into our service.

Disclosure

F. Morgan: None. H. Al-Hilali: None. M. Grover: None. L. Neill: Other; LN is a trustee of PMR GCA Scotland. E. Snowden: Other; The Sensemaker tool is used both in non-profit and commercial contexts. J. Scopes: None. G. Crowther: None. A. Rebane: None. H. Ismail: None. S.L. Mackie: Consultancies; SLM has provided consultancy on behalf of her institution for Roche/Chugai, Sanofi, AbbVie and AstraZeneca. In all cases fees were paid to her institution and no personal fees were received. Member of speakers’ bureau; SLM has given talks on behalf of her institution for Pfizer, Vifor and UCB. In all cases fees were paid to her institution and no personal fees were received. Grants/research support; As a research grant co-applicant, SLM has received research funding (partial salary support) from Vifor, paid to her institution. Other; SLM was supported by Roche to attend EULAR2019 and by Pfizer to attend ACR2021 virtually. SLM has been an investigator on clinical trials for Sanofi and GSK.