125th Anniversary Scholarships for Black British Researchers – What matters to patients in the treatment of lupus nephritis? a mixed methods study of patient preferences

Lupus nephritis (LN) is an autoimmune inflammatory glomerulonephritis in which an over-active immune system causes inflammation in the kidney. Inadequate treatment of LN results in chronic kidney disease or end-stage kidney failure. Although several national and international guidelines for LN management exist, we have identified marked differences in physician’s treatment preferences for LN across the UK, including differences between rheumatologists and nephrologists [1]. In a parallel study we are investigating the decision cues used by physicians to select treatment.

As effective clinical decision-making is a shared process between physicians and patients, it is critical to understand patient preferences with regards to treatment. This is important to inform patient-centred drug development, clinical guidelines, and tools to support shared decision-making. This project will allow you to study in detail patient preferences with respect to LN treatment, the relative importance of these and how they align with the opinions of other stakeholders.

Proposed methods

This mixed methods study will comprise 3 phases:

Phase 1: You will conduct semi-structured exploratory interviews with patients both with LN and with systemic lupus erythematosus (SLE) who have not developed LN but may be considered “at risk”. You will purposively recruit participants from ethnic minority and socially disadvantaged backgrounds to ensure a broad range of responses. You will analyse transcripts using content and inductive thematic analysis (full training will be given, see below).

Phase 2: You will conduct a survey involving Q methodology to define the relative importance of treatment attributes important for decision making that were identified in Phase 1.

Phase 3: You will hold focus groups with key stakeholders (patients, physicians, charity representatives, commissioners) will be used to explore the findings from phases 1 and 2 and triangulate these with data from our separate study of decision cues used by physicians to identify areas of commonality or critical differences.

Impact

This study will provide an essential understanding of patient preferences for treatment of LN and compare these to physician preferences, which we are investigating in a separate, complementary study. This study has clear relevance for pharmaceutical or biotech companies who are developing new treatments for LN as it is critical that new therapies are acceptable to patients, and that clinical trial design reflects patient treatment preferences.

Our findings will also inform future clinical guidelines for the treatment on LN, directly addressing treatment-related factors or attributes which are important for patients. Understanding differences in treatment preferences between patient groups will also inform future studies to address health inequalities and define how patient preferences relate to treatment adherence and ultimately outcomes for patients with LN.

Your supervisory team

The supervisors for this doctoral research project are Dr John Reynolds and Dr Marie Falahee. John leads both experimental and clinical research programmes aiming to understand the heterogeneity of lupus, why some patients have worse outcomes and how best to optimise treatment. Within this he has previously studied physicians’ approaches to treatment of systemic lupus (in terms of defining lupus remission) and more recently the management of lupus nephritis. Marie is a Lecturer in Behavioural Rheumatology with extensive experience in qualitative and mixed-methods studies. Marie is an expert in patient preference studies and their methodologies and has led a case study of treatment preferences for rheumatoid arthritis for IMI_PREFER which has directly informed international recommendations on the integration of patient preference information in drug development which are influencing regulatory policy [2-5]. Marie also has academic oversight of our NIHR commended Rheumatology Research Patient Partnership (R2P2) which supports patient involvement across the Rheumatology Research Group and our PhD student-patient partnership (the Student Patient Alliance (SPA)).

A unique aspect of this project is that it will be supported by an established expert panel comprised of 2 nephrologists (Imperial College London, Cambridge), 6 rheumatologists with expertise in the management of lupus (UCL, Southampton, Leeds, Birmingham, Liverpool, Newcastle) and 2-3 patient partners. It is anticipated that the panel will meet twice per year and provide you with advice in the development of the semi-structured interviews, interpretation of findings, development and interpretation of the survey and support during the co-development of a clinical decision tool. The panel will also be available to offer ad hoc advice if needed.

You will be based in the Department of Inflammation and Ageing which conducts a broad range of research from discovery science through to healthcare research. We have a thriving postgraduate research community and host regular internal and external seminars. We are a EULAR Centre of Excellence in Rheumatology Research and are also supported by the NIHR Biomedical Research Centre (BRC).

Research training and support

You be supported to pursue a tailored training plan with annual review and update; to build the methodological and empirical knowledge you need to complete the project.

You will attend a 5-day Qualitative Research Methods course at the university which covers the theory of qualitative research, approaches to qualitative analysis and the interpretation of qualitative data. Training in analysis of quantitative data obtained from Q-methodology will be provided by the supervisory team. Alongside specialist training in techniques such as semi-structed interviewing and survey development, you will develop transferable skills in research ethics and governance, good research practice, patient and public involvement, science communication and impact and engagement. You will also interact with both healthcare professionals and patients and experience working within a multi-disciplinary team.

You can find more information here: 125th Anniversary Scholarships for Black British Researchers – University of Birmingham