Exploring Rheumatoid Arthritis Patients' Needs in Shared Decision Making: A Qualitative User Needs Study

Background: Rheumatoid arthritis (RA) is a chronic inflammatory debilitating joint condition with individualized symptom severity. Access to multiple medication choices allow consideration of patient preferences and fit to their lifestyles. Shared decision making (SDM) is a recent approach in medicine where medical decisions are formed in combination of latest scientific evidence, patient’s lived experiences, and physician’s clinical expertise. SDM may be a fitting approach for RA due to the extended time allowed for developing patient-physician rapport, room to discuss patient preferences, and decisions to be revisited. Objective: To explore user needs and challenges to support RA patients in shared decision-making processes as it relates to chronic disease management, self-monitoring, and medication choices. Methods: Semi-structured interviews were conducted with RA patients (n=13) recruited from the Canadian Arthritis Patient Alliance. Thematic analysis was performed using NVivo software. Data was coded inductively and iterated on until no new themes emerged. Results: Three main themes emerged from interview data. (1) Gaps in Psychosocial Care: Relevant to short and long-term medication side effects, sexual health, mental health, and family planning were sensitive and stigmatized topics which were often dismissed at the rheumatologist’s visits. (2) Patient Agency: RA patients were exercising patient agency needed for SDM through proactively seeking knowledge about their disease; making personal judgements on medications based on their symptoms; and relying on their social support networks for tough decisions. (3) Adaptations: Over years of dealing with RA, patients reported adaptations, such as flexibility to psychological adaptations, improved general health through modifiable lifestyle factors, and several minor ergonomic changes for improved daily comfort. Conclusion: Designs in health technology to support RA patients with SDM may benefit by acknowledging the dynamic nature of RA as a chronic disease. Further socio-technologic developments can minimize the burden of living with RA

Repeat prescribing of medications: a system-centred risk management model for primary care organisations

Rationale, aims and objectives: Reducing preventable harm from repeat medication prescriptions is a patient safety priority worldwide. In the United Kingdom, repeat prescriptions items issued has doubled in the last 20 years from 5.8 to 13.3 items per patient per annum. This has significant resource implications and consequences for avoidable patient harms. Consequently, we aimed to test a risk management model to identify, measure, and reduce repeat prescribing system risks in primary care. Methods: All 48 general medical practices in National Health Service (NHS) Lambeth Clinical Commissioning Group (an inner city area of south London in England) were recruited. Multiple interventions were implemented, including educational workshops, a web-based risk monitoring system, and external reviews of repeat prescribing system risks by clinicians. Data were collected via documentation reviews and interviews and subject to basic thematic and descriptive statistical analyses. Results: Across the 48 participating general practices, 62 unique repeat prescribing risks were identified on 505 occasions (eg, practices frequently experiencing difficulty interpreting medication changes on hospital discharge summaries), equating to a mean of 8.1 risks per practice (range: 1-33; SD = 7.13). Seven hundred sixty-seven system improvement actions were recommended across 96 categories (eg, alerting hospitals to illegible writing and delays with discharge summaries) with a mean of 15.6 actions per practice (range: 0-34; SD = 8.0). Conclusions: The risk management model tested uncovered important safety concerns and facilitated the development and communication of related improvement recommendations. System-wide information on hazardous repeat prescribing and how this could be mitigated is very limited. The approach reported may have potential to close this gap and improve the reliability of general practice systems and patient safety, which should be of high interest to primary care organisations internationally

Identifying and addressing patient-centred outcomes to improve medication adherence in rheumatology

Many rheumatic conditions require the long-term use of medications, yet suboptimal adherence remains a major challenge. There are increasing efforts to develop and test strategies to improve medication adherence in rheumatology, however few interventions have been shown to be effective. This may be due to a number of problems. It remains uncertain whether existing interventions to improve adherence address the priorities and concerns of patients with rheumatic conditions. In addition, the outcomes reported in trials targeting adherence are heterogeneous, limiting the ability to assess the comparative effect of interventions. Core domain sets are defined as the minimum set of outcome domains that should be measured and reported in specific clinical trials. They reduce inconsistent outcome reporting and reporting bias. Furthermore, they can help ensure the use of outcomes that are important to patients and decision-makers. Through the Outcome Measures in Rheumatology (OMERACT) initiative, core domain sets have been established for multiple rheumatic conditions. This thesis aims to understand medication adherence from the perspective of patients with diverse rheumatic conditions and their caregivers; and to identify issues in outcome reporting in interventional studies targeting medication adherence in rheumatic conditions as part of OMERACT. Chapter 2 presents a review of qualitative research principles and methodology in the context of rheumatic conditions. An overview of qualitative methods is presented and the key approaches to guide the appraisal of qualitative research are discussed. The next part of this thesis (Chapters 3 to 5) consists of systematic reviews which provide a comprehensive evaluation of outcomes reported in interventional studies in medication adherence in rheumatic conditions and qualitative studies that describe the patients' experience in a variety of rheumatic conditions. The second part of this thesis (Chapter 6) further explores the perspective and priorities of patients with rheumatic conditions and their caregivers using focus groups with nominal group technique. This study addresses patient and caregiver barriers and facilitators to medication adherence. Chapters 7 is a report from a workshop convened at the 2018 OMERACT conference to discuss the challenges with developing a core set of outcomes for interventional studies targeting medication adherence. Despite the challenges of producing a core domain set for this topic, the meeting clarified an approach of how this could be achieved using OMERACT methodology. The thesis provides a greater understanding of outcomes and factors that are important to patients and their caregivers, and the mismatch with currently reported outcomes. It was demonstrated that consistent reporting of outcomes is needed to better inform which interventions are effective. The qualitative studies on patient and caregiver perspectives highlight the need for empathetic care that promotes trust in the doctor. Overall a patient-centred approach to supporting medication adherence is needed in both clinical care and research. This approach will help address the complexity and challenges patients with rheumatic conditions face with their medication-taking and improve outcomes that matter to them

An exploration of the clinical practice of Rheumatology specialist nurses undertaking consultations with patients starting Methotrexate

Background Rheumatology nursing roles have evolved over the last 25 years to include educating patients prior to commencing drugs such as Methotrexate in consultations. The expansion of their role has not been supplemented by specific training in order to prepare them for this undertaking. Thus, this study was developed to explore how Rheumatology Specialist nurses gained knowledge about consulting with patients on Methotrexate, how they delivered information to patients, and to identify elements of their consultation for further development. Methods This was a mixed-methods practice based study undertaken in three phases. Training, confidence and knowledge were explored with a questionnaire, which constituted Phase I. Phase II explored the lived experiences of the nurses with semi-structured interviews. Phase III explored the interaction between the nurses and patients during a consultation which was video-recorded and analysed using qualitative and quantitative approaches, with the interaction scored against items in the Calgary Cambridge consultation model. Findings The results of the survey (n=97) and the semi-structured interviews findings (n=6) revealed significant variability in training received by Rheumatology Specialist nurses. Confidence took three to 12 months to develop and was related to experience, knowledge and training, with nurses expressing a clear desire for more training. Written information was used by all participants during consultations, usually in the form of the Methotrexate information booklet, which had some benefits, including allowing the nurses to structure their consultations, ensuring that all of the information in the booklet was given to patients. However, it also had the disadvantage of becoming the nurses’ agenda which dominated the consultation, leading to overloading the patients with information and restricting discussion and questions from the patients. Analysis of consultation videos (n=10) supported these findings, demonstrating that whilst all of the important information from the booklet was given, there was a lack of involvement during the consultation of the patient agenda such as ideas, concerns and expectations, with little checking by the nurses to ensure the patients understood the information given. The effect of limited time was apparent. Cues from patients were often ignored or missed which may have been as a result of perceived time pressures or lack of confidence in dealing with questions. The comparison of the nurses’ consultations with the Calgary Cambridge consultation model showed variations in the nurses’ scores. It also raised new observations such as in those consultations which scored higher, the nurses used more illustrative and fewer batonic gestures, whilst the patient did the opposite. Conclusions Whilst Rheumatology Specialist nurses are clearly doing many things well, the education of patients starting drugs such as Methotrexate could be improved by training aimed at improving consultation techniques with the adoption of a modified Calgary Cambridge model consultation technique. Such an approach would benefit from further research to identify whether it results in improving patients’ involvement in the consultation process. The findings from this thesis have led directly to the development of “Top Tips”, published online by Versus Arthritis, to guide nurses during their consultations when giving information to patients about Methotrexate. Further work will include writing a handbook that aims to give nurses more knowledge about how to conduct a consultation with patients based on the Calgary Cambridge consultation model

Patterns of comorbidity and their impact on axial spondyloarthritis

Background and Aim: Axial spondyloarthritis (axSpA) patients have higher risk of co-existing medical conditions – comorbidities – than the general population, yet management guidelines are largely based on randomised controlled trials that often exclude those with comorbidities. The overarching aim of this thesis was to describe the patterns of comorbidity and their impact on treatment using three real-world axSpA populations. Methods: Three datasets were used: one from a specialist axSpA service (Aintree cohort) and one from tertiary hospitals in Boston, Massachusetts (Boston cohort), and a longitudinal national axSpA register – the British Society for Rheumatology Biologics Register for axSpA (BSRBR-AS). Chapter 4 compared the prevalence of 39 comorbidities between two axSpA phenotypes – non-radiographic and radiographic axSpA – using the Boston and Aintree cohorts. Cluster analysis was then used to examine how comorbidities co-exist in the Aintree cohort, and how clusters relate to axSpA severity using multivariable regression models. Chapter 5 applied multivariable regression models to baseline BSRBR-AS data to examine whether axSpA disease assessment using various indices were differentially influenced by 14 comorbidities. Chapter 6 applied conditional models to longitudinal data from the BSRBR-AS to investigate the association between comorbidity and treatment response. Chapter 7 focused on the potential causal association of baseline mental health symptoms on treatment outcomes using marginal models. Results: The Boston cohort included 775 patients (mean age 53 (SD 17) years, 74% male), Aintree 421 patients (46 (SD 14) years, 69% male), and BSRBR-AS 2042 patients (49 (SD 15) years, 67% male). Around half of each cohort had at least one comorbidity. Comorbidity patterns and counts were similar between radiographic and non-radiographic axSpA in Boston (mean 1.5 vs. 1.3, respectively) and Aintree cohorts (1.4 vs. 1.3). Mental health conditions tended to co-exist and were associated with greater axSpA disease severity. In the baseline BSRBR-AS data, each additional comorbidity was associated with higher BASDAI (Bath AS Disease Activity Index) by 0.40 units (95% CI 0.27, 0.52) and ASDAS (AS Disease Activity Score) by 0.09 units (95% CI 0.03, 0.15). Among 994 BSRBR-AS patients starting TNF inhibitors (TNFi), those with multiple comorbidities had similar absolute improvement in disease activity but reduced improvement in function (by 1.0 unit in BASFI at 6 months) and health-related quality of life (2.3 ASQoL units). Compared to those with less than mild depressive symptoms, patients with moderate-severe symptoms had reduced response at 6 months, by approximately 2 BASDAI units and 0.9 ASDAS units. Patients with moderate-severe anxiety symptoms had increased treatment discontinuation (HR 1.59; 95% CI 1.12 to 2.26) than those with less than mild anxiety. Conclusions: Comorbidities are highly prevalent in axSpA, in particular cardiovascular and mental health disorders. Comorbidities are associated with axSpA disease activity at baseline and adverse treatment outcomes, particularly depression and anxiety. These results have important clinical and policy implications for the current approach to disease assessment. Clinicians should record and refer comorbidities for optimal management, particularly mental health disorders

Foot involvement among people with psoriatic arthritis

Despite recognition that hallmark features of psoriatic arthritis (PsA) are predominant and persistent in the foot and ankle, limited foot-specific research exists and there are no validated outcome measures to comprehensively assess the impact of foot involvement from the perspective of people living with PsA. Previous research has shown merit in linking to the International Classification of Functioning, Disability and Health (ICF) in order to better define and understand the impact of global disease associated with PsA, but little is known about the impact of localised disease in the foot. Current understanding of foot involvement in PsA is based on a limited number of studies with relatively small sample sizes of predominantly discrete sub-populations of PsA, which fail to adequately incorporate the perspective of those living with PsA. Therefore, foot involvement in PsA remains under-researched and poorly understood with a lack of large-scale data to provide the basis for targeted disease-specific assessments and interventions. This thesis aimed to investigate foot involvement in PsA from the patient perspective, and to develop a national Australasian-based survey in order to comprehensively describe the nature, extent and location of foot problems and their impact on the daily life of people with PsA. Findings highlight the importance of involving those with PsA to generate survey items, which resulted in relevant concepts being included in the survey that were not considered to be important by health professionals. This programme of work provides a comprehensive view of the wide-reaching impact of PsA foot-specific involvement from the patient perspective, which will inform the future research priorities on targeted strategies towards improving foot health and the patient experience in PsA