Establishing a clinical ethics support service: lessons from the first 18 months of a new Australian service - a case study.

BACKGROUND: Although the importance of clinical ethics in contemporary clinical environments is established, development of formal clinical ethics services in the Australia health system has, to date, been ad hoc. This study was designed to systematically follow and reflect upon the first 18 months of activity by a newly established service, to examine key barriers and facilitators to establishing a new service in an Australian hospital setting. METHODS: HOW THE STUDY WAS PERFORMED AND STATISTICAL TESTS USED: A qualitative case study approach was utilised. The study gathered and analysed data using observations of service committee meetings, document analysis of agendas and minutes, and semi-structured interviews with committee members to generate semantic themes. By interpreting the thematic findings in reference to national capacity building resources, this study also aimed to provide practice-based reflections for other health agencies. RESULTS: THE MAIN FINDINGS: An overarching theme identified in the data was a strong commitment to supporting clinicians facing difficult patient care decisions and navigating difficult discussions with patients and families. Another key theme was the role of the new clinical ethics support service in providing clinicians with a pathway to raise system-wide issues with the organisation Executive. While there was strong clinical engagement, consumer and community participation remained a challenge, as did unresolved governance issues and a need for clearer policy relationship between the service and the organisation. Considering these themes in relation to the national capacity building resources, the study identifies three areas likely to require ongoing development and negotiation. These are: the role of the clinical ethics support service as a link between the workforce and the Executive; the incorporation of consumers and patients; and ethical reasoning. To improve the effectiveness of the service, it is necessary to increase clarity on the service's role at the governance and policy level, as well as develop strategies for engaging consumers, patients and families. Finally, the capacity of the service to reflect on complex cases may be enhanced through explicit discussions of various different ethical frameworks and ways of deliberating.

Measuring the impact of steroid therapy on health-related quality of life in patients with rheumatic diseases: international development of a glucocorticoid treatment-specific patient-reported outcome measure.

OBJECTIVES: Glucocorticoids (GCs) ('steroids') are used to treat rheumatic diseases but adverse effects are common. We aimed to explore the impact of GC therapy on health-related quality of life (HRQoL), to inform the development of a treatment-specific patient-reported outcome measure (PROM) for use in clinical trials and practice. METHODS: Semi-structured qualitative interviews were conducted with patients from the UK, USA and Australia, treated for a rheumatic condition with GCs in the last 2 years. Purposive sampling was used to select participants with a range of demographic and disease features. An initial conceptual framework informed interview prompts and cues. Interviews elicited GC-related physical and psychological symptoms and salient aspects of HRQoL in relation to GC therapy. Interview data were analysed inductively to develop initial individual themes and domains. Candidate questionnaire items were developed and refined. RESULTS: Sixty semi-structured qualitative interviews were conducted (UK n = 34, USA n = 10, Australia n = 16). The mean age was 58 years; 39/60 were female; and 18 rheumatic diseases were represented. Some 126 individual themes were identified and organized into six domains: physical symptoms; psychological symptoms; psychological impact of steroids; impact of steroids on participation; impact of steroids on relationships; and benefits of steroids. Candidate questionnaire items were tested and refined by piloting with patient research partners, iterative rounds of cognitive interviews and linguistic translatability assessment, informing a draft questionnaire. CONCLUSION: We describe an international qualitative study to develop candidate items for a treatment-specific PROM for patients with rheumatic diseases. A future survey will enable the validation of a final version of the PROM.

Barriers and facilitators for the implementation of nurse-delivered chronic disease management within general practice: a mixed methods systematic review protocol.

OBJECTIVE: The objective of this review is to identify the barriers and facilitators for the implementation of nurse-delivered models of care for chronic diseases to inform the development and evaluation of nurse-delivered models of care for chronic sleep disorders. INTRODUCTION: Increasing prevalence of sleep disorders and subsequent demand for specialist-led sleep services has prompted investigation into the management of uncomplicated sleep disorders by general practitioners. Models of sleep health care with enhanced roles for general practice nurses have been investigated within the context of randomized controlled trials; however, it is unclear how best to implement these models into clinical practice. With limited research exploring the implementation of nurse-delivered models of sleep health care within general practice, this review will examine the barriers and facilitators for the implementation of nurse-delivered models of care for chronic disease. This will inform the integration of new nurse-delivered models of care for chronic sleep disorders into routine general practice. INCLUSION CRITERIA: Studies that report barriers and facilitators for the implementation of nurse-delivered models of care for chronic diseases for adults into a general practice setting will be included. METHODS: Six databases will be searched: MEDLINE, CINAHL, Embase, Scopus, Cochrane Library, and Emcare. The search will be limited to qualitative, quantitative, and mixed methods studies. Studies will be included if they contain data that report on barriers and facilitators for implementation of nurse-delivered models of care for chronic diseases. This review will be conducted in accordance with the JBI approach to mixed methods convergent integrated systematic reviews. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42021273346.

Smoking cessation care during pregnancy: A qualitative exploration of midwives' challenging role.

PROBLEM: The majority of South Australian pregnant women who smoke do not quit during pregnancy. Additionally, the prevalence of smoking is higher among pregnant women living in socially disadvantaged areas. BACKGROUND: Understanding challenges in midwives' provision of smoking cessation care can elucidate opportunities to facilitate women's smoking cessation. AIM: We aimed to understand midwives' perspectives on current practices, perceived barriers and facilitators to delivery of smoking cessation care, and potential improvements to models of smoking cessation care. METHODS: An exploratory qualitative research methodology and thematic analysis was used to understand the perspectives of midwives in five focus groups. FINDINGS: Four themes were generated from the data on how midwives perceived their ability to provide smoking cessation care: Tensions between providing smoking cessation care and maternal care; Organisational barriers in the delivery of smoking cessation care; Scepticism and doubt in the provision of smoking cessation care; and Opportunities to enable midwives' ability to provide smoking cessation care. DISCUSSION: A combination of interpersonal, organisational and individual barriers impeded on midwives' capacities to approach, follow-up and prioritise smoking cessation care. Working with women living with disadvantage and high rates of smoking, the midwife's role was challenging as it balanced delivering smoking cessation care without jeopardising antenatal care. CONCLUSION: Providing midwives with resources and skills may alleviate the sense of futility that surrounds smoking cessation care. Provision of routine training and education could also improve understandings of the current practice guidelines.

Trends and patterns of benzodiazepines and Z-drugs prescriptions in Australian general practice: A national study (2011-2018).

INTRODUCTION: We aimed to explore trends and sociodemographic patterns in benzodiazepine (BZD) (by half-life) and Z-drugs prescribing in Australian general practice. METHODS: This open cohort study used de-identified electronic health records of 1.4 million patients (50,812,413 consultations) from 402 Australian practices (MedicineInsight 2011-2018). Annual prescribing frequency and changes over time were estimated according to sex, age, socioeconomic position and rurality. RESULTS: Between 2011 and 2018, the prescribing of very short-acting BZD increased from 0.10 to 0.29 per 1000 consultations (average annual change +17.2% [95% CI 9.6; 25.3]), while it declined for short-intermediate (from 38.5 to 26.6 per 1000 consultations; annual change -5.1% [95% CI -5.6; -4.5]), long-acting BZD (from 24.1 to 21.6 per 1000 consultation; annual change -1.5% [95% CI -2.2; -0.8]) and Z-drugs (from 4.6 to 4.0 per 1000 consultations; annual change -1.9% [95% CI -3.0; -0.7]). Short-intermediate-acting BZD prescribing was three times more frequent among women aged 65+ years than younger women, and long-acting BZD three-to-four times more likely among younger than older men. Z-drugs prescribing was higher among women aged 45-64 years than younger or older females. Short-intermediate- and long-acting BZD were more likely prescribed for patients from more disadvantaged areas, and Z-drugs in more advantaged areas. There were no disparities by rurality. DISCUSSION AND CONCLUSIONS: Although most BZD and Z-drugs prescriptions declined over time, short-intermediate BZD prescriptions remained higher among older women and long-acting BZD more frequent among younger men, especially for those living in more disadvantaged areas. Targeted interventions could reduce the prescribing of BZD and Z-drugs in these groups.

Barriers and facilitators to cervical cancer screening for women from culturally and linguistically diverse backgrounds; a qualitative study of GPs.

OBJECTIVE: To explore general practitioners' (GPs) perspectives on the barriers and facilitators to cervical cancer screening (CCS) for women from culturally and linguistically diverse (CALD) backgrounds. DESIGN: Qualitative descriptive study involving semi-structured interviews, with interview guide informed by the Theoretical Domains Framework. SETTING: Adelaide, South Australia. PARTICIPANTS: Twelve GPs with experience in providing CCS to women from CALD backgrounds participated. RESULTS: Four main themes emerged: 'importance of clinician-patient relationship', 'patients' cultural understanding regarding health care and CCS', 'communication and language' and 'health system related'. Each theme had several subthemes. GPs' professional relationship with their patients and repeated advice from other clinicians, together with the provision of opportunistic CCS, were described as facilitators, and encompassed the theme of 'importance of clinician-patient relationship'. This theme also raised the possibility of self-collection human papilloma virus tests. Lack of awareness and knowledge, lower priority for cancer screening and patients' individual circumstances contributed to the theme of 'patients' cultural understanding regarding health care and CCS', and often acted as barriers to CCS. 'Communication and language' consisted of language difficulties, interpreter use and use of appropriate resources. Language difficulties were a barrier to the provision of CCS, and GPs used interpreters and written handouts to help overcome this. The theme of 'health system related' involved the increased time needed for CCS consults for CALD women, access to appointments, funding, health promotion and effective use of practice management software. CONCLUSIONS: This study highlights that multiple, inter-related barriers and facilitators influence CALD women's engagement with CCS, and that GPs needed to manage all of these factors in order to encourage CCS participation. More efforts are needed to address the barriers to ensure that GPs have access to appropriate resources, and CALD patients have access to GPs they trust.

Patient Perspectives of Disease Activity, Medications and Substance Use in People with Fibromyalgia.

Objective: To explore patient perspectives on disease activity and experiences, as well as medication use of a group of fibromyalgia patients attending a single-centre rheumatology public hospital outpatient setting. Methods: Patients seen in fibromyalgia clinic within a rheumatology unit from July 2016 to December 2019 were posted a voluntary survey with questionnaires pertaining to patient-reported measures of disease impact (FIQR), fatigue (MFI-20) and psychological distress (K10). A free-text section allowed description of disease impact. Patients were also asked to record medication use and comorbidities, which were then compared to the electronic medical records (EMR) of the overall clinic cohort. Results: Forty-five patients responded to the survey (43/45, 95.6% female; mean age 56.5 years). Respondents had generally severe fibromyalgia (mean FIQR 67.1/100, range 23.7-92.8), moderate psychological distress (mean K10 27.5/50, range 14-45) and high fatigue (mean MFI 74.9/100, range 40-96). Free-text responses generated themes of pervasive disease impact and the necessity of adjusting life around unpredictable symptoms. Almost half reported opioid (21/45, 46.7%) and gabapentinoid (19/45, 42.2%) use. 16/41 (39%) use cannabinoids for their fibromyalgia symptoms. Comparing medication use with survey non-respondents (n=85), there was generally similar representation except for significantly greater NSAID use among survey respondents (33/45, 73.3% vs 22/85, 25.9%, p<0.001). Conclusion: For patients living with fibromyalgia in this study, there were high levels of disease activity, psychological distress and fatigue. Patients described the need to accept disease-imposed limitations and life adjustments. Almost half reported opioid use, despite evidence suggesting poor efficacy and possible harm.

Isolation, marginalisation and disempowerment - understanding how interactions with health providers can influence smoking cessation in pregnancy.

BACKGROUND: Maternal smoking during pregnancy can lead to serious adverse health outcomes for both women and their infants. While smoking in pregnancy has declined over time, it remains consistently higher in women with lower socioeconomic circumstances. Furthermore, fewer women in this group will successfully quit during pregnancy. AIM: This study explores the barriers to smoking cessation experienced by socially disadvantaged pregnant women and investigates how interactions with health providers can influence their smoking cessation journey. METHODS: Women (either pregnant or birthed in the previous 10 years, who smoked or quit smoking in pregnancy) were recruited from a metropolitan public hospital antenatal clinic in South Australia and community organisations in surrounding suburbs. Seventeen women participated in qualitative semi-structured small focus groups or interviews. The focus groups and interviews were recorded, transcribed and thematically analysed. FINDINGS: Four interconnected themes were identified: 1) smoking embedded in women's challenging lives and pregnancies, 2) cyclic isolation and marginalisation, 3) feeling disempowered, and 4) autonomy and self-determination. Themes 3 and 4 are characterised as being two sides of a single coin in that they coexist simultaneously and are inseparable. A key finding is a strong unanimous desire for smoking cessation in pregnancy but women felt they did not have the necessary support from health providers or confidence and self-efficacy to be successful. CONCLUSION: Women would like improvements to antenatal care that increase health practitioners' understanding of the social and contextual healthcare barriers faced by women who smoke in pregnancy. They seek improved interventions from health providers to make informed choices about smoking cessation and would like women-centred care. Women feel that with greater support, more options for cessation strategies and consistency and encouragement from health providers they could be more successful at antenatal smoking cessation. If such changes were made, then South Australian practice could align more with best practice international guidelines for addressing smoking cessation in pregnancy, and potentially improve outcomes for women and their children.

Long-term benzodiazepines and z-drug prescribing in Australian general practice between 2011 and 2018: A national study.

Despite reducing benzodiazepine prescribing, benzodiazepine-involving deaths have substantially increased in Australia. This study aimed to explore patterns in long-term prescribing of medications (benzodiazepine and z-drugs [BZD]) used for sleep-issues/insomnia in Australia to better understand these changes. Open cohort study using de-identified electronic health records of 1 414 593 adult patients regularly attending 404 Australian general practices from 2011 to 2018 (MedicineInsight). We used logistic regression adjusted for patient and practice characteristics to; (1) estimate long-term BZD prescribing prevalence (≥3 prescriptions in 6 months) and the associated sociodemographic factors, and (2) Poisson regression to compute annual changes in prescribing rates. Long-term BZD prescribing changed from 4.4% in 2011 to 5.8% in 2015, remaining relatively stable until 2018 (annual increase +2.5% [95% CI +2.0%;+3.0%]). Long-term BZD prescribing in any year was up to six times more likely in elderly rather than in younger patients and 30%-43% more prevalent in females, or patients living in or attending a practice located in more disadvantaged areas. The increase was more pronounced among males, adults aged 35-49 years, and individuals living in advantaged areas. The median duration among incident cases decreased from 1183 to 322 days between 2011 and 2017, and was up to 197 days longer among elderly females than males. Despite a slight increase and recent stability in long-term BZD prescribing, the higher rates and durations among elderly patients, women, or those living in more disadvantaged areas are concerning and highlights the need for interventions that reduce the potential harms of long-term BZD use in vulnerable groups.

Patient Perceptions of Physical Activity After a Diagnosis of Giant Cell Arteritis: Analysis of Multinational Qualitative Data.

OBJECTIVE: To explore patient perceptions of physical activity in giant cell arteritis (GCA). METHODS: This was a multinational qualitative study, analyzing interview data collected from participants from the UK (n = 25) and Australia (n = 11) with a definitive diagnosis of GCA from imaging or biopsy. Interview transcripts were analyzed using thematic analysis to identify themes related to physical activity. This was secondary analysis of data collected to explore health-related quality of life in people with GCA. RESULTS: A total of 108 individual codes pertaining to physical activity were identified. These were grouped into 2 overarching themes: barriers to and facilitators of physical activity, each with 4 subthemes. Barriers were categorized into physical symptoms (including visual loss, fatigue, weakness, pain, and stiffness), perceptions of personal capability (including poor stamina, confidence, and mobility), negative perceptions of physical activity, and negative consequences. Facilitators of physical activity were categorized into external facilitators (including motivation from health care professionals and support groups), access to appropriate facilities, personal strategies (including pacing and goal-setting), and personal facilitators (including internal motivation to improve symptoms, and positive reinforcement). CONCLUSION: A range of barriers and facilitators to physical activity were identified in relation to GCA. Future work could include development of an intervention to support physical activity in patients with GCA; ideally this intervention should be underpinned by an appropriate behavioral change framework and codesigned with patients.

Assessment, referral and management of obstructive sleep apnea by Australian general practitioners: a qualitative analysis.

BACKGROUND: The high and increasing demand for obstructive sleep apnea (OSA) care has exceeded the capacity of specialist sleep services prompting consideration of whether general practitioners could have an enhanced role in service delivery. However, little is known about the current involvement, experiences and attitudes of Australian general practitioners towards OSA. The purpose of this study was to provide an in-depth analysis of Australian general practitioners' experiences and opinions regarding their care of patients with OSA to inform the design and implementation of new general practice models of care. METHODS: Purposive sampling was used to recruit participants with maximum variation in age, experience and location. Semi-structured interviews were conducted and were analysed using Thematic Analysis. RESULTS: Three major themes were identified: (1) General practitioners are important in recognising symptoms of OSA and facilitating a diagnosis by others; (2) Inequities in access to the assessment and management of OSA; and (3) General practitioners currently have a limited role in the management of OSA. CONCLUSIONS: When consulting with patients with symptoms of OSA, general practitioners see their primary responsibility as providing a referral for diagnosis by others. General practitioners working with patients in areas of greater need, such as rural/remote areas and those of socio-economic disadvantage, demonstrated interest in being more involved in OSA management. Inequities in access to assessment and management are potential drivers for change in future models of care for OSA in general practice.

Patient satisfaction and acceptability with telehealth at specialist medical outpatient clinics during the COVID-19 pandemic in Australia.

BACKGROUND: Outpatient clinics were shifted rapidly to telehealth in Australia during the Coronavirus disease 19 (COVID-19) pandemic, drastically altering patient care and experience. AIMS: To investigate patient satisfaction and acceptability of telehealth consultations during the COVID-19 pandemic. METHODS: Prospective observation study conducted in two hospital rheumatology outpatient departments (OPD) undertaking telehealth consultations during COVID-19. A modified version of a validated telehealth evaluation survey was posted to all patients attending the telehealth OPD rheumatology clinics, including balanced 5-point Likert scales and free-text responses. Cluster analysis was applied to the Likert-scale questions, alongside thematic analysis of free-text responses. RESULTS: There were 128 respondents (29% response rate), of which 69.5% were women and the majority (87.5%) was aged 50 years or older. All telehealth consultations were conducted by telephone. Nearly one-fifth of patients indicated consistent dissatisfaction with telehealth across the range of questions. These patients were older, reported lower educational qualifications and lower health literacy scores and lacked access to the Internet. While many patients found this mode of consultation to be convenient, patients expressed concerns regarding absence of physical examination. A recurrent theme was a desire for a mixed-model clinic in the future, with flexibility of having both telehealth and face-to-face consultations. CONCLUSIONS: This study offers unique insights into patients' experiences with telehealth, which until the current global pandemic, has been an uncommon mode of consultation delivery in urban areas. This study suggests when defining the place of telehealth in future healthcare delivery, patient perspective and careful patient selection will be key. Disease progression, language and cognitive ability, health literacy, technology access and patient and clinician preference are important considerations when deciding how effectively to embed and integrate telehealth into consultations.

Primary care management of chronic insomnia: a qualitative analysis of the attitudes and experiences of Australian general practitioners.

BACKGROUND: Chronic insomnia is a highly prevalent disorder, with ten to thirty percent of Australian adults reporting chronic difficulties falling asleep and/or staying asleep such that it causes significant daytime impairment. Current Australian general practice guidelines recommend cognitive behavioural therapy for insomnia (CBTi) as first line treatment for insomnia, however research suggests that most general practice consultations for insomnia result in a prescription for hypnotic or sedative medicines. Although the first point of contact for patients experiencing symptoms of insomnia is often general practice, little is known about the current role, experiences and capacity of Australian general practitioners to manage insomnia. This study aimed to address that gap by exploring the attitudes and opinions of general practitioners regarding insomnia management, to inform the development and implementation of new models of best practice insomnia care within general practice. METHODS: A descriptive, pragmatic qualitative study. Purposive sampling was used to recruit practising Australian general practitioners, varying in age, years of experience and geographic location. Semi-structured interviews were conducted, and data analysed using thematic analysis.  RESULTS: Twenty-eight general practitioners participated in the study. Three major themes were identified: 1) Responsibility for insomnia care; 2) Complexities in managing insomnia; and 3) Navigating treatment pathways. Whilst general practitioners readily accepted responsibility for the management of insomnia, provision of care was often demanding and difficult within the funding and time constraints of general practice. Patients presenting with comorbid mental health conditions and insomnia, and decision-making regarding long-term use of benzodiazepines presented challenges for general practitioners. Whilst general practitioners confidently provided sleep hygiene education to patients, their knowledge and experience of CBTi, and access and understanding of specialised referral pathways for insomnia was limited.  CONCLUSIONS: General practitioners report that whilst assessing and managing insomnia can be demanding, it is an integral part of general practice. Insomnia presents complexities for general practitioners. Greater clarity about funding options, targeted education about effective insomnia treatments, and referral pathways to specialist services, such as benzodiazepine withdrawal support and psychologists, would benefit insomnia management within general practice.

Implementation of a digital cognitive behavioral therapy for insomnia pathway in primary care.

Background Insomnia is a prevalent and debilitating disorder commonly managed by family physicians. Insomnia guidelines recommend cognitive behavioral therapy for insomnia (CBTi) as the 'first-line' treatment. However, family physicians report limited time, knowledge, access, support, and referral options to manage patients with CBTi. Consequently, many patients with insomnia are prescribed potentially harmful and addictive sedative-hypnotic medicines (e.g. benzodiazepines). Family physicians require an insomnia management pathway that is specifically tailored to the guideline-recommendations, time demands, and capacity of family practice. Methods This mixed-methods implementation trial will test the feasibility, acceptability and effectiveness of a comprehensive digital insomnia management pathway in family practice. This novel pathway includes digital recruitment of family physicians, automatic identification of patients whose electronic medical records contain recent sedative-hypnotic prescriptions using a software management pathway and real-time notifications prompting physicians to refer patients to a well-established digital CBTi program. At least 10 family physicians and 375 patients with insomnia will be recruited. Physicians will be provided with an eBook to guide gradual sedative-hypnotic withdrawal. Feasibility and acceptability will be assessed from the perspective of patients and physicians. Effectiveness will be determined by co-primary outcomes: cessation of sedative-hypnotic use, and improvement in self-reported insomnia symptoms from baseline to 12-month follow-up. Analysis of trends in costs, cost-effectiveness and cost-utility analyses will be conducted from a societal perspective. Results and discussion This implementation trial will pave the way for future scaling-up of this insomnia management pathway to improve access to CBTi and reduce reliance on sedative-hypnotic medicines in family practice. Trial Registration: This trial was prospectively registered on the Australian and New Zealand Clinical Trials Registry (ANZCTR) (ACTRN12619001539123).

Patient perceptions of health-related quality of life in giant cell arteritis: international development of a disease-specific patient-reported outcome measure.

OBJECTIVES: GCA is a large vessel vasculitis (LVV) presenting with headache, jaw claudication, musculoskeletal and visual involvement. Current treatment is glucocorticoids and anti-IL-6 tocilizumab in refractory disease. The objective of this study was to explore the impact of GCA and its treatment on people's health-related quality of life (HRQoL), to inform the development of a disease-specific patient-reported outcome measure (PROM) for use in clinical trials and practice. METHODS: Participants from the UK and Australia, with biopsy- or imaging-confirmed GCA, were interviewed to identify salient aspects of HRQoL in relation to GCA and its treatment. Purposive sampling included a range of demographic and disease features (cranial, LVV-GCA and visual involvement). Inductive analysis identified individual themes of importance, then domains. Candidate questionnaire items were developed from the individual themes, refined by piloting, cognitive interviews and a linguistic translatability assessment. RESULTS: Thirty-six interviews were conducted to saturation with participants with GCA from the UK (25) and Australia (11). Mean age was 74 years, 23 (63.9%) were female, 13 (36.1%) had visual loss and 5 (13.9%) had LVV-GCA. Thirty-nine individual themes within five domains were identified: physical symptoms; activity of daily living and function; participation; psychological impact; and impact on sense of self and perception of health. Sixty-nine candidate items were developed from individual themes; piloting and refinement resulted in a 40-item draft questionnaire. CONCLUSION: This international qualitative study underpins the development of candidate items for a disease-specific PROM for GCA. The draft questionnaire is now ready for psychometric testing.

Perspectives of Glucocorticoid Use in Patients with Rheumatoid Arthritis.

OBJECTIVE: Prednisolone is an effective oral glucocorticoid for managing symptoms of rheumatoid arthritis (RA) but has predictable and common adverse effects. We explored patient perspectives of prednisolone use in RA. METHODS: Patients with RA registered with the Australian Rheumatology Association Database (ARAD) who had completed an ARAD questionnaire in the preceding 12 months were invited to participate in an online survey. Responses were linked to already collected respondent demographics, medication use, and patient-reported outcome measures. The Beliefs about Medicine Questionnaire (BMQ) measured patient beliefs on medication necessity and concerns. Free-text responses outlining reasons for stopping or declining prednisolone underwent thematic analysis using NVivo 12. RESULTS: The survey response rate was 79.6% (804/1010), including 251 (31.2%) reporting current prednisolone use and 432 (53.7%) reporting previous use. Compared with previous users, current users were older (P = 0.0002) and had worse self-reported pain, disease activity, health-related quality of life, and function (all P < 0.001). Current users had higher BMQ scores for prednisolone-specific necessity (3.6 versus 1.7; P <0.001) and concerns (2.7 versus 2.3; P <0.001). In previous prednisolone users (n = 432), the most frequent themes identified in free-text responses for cessation were adequate disease control (30.3%), adverse effects (25.2%), and predetermined short courses (21.3%). Of respondents citing adverse effects for cessation (n = 131), weight gain (27.5%), osteoporosis (14.7%), and neuropsychiatric issues (13.8%) were most frequent. CONCLUSIONS: In our cohort, patients with RA taking prednisolone believed it was necessary yet remained concerned about its use. Adequate disease control and adverse effects were important considerations for patients using prednisolone.

Multimorbidity, health-related quality of life and health service use among individuals with mental health problems: Urban-rural differences in South Australia.

OBJECTIVE: To investigate urban-rural differences in the relationship between the coexistence of multiple physical health conditions, health-related quality of life and health service use among individuals with mental health problems. DESIGN: Cross-sectional. SETTING: Population-based. PARTICIPANTS: Random sample of 2977 South Australians aged 15+ years. Analyses restricted to 535 individuals self-reporting a "current" mental health problem (anxiety, depression, another mental condition). EXPOSURE: Number of physical health conditions (none, 1-2, 3+ conditions) based on a list of 16 self-reported chronic diseases. MAIN OUTCOME MEASURES: Physical and mental health-related quality of life, frequently visited a GP (3+ times), visited a mental health specialist, visited an emergency department, was hospitalised in the last 3 months. RESULTS: The mean age of the participants was 57.3 ± 13.9 years (51.9% females) with 10.6% of them living in inner regional and 14.9% in outer/remote locations. Mental health problems had similar prevalence in major cities (15.4%; 95% confidence intervals [CI]: 13.5-17.4), inner regional (19.3%; 95% CI: 14.8-24.7) and outer/remote areas (16.8%; 95% CI: 14.4-17.7). The remoteness of residence did not affect the relationship between the number of physical health conditions with health-related quality of life or visits to the emergency department/hospitalisations. Individuals without a physical health condition living in major cities were five times more likely to have frequently visited a GP than their counterparts in outer/remote South Australia (35% and 7%, respectively), but these differences were less marked among those with multiple co-morbidities. CONCLUSION: The coexistence of multiple physical health conditions among patients with a mental health problem is associated with less urban-rural disparities in terms of visiting a GP.

Supporting surgeons in patient-centred complex decision-making: a qualitative analysis of the impact of a perioperative physician clinic.

OBJECTIVE: Patients with comorbidities can be referred to a physician-led high-risk clinic for medical optimisation prior to elective surgery at the discretion of the surgical consultant, but the factors that influence this referral are not well understood. The aims of this study were to understand the factors that influence a surgeon's decision to refer a patient to the clinic, and how the clinic impacts on the management of complex patients. DESIGN: Qualitative study using theoretical thematic analysis to analyse transcribed semi-structured interviews. SETTING: Interviews were held in either the surgical consultant's private office or a quiet office/room in the hospital ward. PARTICIPANTS: Seven surgical consultants who were eligible to refer patients to the clinic. RESULTS: When discussing the factors that influence a referral to the clinic, all participants initially described the optimisation of comorbidities and would then discuss with examples the challenges with managing complex patients and communicating the risks involved with having surgery. When discussing the role of the clinic, two related subthemes were dominant and focused on the management of risk in complex patients. The participants valued the involvement of the clinic in the decision-making and communication of risks to the patient. CONCLUSIONS: The integration of the high-risk clinic in this study appears to offer additional value in supporting the decision-making process for the surgical team and patient beyond the clinical outcomes. The factors that influence a surgeon's decision to refer a patient to the clinic appear to be driven by the aim to manage the uncertainty and risk to the patient regarding surgery and it was seen as a strategy for managing difficult and complex cases.

A qualitative study of patient perspectives related to glucocorticoid therapy in polymyalgia rheumatica and giant cell arteritis.

OBJECTIVE: To determine patient experiences of glucocorticoid (GC) therapy in polymyalgia rheumatica (PMR) and giant cell arteritis (GCA). METHODS: Patients with a diagnosis of PMR or GCA were invited to participate in this qualitative study that used focus groups to explore: symptoms onset, process of diagnosis, treatment, adverse effects (AEs), and ongoing condition/s management. Data were transcribed verbatim and a "framework" approach was used for analysis and interpretation. RESULTS: Fourteen patients participated. Weight gain, changes in face and neck shape, and bruising were commonly reported and impacts of these AEs on quality of life were highlighted. Dealing with uncertainties associated with long-term experiences of the condition/s and cycles of GC treatment were raised as were workload demands for patients in managing both the condition and other people's expectations and recommendations related to GC therapy. CONCLUSION: These findings demonstrate that the patient experience of GC use is poorly captured by usual physician monitoring for GC AEs. These findings suggest that development of a patient-reported outcome instrument for inflammatory conditions treated with GCs is required.

Qualitative assessment of medication adherence in patients with rheumatic diseases on biologic therapy.

INTRODUCTION/OBJECTIVES: Despite close management in specialized clinics, medication adherence remains a significant problem for some patients. The study aims to explore factors affecting medication adherence in patients attending a biologics clinic. METHOD: Participants completed surveys including the Compliance Questionnaire Rheumatology (CQR) to quantify adherence rates. Purposive sampling targeting poorly adherent patients was used to select individuals for qualitative evaluation. Semi-structured interviews were performed and continued until saturation was achieved. Interviews were transcribed and coded using NVivo. Principles of grounded theory were used for data analysis. RESULTS: A total of 123 patients completed the survey (72 RA, 33 PsA, 18 AS). Of which, 96 patients completed all CQR items, of these 72% were identified as adequately adherent. A major theme which emerged from patient interviews was that the presence of active symptoms significantly influenced adherence. Patients tended not to prioritize medication taking until they had a recurrence of symptoms. Despite describing biologics as "life-changing", patients expressed concern regarding potential long-term side effects of these medications which affected adherence. Patients identified their relationship with their rheumatologist as pivotal and perceived diet, exercise and stress as critical. Intentional factors were the predominant drivers for non-adherence; patients made a risk-benefit analysis based on their beliefs and chose to not take their medications as prescribed. CONCLUSIONS: Medication adherence to traditional and biological therapies was lower than expected by treating clinicians in this patient group, who are closely supported in a dedicated biologics clinic. Several of the identified themes suggest that shared decision making and enhancing patient education may improve adherence in this group. Key Points • Adherence rates are suboptimal even in supported, educated, English-speaking patients in the biologics era. • Contributing factors were 'intentional' as patients chose to be non-adherent based on their beliefs. • Emergent themes suggest that enhancing patient education could improve adherence.