ORCID Profile
0000-0003-3325-3840
Current Organisations
UNSW Sydney
,
Royal Australasian College of Physicians
,
Liverpool Hospital
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Publisher: The Journal of Rheumatology
Date: 10-2020
Publisher: Springer Science and Business Media LLC
Date: 08-07-2021
DOI: 10.1186/S41927-021-00193-4
Abstract: Research on adherence interventions in rheumatology is limited by methodological issues, particularly heterogeneous outcomes. We aimed to describe researchers’ experiences with conducting interventional studies targeting medication adherence in rheumatology and their perspectives on establishing core outcomes. Semi-structured interviews using audio conference were conducted with researchers who had conducted an adherence study of any design in the past 10 years. Data collection and thematic analysis were performed iteratively, until saturation. We interviewed 13 researchers, most of whom worked in academia and specialized in epidemiology and/or health services research. We identified three themes: 1) improving measurement of adherence (considering all phases of adherence, using appropriate and relevant measures, and establishing clinically meaningful thresholds) 2) challenges in designing and appraising adherence intervention studies (considering the confusion over a plethora of outcomes, difficulties with powering studies to demonstrate meaningful changes, and suboptimal descriptions of adherence interventions in published studies) and 3) advancing outcome assessment in adherence intervention studies (capturing rationale for developing a core domain set as well as recommendations and anticipated challenges by participants). Uniquely gathering perspectives from international adherence researchers, our findings led to researcher-informed recommendations for improving adherence research including specifying the targeted adherence phase in designing interventions and studies and providing a glossary of terms to promote consistency in reporting. We also identified recommendations for developing a core domain set for interventional studies targeting medication adherence including involvement of patients, clinicians, and other stakeholders and methodological and practical considerations to establish rigor and support uptake.
Publisher: BMJ
Date: 08-2023
DOI: 10.1136/BMJOPEN-2023-072050
Abstract: Minimal trauma fractures (MTFs) often occur in older patients with osteoporosis and may be precipitated by falls risk-increasing drugs. One category of falls risk-increasing drugs of concern are those with sedative/anticholinergic properties. Collaborative medication management services such as Australia’s Home Medicine Review (HMR) can reduce patients’ intake of sedative/anticholinergics and improve continuity of care. This paper describes a protocol for an randomised controlled trial to determine the efficacy of an HMR service for patients who have sustained MTF. Eligible participants are as follows: ≥65 years of age, using ≥5 medicines including at least one falls risk-increasing drug, who have sustained an MTF and under treatment in one of eight Osteoporosis Refracture Prevention clinics in Australia. Consenting participants will be randomised to control (standard care) or intervention groups. For the intervention group, medical specialists will refer to a pharmacist for HMR focused on reducing falls risk predominately through making recommendations to reduce falls risk medicines, and adherence to antiosteoporosis medicines. Twelve months from treatment allocation, comparisons between groups will be made. The main outcome measure is participants’ cumulative exposure to sedative and anticholinergics, using the Drug Burden Index. Secondary outcomes include medication adherence, emergency department visits, hospitalisations, falls and mortality. Economic evaluation will compare the intervention strategy with standard care. Approval was obtained via the New South Wales Research Ethics and Governance Information System (approval number: 2021/ETH12003) with site-specific approvals granted through Human Research Ethics Committees for each research site. Study outcomes will be published in peer-reviewed journals. It will provide robust insight into effectiveness of a pharmacist-based intervention on medicine-related falls risk for patients with osteoporosis. We anticipate that this study will take 2 years to fully accrue including follow-up. ACTRN12622000261718.
Publisher: Elsevier BV
Date: 03-2020
DOI: 10.1053/J.AJKD.2019.09.017
Abstract: Outcomes reported in randomized controlled trials in peritoneal dialysis (PD) are erse, are measured inconsistently, and may not be important to patients, families, and clinicians. The Standardized Outcomes in Nephrology-Peritoneal Dialysis (SONG-PD) initiative aims to establish a core outcome set for trials in PD based on the shared priorities of all stakeholders. We convened an international SONG-PD stakeholder consensus workshop in May 2018 in Vancouver, Canada. Nineteen patients/caregivers and 51 health professionals attended. Participants discussed core outcome domains and implementation in trials in PD. Four themes relating to the formation of core outcome domains were identified: life participation as a main goal of PD, impact of fatigue, empowerment for preparation and planning, and separation of contributing factors from core factors. Considerations for implementation were identified: standardizing patient-reported outcomes, requiring a validated and feasible measure, simplicity of binary outcomes, responsiveness to interventions, and using positive terminology. All stakeholders supported inclusion of PD-related infection, cardiovascular disease, mortality, technique survival, and life participation as the core outcome domains for PD.
Publisher: Oxford University Press (OUP)
Date: 15-05-2020
DOI: 10.1093/RHEUMATOLOGY/KEAA168
Abstract: We aimed to describe patients’ attitudes and experiences of transition from paediatric to adult healthcare in rheumatology to inform patient-centred transitional care programmes. We searched MEDLINE, EMBASE, PsycINFO and CINAHL to August 2019 and used thematic synthesis to analyse the findings. From 26 studies involving 451 people with juvenile-onset rheumatic conditions we identified six themes: a sense of belonging (comfort in familiarity, connectedness in shared experiences, reassurance in being with others of a similar age, desire for normality and acceptance) preparedness for sudden changes (confidence through guided introductions to the adult environment, rapport from continuity of care, security in a reliable point of contact, minimizing lifestyle disruptions) abandonment and fear of the unknown (abrupt and forced independence, ill-equipped to hand over medical information, shocked by meeting adults with visible damage and disability, vulnerability in the loss of privacy) anonymous and dismissed in adult care (deprived of human focus, sterile and uninviting environment, disregard of debilitating pain and fatigue) quest for autonomy (controlled and patronized in the paediatric environment, liberated from the authority of others, freedom to communicate openly) and tensions in parental involvement (overshadowed by parental presence, guilt of excluding parents, reluctant withdrawal of parental support). Young people feel dismissed, abandoned, ill-prepared and out of control during transition. However, successful transition can be supported by preparing for changes, creating a sense of belonging and negotiating parental involvement and autonomy. Incorporating patient-identified priorities into transitional services may improve satisfaction and outcomes in young people with juvenile-onset rheumatic conditions.
Publisher: Wiley
Date: 22-08-2022
DOI: 10.1002/ACR.24744
Abstract: We aimed to identify, appraise, synthesize, and contextualize rapidly emerging reports on medication taking (adherence) among patients with rheumatic diseases during the COVID‐19 pandemic. We searched MEDLINE, EMBASE, and CINAHL for peer‐reviewed communications, letters, and articles published during the COVID‐19 pandemic evaluating medication taking among in iduals with rheumatic diseases. We appraised assessment and reporting of medication adherence according to established definitions of 3 distinct problems of medication taking (i.e., noninitiation, poor implementation, and discontinuation) and pooled findings using random‐effects models. We included 31 peer‐reviewed studies in our synthesis from various jurisdictions, of which 25 described medication taking among rheumatology patients and 6 described medication prescribing among rheumatology providers. The pooled prevalence of overall medication nonadherence was 14.8% (95% confidence interval [95% CI] 12.3–17.2) and that of medication discontinuation (i.e., stopping of prescriptions) and poor implementation (i.e., not taking medication at the dose/frequency prescribed) as 9.5% (95% CI 5.1–14.0) and 9.6% (95% CI 6.2–13.0), respectively. Noninitiation (i.e., not starting/not filling new prescriptions) was not addressed. Medication taking among in iduals with rheumatic diseases during the COVID‐19 pandemic varies globally. Unclear reporting and extensive variation in research methods between studies create barriers to research replication, comparison, and generalization to specific patient populations. Future research in this area should use consistent and transparent approaches to defining and measuring medication taking problems to ensure that findings appropriately describe the epidemiology of medication adherence and have the potential to identify modifiable targets for improving patient care.
Publisher: MDPI AG
Date: 03-12-2020
DOI: 10.3390/IJMS21239233
Abstract: The diagnosis and treatment of prostate cancer (PCa) is a major health-care concern worldwide. This cancer can manifest itself in many distinct forms and the transition from clinically indolent PCa to the more invasive aggressive form remains poorly understood. It is now universally accepted that glycan expression patterns change with the cellular modifications that accompany the onset of tumorigenesis. The aim of this study was to investigate if differential glycosylation patterns could distinguish between indolent, significant, and aggressive PCa. Whole serum N-glycan profiling was carried out on 117 prostate cancer patients’ serum using our automated, high-throughput analysis platform for glycan-profiling which utilizes ultra-performance liquid chromatography (UPLC) to obtain high resolution separation of N-linked glycans released from the serum glycoproteins. We observed increases in hybrid, oligomannose, and biantennary digalactosylated monosialylated glycans (M5A1G1S1, M8, and A2G2S1), bisecting glycans (A2B, A2(6)BG1) and monoantennary glycans (A1), and decreases in triantennary trigalactosylated trisialylated glycans with and without core fucose (A3G3S3 and FA3G3S3) with PCa progression from indolent through significant and aggressive disease. These changes give us an insight into the disease pathogenesis and identify potential biomarkers for monitoring the PCa progression, however these need further confirmation studies.
Publisher: Wiley
Date: 05-11-2020
Publisher: Wiley
Date: 18-04-2018
DOI: 10.1002/JBM4.10046
Publisher: Wiley
Date: 21-07-2018
Publisher: Wiley
Date: 24-08-2022
DOI: 10.1002/ACR.24748
Abstract: Decision‐making regarding medications to manage psoriatic arthritis (PsA) is complex because of multiple disease manifestations and comorbidities. Fear of side effects from systemic medications and misalignment in priorities between patients with PsA and rheumatologists makes shared decision‐making challenging. We aimed to describe the perspectives of patients with PsA on shared decision‐making regarding medication taking. Face‐to‐face semistructured interviews were conducted with 25 adult patients with PsA in Australia. Transcripts were thematically analyzed. Five themes were identified: lacking agency in decision‐making (denied choice, knowledge asymmetry, desperation and necessity, restricted by unfair eligibility criteria, automated approach) overwhelmed by potential harms (daunted by aggressive therapy, anticipating lifestyle disruption from side effects, jeopardizing fertility and pregnancy, avoiding relapse) gaining confidence (discernible benefit in function and mental health, sharpening knowledge over time, expertise of family and peers, empowered by information) opting for alternatives (pursuing normality, suspicion of over‐medicalization, seeking comprehensive solutions) and developing trust and fortifying collaboration (assurance through a personable approach, seeking consistency, supported in decisional power, resolution through respectful negotiation). Patients with PsA lack agency in making treatment decisions and are overwhelmed by the potential harms of systemic medication. Improving knowledge and trust with medical teams in a supportive and collaborative environment, and strategies for managing risks and side effects may improve decision‐making about pharmacologic management of PsA.
Publisher: The Journal of Rheumatology
Date: 15-02-2019
Abstract: The Outcome Measures in Rheumatology (OMERACT) Safety Working Group is identifying core safety domains that matter most to patients with rheumatic disease. International focus groups were held with 39 patients with inflammatory arthritis to identify disease-modifying antirheumatic drug (DMARD) experiences and concerns. Themes were identified by pragmatic thematic coding and discussed in small groups by meeting attendees. Patients view DMARD side effects as a continuum and consider the cumulative effect on day-to-day function. Disease and drug experiences, personal factors, and life circumstances influence tolerance of side effects and treatment persistence. Patients weigh overall adverse effects and benefits over time in relation to experiences and life circumstances.
Publisher: Wiley
Date: 06-2021
DOI: 10.1002/ACR.24782
Abstract: We aimed to assess patient preferences for the characteristics and outcomes of biologic and targeted synthetic disease-modifying antirheumatic drugs (DMARDs) to manage psoriatic arthritis. We conducted a discrete choice experiment in patients with psoriatic arthritis from 3 rheumatology centers in Sydney, Australia. We assessed preferences for different attributes of biologic medications. The route and frequency of medications had a range of 5 levels, and the following 7 attributes had a range of 3 levels: the ability to attend to normal activities, improvements in joint pain, enthesitis and skin disease, chance of disease remission, risk of infection, and risk of severe adverse events. Multinomial logit models including a latent class model were used to calculate preferences. Of the 150 participants, 58.3% were female, with a median age of 53.5 years. The attributes in order of preference using the β coefficient in absolute values (95% confidence interval [95% CI]) were as follows: oral route compared to subcutaneous and intravenous routes (β coefficient 1.00 [fixed parameter]), avoiding severe side effects (β coefficient 0.72 [95% CI 0.50, 0.95]), increasing ability to attend to normal activities (β coefficient 0.66 [95% CI 0.36, 0.96]), avoiding infections (β coefficient 0.38 [95% CI 0.23, 0.53]), improvement in enthesitis pain (β coefficient 0.28 [95% CI 0.20, 0.36]), improvement in psoriasis (β coefficient 0.28 [95% CI 0.20, 0.36]), increasing chance of remission (β coefficient 0.27 [95% CI 0.19, 0.36]), and improvement in joint pain (β coefficient 0.26 [95% CI 0.00, 0.52]). When choosing biologic medications, patients with psoriatic arthritis preferred oral medications. Patients prioritized avoiding severe complications, maintaining the ability to attend to work and normal activities, and avoiding infection over clinical measures of efficacy.
Publisher: Springer Science and Business Media LLC
Date: 28-02-2020
DOI: 10.1186/S12891-020-3161-4
Abstract: One in three women and one in five men are expected to experience a minimal-trauma-fracture after the age of 50-years, which increases the risk of subsequent fracture. Importantly, timely diagnosis and optimal treatment in the form of a fracture liaison service (FLS), has been shown to reduce this risk of a subsequent fracture. However, baseline risk of subsequent fracture among this group of FLS patients has not been well described. Therefore, this study aims to estimate absolute risk of subsequent fracture, among women and men aged 50-years or more, presenting to hospital with a minimal-trauma-fracture. Women and men aged 50-years or more with a minimal-trauma-fracture, presenting to hospitals across the South Western Sydney Local Health District between January 2003 and December 2017 were followed to identify subsequent fracture presentations to hospital. Absolute risk of subsequent fracture was estimated, by taking into account the competing risk of death. Between January 2003 and December 2017–15,088 patients presented to the emergency departments of the five hospitals in the SWSLHD (11,149, women [74%]), with minimal-trauma-fractures. Subsequent fractures identified during the follow-up period (median = 4.5 years [IQR, 1.6–8.2]), occurred in 2024 (13%) patients. Death during the initial hospital stay, or during a subsequent hospital visit was recorded among 1646 patients (11%). Women were observed to have 7.1% risk of subsequent fracture after 1-year, following an initial fracture and, the risk of subsequent fracture after 1-year was 6.2% for men. After 5-years the rate among women was 13.7, and 11.3% for men, respectively. Cumulative risk of subsequent fracture when initial fractures were classified as being at proximal or distal sites are also presented. This study has estimated the baseline risk of subsequent fracture among women and men presenting to hospital with minimal trauma fractures. Importantly, this information can be used to communicate risk to patients deciding to attend an osteoporosis refracture prevention clinic, and highlight the need for screening, and initial of treatment when indicated, once a minimal-trauma-fracture has occurred.
Publisher: The Journal of Rheumatology
Date: 15-12-2020
Abstract: Nonadherence to medications is common in rheumatic conditions and associated with increased morbidity. Heterogeneous outcome reporting by researchers compromises the synthesis of evidence of interventions targeting adherence. We aimed to assess the scope of outcomes in interventional studies of medication adherence. We searched electronic databases to February 2019 for published randomized controlled trials and observational studies of interventions with the primary outcome of medication adherence including adults with any rheumatic condition, written in English. We extracted and analyzed all outcome domains and adherence measures with prespecified extraction and analysis protocols. Overall, 53 studies reported 71 outcome domains classified into adherence (1 domain), health outcomes (38 domains), and adherence-related factors (e.g., medication knowledge 32 domains). We sub ided adherence into 3 phases: initiation (n = 13 studies, 25%), implementation (n = 32, 60%), persistence (n = 27, 51%), and phase unclear (n = 20, 38%). Thirty-seven different instruments reported adherence in 115 unique ways (this includes different adherence definitions and calculations, metric, and method of aggregation). Forty-one studies (77%) reported health outcomes. The most frequently reported were medication adverse events (n = 24, 45%), disease activity (n = 11, 21%), bone turnover markers hysical function/quality of life (each n = 10, 19%). Thirty-three studies (62%) reported adherence-related factors. The most frequently reported were medication beliefs (n = 8, 15%), illness perception/medication satisfaction/satisfaction with medication information (each n = 5, 9%), condition knowledge/medication knowledge/trust in doctor (each n = 3, 6%). The outcome domains and adherence measures in interventional studies targeting adherence are heterogeneous. Consensus on relevant outcomes will improve the comparison of different strategies to support medication adherence in rheumatology.
Publisher: Wiley
Date: 28-04-2020
DOI: 10.1002/ACR.23896
Abstract: To describe the range and depth of perspectives and experiences of patients with psoriasis and psoriatic arthritis to inform gaps in patient-centered care. We searched MEDLINE, Embase, PsycINFO, and CINAHL to April 2018. Thematic synthesis was used to analyze the findings. We included 56 studies involving 1,484 adult patients with psoriasis (n = 1,147) and psoriatic arthritis (n = 337). Six themes (and subthemes) were identified: suffering uncontrollable and ongoing upheaval (dictating life choices and course, disrupting family and social roles, limited by debilitating symptoms, unstoppable and far-reaching fatigue), weighed down by mental load (anxiety provoked by the volatility of symptoms, dreading deterioration, struggling with unrecognized distress, helpless and nihilistic), harboring shame and judgement (marked as unhygienic and contagious, rejected and isolated, hiding away and resenting own appearance, pain and embarrassment in intimacy), demoralized by inadequacies and burden of therapy (disappointed by unmet expectations of treatment benefit, daily drudgery, deterred by unpalatable or inconvenient treatments, disempowered by lack of personalized care), gaining control (making sense of the condition, accepting a new health status, regaining independence and normality, attuning to the body), and making confident treatment decisions (trading off perceptible benefits against safety and convenience, relying on family input, seeking empowering and reassuring relationships). Patients with psoriasis and psoriatic arthritis contend with disruption in their functioning, roles, and life course and have unmet expectations about treatment. Enhanced therapeutic relationships, addressing treatment expectations and supporting psychosocial needs may improve satisfaction and outcomes.
Publisher: Wiley
Date: 02-2018
DOI: 10.1111/IMJ.13654
Abstract: The EVOLVE (evaluating evidence, enhancing efficiencies) initiative aims to drive safer, higher-quality patient care through identifying and reducing low-value practices. To determine the Australian Rheumatology Association's (ARA) 'top five' list of low-value practices. A working group comprising 19 rheumatologists and three trainees compiled a preliminary list. Items were retained if there was strong evidence of low value and there was high or increasing clinical use and/or increasing cost. All ARA members (356 rheumatologists and 72 trainees) were invited to indicate their 'top five' list from a list of 12-items through SurveyMonkey in December 2015 (reminder February 2016). A total of 179 rheumatologists (50.3%) and 19 trainees (26.4%) responded. The top five list (percentage of rheumatologists, including item in their top five list) was: Do not perform arthroscopy with lavage and/or debridement for symptomatic osteoarthritis of the knee nor partial meniscectomy for a degenerate meniscal tear (73.2%) Do not order anti-nuclear antibody (ANA) testing without symptoms and/or signs suggestive of a systemic rheumatic disease (56.4%) Do not undertake imaging for low back pain for patients without indications of an underlying serious condition (50.8%) Do not use ultrasound guidance to perform injections into the subacromial space as it provides no additional benefit in comparison to landmark-guided injection (50.3%) and Do not order anti-double-stranded DNA antibodies in ANA negative patients unless the clinical suspicion of systemic lupus erythematosus remains high (45.3%). This list is intended to increase awareness among rheumatologists, other clinicians and patients about commonly used low-value practices that should be questioned.
Publisher: Oxford University Press (OUP)
Date: 31-12-2020
DOI: 10.1093/CKJ/SFAA224
Abstract: Randomized trials can provide evidence to inform decision-making but this may be limited if the outcomes of importance to patients and clinicians are omitted or reported inconsistently. We aimed to assess the scope and heterogeneity of outcomes reported in trials in peritoneal dialysis (PD). We searched the Cochrane Kidney and Transplant Specialized Register for randomized trials in PD. We extracted all reported outcome domains and measurements and analyzed their frequency and characteristics. From 128 reports of 120 included trials, 80 different outcome domains were reported. Overall, 39 (49%) domains were surrogate, 23 (29%) patient-reported and 18 (22%) clinical. The five most commonly reported domains were PD-related infection [59 (49%) trials], dialysis solute clearance [51 (42%)], kidney function [45 (38%)], protein metabolism [44 (37%)] and inflammatory markers/oxidative stress [42 (35%)]. Quality of life was reported infrequently (4% of trials). Only 14 (12%) trials included a patient-reported outcome as a primary outcome. The median number of outcome measures (defined as a different measurement, aggregation and metric) was 22 (interquartile range 13–37) per trial. PD-related infection was the most frequently reported clinical outcome as well as the most frequently stated primary outcome. A total of 383 different measures for infection were used, with 66 used more than once. Trials in PD include important clinical outcomes such as infection, but these are measured and reported inconsistently. Patient-reported outcomes are infrequently reported and nearly half of the domains were surrogate. Standardized outcomes for PD trials are required to improve efficiency and relevance.
Publisher: Elsevier BV
Date: 06-2021
Publisher: Elsevier BV
Date: 11-2022
DOI: 10.1016/J.JAPH.2022.06.014
Abstract: Osteoporosis is a major public health concern, given that disease prevalence is expected to substantially increase due to the aging population. Community pharmacists can play a key role in the identification and management of chronic diseases. The purpose of this systematic review was to present an overview of the literature on the role of community pharmacists in providing osteoporosis interventions to patients. The secondary objective was to assess the impact of these interventions on patient outcomes. A literature search was conducted in Embase, CINAHL, Scopus, MEDLINE, and Web of Science from database inception to March 2021. The search was limited to human studies in the English language. Primary studies were included if they described or assessed a patient-directed osteoporosis intervention conducted by community pharmacists. The following data were extracted and tabulated: citation, study location, study design, subject, number of participants, nature of intervention, classification of intervention, outcome measures, measurement methods, findings, and effect. Risk of bias was assessed using the Cochrane Risk of Bias tool for randomized trials (RoB 2) and Risk of Bias in Non-randomized Studies (ROBINS-I). Twenty-one studies were included in this review. The main interventions were education, screening, and medication management. Nineteen of these studies reported patient outcomes, all yielding positive outcomes. Outcomes included increased physician follow-up, risk factor reduction, increased osteoporosis knowledge, increased medication adherence, identification of medication-related problems, and positive patient-reported experience measures (PREMs). Three studies were considered to have a moderate risk of bias, whereas the remaining 18 studies had a high risk of bias. There is some evidence that pharmacist-led osteoporosis interventions have a positive impact on patient outcomes. More high-quality studies using objective outcome measures are needed to determine whether this translates into clinical outcomes such as decreased hospitalization and fractures.
Publisher: Elsevier BV
Date: 02-2020
Publisher: Elsevier BV
Date: 09-2020
Publisher: The Journal of Rheumatology
Date: 15-07-2020
Abstract: Patient-centered care is widely advocated in rheumatology. This involves collaboration among patients, caregivers, and health professionals and is particularly important in chronic rheumatic conditions because the disease and treatment can impair patients’ health and well-being. Qualitative research can systematically generate insights about people’s experiences, beliefs, and attitudes, which patients may not always express in clinical settings. These insights can address complex and challenging areas in rheumatology, such as treatment adherence and transition to adult healthcare services. Despite this, qualitative research comprises 1% of studies published in top-tier rheumatology journals. A better understanding about the effect and role, methods, and rigor of qualitative research is needed. This overview highlights the recent contributions of qualitative research in rheumatology, summarizes the common approaches and methods used, and outlines the key principles to guide appraisal of qualitative studies.
Publisher: Elsevier BV
Date: 10-2021
DOI: 10.1111/AJT.16613
Abstract: Medicine-taking among transplant recipients is a complex and ubiquitous task with significant impacts on outcomes. This study aimed to describe the perspectives and experiences of medicine-taking in adult solid organ transplant recipients. Electronic databases were searched to July 2020, and thematic synthesis was used to analyze the data. From 119 studies (n = 2901), we identified six themes: threats to identity and ambitions (impaired self-image, restricting goals and roles, loss of financial independence) navigating through uncertainty and distrust (lacking tangible erceptible benefits, unprepared for side effects, isolation in decision-making) alleviating treatment burdens (establishing and mastering routines, counteracting side effects, preparing for the unexpected) gaining and seeking confidence (clarity with knowledge, reassurance through collective experiences, focusing on the future outlook) recalibrating to a new normal posttransplant (adjusting to ongoing dependence on medications, in both states of illness and health, unfulfilled expectations) and preserving graft survival (maintaining the ability to participate in life, avoiding rejection, enacting a social responsibility of giving back). Transplant recipients take medications to preserve graft function, but dependence on medications jeopardizes their sense of normality. Interventions supporting the adaptation to medicine-taking and addressing treatment burdens may improve patient satisfaction and capacities to take medications for improved outcomes.
Publisher: The Journal of Rheumatology
Date: 02-2019
Abstract: The Outcome Measures in Rheumatology (OMERACT) Shared Decision Making (SDM) Working Group aims to determine the core outcome domain set for measuring the effectiveness of SDM interventions in rheumatology trials. A white paper was developed to clarify the draft core domain set. It was then used to prepare for interviews to investigate reasons for lack of consensus on it and to suggest further improvements. OMERACT scientists/clinicians (n = 13) and patients (n = 10) suggested limiting the core domain set to outcome domains, removing process domains, and clarifying remaining domains. A revised core domain set will undergo further consensus-building.
Publisher: Wiley
Date: 24-03-2018
DOI: 10.1002/ACR.23329
Publisher: Wiley
Date: 29-09-2020
DOI: 10.1002/ACR.24032
Abstract: This study aimed to identify and prioritize factors important to patients and caregivers with regard to medication adherence in gout, osteoporosis (OP), and rheumatoid arthritis (RA) and to describe the reasons for their decisions. Patients with gout, OP, and RA and their caregivers, purposively s led from 5 rheumatology clinics in Australia, identified and ranked factors that they considered important for medication adherence using nominal group technique and discussed their decisions. An importance score (IS scale 0-1) was calculated, and qualitative data were analyzed thematically. From 14 focus groups, 82 participants (67 patients and 15 caregivers) identified 49 factors. The top 5 factors based on the ranking of all participants were trust in doctor (IS 0.46), medication effectiveness (IS 0.31), doctor's knowledge (IS 0.25), side effects (IS 0.23), and medication-taking routine (IS 0.13). The order of the ranking varied by participant groupings, with patients ranking "trust in doctor" the highest, while caregivers ranked "side effects" the highest. The 5 themes reflecting the reasons for factors influencing adherence were as follows: motivation and certainty in supportive in idualized care living well and restoring function fear of toxicity and cumulative harm seeking control and involvement and unnecessarily difficult and inaccessible. Factors related to the doctor, medication properties, and patients' medication knowledge and routine were important for adherence. Strengthening doctor-patient trust and partnership, managing side effects, and empowering patients with knowledge and skills for taking medication could enhance medication adherence in patients with rheumatic conditions.
Publisher: Elsevier BV
Date: 12-2018
Publisher: The Journal of Rheumatology
Date: 15-05-2021
Abstract: To describe the perspectives of patients with inflammatory arthritis (IA) on outcome domains of trials evaluating medication adherence interventions. Adult patients (≥ 18 yrs) with IA taking disease-modifying antirheumatic drugs from centers across Australia, Canada, and the Netherlands participated in 6 focus groups to discuss outcome domains that they consider important when participating in medication adherence trials. We analyzed the transcripts using inductive thematic analysis. Of the 38 participants, 23 (61%) had rheumatoid arthritis and 21 (55%) were female. The mean age was 57.3 ± (SD 15.0) years. Improved outcome domains that patients wanted from participating in an adherence trial were categorized into 5 types: medication adherence, adherence-related factors (supporting adherence e.g., medication knowledge), pathophysiology (e.g., physical functioning), life impact (e.g., ability to work), and economic impact (e.g., productivity loss). Three overarching themes reflecting why these outcome domains matter to patients were identified: how taking medications could improve patients’ emotional and physical fitness to maintain their social function how improving knowledge and confidence in self-management increases patients’ trust and motivation to take medications as agreed with minimal risk of harms and how respect and reassurance, reflecting health care that values patients’ opinions and is sensitive to patients’ in idual goals, could improve medication-taking behavior. Patients value various outcome domains related to their overall well-being, confidence in medication use, and patient–healthcare provider relationships to be evaluated in future adherence trials.
Publisher: BMJ
Date: 2021
DOI: 10.1136/BMJOPEN-2020-039670
Abstract: To describe the experiences, priorities, and needs of patients with rheumatic disease and their parents during transition from paediatric to adult healthcare. Face-to-face and telephone semistructured interviews were conducted from December 2018 to September 2019 recruited from five hospital centres in Australia. Fourteen young people and 16 parents were interviewed. Young people were included if they were English speaking, aged 14–25 years, diagnosed with an inflammatory rheumatic disease (eg, juvenile idiopathic arthritis, juvenile dermatomyositis, systemic lupus erythematosus, panniculitis, familial Mediterranean fever) before 18 years of age. Young people were not included if they were diagnosed in the adult setting. We identified four themes with respective subthemes: avoid repeat of past disruption (maintain disease stability, preserve adjusted personal goals, protect social inclusion) encounter a daunting adult environment (serious and sombre mood, discredited and isolated identity, fear of a rigid system) establish therapeutic alliances with adult rheumatology providers (relinquish a trusting relationship, seek person-focused care, redefine personal–professional boundaries, reassurance of alternative medical supports, transferred trust to adult doctor) and negotiate patient autonomy (confidence in formerly gained independence, alleviate burden on patients, mediate parental anxiety). During transition, patients want to maintain disease stability, develop a relationship with their adult provider centralised on personal goals and access support networks. Strategies to comprehensively communicate information between providers, support self-management, and negotiate in idualised goals for independence during transition planning may improve satisfaction, and health and treatment outcomes.
Publisher: The Journal of Rheumatology
Date: 15-01-2019
Abstract: The OMERACT-Adherence meeting was convened to discuss the conceptual and methodological challenges in developing a core domain set (Adherence-CDS) for trials of interventions for medication adherence in rheumatology. Forty participants from nine countries participated. Four ideas emerged: for adherence trials, the Adherence-CDS could include adherence and the condition-specific CDS many factors affect adherence and are intervention targets, contextual factors, or outcome domains adherence is a critical factor in drug trials and standardized adherence measures are needed. Despite the challenges, the meeting clarified an approach to developing an Adherence-CDS that complements existing OMERACT work and methodology.
Publisher: Springer Science and Business Media LLC
Date: 27-03-2018
No related grants have been discovered for Ayano Kelly.