A one-size-fits-all approach to data-sharing will not suffice in lifecourse research: a grounded theory study of data-sharing from the perspective of participants in a 50-year-old lifecourse study about health and development.

BACKGROUND: Data-sharing is increasingly encouraged or required by funders and journals. Data-sharing is more complicated for lifecourse studies that rely upon ongoing participation, but little is known about perspectives on data-sharing among participants of such studies. The aim of this qualitative study was to explore perspectives on data-sharing of participants in a birth cohort study. METHODS: Semi-structured interviews were conducted with 25 members of the Dunedin Multidisciplinary Health and Development Study when aged between 45 and 48 years. Interviews were led by the Director of the Dunedin Study and involved questions about different scenarios for data-sharing. The sample consisted of nine Dunedin Study members who are Maori (the Indigenous peoples of Aotearoa/New Zealand) and 16 who are non-Maori. RESULTS: Principles of grounded theory were applied to develop a model of participant perspectives on data-sharing. The model consists of three factors that inform a core premise that a one-size-fits-all approach to data-sharing will not suffice in lifecourse research. Participants suggested that data-sharing decisions should depend on the cohort and might need to be declined if any one Dunedin Study member was opposed (factor 1). Participants also expressed a proven sense of trust in the researchers and raised concerns about loss of control once data have been shared (factor 2). Participants described a sense of balancing opportunities for public good against inappropriate uses of data, highlighting variability in perceived sensitivity of data, and thus a need to take this into account if sharing data (factor 3). CONCLUSIONS: Communal considerations within cohorts, loss of control over shared data, and concerns about inappropriate uses of shared data need to be addressed through detailed informed consent before data-sharing occurs for lifecourse studies, particularly where this has not been established from the start of the study. Data-sharing may have implications for the retention of participants in these studies and thus may impact on the value of long-term sources of knowledge about health and development. Researchers, ethics committees, journal editors, research funders, and government policymakers need to consider participants' views when balancing the proposed benefits of data-sharing against the potential risks and concerns of participants in lifecourse research.

Unmet need for gender-affirming care as a social determinant of mental health inequities for transgender youth in Aotearoa/New Zealand.

BACKGROUND: Past studies have demonstrated better mental health and well-being among transgender youth who had accessed gender-affirming care. However, few existing studies have assessed unmet need for gender-affirming care as a social determinant of mental health inequities. METHODS: Data on unmet need for gender-affirming care, distress and suicidality were analysed from the 2018 Counting Ourselves nationwide community-based survey of transgender people in Aotearoa/New Zealand. Associations between unmet need for gender-affirming care and mental health indicators were tested for transgender youth within the sample (aged 14-26 years; n = 608; Mage = 20.5). RESULTS: Transgender youth reported unmet needs ranging from 42% for gender-affirming hormone to 100% for feminizing surgeries and voice surgeries. Overall unmet need for gender-affirming care was associated with worse mental health. Trans men with an unmet need for chest reconstruction (84%) scored an average of 7.13 points higher on the K10 Psychological Distress Scale relative to those whose need had been met. Participants reporting unmet need for hormones (42%) had twice the odds (adjusted odds ratios = 2.01; CI = 1.02-3.98) of having attempted suicide in the last 12 months. CONCLUSIONS: Dismantling barriers to accessing gender-affirming care could play a crucial role in reducing mental health inequities faced by transgender youth.

Supportive interactions with primary care doctors are associated with better mental health among transgender people: results of a nationwide survey in Aotearoa/New Zealand.

BACKGROUND: Past research has established that transgender people experience significant disparities in mental health outcomes and healthcare dissatisfaction compared with cisgender people, but more research is needed on how supportive healthcare interactions relate to the mental health of transgender people. OBJECTIVES: The 2 main aims of our analyses were: (i) to establish the most common negative experiences in healthcare and the most common supportive experiences specifically with primary care doctors for transgender people; and (ii) to examine the association of supportive experiences with mental health variables after controlling for demographic factors. METHODS: Data from the 2018 Counting Ourselves nationwide survey of transgender people were analysed using regression modelling. The 948 participants with a primary care doctor or general practitioner were included in analyses. Participants were aged 14-83 years old (mean 30.20). RESULTS: The most common supportive experiences involved primary care doctors treating transgender people equitably, with competence, and with respect. Participants with more negative healthcare experiences had higher psychological distress as well as higher likelihood of reporting nonsuicidal self-injury and suicidality. Conversely, participants with more experiences of supportive primary care doctors had lower psychological distress and were less likely to have attempted suicide in the past 12 months. CONCLUSION: When transgender people receive supportive care from their primary care providers they experience better mental health, despite ongoing negative healthcare experiences. Future research is needed to confirm ways of supporting positive trajectories of mental health for transgender people but these findings demonstrate the importance of positive aspects of care.

Mental health and quality of life for people with rheumatoid arthritis or ankylosing spondylitis in Aotearoa New Zealand following the COVID-19 national lockdown.

The aim of this study was to investigate the effects of lockdown on the mental health (anxiety and depression) and quality of life (QOL) of people with rheumatoid arthritis (RA) and ankylosing spondylitis (AS) in the context of the COVID-19 pandemic and public health measures instituted at a national level by the New Zealand Government. The present cohort was 104 individuals with RA (73.1%) and AS (26.9%) who had previously completed surveys for the Patient Opinion Real-Time Anonymous Liaison (PORTAL) project in 2018. Participants completed an online survey between July and September 2020 assessing their experiences over the first national COVID-19 lockdown in New Zealand (March-May, 2020). Fear of SARS-CoV-2 infection, baseline anxiety, and being younger in age were all predictors of participants' current anxiety levels. Current QOL scores were significantly lower than prior to lockdown and were predicted by baseline QOL and current depression. No variables predicted current depression other than baseline levels. The COVID-19 pandemic appears to have had an impact on QOL and anxiety levels, but not depression for people with RA and AS in New Zealand. These novel findings imply that appropriate screening of mental health issues should be included in planning within the ongoing COVID-19 pandemic and for future pandemics to optimise the wellbeing of people with RA and AS.

Once a clinician, always a clinician: a systematic review to develop a typology of clinician-researcher dual-role experiences in health research with patient-participants.

BACKGROUND: Many health researchers are clinicians. Dual-role experiences are common for clinician-researchers in research involving patient-participants, even if not their own patients. To extend the existing body of literature on why dual-role is experienced, we aimed to develop a typology of common catalysts for dual-role experiences to help clinician-researchers plan and implement methodologically and ethically sound research. METHODS: Systematic searching of Medline, CINAHL, PsycINFO, Embase and Scopus (inception to 28.07.2014) for primary studies or first-person reflexive reports of clinician-researchers' dual-role experiences, supplemented by reference list checking and Google Scholar scoping searches. Included articles were loaded in NVivo for analysis. The coding was focused on how dual-role was evidenced for the clinician-researchers in research involving patients. Procedures were completed by one researcher (MB) and independently cross-checked by another (JHS). All authors contributed to extensive discussions to resolve all disagreements about initial coding and verify the final themes. RESULTS: Database searching located 7135 records, resulting in 29 included studies, with the addition of 7 studies through reference checks and scoping searches. Two overarching themes described the most common catalysts for dual-role experiences - ways a research role can involve patterns of behaviour typical of a clinical role, and the developing connection that starts to resemble a clinician-patient relationship. Five subthemes encapsulated the clinical patterns commonly repeated in research settings (clinical queries, perceived agenda, helping hands, uninvited clinical expert, and research or therapy) and five subthemes described concerns about the researcher-participant relationship (clinical assumptions, suspicion and holding back, revelations, over-identification, and manipulation). Clinician-researchers use their clinical skills in health research in ways that set up a relationship resembling that of clinician-patient. Clinicians' ingrained orientation to patients' needs can be in tension with their research role, and can set up ethical and methodological challenges. CONCLUSION: The typology we developed outlines the common ways dual-role is experienced in research involving clinician-researchers and patient-participants, and perhaps the inevitability of the experience given the primacy accorded to patient well-being. The typology offers clinician-researchers a framework for grappling with the ethical and methodological implications of dual-role throughout the research process, including planning, implementation, monitoring and reporting.

The effectiveness of behaviour change interventions to increase physical activity participation in people with multiple sclerosis: a systematic review and meta-analysis.

OBJECTIVE: A systematic review and meta-analysis was conducted to illustrate whether people with multiple sclerosis engage in more physical activity following behaviour change interventions. DATA RESOURCES: MEDLINE, CINAHL, PubMed, Web of Sciences, Cochrane Library, SCOPUS, EMBASE and PEDro were searched from their inception till 30 April 2015. TRIAL SELECTION: Randomized and clinical controlled trials that used behaviour change interventions to increase physical activity in people with multiple sclerosis were selected, regardless of type or duration of multiple sclerosis or disability severity. DATA EXTRACTION: Data extraction was conducted by two independent reviewers and the Cochrane Collaboration's recommended method was used to assess the risk of bias of each included study. RESULTS: A total of 19 out of 573 studies were included. Focusing on trials without risk of bias, meta-analysis showed that behaviour change interventions can significantly increase physical activity participation (z = 2.20, p = 0.03, standardised main difference 0.65, 95% confidence interval 0.07 to 1.22, 3 trials, I(2) = 68%) (eight to 12 weeks' duration). Behaviour change interventions did not significantly impact on the physical components of quality of life or fatigue. CONCLUSION: Behaviour change interventions provided for relatively short duration (eight to 12 weeks) may increase the amount of physical activity people with multiple sclerosis engage in, but appear to have no effect on the physical components of quality of life and fatigue. Further high quality investigations of the efficacy of behaviour change interventions to increase physical activity participation that focus on dose, long-term impact and method of delivery are warranted for people with multiple sclerosis.

A randomized controlled trial of a cognitive behavioural patient education intervention vs a traditional information leaflet to address the cardiovascular aspects of rheumatoid disease.

OBJECTIVES: Cardiovascular disease (CVD) is responsible for 50% of the excess mortality for patients with RA. This study aimed to evaluate a novel 8-week cognitive behavioural patient education intervention designed to effect behavioural change with regard to modifiable CVD risk factors in people with RA. METHODS: This was a non-blinded randomized controlled trial with a delayed intervention arm. Participants were randomly assigned to receive the cognitive behavioural education intervention or a control information leaflet at a ratio of 1:1. The primary outcome measure was patient's knowledge of CVD in RA; secondary measures were psychological measures relating to effecting behaviour change, actual behaviour changes and clinical risk factors. Data were collected at baseline, 2 and 6 months. RESULTS: A total of 110 participants consented (52 in the intervention group and 58 in the control group) to participate in the study. At 6 months, those in the intervention group had significantly higher knowledge scores (P < 0.001); improved behavioural intentions to increase exercise (P < 0.001), eat a low-fat diet (P = 0.01) and lose weight (P = 0.06); and lower mean diastolic blood pressure by 3.7 mmHg, whereas the control group's mean diastolic blood pressure increased by 0.8 mmHg. There was no difference between the groups on actual behaviours. CONCLUSIONS: Patient education has a significant role to play in CVD risk factor modification for patients with RA, and the detailed development of this programme probably contributed to its successful results. It is disappointing that behaviours, as we measured them, did not change. The challenge, as always, is how to translate behavioural intentions into action. Larger studies, powered specifically to look at behavioural changes, are required. Trial registration. National Institute for Health Research, UKCRN 4566.

Combining self-help and professional help to minimize barriers to physical activity in persons with multiple sclerosis: a trial of the "Blue Prescription" approach in New Zealand.

BACKGROUND AND PURPOSE: Increasing participation in physical activity is a goal for many health care providers working with persons with disability. In order to reduce the physical and social barriers to participation, there is a need to develop approaches that integrate self-help with professional help for autonomous yet supported health promotion. This study reports on an innovative program, entitled the "Blue Prescription approach", in which physical therapists work collaboratively with persons with a disability to promote community-based physical activity participation. METHODS: We trialed this collaborative approach with two physical therapists and 27 participants with multiple sclerosis (MS) over a three month period. We gathered qualitative data from four sources: (i) individual interviews with our participants, (ii) individual interviews with the physical therapists, (iii) clinical notes, and (iv) Advisory Group meeting notes. We then analyzed these data for categories to inform the content and resources required for delivery of the approach. RESULTS: For most participants, the Blue Prescription approach facilitated regular engagement in the physical activity of their choice. The Advisory Group provided advice to help solve individual contexts that presented as challenges to participants. Based on review of interview transcripts, we identified four strategies or issues to inform the further development of Blue Prescription. DISCUSSION AND CONCLUSIONS: Evidence indicated that the Blue Prescription approach can provide a collaborative and flexible way for physical therapists to work with individuals with MS, to increase participation in community-based physical activity. To further develop the approach, there is a need to address issues related to the use of standardized measures and develop strategies to train physical therapists in collaborative approaches for promotion of physical activity.The integration of self-help and professional help provided by the Blue Prescription approach appeared to result in successful promotion of physical activity in persons with MS. Additional testing is required to examine its efficacy in other health care systems, in conditions beyond MS, and in terms of its economic impact.Video Abstract available (see Video, Supplemental Digital Content 1, http://links.lww.com/JNPT/A46) for more insights from the authors.

#Bodypositive surpasses 1 billion engagements.

The body-positive movement (#bodypositive) champions body acceptance by celebrating a diverse - visual - array of body types and shapes online. Sparked out of collective resistance to unrealistic bodies on social media, the #bodypositive community has assembled a considerable following: having now surpassed one billion engagements on Instagram. To mark this milestone, we highlight the problem, the promise, and the peril of image-focused movements on Instagram. On balance, we argue #bodypositive content on Instagram likely has a positive impact. As the movement continues to grow though, advocates can look to strengthen the content's positive impact with some careful, research-informed, messaging adjustments.

Validation of the Dudley Inflammatory Bowel Symptom Questionnaire for the assessment of bowel symptoms in axial SpA: prevalence of clinically relevant bowel symptoms and association with disease activity.

OBJECTIVES: To validate the Dudley Inflammatory Bowel Disease Questionnaire (DISQ) for determining the presence and severity of bowel symptoms in axial SpA. METHODS: Seventy-seven SpA patients were assessed for disease activity using the BASDAI. All participants, including 32 healthy controls and 29 patients with Crohn's Disease (CD), completed the DISQ and an assessment of stool form and frequency. Validation of the DISQ was undertaken in accordance with OMERACT criteria. RESULTS: Validity of the DISQ for measuring bowel symptoms in SpA was confirmed (Cronbach's α 0.79). Mean DISQ scores (s.d.) were: controls 2.6 (2.6), SpA 8.7 (6.1) and CD 17.1 (10.2). Differences were significant between controls and SpA, and SpA and CD, and correlated with disease activity (ρ 0.27, P = 0.02). In SpA, DISQ scores of those taking NSAIDs (n = 59) did not differ from those not taking NSAIDs (n = 18) (P = 0.31). Stool form and frequency differed significantly between SpA patients and healthy controls (P < 0.001). Using the DISQ the prevalence of clinically relevant bowel symptoms in SpA is 31%, and 7.8% experience bowel symptoms equivalent to active CD. CONCLUSION: The DISQ is a valid measure of bowel symptoms in SpA. Bowel symptoms are prevalent in SpA and correlate with disease activity. Symptoms do not relate to treatment with NSAIDs. We conclude that bowel symptoms should be included as a domain in the clinical assessment of patients with SpA and that the DISQ has potential as an outcome measure in clinical trials.

Seeking of help and support after experiencing sexual harm: considerations for cisgender women, cisgender men and gender-diverse people.

AIMS: This study examines the help-seeking behaviours of cisgender women, cisgender men and gender-diverse university students who have experienced sexual harm. METHODS: We examine an existing data set from a cross-sectional survey of experiences of sexual harm among university students. Bivariate analyses were used to analyse the type of sexual harm experienced and subsequent help-seeking behaviours. RESULTS: Although more cisgender women reported experiencing sexual harm, data from this survey demonstrates cisgender men and gender-diverse persons also report experiencing sexual harm. Of those who reported having experienced sexual harm, only a small proportion (27%) reported having told someone about their experience. People who told, most often told family or friends. Additionally, a small proportion of cisgender women told specialised sexual violence services or other services. Cisgender men were less likely to tell someone about their experience compared to cisgender women. CONCLUSIONS: Sexual harm affects students of all genders on campus but there may be differential help-seeking behaviours depending on gender. Cisgender men and gender-diverse persons may be less likely to reach out to formal service providers. Support services need to consider how to accommodate the support needs of all survivors, including cisgender men and gender-diverse persons.

"I teach them. I have no choice": experiences of primary care among transgender people in Aotearoa New Zealand.

AIM: This study aims to report primary care experiences among transgender people in Aotearoa New Zealand based on quantitative and qualitative data from a nationwide community-based survey of transgender people. METHODS: Subsamples with a usual general practitioner were employed from the 2018 Counting Ourselves Survey (n=871) and the 2018/19 New Zealand Health Survey to assess inequities between these samples in primary care experiences and barriers. Guided by Andersen's Behavioural Model of healthcare access, we conducted a content analysis on comments from Counting Ourselves participants (n=153) to identify themes about issues of concern for transgender people when accessing primary care. RESULTS: Transgender participants had greater risk of feeling no confidence in their GPs (Mdifference=0.22; Cohen's d=0.39), reporting barriers accessing primary care due to cost (38.4% vs 17.4%; RR=2.21), and transport issues (13.5% vs 3.0%; RR=4.58) compared to the general population. Content analysis uncovered how transgender people's primary care experiences are shaped by healthcare environments, predisposing characteristics, and enabling resources. CONCLUSION: Our findings indicate ways to ensure primary care services are inclusive so that all transgender people feel welcome. This requires all primary healthcare professionals to demonstrate core trans-specific cultural safety when providing healthcare to transgender patients.

Perspectives on expertise in teaching about transgender healthcare: A focus group study with health professional programme teaching staff and transgender community members.

Background: It is well established that transgender people experience considerable health inequities, which are sustained in part by limited teaching about transgender healthcare for trainee health professionals. Aims: The aim of this study was to explore the perspectives of both teaching staff from health professional education programmes and transgender community members on the best ways to teach about transgender healthcare, with a focus on ways of: 1) overcoming barriers to this teaching; and 2) involving community members in this teaching. Methods: A research advisory committee was convened to guide the project and included transgender community members, teaching staff from health professional programmes, and trainee health professionals in Aotearoa/New Zealand. Three preliminary focus groups were held with 10 transgender community members. These community members were then invited to act as transgender community 'ambassadors' in focus groups with teaching staff based on suggestions from the advisory committee. Six focus groups were conducted with 22 teaching staff from a range of health professional education programmes along with at least two transgender community ambassadors. Results: Teaching staff positioned themselves as lacking the expertise to teach about transgender healthcare but also as expert teachers when applying methods such as small group teaching. Transgender participants also positioned themselves as having expertise arising primarily from their own experiences and acknowledged that effective teaching about transgender healthcare would need to cover a diversity of transgender identities and healthcare outside their own experiences. Teaching staff and transgender community members were keen to pool expertise and thus overcome the shared sense of lacking the expertise to teach about transgender healthcare. Discussion: These findings provide insights into the current barriers to teaching about transgender healthcare and provide future directions for staff development on teaching about transgender healthcare and ways of safely involving transgender community members in teaching.

Understanding Aotearoa New Zealand University Students Intentions to Seek Help If Experiencing Mental Distress: A Comparison of Naturalistic and Interventional Findings.

University students globally are consistently identified as a vulnerable group for mental distress and suicide. Despite this, students report low engagement in help-seeking behaviours. This series of studies aimed to assess barriers to help-seeking for students and the impact of an intervention that sought to increase support-seeking intentions. In Study 1, 373 undergraduate psychology students completed items related to depression, anxiety, suicidal ideation, stigma, and help-seeking intentions. In Study 2, 133 undergraduate psychology students were randomly allocated into one of three intervention groups (control, infographic, video) and completed measures as used in Study 1. Despite experiencing clinically relevant symptoms and recent suicidal ideation, students in Study 1 tended to report low intentionality to seek help, citing perceptions that their distress was not serious enough or a desire to handle their issues independently. In Study 2, an infographic about different support services increased student's intentions to access support services and reduced their perception that their issues were not serious enough. Overall, Aotearoa New Zealand students endorsed similar barriers to help-seeking as students in other countries. Importantly, we demonstrated that a simple infographic intervention reduced perceptions regarding these common barriers and may increase students' knowledge about when to seek help.

Examining Men's Experiences of Abuse From a Female Intimate Partner in Four English-Speaking Countries.

This qualitative study explores the experiences of men who self-report victimization from a female intimate partner in four English-speaking countries. Forty-one men who reported any type of intimate partner abuse (IPA) from a female partner were recruited via targeted advertising in Australia, Canada, the United Kingdom, and the United States. Twelve online focus groups were conducted across countries using a phenomenologically informed design. Thematic analysis was carried out from an inductive and realist epistemological position and themes identified at a semantic level. This approach was taken to directly reflect the men's experiences and perspectives, ensuring the voices of this hard-to-reach and overlooked population were heard. Three themes were identified across the countries: an imbalanced experience of harm; living with sustained abuse; and knowledge is power for men experiencing IPA. It was found that most participants underwent physical harm in the context of coercive control and experienced abuse over long periods of time. They were slow to recognize the magnitude of their partners' behavior and act upon it for a range of reasons that are described in detail. In addition, promoting knowledge about the victimization of men by women, using appropriate language and active learning, was found to be important in helping the men gain autonomy and agency to break the pattern of abuse and aid their recovery. The implications of the findings for developing male-friendly IPA policy, practice, and services are discussed, in addition to the need for innovative research methodology to access hard-to-reach populations.

Fears about COVID-19 and perceived risk among people with rheumatoid arthritis or ankylosing spondylitis following the initial lockdown in Aotearoa New Zealand.

BACKGROUND: The COVID-19 pandemic has disrupted all aspects of life and may raise particular fears for people with rheumatic disease. There is a need for research on fears and perceived risk of SARS-CoV-2 so as to understand the impact on wellbeing and inform service provision. OBJECTIVES: The aim of this study was to examine the correlates of COVID-19 fears and perceived risk of SARS-CoV-2 among people with rheumatoid arthritis or ankylosing spondylitis. DESIGN: A cross-sectional survey design was applied in Aotearoa New Zealand in the period after initial nationwide lockdowns. METHOD: An online survey was completed from July to September 2020 by 126 individuals with rheumatoid arthritis (n = 96) or ankylosing spondylitis (n = 30) who had previously been recruited to the Patient Opinion Real-Time Anonymous Liaison (PORTAL) study in 2015 or 2018. The survey included demographics and health information as well as measures of COVID-19 fears and experiences, functional disability and fatigue-related disability. RESULTS: Fears about COVID-19 were higher among younger participants, those who had been tested for SARS-CoV-2, and those who experienced more flares over the initial lockdown. Perceived risk of SARS-CoV-2 infection was also higher among individual who had been tested for SARS-CoV-2 and those taking biologic medications. CONCLUSION: Fears about COVID-19 and perceived risk of infection are related to age, health and medications among individuals with rheumatoid arthritis or ankylosing spondylitis. These findings inform how health professionals can help address the concerns of particular groups of people with rheumatic disease by providing relevant information about the ongoing effects of the pandemic.

"I'm actually pretty happy with how I am": a mixed-methods study of young women with positive body image.

OBJECTIVE: Previous research on body image has tended to overlook what contributes to positive body image. The aim of the present study was to explore the perspectives of female undergraduate students with positive body image. DESIGN: Nineteen young women who were studying at a New Zealand university (mean age 19.61) and self-reported positive body image participated in focus groups discussing body image. MAIN OUTCOME MEASURE: Thematic analysis resulted in four themes. RESULTS: The young women described a positive shift in body image that occurred between adolescence and early adulthood (theme 1). They were critical of messages about the female body within media and made conscious decisions about media they engage with (theme 2). They expressed a functional conceptualisation of their bodies and had strategies for responding to negative thoughts and feelings (theme 3). Religious and cultural identity played a specific role in body positivity for some participants (theme 4). CONCLUSION: These findings highlight the developmental nature of positive body image and the role of adopting critical awareness when engaging with media. The findings support and elaborate on previous research suggesting that those with positive body image utilise a body-protective filter and demonstrate novel aspects of young women's body positivity.

What Are the Preferences of Patients With Rheumatoid Arthritis for Treatment Modification? A Scoping Review.

OBJECTIVES: Optimal care of rheumatoid arthritis (RA) patients entails regular assessment of disease activity and appropriate adjustment of disease-modifying antirheumatic drugs (DMARDs) until a predefined treatment goal is achieved. This raises questions about the approach to treatment decision making among RA patients and their preference for associated treatment changes. We aimed to systematically identify and synthesize the available evidence of RA patients' preferences regarding DMARD modification with an emphasis on escalating, tapering, stopping, or switching of DMARDs. METHODS: A scoping review was undertaken to gauge the breadth of evidence from the range of studies relating to RA patients' preferences for DMARD modification. Pertinent databases were searched for relevant studies published between 1988 and 2019. Conventional content analysis was applied to generate themes about how patients perceive changes to their RA treatment. RESULTS: Of the 1730 distinct articles identified, 32 were included for review. Eight studies investigated RA patients' perceptions of switching to other DMARDs, 18 studies reported RA patients' preferences for escalating treatment, and six studies explored the possibility of tapering or stopping of biologic DMARDs. Four overarching themes relating to RA patients' preferences for treatment modification were identified: (i) patient satisfaction, (ii) patients' beliefs, (iii) information needs, and (iv) patient-clinician relationships. CONCLUSION: Uptake of treatment changes in clinical practice can be improved by understanding how RA patients approach the decision to modify their treatment and how this relates to their satisfaction, beliefs, information needs, and relationships with clinicians. Future work is needed to systematically determine the significance of these factors in RA patients' decision-making processes.

Understanding Fatigue-Related Disability in Rheumatoid Arthritis and Ankylosing Spondylitis: The Importance of Daily Correlates.

OBJECTIVE: Fatigue is common among people with inflammatory arthritis but is hard to manage. The aim of this study was to investigate how daily fluctuations in psychological variables correspond with changes in fatigue-related disability in the daily lives of people with inflammatory arthritis and to identify factors to target in psychological interventions and routine clinical practice. METHODS: A cohort of 143 patients with rheumatoid arthritis (n = 97) or ankylosing spondylitis (n = 46) participated in a 10-day online diary study. Each evening participants completed a diary questionnaire assessing their fatigue, pain, fatigue-related disability, and 4 components of psychological flexibility (valued activity, mindfulness, cognitive fusion, and fatigue avoidance). RESULTS: On days when participants were more engaged in valued activities or more mindful, they reported less disability due to fatigue, even when controlling for levels of fatigue and pain that day. The daily psychological flexibility variables explained a total of 15.6% of the variance in daily fatigue-related disability. CONCLUSION: Psychological flexibility variables are directly associated with fatigue-related disability in the daily lives of inflammatory arthritis patients. Further research is needed to investigate whether interventions that target psychological flexibility are effective at reducing fatigue-related disability.