Comparative analysis of centrally mediated and inflammatory pain experiences amongst patients diagnosed with rheumatoid arthritis: A multimethods study.

BACKGROUND: The identification of pain originating from distinct biological processes may lead to individualised pain treatment. In this study, we aimed to explore the pain experiences of patients with rheumatoid arthritis (RA), differentiating between those predominantly exhibiting features of peripheral inflammatory versus centrally mediated pain. METHODS: Through a multimethods approach we (i) quantitatively analysed the differences in pain descriptors between patients diagnosed with RA experiencing peripheral inflammatory and centrally mediated pain, utilising the Short Form-McGill Pain Questionnaire which includes the pain visual analogue scale (VAS) and (ii) qualitatively explored their subjective pain experiences grounded in the biopsychosocial model, commonly applied in chronic pain. RESULTS: Participants with centrally mediated pain reported higher pain scores on the VAS, used a wider range of pain descriptors, and a higher proportion selected each descriptor compared to those with inflammatory pain (p < .001). The qualitative analysis revealed the centrally mediated pain group's experiences were overwhelming and relentless, struggling to precisely articulate the nature of their pain. In contrast, individuals with inflammatory pain expressed their pain in more tangible terms and shared their adaptive and coping strategies. Importantly, both groups revealed the substantial psychological, functional and social impacts of their pain, highlighting the often 'invisible' and misunderstood nature of their symptoms. CONCLUSION: This study has gained a deeper insight into the pain experiences of patients living with RA, particularly in differentiating between centrally mediated and inflammatory types of pain, potentially facilitating a more individualised approach to pain treatment. PATIENT CONTRIBUTION: Patients actively participated in the study conception and design. This engagement includes collaboration with key stakeholders, such as members of the National Rheumatoid Arthritis Society and Patient Research Partners (PRPs), who provided continuous feedback and guidance throughout the research process. Specifically, the qualitative element was coproduced with two PRPs, who were involved in co-leading the focus groups and data analysis.

Social determinants of health and long-term conditions in people of Black African and Black Caribbean ethnicity living with HIV in London: A qualitative study.

BACKGROUND: People living with human immunodeficiency virus (HIV) are disproportionately impacted by socioeconomic deprivation and are at increased risk of developing other long-term conditions (LTCs). These illnesses require transformative action to tackle the adverse effects on their health. Data on lived experiences of LTCs among people living with HIV of Black African and Black Caribbean ethnicities are sparse, and how people with LTCs are impacted by social determinants of health (SDoH). METHODS: Through a phenomenological study design this qualitative study, conducted in 2022, comprised four focus group discussions (FGDs) with 20 people of Black ethnicities living with HIV were purposively invited from a community organisation (CO) in London, including four semistructured interviews with CO staff. Following transcription, qualitative data were analysed thematically and measures to validate the findings were implemented. RESULTS: The findings are presented in terms of the following four levels of SDoH: (1) individual determinants (such as the impact of SDoH on lifestyle modification and self-management); (2) interpersonal determinants (such as positive experiences of accessing healthcare for LTCs); (3) clinical determinants (such as care pathway barriers) and (4) systemic determinants (such as systemic barriers related to race/ethnicity). CONCLUSIONS: It is necessary to provide ongoing and interactive education to community members who live with HIV, focusing on risks and management of LTCs. Additionally, individuals would benefit from support to navigate increasingly complex and fragmented health services. Health Service staff require cultural competence when caring for patients of Black African and Black Caribbean ethnicities with complex health and psychosocial needs. PATIENT OR PUBLIC CONTRIBUTION: The research team collaborated with an HIV CO in South London from the very start of the project to agree the study design and learn about the realities of their daily lived experiences. Community collaborators helped to develop the semistructured interview and FGD topic guides, and were directly involved in the data gathering, analysis and validation.

Occupational impacts of early inflammatory arthritis: results from the National Early Inflammatory Arthritis Audit.

OBJECTIVES: Inflammatory arthritis (IA) causes significant work disability. Studies frequently fail to report important contextual information such as employment type. Our objective was to explore work participation, by gender and occupation type in early IA. METHODS: Data are from the National Early Inflammatory Arthritis Audit between 2018 and 2020. At diagnosis, clinicians collected information on demographics, IA disease activity and working status. Participants completed patient-reported outcomes at baseline, 3- and 12-months, including occupation and Work Productivity Activity Impairment (WPAI). Descriptive analyses of work participation and WPAI scores by occupational class at all timepoints were performed. Regression models examined associations between WPAI score and occupation. FINDINGS: 12 473 people received a diagnosis of IA and reported employment status, amongst whom 5,999 (47%) were in paid-work at least 20-h/week. At diagnosis, the working cohort had statistically significant lower measures of disease activity (p< 0.001). Occupation data were available for 3,694 individuals. At diagnosis, 2,793 completed a WPAI; 200 (7.2%) had stopped work and 344 (12.3%) changed jobs because of IA symptoms. There was a high burden of absenteeism (30%) and presenteeism (40%). Compared with managerial or professional workers, the burden of work disability was greater amongst those in routine (manual) occupations. During follow-up, 9.4% of WPAI completers had stopped work and 14.6% had changed roles. Work dropout occurred almost entirely amongst people doing routine jobs. CONCLUSION: IA associates with work disability within 12 months of diagnosis. It is easier to retain work in certain employment sectors. Participation in routine jobs is more affected, which may widen health inequalities.

Pilot study of a manualised mental health awareness and stigma reduction intervention for Black faith communities in the UK: ON TRAC project.

BACKGROUND: Building partnerships between mental health services and Black faith communities to co-produce culturally tailored interventions is an essential step towards improving access to services and reducing stigma among the Black population. Given that Black faith organisations are considered a primary source of emotional and psychological support they are well positioned as 'gatekeepers' for services, to overcome barriers to engagement and build trusting relationships with the Black community. The aim of this paper is to pilot a manualised mental health awareness and stigma reduction intervention for Black faith communities in the UK, and to make an initial assessment of feasibility, acceptability and outcomes. METHODS: This study employed a mixed methods pre-post-design, based upon the Medical Research Council Framework (MRC) for complex interventions, and the Implementation Science Research Development. RESULTS: The qualitative assessments indicate that the intervention was found overall to be acceptable and feasible to the Black faith community population. This pilot study did not find statistically significant changes for the Mental Health Knowledge schedule (MAKS), Reported and Intended Behaviour Scale (RIBS), intended help-seeking or willingness to disclose (Attitudes to Mental Illness Survey) measures. However, the direction of all the non-significant changes in these measures suggests positive changes in mental health knowledge, a reduction in participants' desire for social distance, and greater willingness to disclose personal experiences of mental health problems. A statistically significant improvement in the Community Attitudes towards Mental Illness (CAMI) scale results indicated a lower level of stigmatising attitudes towards people with lived experience of mental health conditions (PWLE), and an increase in tolerance and support towards PWLE after the intervention. Significant improvement in the willingness to disclose measure suggests increased preparedness to seek help amongst participants, a lesser desire for social distance, and greater willingness to engage with PWLE after the intervention. Three key themes, including 9 subthemes were identified from the qualitative data analysis: (i) initial implementation and intention to adopt; (ii) perceived suitability and usefulness of intervention to address cultural issues relating to mental health in the Black community; and (iii) strengthening the capacity of faith leaders. CONCLUSIONS: This ON TRAC pilot study shows that the intervention was feasible and acceptable, and that it has promising positive impacts and next requires larger scale evaluation. These results demonstrate that the intervention was a culturally acceptable way to potentially increase mental health awareness and reduce stigma in Black faith communities. TRIAL REGISTRATION: ISRCTN12253092.

Worse outcomes linked to ethnicity for early inflammatory arthritis in England and Wales: a national cohort study.

OBJECTIVE: To assess variability in care quality and treatment outcomes across ethnicities in early inflammatory arthritis (EIA). METHODS: We conducted an observational cohort study in England and Wales from May 2018 to March 2020, including patients with a suspected/confirmed EIA diagnosis. Care quality was assessed against six metrics defined by national guidelines. Clinical outcomes were measured using DAS28. Outcomes between ethnic groups ('White', 'Black', 'Asian', 'Mixed', 'Other') were compared, and adjusted for confounders. RESULTS: A total of 35 807 eligible patients were analysed. Of those, 30 643 (85.6%) were White and 5164 (14.6%) were from ethnic minorities: 1035 (2.8%) Black; 2617 (7.3%) Asian; 238 (0.6%) Mixed; 1274 (3.5%) Other. In total, 12 955 patients had confirmed EIA, of whom 11 315 were White and 1640 were from ethnic minorities: 314 (2.4%) Black; 927 (7.1%) Asian; 70 (0.5%) Mixed; 329 (2.5%) Other. A total of 14 803 patients were assessed by rheumatology within three weeks, and 5642 started treatment within six weeks of referral. There were no significant differences by ethnicity. Ethnic minority patients had lower odds of disease remission at three months [adjusted odds ratio 0.79 (95% CI: 0.65, 0.96)] relative to White patients. Ethnic minorities were significantly less likely to receive initial treatment withMTX[0.68 (0.52, 0.90)] or with glucocorticoids [0.63 (0.49, 0.80)]. CONCLUSION: We demonstrate that some ethnic minorities are less likely to achieve disease remission in three months following EIA diagnosis. This is not explained by delays in referral or time to treatment. Our data highlight the need for investigation into the possible drivers of these inequitable outcomes and reappraisal of EIA management pathways.

Anti-stigma training and positive changes in mental illness stigma outcomes in medical students in ten countries: a mediation analysis on pathways via empathy development and anxiety reduction.

PURPOSE: Studies of mental illness stigma reduction interventions have been criticised for failing to evaluate behavioural outcomes and mechanisms of action. This project evaluates training for medical students entitled 'Responding to Experienced and Anticipated Discrimination' (READ), developed to focus on skills in addition to attitudes and knowledge. We aimed to (i) evaluate the effectiveness of READ with respect to knowledge, attitudes, and clinical communication skills in responding to mental illness-related discrimination, and (ii) investigate whether its potential effectiveness was mediated via empathy or/and intergroup anxiety. METHODS: This is an international multisite non-randomised pre- vs post-controlled study. Eligible medical students were currently undertaking their rotational training in psychiatry. Thirteen sites across ten countries (n = 570) were included in the final analysis. RESULTS: READ was associated with positive changes in knowledge (mean difference 1.35; 95% CI 0.87 to 1.82), attitudes (mean difference - 2.50; 95% CI - 3.54 to - 1.46), skills (odds ratio 2.98; 95% CI 1.90 to 4.67), and simulated patient perceived empathy (mean difference 3.05; 95% CI 1.90 to 4.21). The associations of READ with knowledge, attitudes, and communication skills but not with simulated patient perceived empathy were partly mediated through student reported empathy and intergroup anxiety. CONCLUSION: This is the first study to identify mediating effects of reduced intergroup anxiety and increased empathy in an evaluation of anti-stigma training that includes behavioural measures in the form of communication skills and perceived empathy. It shows the importance of both mediators for all of knowledge, skills, and attitudes, and hence of targeting both in future interventions.

Empowerment training to support service user involvement in mental health system strengthening in rural Ethiopia: a mixed-methods pilot study.

BACKGROUND: Increased service user involvement is recommended to improve weak mental health systems in low-and middle-income countries (LMICs). However, involvement is rarely implemented and interventions to support involvement are sparse. In this study we evaluated the acceptability, feasibility and perceived outcomes of an empowerment and training program for service users and health professionals to facilitate service user involvement in mental health system strengthening in rural Ethiopia. METHODS: REducing Stigma among HealthcAreProvidErs (RESHAPE) is a training curriculum for service users, their caregivers and aspirational health workers, which uses PhotoVoice methodology, to prepare them in participation of mental health systems strengthening in LMICs. We delivered the RESHAPE training augmented with empowerment content developed in Ethiopia. The interactive face-to-face training was delivered to service users and caregivers (over 10 days), and health professionals (1 day) separately. The study was an uncontrolled, convergent mixed-methods design. The quantitative data consisted of process data, satisfaction questionnaire, and a retrospective pre-test survey. Qualitative data included exit and follow-up in-depth interviews with the service users. Descriptive statistics were performed for quantitative data, and qualitative data were thematically analysed. The findings were integrated through triangulation for convergent themes following analysis. RESULTS: Twelve service users, 12 caregivers and 18 health professionals were enrolled, and completed the training. Participants valued the content and delivery process; the standard of the training program met their expectations and participation led to positive gains in understanding about mental illness, stigma, service-user involvement and human rights. The qualitative findings identified positive impacts, including increased self-confidence, sense of empowerment, social - and perceived therapeutic benefits. CONCLUSIONS: We found that the RESHAPE training with added content for Ethiopia, delivered using the PhotoVoice methodology, is feasible, acceptable and of value to develop and implement training programmes which can empower service users to be involved in mental health system strengthening in this setting. Further study to assess the impact on health systems strengthening is warranted.

Summarizing current refractory disease definitions in rheumatoid arthritis and polyarticular juvenile idiopathic arthritis: systematic review.

OBJECTIVES: To identify how refractory disease (or relevant terminology variations) in RA and polyarticular JIA (polyJIA) is defined and establish the key components of such definitions. METHODS: Searches were undertaken of English-language articles within six medical databases, including manual searching, from January 1998 to March 2020 (PROSPERO: CRD42019127142). Articles were included if they incorporated a definition of refractory disease, or non-response, in RA/polyJIA, with clear components to the description. Qualitative content analysis was undertaken to describe refractory disease in RA/polyJIA and classify each component within each definition. RESULTS: Of 6251 studies screened, 646 met the inclusion criteria; 581 of these applied non-response criteria while 65 provided refractory disease definitions/descriptions. From the non-response studies, 39 different components included various disease activity measures, emphasizing persistent disease activity and symptoms, despite treatment with one or more biologic DMARD (bDMARD). From papers with clear definitions for refractory disease, 41 components were identified and categorized into three key themes: resistance to multiple drugs with different mechanisms of action, typically two or more bDMARDs; persistence of symptoms and disease activity; and other contributing factors. The most common term used was 'refractory' (80%), while only 16.9% reported explicitly how their definition was generated (e.g. clinical experience or statistical methods). CONCLUSION: Refractory disease is defined as resistance to multiple drugs with different mechanisms of action by persistence of physical symptoms and high disease activity, including contributing factors. A clear unifying definition needs implementing, as the plethora of different definitions makes study comparisons and appropriate identification of patients difficult.

Evidence for interventions to promote mental health and reduce stigma in Black faith communities: systematic review.

PURPOSE: There are significant documented inequalities for the Black community in the UK in relation to mental health care. Research has also indicated that cultural difference exists in pathways into, and engagement with, mental health services. To reduce inequalities and improve engagement with mental health services, it is important that professionals utilise culturally appropriate community networks to increase mental health awareness and reduce stigma. This systematic review considers research in Black faith settings, with two linked aims to review the evidence for the effectiveness of (i) mental health interventions, and (ii) other health stigma interventions as the latter have been implemented in Black faith settings. The review identified 'active ingredients' of interventions for this population that can be applied in future work. The authors seek to draw from the mental health and wider health stigma literature to inform the design of the ON TRAC project, a collaborative partnership between King's College London, South London and Maudsley NHS Foundation Trust and Black faith community groups in Southwark and Lambeth, London, in this currently under-researched area. METHODS: A systematic search of ten major medical and social sciences databases was conducted in 2019, for studies on mental health or other health stigma interventions in Black faith settings. PRISMA guidelines were followed and search terms and search strategy ensured all possible studies were identified for review. RESULTS: The review identified sixteen studies for inclusion. Ten were quantitative studies, four qualitative studies and two systematic reviews. Active ingredients of interventions included utilisation of 'bottom up' development of approaches and mental health champions. Multiple factors were found to influence effective implementation. Co-production and partnership working are key to ensure that an acceptable and accessible intervention is agreed. CONCLUSION: Evidence for the effectiveness of interventions focused on mental health awareness and stigma reduction in the Black faith community is limited due to the low quality of studies. This review sheds light on the lessons learnt and necessary key requirements for interventions that can guide future projects. STUDY REGISTRATION: PROSPERO registration number: CRD42018110068.

Fatigue in adults with primary antiphospholipid syndrome: findings from a mixed-methods study.

OBJECTIVE: This study aimed to explore the experience and impact of fatigue in adults with primary antiphospholipid syndrome (pAPS). METHODS: This sequential, explanatory mixed-methods study enrolled adults with a six-month or more history of pAPS. Consenting participants completed the Functional Assessment of Chronic Illness Therapy-Fatigue subscale (FS), Multi-Dimensional Perceived Social Support Scale, Patient Health Questionnaire (PHQ9), Pittsburgh Sleep Quality Index (PSQI), International Physical Activity Questionnaire (IPAQMETS). Relationships between FS and other variables were explored with multiple linear regression. Interviews were conducted with a subgroup of participants, and the data were analysed thematically. RESULTS: A total of 103 participants were recruited (Mage = 50.3 years; standard deviation = 10.1 years; 18 males). Of these, 62% reported severe fatigue. Greater fatigue was associated with lower mood, physical inactivity, poorer sleep quality and lower perceived social support. The best-fit model explained 56% of the variance in FS (adjusted R2 = 0.560, F(3, 74) = 33.65, p > 0.001) and included PHQ9 and IPAQMETS as significant predictors, and PSQI as a non-significant predictor. Twenty participants completed interviews. Three key themes were identified: characteristics of fatigue, impact on life and coping strategies. CONCLUSION: Fatigue was a common symptom of pAPS and challenging to manage. Other factors, particularly mood and physical activity, influenced fatigue. Evidence-based self-management interventions are needed.

Treatment failure in inflammatory arthritis: time to think about syndemics?

Social determinants of health play a crucial role in health and disease. In current times, it has become increasingly known that biological and non-biological factors are potentially linked and help to drive disease. For example, links between various comorbidities, both physical and mental illnesses, are known to be driven by social, environmental and economic determinants. This contributes to worse disease outcomes. This article discusses the concept of syndemics, which although well-described in some conditions, represents a novel concept in the context of rheumatic and musculoskeletal diseases. Written in the form of a viewpoint, the article focuses on a novel theoretical framework for studying inflammatory arthritis, based on a syndemic approach that takes into account the social context, biocultural disease interaction, and socio-economic characteristics of the setting. Syndemics involving inflammatory arthritis may be most likely in a social context involving limited access to health care, lack of physical activity and obesogenic diets, high rates of alcohol consumption, and high exposure to stressful life events.

Responding to experienced and anticipated discrimination (READ): anti -stigma training for medical students towards patients with mental illness - study protocol for an international multisite non-randomised controlled study.

BACKGROUND: Stigma and discrimination are a significant public health concern and cause great distress to people with mental illness. Healthcare professionals have been identified as one source of this discrimination. In this article we describe the protocol of an international, multisite controlled study, evaluating the effectiveness of READ, an anti-stigma training for medical students towards patients with mental illness. READ aims to improve students' ability to minimise perceived discriminatory behaviours and increase opportunities for patients, therefore developing the ability of future doctors to address and challenge mental illness related discrimination. READ includes components that medical education research has shown to be effective at improving attitudes, beliefs and understanding. METHODS/DESIGN: READ training was developed using evidence based components associated with changes in stigma related outcomes. The study will take place in multiple international medical schools across high, middle and low income countries forming part of the INDIGO group network, with 25 sites in total. Students will be invited to participate via email from the lead researcher at each site during their psychiatry placement, and will be allocated to an intervention or a control arm according to their local teaching group at each site. READ training will be delivered solely to the intervention arm. Standardised measures will be used to assess students' knowledge, attitudes and skills regarding discrimination in both the intervention and control groups, at baseline and at follow up immediately after the intervention. Statistical analyses of individual-level data will be conducted using random effects models accounting for clustering within sites to investigate changes in mean or percentages of each outcome, at baseline and immediately after the intervention. DISCUSSION: This is the first international study across high, middle and low income countries, which will evaluate the effectiveness of training for medical students to respond effectively to patients' experiences and anticipation of discrimination. The results will promote implementation of manualised training that will help future doctors to reduce the impact of mental illness related discrimination on their patients. Limitations of the study are also discussed.

Transitional journeys into, and through medical education for First-in-Family (FiF) students: a qualitative interview study.

BACKGROUND: There has been much interest in the transitions along the medical education continuum. However, little is known about how students from non-traditional backgrounds experience both the move to, and through Medical School, and their ambitions post-graduation. This research sought to understand the transitional journey into, and through undergraduate medical education, and future career aspirations for first-in-family (FiF) medical students. METHODS: Based on a interpretivist epistemological perspective, 20 FiF students from one English Medical School participated in semi-structured interviews. Participants were identified according to purposive inclusion criteria and were contacted by email via the student association at the Medical School and academic year leaders. The team approach to the thematic analysis enhanced the findings credibility. This research was part of an international collaboration. RESULTS: In the first transition, 'The Road to Medical School', a passion for science with an interest in people was a motivator to study medicine. Participants' parents' shared the elation of acceptance into Medical School, however, the support from school/college teachers was a mixed experience. In 'The Medical School Journey' transition, knowledge about the medical curriculum was variable. 'Fitting' in at Medical School was a problem for some, but studying for an elite degree elevated social status for many study participants. A source of support derived from senior medical student peers, but a medical degree could sacrifice students' own health. In the final transition, 'Future Plans', a medical career was perceived to have intrinsic value. Clarity about future aspirations was related to clinical experience. For some, career trajectories were related to a work-life balance and future NHS working conditions for Junior Doctors. CONCLUSIONS: The transitions highlighted in this article have important implications for those educators interested in a life cycle approach to widening participation in medical education. Future research should explore the post-graduation transitions for doctors from first-in-family University backgrounds.

Service user involvement in mental health system strengthening in a rural African setting: qualitative study.

BACKGROUND: It is essential to involve service users in efforts to expand access to mental health care in integrated primary care settings in low- and middle-income countries (LMICs). However, there is little evidence from LMICs to guide this process. The aim of this study was to explore barriers to, and facilitators of, service user/caregiver involvement in rural Ethiopia to inform the development of a scalable approach. METHODS: Thirty nine semi-structured interviews were carried out with purposively selected mental health service users (n = 13), caregivers (n = 10), heads of primary care facilities (n = 8) and policy makers/planners/service developers (n = 8). The interviews were audio-recorded and transcribed in Amharic, and translated into English. Thematic analysis was applied. RESULTS: All groups of participants supported service user and caregiver involvement in mental health system strengthening. Potential benefits were identified as (i) improved appropriateness and quality of services, and (ii) greater protection against mistreatment and promotion of respect for service users. However, hardly any respondents had prior experience of service user involvement. Stigma was considered to be a pervasive barrier, operating within the health system, the local community and individuals. Competing priorities of service users included the need to obtain adequate individual care and to work for survival. Low recognition of the potential contribution of service users seemed linked to limited empowerment and mobilization of service users. Potential health system facilitators included a culture of community oversight of primary care services. All groups of respondents identified a need for awareness-raising and training to equip service users, caregivers, service providers and local community for involvement. Empowerment at the level of individual service users (information about mental health conditions, care and rights) and the group level (for advocacy and representation) were considered essential, alongside improved, accessible mental health care and livelihood interventions. CONCLUSION: As Ethiopia increases access to mental health care, a fundamental barrier to service user involvement is beginning to be addressed. Our study identified further barriers that need to be tackled, including a supportive political climate, and receptiveness amongst stakeholders. The findings will inform the development of a model of service user involvement, which will be piloted and evaluated.

Patient involvement in the development of a handbook for moderate rheumatoid arthritis.

BACKGROUND: Self-management is a key recommendation for people with rheumatoid arthritis (RA). Educational materials may support self-management, and increasingly patients are becoming involved with the development of these materials. The TITRATE trial compares the effectiveness of intensive management to standard care in patients with moderate RA across England. As part of the intensive management intervention, participants are given a handbook. AIM AND OBJECTIVES: The aim of this study was to develop a handbook to support the intensive management. The objectives were to: (i) involve patients in the identification of relevant information for inclusion in the TITRATE handbook; (ii) ensure the content of the handbook is acceptable and accessible. DESIGN: We held an audio-taped workshop with RA patients. The transcript of the workshop was analysed using thematic content analysis. RESULTS: Five main themes were identified as follows: 'rheumatoid arthritis treatment, perceptions of rheumatoid arthritis, the importance of individualized goals, benefits of self-management and the patient handbook'. Feedback from the workshop was incorporated into the handbook, and patients' anonymous testimonies were added. CONCLUSION: This study demonstrates that patient contribution to the development of educational material to support intensive management of RA is both feasible and valuable. A qualitative evaluation of the use and impact of the handbook with patients and practitioners is planned on completion of the TITRATE trial.

Patient involvement in rheumatology outpatient service design and delivery: a case study.

BACKGROUND: Patient involvement is increasingly recognized as important within the UK National Health Service to ensure that services delivered are relevant to users' needs. Organizations are encouraged to work with service users to achieve excellence in care. Patient education can improve health outcomes and reduce health-care costs. Mobile technologies could play a vital role in this. AIM: Patient-centred development of innovative strategies to improve the experience of rheumatology outpatients. CASE STUDY: The Group Rheumatology Initiative Involving Patients (GRIIP) project was set up in 2013 as a joint venture between patients, clinicians, academics and management at a London hospital. The project saw (i) the formation of an independent patient group which provided suggestions for service improvement - outcomes included clearer signs in the outpatient waiting area, extended phlebotomy opening hours and better access to podiatry; (ii) a rolling patient educational evening programme initiated in 2014 with topics chosen by patient experts - feedback has been positive and attendance continues to grow; and (iii) a mobile application (app) co-designed with patients launched in 2015 which provides relevant information for outpatient clinic attendees and data capture for clinicians - downloads have steadily increased as users adopt this new technology. CONCLUSION: Patients can effectively contribute to service improvement provided they are supported, respected as equals, and the organization is willing to undergo a cultural change.

Motivational interviewing: relevance in the treatment of rheumatoid arthritis?

Advances in pharmacological treatment options in RA have led to a dramatic potential for improvement in patients' physical and psychological status. Despite advances, poor outcomes, including fatigue, pain, reduced physical activity and quality of life, are still observed. Reasons include non-adherence to medication, insufficient knowledge about the disease and lack of support in coping and effectively self-managing their condition. Motivational interviewing (MI) is a person-centred approach that relies on collaboration and empathy aiming to elicit a person's own motivation for behaviour change. It has been implemented in a variety of long-term conditions, addressing issues such as lifestyle changes with beneficial effects, but it is yet to be widely recognized and adopted in the field of rheumatology. This review will explain the techniques underpinning MI and the rationale for adopting this approach in rheumatology with the aim to increase medication adherence and physical activity and improve patients' coping strategies for pain and fatigue.

Experiences of medical students who are first in family to attend university.

CONTEXT: Students from backgrounds of low socio-economic status (SES) or who are first in family to attend university (FiF) are under-represented in medicine. Research has focused on these students' pre-admission perceptions of medicine, rather than on their lived experience as medical students. Such research is necessary to monitor and understand the potential perpetuation of disadvantage within medical schools. OBJECTIVES: This study drew on the theory of Bourdieu to explore FiF students' experiences at one Australian medical school, aiming to identify any barriers faced and inform strategies for equity. METHODS: Twenty-two FiF students were interviewed about their backgrounds, expectations and experiences of medical school. Interviews were recorded, transcribed and analysed thematically. Findings illustrate the influence and interaction of Bourdieu's principal forms of capital (social, economic and cultural) in FiF students' experiences. RESULTS: The absence of health professionals within participants' networks (social capital) was experienced as a barrier to connecting with fellow students and accessing placements. Financial concerns were common among interviewees who juggled paid work with study and worried about expenses associated with the medical programme. Finally, participants' 'medical student' status provided access to new forms of cultural capital, a transition that was received with some ambivalence by participants themselves and their existing social networks. CONCLUSIONS: This study revealed the gaps between the forms of capital valued in medical education and those accessible to FiF students. Admitting more students from diverse backgrounds is only one part of the solution; widening participation strategies need to address challenges for FiF students during medical school and should enable students to retain, rather than subdue, their existing, diverse forms of social and cultural capital. Embracing the diversity sought in admissions is likely to benefit student learning, as well as the communities graduates will serve. Change must ideally go beyond medical programmes to address medical culture itself.

Service user and caregiver involvement in mental health system strengthening in low- and middle-income countries: systematic review.

BACKGROUND: The involvement of mental health service users and their caregivers in health system policy and planning, service monitoring and research can contribute to mental health system strengthening, but as yet there have been very few efforts to do so in low- and middle-income countries (LMICs). METHODS: This systematic review examined the evidence and experience of service user and caregiver involvement in mental health system strengthening, as well as models of best practice for evaluation of capacity-building activities that facilitate their greater participation. Both the peer-reviewed and the grey literature were included in the review, which were identified through database searches (MEDLINE, Embase, PsycINFO, Web of Knowledge, Web of Science, Scopus, CINAHL, LILACS, SciELO, Google Scholar and Cochrane), as well as hand-searching of reference lists and the internet, and a snowballing process of contacting experts active in the area. This review included any kind of study design that described or evaluated service user, family or caregiver (though not community) involvement in LMICs (including service users with intellectual disabilities, dementia, or child and adolescent mental health problems) and that were relevant to mental health system strengthening across five categories. Data were extracted and summarised as a narrative review. RESULTS: Twenty papers matched the inclusion criteria. Overall, the review found that although there were examples of service user and caregiver involvement in mental health system strengthening in numerous countries, there was a lack of high-quality research and a weak evidence base for the work that was being conducted across countries. However, there was some emerging research on the development of policies and strategies, including advocacy work, and to a lesser extent the development of services, service monitoring and evaluation, with most service user involvement having taken place within advocacy and service delivery. Research was scarce within the other health system strengthening areas. CONCLUSIONS: Further research on service user and caregiver involvement in mental health system strengthening in LMICs is recommended, in particular research that includes more rigorous evaluation. A series of specific recommendations are provided based on the review.