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1.
Patient Educ Couns ; 112: 107713, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37003160

RESUMO

First-degree relatives (FDRs) of people with rheumatoid arthritis (RA) are increasingly recruited to prediction and prevention studies. Access to FDRs is usually via their proband with RA. Quantitative data on predictors of family risk communication are lacking. RA patients completed a questionnaire assessing likelihood of communicating RA risk information to their FDRs, demographic variables, disease impact, illness perceptions, autonomy preferences, interest in FDRs taking a predictive test for RA, dispositional openness, family functioning, and attitudes towards predictive testing. Ordinal regression examined associations between patients' characteristics and their median likelihood of communicating RA risk to FDRs. Questionnaires were completed by 482 patients. The majority (75.1%) were likely/extremely likely to communicate RA risk information to FDRs, especially their children. Decision-making preferences, interest in FDRs taking a predictive test, and beliefs that risk knowledge would increase people's empowerment over their health increased patients' odds of being likely to communicate RA risk information to FDRs. Beliefs that risk information would cause stress to their relatives decreased odds that patients would be likely to communicate RA risk. These findings will inform the development of resources to support family communication about RA risk.


Assuntos
Artrite Reumatoide , Autoanticorpos , Criança , Humanos , Artrite Reumatoide/genética , Fatores de Risco , Família , Pacientes
2.
BMC Rheumatol ; 6(1): 50, 2022 Aug 24.
Artigo em Inglês | MEDLINE | ID: mdl-35999571

RESUMO

BACKGROUND: Rheumatoid arthritis (RA) is a chronic inflammatory arthritis which can cause joint damage and reduced quality of life. Early treatment of RA within 3 months of symptom onset is associated with improved clinical outcomes. However, this window of opportunity is often missed. One important contributing factor is patients with symptoms of RA delaying consulting their general practitioner (GP). Previous research indicates that patients with inflammatory arthritis are likely to visit pharmacies for advice before consulting their GP. Therefore, pharmacists are well positioned to identify patients with symptoms of early inflammatory arthritis and signpost them appropriately. This research examines community pharmacy staff's knowledge, perceptions, and approaches to management of patients presenting with symptoms of RA in order to identify training needs and other opportunities for intervention to enhance the role of pharmacy staff in the pathway to care. METHODS: Semi-structured interviews were conducted with 19 community pharmacy staff in the West Midlands (UK), during a 12-month period (2017-2018). The interviews were audio-recorded, transcribed, and analyzed using thematic analysis facilitated by NVivo 12. RESULTS: There was considerable variation in knowledge and perceptions of RA and the need for early treatment amongst pharmacists and other pharmacy staff. The potential role of pharmacists and other pharmacy staff in reducing delay in help-seeking was also discussed. Four themes emerged from thematic analysis: (1) Variations in perceptions and knowledge about RA. (2) The role of the pharmacy in increasing public awareness about RA. (3) The role of the pharmacy staff in facilitating access to the GP. (4) Practical considerations for pharmacy-based interventions. CONCLUSION: Variability in knowledge and perceptions of RA amongst pharmacists, and amongst other pharmacy staff will affect effective signposting of suspected RA cases. This study identifies opportunities for enhanced training of community pharmacists and other pharmacy staff in relation to inflammatory arthritis as well as other pharmacy-based interventions, such as public awareness campaigns about RA and other musculoskeletal conditions. Together with existing referral services and other pharmacy-based initiatives this could result in enhanced signposting to GP consultation or other appropriate NHS services for inflammatory symptoms and reduced treatment delay.

3.
BMC Med Educ ; 22(1): 607, 2022 Aug 05.
Artigo em Inglês | MEDLINE | ID: mdl-35932046

RESUMO

INTRODUCTION: Clinical examinations (assessments) are integral to ensuring that medical students can treat patients safely and effectively. The COVID-19 pandemic disrupted traditional formats of clinical examinations. This prompted Medical Schools to adapt their approaches to conducting these examinations to make them suitable for delivery in the pandemic. This systematic review aims to identify the approaches that Medical Schools, internationally, adopted in adapting their clinical examinations of medical students in response to the COVID-19 pandemic. METHODS: Three databases and four key medical education journals were systematically searched up to 22 October 2021; a grey literature search was also undertaken. Two reviewers independently screened at title, abstract stage and full text stage against predefined eligibility criteria. Discrepancies were resolved by discussion and involvement of senior authors. Risk of bias assessment was performed using an adapted version of a pre-existing risk of bias assessment tool for medical education developments. Results were summarised in a narrative synthesis. RESULTS: A total of 36 studies were included, which documented the approaches of 48 Medical Schools in 17 countries. Approaches were categorised into in-person clinical examinations (22 studies) or online clinical examinations (14 studies). Authors of studies reporting in-person clinical examinations described deploying enhanced infection control measures along with modified patient participation. Authors of studies reporting online clinical examinations described using online software to create online examination circuits. All authors reported that adapted examinations were feasible, scores were comparable to previous years' student cohorts, and participant feedback was positive. Risk of bias assessment highlighted heterogeneity in reporting of the clinical examinations. CONCLUSIONS: This review identified two broad approaches to adapting clinical examinations in the pandemic: in-person and online. Authors reported it was feasible to conduct clinical examinations in the pandemic where medical educators are given sufficient time and resources to carefully plan and introduce suitable adaptations. However, the risk of bias assessment identified few studies with high reporting quality, which highlights the need for a common framework for reporting of medical education developments to enhance reproducibility across wider contexts. Our review provides medical educators with the opportunity to reflect on past practises and facilitate the design and planning of future examinations.


Assuntos
COVID-19 , Educação Médica/métodos , Pandemias , Estudantes de Medicina , COVID-19/epidemiologia , COVID-19/prevenção & controle , Educação Médica/tendências , Humanos , Reprodutibilidade dos Testes
4.
Rheumatology (Oxford) ; 61(8): 3223-3233, 2022 08 03.
Artigo em Inglês | MEDLINE | ID: mdl-34850849

RESUMO

OBJECTIVES: There is increasing interest in prediction and prevention of RA. It is important to understand the views of those at risk to inform the development of effective approaches. First-degree relatives (FDRs) of RA patients are at increased risk of RA. This study assessed predictors of their interest in predictive testing for RA. METHODS: Questionnaires were completed by RA patients (provided with their questionnaire by a healthcare professional) and their FDRs (provided with their questionnaire by their RA proband). FDR surveys assessed interest in taking a predictive test, demographic variables, perceived RA risk, attitudes about predictive testing, autonomy preferences, illness perceptions, avoidance coping and health anxiety. Patient surveys included demographic variables, disease impact, RA duration and treatment. Ordinal logistic regression examined the association between FDRs' characteristics and their interest in predictive testing. Generalized estimating equations assessed associations between patient characteristics and FDRs' interest in predictive testing. RESULTS: Three hundred and ninety-six FDRs responded. Paired data from the RA proband were available for 292. The proportion of FDRs interested in predictive testing was 91.3%. Information-seeking preferences, beliefs that predictive testing can increase empowerment over health and positive attitudes about risk knowledge were associated with increased interest. Beliefs that predictive testing could cause psychological harm predicted lower interest. Patient characteristics of the proband were not associated with FDRs' interest. CONCLUSIONS: FDRs' interest in predictive testing for RA was high, and factors associated with interest were identified. These findings will inform the development of predictive strategies and informational resources for those at risk.


Assuntos
Artrite Reumatoide , Artrite Reumatoide/diagnóstico , Artrite Reumatoide/genética , Família/psicologia , Humanos , Modelos Logísticos , Fatores de Risco , Inquéritos e Questionários
5.
Ophthalmic Plast Reconstr Surg ; 38(2): 180-184, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34293789

RESUMO

AIMS: To describe patients with periocular solitary extramedullary plasmacytoma (SEMP) and multiple myeloma (MM), together with an estimate of the risk of progression from SEMP to MM. PATIENTS AND METHODS: A retrospective case-note review for patients seen between 1978 and 2020, examining demographics, presentation, imaging, pathology, management, and outcome. RESULTS: Twenty patients (10 male; 50%) presented at a mean age of 60.9 years, with an average symptom duration of 4.5 months. Ten (50%) patients had known systemic myeloma at ophthalmic presentation (the MM group) and, on average, they presented one decade earlier than those with occult MM discovered after orbital biopsy (p = 0.06); the majority (9/15; 60%) of patients with MM were female, whereas there was a male bias (4/5; 80%) with SEMP (p = 0.30). Most tumors (15/20; 75%) were within the anterior part of the orbit, especially superolaterally (16 patients; 80%), and the soft-tissue mass often appeared to "explode" from the frontal bone or greater wing of the sphenoid (16/20; 80%). Full treatment details were known for 19 patients: 6 (32%) had solely orbital radiotherapy, 4 (21%) chemotherapy, 6 (32%) combined chemoradiation, and 3 (16%) had combined chemoradiation with stem-cell transplant (Table 3). After an average follow up of 58 months, 1/5 (20%) patients with SEMP and 11/15 (73%) with MM had tumor-related death. The overall survival probability for all 20 patients with periocular plasmacytoma was 34% at 5 and 10 years, with MM patients having a worse outlook (27% 5-year, and 18% 10-year survival) compared with SEMP (53% survival at 5 and 10 years) (p = 0.18). None of the 5 patients with SEMP progressed to systemic MM over an average follow up of 9.1 years. CONCLUSIONS: Although 50% patients with periocular plasmacytoma appear to have a SEMP at ophthalmic presentation, a half of these patients were found to have occult MM within 6 months of biopsy. Of those without systemic disease around the time of biopsy, none developed MM over an average follow up of more than 9 years.


Assuntos
Neoplasias Ósseas , Mieloma Múltiplo , Plasmocitoma , Neoplasias Ósseas/diagnóstico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Mieloma Múltiplo/diagnóstico , Mieloma Múltiplo/terapia , Plasmocitoma/diagnóstico , Plasmocitoma/patologia , Plasmocitoma/terapia , Estudos Retrospectivos
6.
Res Involv Engagem ; 6: 6, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32099665

RESUMO

PLAIN ENGLISH SUMMARY: Patient and public involvement (PPI) improves the quality of health research and ensures that research is relevant to patients' needs. Though PPI is increasingly evident in clinical and health services research, there are few examples in the research literature of effective PPI in translational and laboratory-based research. In this paper, we describe the development and evaluation of PPI in a multi-centre European project (EuroTEAM - Towards Early biomarkers in Arthritis Management) that included both translational and laboratory-based and psychosocial research. We found that although most PPI in EuroTEAM was centred around the psychosocial research, there were examples of PPI in the laboratory studies. As the project evolved, researchers became better at accommodating PPI and identifying PPI opportunities. It was generally agreed that PPI had a positive impact on the project overall, particularly on public engagement with the research. We concluded that the inclusion of both psychosocial and laboratory-based research in the same project facilitated PPI across all aspects of the research. In future projects, we would try to specify individual PPI activities in more detail at the project-planning stage, and better accommodate patient partners who are not native speakers of English. ABSTRACT: Background Patient and public involvement (PPI) enhances research quality and relevance and is central to contemporary health policy. The value of PPI has been recognised in rheumatology research, though there are limited examples of PPI in basic and translational science. The EU FP7 funded 'EuroTEAM' (Towards Early biomarkers in Arthritis Management) project was established to develop biomarker-based approaches to predict the future development of rheumatoid arthritis and incorporated psychosocial research to investigate the perceptions of 'at risk' individuals about predictive testing, and to develop informational resources about rheumatoid arthritis (RA) risk. Patient involvement was central to EuroTEAM from the inception of the project. The objective of this paper is to describe the development of PPI in EuroTEAM, formatively assess the impact of PPI from the perspectives of researchers and patient research partners (PRPs), reflect on successes and lessons learned, and formulate recommendations to guide future projects.Methods Two mixed-methods surveys (for PRPs and researchers) and a teleconference were undertaken to assess the impact of PPI on individual work packages and on EuroTEAM overall.Results There was consensus about the positive impact of PPI on the research and on the experiences of those involved. In particular, the positive impact of PPI on the personal development of researchers, and on effective public engagement with EuroTEAM research were highlighted. Researchers described adapting their practice in future projects to facilitate PPI. Spin-off projects and ongoing collaborations between PRPs and researchers reflected the value of PPI to participants. PPI was more frequently integrated in psychosocial research, though examples of PPI in laboratory/translational science were also described. PRPs asked for more opportunities to contribute meaningfully to basic scientific research and for more extensive feedback on their contributions.Conclusions The findings were used to formulate recommendations to guide effective involvement of patients in future similar projects, including identifying specific training requirements for PRPs and researchers, the identification of PRP focused tasks/deliverables at the project planning stage, and supporting access to involvement for all PRPs. Importantly, the distinctive multidisciplinary approach of EuroTEAM, incorporating both basic science and psychosocial research, facilitated patient involvement in the project overall.

7.
Arthritis Care Res (Hoboken) ; 72(3): 360-368, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-30710453

RESUMO

OBJECTIVE: Little is known about the experiences, values, and needs of people without arthritis who undergo predictive biomarker testing for the development of rheumatoid arthritis (RA). Our study aimed to explore the perspectives of these individuals and describe their information needs. METHODS: A qualitative, multicenter interview study with a thematic analysis was conducted in Austria, Germany and the UK. Individuals were interviewed who underwent predictive biomarker testing for RA and had a positive test result but no diagnosis of any inflammatory joint disease. Participants included patients with arthralgia and asymptomatic individuals. Information and education needs were developed from the qualitative codes and themes using the Arthritis Educational Needs Assessment Tool as a frame of reference. RESULTS: Thematic saturation was reached in 34 individuals (76% female, 24 [71%] with arthralgia, and 10 [29%] asymptomatic individuals). Thirty-seven codes were summarized into 4 themes: 1) decision-making around whether to undergo initial predictive testing, 2) willingness to consider further predictive tests, and/or 3) preventive interventions, including medication, and 4) varying reactions after receiving a positive test result. Individuals with arthralgia were more likely to be willing to take preventive action, undergo further testing, and experience psychological distress than asymptomatic individuals. All participants expressed the need for tailored, patient-understandable information. CONCLUSION: Individuals at risk of RA are currently the subjects of research aimed at developing better predictive strategies and preventive approaches. Their perceptions and needs should be addressed to inform the future development of interventions combined with education.


Assuntos
Anticorpos Antiproteína Citrulinada/sangue , Artrite Reumatoide/prevenção & controle , Doenças Assintomáticas/psicologia , Quimioprevenção/psicologia , Fator Reumatoide/sangue , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Artralgia/etiologia , Artralgia/prevenção & controle , Artralgia/psicologia , Artrite Reumatoide/sangue , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto Jovem
8.
Rheumatol Adv Pract ; 3(2): rkz042, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31768498

RESUMO

OBJECTIVE: The aim was to explore the perceptions of rheumatology health-care professionals (HCPs) of interacting with patients of South Asian origin attending early inflammatory arthritis clinics. METHODS: We used face-to-face semi-structured interviews, designed in partnership with a clinician partner, to interview 10 HCPs involved in the running of early inflammatory arthritis clinics across seven centres in the UK. Data were recorded, transcribed by an independent company and analysed using inductive thematic analysis. RESULTS: Three emerging themes were identified that characterized consulting experiences of HCPs: varied approaches were used in early inflammatory arthritis clinic; the challenges for rheumatology HCPs in managing and delivering information to patients of South Asian origin in early inflammatory arthritis clinics; and moving towards good practice, the views on managing future patients of South Asian origin in early inflammatory arthritis clinics. Overall, HCPs found that they required additional skills to support the engagement and management for patients of South Asian origin living with inflammatory arthritis. The HCPs felt that they were less effective in addressing self-management issues for this patient group, and they found it difficult to determine adherence to medication. In such consultations, HCPs perceived that their own limitation of inadequate training contributed towards poor consultations. CONCLUSION: For the first time, our data demonstrate that the management of patients of South Asian origin in early inflammatory arthritis clinics is under-served. To address this, HCPs have identified training needs to improve knowledge and skills in engaging with and supporting patients of South Asian origin. These findings provide a good direction for future research.

9.
Rheumatol Adv Pract ; 3(2): rkz017, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31528840

RESUMO

OBJECTIVE: The aim was to explore how UK South Asian patients living with RA interact with health care professionals and experience receiving health information in an early inflammatory arthritis clinic. METHODS: A semi-structured interview schedule, designed in conjunction with a patient partner, was used for face-to-face interviews. South Asian participants with RA were recruited from Central Manchester University Hospitals National Health Service Foundation Trust. Data were recorded and transcribed by an independent company. Data were analysed using inductive thematic analysis. RESULTS: Fifteen participants were interviewed. Three predominant themes emerged around participants' experiences and interaction with health care professionals in early inflammatory arthritis clinic. First, 'the personal experiences of RA and cultural link to early inflammatory arthritis clinic', where participants described the impact of RA as individuals and their altered roles within their cultural setting. Second, 'experiences of interacting and receiving information in the early inflammatory arthritis clinic', where participants described their limited engagement with health care professionals and the quality of information discussed in the clinic. Third, 'views on future content for early inflammatory arthritis clinics', where participants highlighted new innovative ideas to build on current practice. CONCLUSION: We believe this to be the first study to generate insight into the experiences of South Asian patients of interacting with health care professionals while attending an early inflammatory arthritis clinic. Policy directives aimed at improving access to services and delivery of information for ethnic minority groups in early inflammatory arthritis clinics should include consideration of the different roles of cultures. Professionals should be cognizant of the factors that drive health inequalities and focus on improving service delivery.

10.
BMJ Open ; 9(3): e024361, 2019 03 04.
Artigo em Inglês | MEDLINE | ID: mdl-30837252

RESUMO

OBJECTIVE: To investigate delays from symptom onset to rheumatology assessment for patients with a new onset of rheumatoid arthritis (RA) or unclassified arthritis. METHODS: Newly presenting adults with either RA or unclassified arthritis were recruited from rheumatology clinics. Data on the length of time between symptom onset and first seeing a GP (patient delay), between first seeing a general practitioner (GP) and being referred to a rheumatologist (general practitioner delay) and being seen by a rheumatologist following referral (hospital delay) were captured. RESULTS: 822 patients participated (563 female, mean age 55 years). The median time between symptom onset and seeing a rheumatologist was 27.2 weeks (IQR 14.1-66 weeks); only 20% of patients were seen within the first 3 months following symptom onset. The median patient delay was 5.4 weeks (IQR 1.4-26.3 weeks). Patients who purchased over-the-counter medications or used ice/heat packs took longer to seek help than those who did not. In addition, those with a palindromic or an insidious symptom onset delayed for longer than those with a non-palindromic or acute onset. The median general practitioner delay was 6.9 weeks (IQR 2.3-20.3 weeks). Patients made a mean of 4 GP visits before being referred. The median hospital delay was 4.7 weeks (IQR 2.9-7.5 weeks). CONCLUSION: This study identified delays at all levels in the pathway towards assessment by a rheumatologist. However, delays in primary care were particularly long. Patient delay was driven by the nature of symptom onset. Complex multi-faceted interventions to promote rapid help seeking and to facilitate prompt onward referral from primary care should be developed.


Assuntos
Artrite Reumatoide/terapia , Comportamento de Busca de Ajuda , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Encaminhamento e Consulta/normas , Adulto , Idoso , Feminino , Medicina Geral , Humanos , Masculino , Pessoa de Meia-Idade , Reumatologia , Automedicação/psicologia , Inquéritos e Questionários , Tempo para o Tratamento , Reino Unido
11.
Semin Arthritis Rheum ; 48(5): 815-820, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30072114

RESUMO

BACKGROUND: Rheumatoid arthritis (RA) has articular and non-articular manifestations. Early, intensive treatment has substantial benefit for both. This requires patients be identified as soon as symptoms develop. OBJECTIVES: To determine whether selected signs and symptoms can be identified in the primary care records of patients prior to a formal diagnosis of RA being made and, if so, how early they can be identified. METHODS: A case-control study was constructed within the UK Clinical Practice Research Datalink (CPRD). 3577 individuals with 'definite' RA, were matched to 14,287 individuals without inflammatory arthritis. An index date was established (i.e., date general practitioner (GP) first appeared to suspect RA). Rates of consultation and consultations for suspected early RA symptoms were compared in cases and controls in the two years prior to the index date using conditional logistic regression, adjusted for number of consultations. RESULTS: The mean (standard deviation) age of participants was 58.8 (14.5) years and 66.8% were female. Rates of any consultation were significantly higher in RA cases than in controls for at least two years prior to the index date. Cases were more likely to have a pre-diagnosis coded consultation for joint, and particularly hand symptoms (aOR 11.44 (9.60, 13.63)), morning stiffness (8.10 (3.54, 18.5)), carpal tunnel syndrome (4.57 (3.54, 5.88)) and other non-articular features. CONCLUSIONS: In patients who develop RA, GP consultation rates are higher for at least two years prior to the first recorded suspicion of RA. This study highlights symptoms that should raise a GP's index of suspicion for RA.


Assuntos
Artrite Reumatoide/diagnóstico , Sintomas Prodrômicos , Adulto , Idoso , Artralgia/diagnóstico , Artrite Reumatoide/fisiopatologia , Estudos de Casos e Controles , Diagnóstico Precoce , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Atenção Primária à Saúde/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Fatores de Risco
14.
RMD Open ; 4(1): e000641, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29862044

RESUMO

OBJECTIVES: To describe the development and assess the psychometric properties of the novel 'Symptoms in Persons At Risk of Rheumatoid Arthritis' (SPARRA) questionnaire in individuals at risk of rheumatoid arthritis (RA) and to quantify their symptoms. METHODS: The questionnaire items were derived from a qualitative study in patients with seropositive arthralgia. The questionnaire was administered to 219 individuals at risk of RA on the basis of symptoms or autoantibody positivity: 74% rheumatoid factor and/or anticitrullinated protein antibodies positive, 26% seronegative. Validity, reliability and responsiveness were assessed. Eighteen first degree relatives (FDR) of patients with RA were used for comparison. RESULTS: Face and content validity were high. The test-retest showed good agreement and reliability (1 week and 6 months). Overall, construct validity was low to moderate, with higher values for concurrent validity, suggesting that some questions reflect symptom content not captured with regular Visual Analogue Scale pain/well-being. Responsiveness was low (small subgroup). Finally, the burden of symptoms in both seronegative and seropositive at risk individuals was high, with pain, stiffness and fatigue being the most common ones with a major impact on daily functioning. The FDR cohort (mostly healthy individuals) showed a lower burden of symptoms; however, the distribution of symptoms was similar. CONCLUSIONS: The SPARRA questionnaire has good psychometric properties and can add information to currently available clinical measures in individuals at risk of RA. The studied group had a high burden and impact of symptoms. Future studies should evaluate whether SPARRA data can improve the prediction of RA in at risk individuals.

15.
J Fam Econ Issues ; 39(2): 233-242, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29755247

RESUMO

Single parent families are at high risk of financial hardship which may impact on psychological wellbeing. This study explored the impact of financial hardship on wellbeing on 15 single parents. Semi-structured interviews were conducted and analysed using constructivist thematic analysis. Participants described food and fuel poverty, and the need to make sacrifices to ensure that children's basic needs were met. In some cases, participants went without food and struggled to pay bills. Isolation, anxiety, depression, paranoia, and suicidal thoughts were described. However, participants reported that psychological services not able to take the needs of single parents in to account. Support for single parents must acknowledge the impact of social circumstances and give more consideration economic drivers of distress.

16.
Patient Prefer Adherence ; 12: 489-497, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29670337

RESUMO

BACKGROUND: Rheumatoid arthritis (RA) causes painful joint inflammation and is incurable, but treatments control RA. Drug regimens are complex, and patients often do not take their medication as expected. Poor medication adherence can lead to poorly controlled disease and worse patient outcomes. Biologics treatments are expensive and require full engagement from patients. We have previously shown that patients from Black ethnic minority backgrounds do not fully engage into treatment plan. This study explored the patients' experiences in and satisfaction toward receiving information about biologics and future support preferences in South Asian patients with RA. METHODS: Twenty South Asian patients with RA from Royal Wolverhampton Hospitals NHS Trust and Central Manchester University Hospitals NHS Foundation Trust participated in individual semistructured interviews. Interviews were transcribed and data were analyzed by using thematic analysis approach. RESULTS: Four overarching themes describe the patients' experience in and satisfaction toward receiving information on biologics: 1) current provision of information regarding the "biologics journey" and understanding of RA: in this theme, non-English-speaking patients expressed heightened anxiety about stepping up to biologics; 2) experience and perceptions of biologics: many patients were positive about the biologic experience; however, there were patient-perceived delays in getting on to the biologics; 3) factors influencing willingness to try biologics: in this theme, a number of factors were identified including seeking advice from doctors abroad; and 4) recommendations on the desired information to fully understand the use of biologics: some patients valued group discussions, while others suggested receiving RA and biologic information through a video interaction. CONCLUSION: This novel study provides insight into South Asian RA patients' experiences in and satisfaction toward receiving information about biologics. South Asian patients with RA reported a range of perceptions about biologics and support preferences, many of which may not be shared with the non-South Asian population.

18.
BMC Rheumatol ; 2: 31, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30886981

RESUMO

BACKGROUND: There is increasing interest in the identification of people at risk of rheumatoid arthritis (RA) to monitor the emergence of early symptoms (and thus allow early therapy), offer lifestyle advice to reduce the impact of environmental risk factors and potentially offer preventive pharmacological treatment for those at high risk. Close biological relatives of people with RA are at an increased risk of developing RA and are therefore potential candidates for research studies, screening initiatives and preventive interventions. To ensure the success of approaches of this kind, a greater understanding of the perceptions of this group relating to preventive measures is needed. METHODS: Twenty-four first-degree relatives of patients with an existing diagnosis of RA from the UK, three from Germany and seven from Austria (age: 21-67 years) took part in semi-structured interviews exploring their perceptions of RA risk, preventive medicine and lifestyle changes to reduce RA risk. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. RESULTS: Many first-degree relatives indicated that they anticipated being happy to make lifestyle changes such as losing weight or changing their diet to modify their risk of developing RA. Participants further indicated that in order to make any lifestyle changes it would be useful to know their personal risk of developing RA. Others implied they would not contemplate making lifestyle changes, including stopping smoking, unless this would significantly reduce or eliminate their risk of developing RA. Many first-degree relatives had more negative perceptions about taking preventive medication to reduce their risk of RA, and listed concerns about potential side effects as one of the reasons for not wanting to take preventive medicines. Others would be more willing to consider drug interventions although some indicated that they would wish to wait until symptoms developed. CONCLUSIONS: Information targeted at those considered to be at risk of RA should contain information about RA, the extent to which risk can be quantified at an individual level and how risk levels may differ depending on whether early symptoms are present. The benefits (and risks) of lifestyle changes and pharmacological interventions as potential preventive measures should be clearly described.

19.
PLoS One ; 12(10): e0187272, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29088284

RESUMO

INTRODUCTION: Primary Sjögren's Syndrome (pSS) affects exocrine glands such as those producing the tear film, leading to dry and painful eyes, but is also associated with fatigue. The experience of fatigue in pSS, and its relationship with sicca symptoms, is poorly understood. METHODS: Twenty people diagnosed with pSS were recruited to participate in a semi-structured qualitative interview about their symptoms experience. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. RESULTS: People with pSS described physical tiredness, mental fatigue and ocular fatigue. Mental fatigue was characterised by difficulties in attention, particularly, the ability to follow conversations and short-term memory problems. Participants linked their experience of fatigue to feeling of depression, frustration, irritation and anxiety, and therefore, fatigue was suggested to have had a large impact on their psychological well-being. People with pSS also described a range of ocular symptoms including pain, dryness, and itching, which were compounded by fatigue. For some, eye fatigue was pervasive, and daily activities involving the eyes such as reading, using the computer and driving were impaired. In some cases, the level of ocular discomfort was so severe it prevented sleep, which in turn impacted on general fatigue levels. CONCLUSIONS: People with pSS experience fatigue in a range of ways; physical, mental and ocular fatigue were described. Fatigue was suggested to exacerbate other ocular symptoms, posed serious physical limitations and caused psychological distress. Further research into the nature of fatigue and ocular symptoms in pSS is required.


Assuntos
Astenopia/etiologia , Fadiga/etiologia , Síndrome de Sjogren/complicações , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto Jovem
20.
J Foot Ankle Surg ; 56(5): 917-921, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28579126

RESUMO

Jones fractures are among the most common fractures of the foot; however, much remains unknown about their etiology. The purpose of the present study was to further examine the risk factors of forefoot and hindfoot alignment on Jones fractures using an epidemiologic study design. We used a retrospective, matched, case-control study design. Cases consisted of patients with acute, isolated Jones fractures confirmed on plain film radiographs seen at our institute from January 2009 to December 2013. Patients presenting with pain unrelated to metatarsal fractures served as controls. Controls were matched to cases by age (±2 years), gender, and year of presentation. Weightbearing foot radiographs were assessed for 13 angular relationships by a single rater. Conditional multivariable logistic regression was used to identify important risk factors. Fifty patients with acute Jones fractures and 200 controls were included. The only significant variables in the final multivariable model were the metatarsus adductus angle (odds ratio [OR] 1.16, 95% confidence interval [CI] 1.08 to 1.25) and fourth/fifth intermetatarsal angle (OR 0.69, 95% CI 0.57 to 0.83)-both measures of static forefoot adduction. The presence of metatarsus adductus (defined as >15°) on foot radiographs was associated with a 2.4 times greater risk of a Jones fracture (adjusted OR 2.4, 95% CI 1.2 to 4.8). We have concluded that the risk of Jones fracture increases with an adducted forefoot posture. In our population, which consisted primarily of patients presenting after a fall (10 of 50; 20%) or misstep/inversion injury (19 of 50; 38%), the hindfoot alignment appeared to be a less important factor.


Assuntos
Antepé Humano/anormalidades , Fraturas Ósseas/etiologia , Ossos do Metatarso/lesões , Metatarso Varo/complicações , Adulto , Idoso , Estudos de Casos e Controles , Feminino , Antepé Humano/diagnóstico por imagem , Fraturas Ósseas/diagnóstico por imagem , Fraturas Ósseas/epidemiologia , Humanos , Incidência , Modelos Logísticos , Masculino , Ossos do Metatarso/diagnóstico por imagem , Metatarso Varo/diagnóstico por imagem , Pessoa de Meia-Idade , Análise Multivariada , Radiografia/métodos , Estudos Retrospectivos , Medição de Risco , Adulto Jovem
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