17 results on '"Stack, Rebecca J"'
Search Results
2. Perceptions of first-degree relatives of patients with rheumatoid arthritis about lifestyle modifications and pharmacological interventions to reduce the risk of rheumatoid arthritis development: a qualitative interview study
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Simons, Gwenda, Stack, Rebecca J, Stoffer-Marx, Michaela, Englbrecht, Matthias, Mosor, Erika, Buckley, Christopher D, Kumar, Kanta, Hansson, Mats, Hueber, Axel, Stamm, Tanja, Falahee, Marie, and Raza, Karim
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- 2018
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3. I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis.
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Mosor, Erika, Stoffer‐Marx, Michaela, Steiner, Günter, Raza, Karim, Stack, Rebecca J., Simons, Gwenda, Falahee, Marie, Skingle, Diana, Dobrin, Mircia, Schett, Georg, Englbrecht, Matthias, Smolen, Josef S., Kjeken, Ingvild, Hueber, Axel J., Stamm, Tanja A., and Stoffer-Marx, Michaela
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AUTOANTIBODIES ,RESEARCH ,RESEARCH methodology ,INTERVIEWING ,JOINT pain ,EVALUATION research ,MEDICAL cooperation ,QUALITATIVE research ,COMPARATIVE studies ,RHEUMATOID arthritis ,SYMPTOMS ,RESEARCH funding ,CHEMOPREVENTION - Abstract
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. [ABSTRACT FROM AUTHOR]- Published
- 2020
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4. Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project.
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Birch, Rebecca, Simons, Gwenda, Wähämaa, Heidi, McGrath, Catherine M., Johansson, Eva C., Skingle, Diana, Bayliss, Kerin, Starling, Bella, Gerlag, Danielle M., Buckley, Christopher D., Stack, Rebecca J., Raza, Karim, and Falahee, Marie
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TRANSLATIONAL research ,FORMATIVE evaluation ,RESEARCH evaluation ,RHEUMATOID arthritis ,MEDICAL sciences - Abstract
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. 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. [ABSTRACT FROM AUTHOR]
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- 2020
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5. UK--south Asian patients' experiences of and satisfaction toward receiving information about biologics in rheumatoid arthritis.
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Kumar, Kanta, Raizada, Sabrina R, Mallen, Christian D, and Stack, Rebecca J
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RHEUMATOID arthritis ,HEALTH of South Asians ,RHEUMATOID arthritis treatment ,PATIENT participation ,MEDICAL cooperation ,PATIENTS - Abstract
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. [ABSTRACT FROM AUTHOR]
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- 2018
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6. Patients' Perceptions of Their Relatives' Risk of Developing Rheumatoid Arthritis and of the Potential for Risk Communication, Prediction, and Modulation.
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Falahee, Marie, Simons, Gwenda, Buckley, Christopher D., Hansson, Mats, Stack, Rebecca J., and Raza, Karim
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RHEUMATOID arthritis diagnosis ,RHEUMATOID arthritis treatment ,ANTIRHEUMATIC agents ,FAMILIES & psychology ,BEHAVIOR ,COGNITION ,COMMUNICATION ,DISEASE susceptibility ,EMOTIONS ,GENEALOGY ,GENETICS ,GENETIC techniques ,HEALTH attitudes ,INTERVIEWING ,PATIENT psychology ,SENSORY perception ,QUALITY of life ,RHEUMATOID arthritis ,RISK assessment ,SMOKING ,PHENOTYPES ,FAMILY relations ,PSYCHOLOGY - Abstract
Objective: To understand the perspectives of patients with rheumatoid arthritis (RA) about the risk of their relatives developing RA in the future, and about communicating with their relatives concerning risk and its modulation.Methods: Twenty-one RA patients took part in semistructured interviews.Results: Participants reported willingness to communicate with relatives about their risk of developing RA, but described choosing which relatives to communicate with, on the basis of the relatives' perceived receptivity to such risk information. Participants described the potential for risk information to cause negative emotions. Some participants did not consider RA to be hereditable, and few reported smoking as a risk factor. Patients described a lack of public awareness about the causes of RA and the negative impact that RA has on the quality of life. Awareness of this negative impact was identified as an important driver for predictive and preventive strategies. Participants held positive perceptions of predictive testing for RA, though the results of predictive tests were conceptualized as having a high degree of accuracy. Negative views of predictive testing were associated with an appreciation of the probabilistic nature of risk information. Participants felt that their relatives would prefer lifestyle modification over medication as a risk reduction strategy.Conclusion: Information about risk factors for RA, and the potential impact of RA on the quality of life, is needed to support family communication about RA risk. Management of expectations is needed in relation to the probabilistic nature of risk information, and appropriate support should be provided for negative psychological outcomes. [ABSTRACT FROM AUTHOR]- Published
- 2017
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7. The pathway to consultation for rheumatoid arthritis: exploring anticipated actions between the onset of symptoms and face-to-face encounter with a healthcare professional.
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Simons, Gwenda, Lumley, Sophie, Falahee, Marie, Kumar, Kanta, Mallen, Christian D., Stack, Rebecca J., and Raza, Karim
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RHEUMATOID arthritis ,MEDICAL personnel ,SELF-management (Psychology) ,INTESTINAL cancer ,ANGINA pectoris ,JOINT abnormalities ,RHEUMATOID arthritis diagnosis ,COMPARATIVE studies ,DECISION making ,DIAGNOSIS ,RESEARCH methodology ,MEDICAL cooperation ,MEDICAL errors ,PATIENT-professional relations ,MEDICAL referrals ,RESEARCH ,RESEARCH funding ,HEALTH self-care ,QUALITATIVE research ,EVALUATION research ,INFORMATION-seeking behavior ,PATIENTS' attitudes ,PSYCHOLOGY - Abstract
Background: When people first experience symptoms of rheumatoid arthritis (RA) they often delay seeking medical attention resulting in delayed diagnosis and treatment. This research assesses behaviours people might engage in prior to, or instead of, seeking medical attention and compares these with behaviours related to illnesses which are better publicised.Methods: Thirty-one qualitative interviews with members of the general public explored intended actions in relation to two hypothetical RA vignettes (with and without joint swelling) and two non-RA vignettes (bowel cancer and angina). The interviews were audio-recorded and transcribed. Analysis focused on intended information gathering and other self-management behaviours in the interval between symptom onset and help-seeking.Results: Participants were more likely to envision self-managing symptoms when confronted with the symptoms of RA compared to the other vignettes. Participants would look for information to share responsibility for decision making and get advice and reassurance. Others saw no need for information seeking, perceived the information available as untrustworthy or, particularly in the case of bowel cancer and angina, would not want to delay seeking medical attention. Participants further anticipated choosing not to self-manage the symptoms; actively monitoring the symptoms (angina/ bowel cancer) or engaging in self-treatment of symptom(s).Discussion: These results help define targets for interventions to increase appropriate help-seeking behaviour for people experiencing the initial symptoms of RA, such as educational interventions directed at allied healthcare professionals from whom new patients may seek information on self-management techniques, or the development of authoritative and accessible informational resources for the general public. [ABSTRACT FROM AUTHOR]- Published
- 2017
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8. Symptom Recognition and Perceived Urgency of Help-Seeking for Rheumatoid Arthritis and Other Diseases in the General Public: A Mixed Method Approach.
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Simons, Gwenda, Belcher, John, Morton, Chris, Kumar, Kanta, Falahee, Marie, Mallen, Christian D., Stack, Rebecca J., and Raza, Karim
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RECTUM tumors ,RHEUMATOID arthritis diagnosis ,RHEUMATOID arthritis ,COLON tumors ,ANGINA pectoris ,SYMPTOMS ,EXPERIMENTAL design ,HEALTH attitudes ,RESEARCH funding ,QUALITATIVE research ,SELF diagnosis ,PSYCHOLOGY ,DIAGNOSIS - Abstract
Objective: Clinical outcomes in rheumatoid arthritis (RA) are improved if the disease is treated early. However, treatment is often significantly delayed as a result of delayed help-seeking by patients who fail to recognize its symptoms or the need for rapid medical attention. Two studies were conducted to investigate the role of symptom recognition in help-seeking for the symptoms of RA, and compared this to symptom recognition and help-seeking in angina and bowel cancer.Methods: A qualitative interview study with 31 individuals and a survey of 1,088 members of the general public (all without RA) were conducted. Both studies used vignettes describing the symptoms of RA, bowel cancer, and angina. Participants made causal attributions and rated the perceived seriousness of the symptoms and the urgency with which they would seek medical help if confronted with these symptoms.Results: Only a small proportion of participants in both studies recognized the symptoms of RA, whereas the symptoms of bowel cancer and angina were readily recognized by many participants and considered to be more serious and to require more rapid medical attention (Z = 14.7-34.2, P < 0.001).Conclusion: Accurate symptom attribution and the perception that symptoms are indicative of a serious underlying condition are both important drivers for rapid help-seeking. In the case of angina and bowel cancer, recent campaigns have promoted not only recognition of symptoms and their seriousness, but also emphasized the consequences of not seeking timely help. Our results suggest that these consequences should also be addressed in any public health campaign for RA. [ABSTRACT FROM AUTHOR]- Published
- 2017
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9. Qualitative Exploration of Illness Perceptions of Rheumatoid Arthritis in the General Public.
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Simons, Gwenda, Mason, Anna, Falahee, Marie, Kumar, Kanta, Mallen, Christian D., Raza, Karim, and Stack, Rebecca J.
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CONCEPTUAL structures ,HEALTH behavior ,HELP-seeking behavior ,INTERVIEWING ,RHEUMATOID arthritis ,SELF-management (Psychology) ,ATTITUDES toward illness - Abstract
Treating patients with rheumatoid arthritis (RA) within three months of symptom onset leads to significantly improved outcomes. However, many people delay seeking medical attention. In order to understand the reasons for this delay, it is important to have a thorough understanding of public perceptions about RA. The current study investigated these perceptions using the Self-Regulation Model (SRM) as a framework to explain how health behaviour is influenced by illness perceptions (prototypes) through qualitative interviews with 15 members of the public without RA. Interviews were audio-recorded, transcribed and analysed using framework analysis based on SRM illness perceptions. Both accurate and inaccurate perceptions about the identity, causes, consequences, controllability and timeline of RA were identified. This highlights opportunities to enhance public knowledge about RA. These findings further support the utility of exploring prototypical beliefs of illness, suggesting their potential role in influencing help-seeking behaviours and identifying probable drivers/barriers to early presentation. © 2016 The Authors Musculoskeletal Care Published by John Wiley & Sons Ltd. [ABSTRACT FROM AUTHOR]
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- 2017
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10. Impact of Symptoms on Daily Life in People at Risk of Rheumatoid Arthritis.
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Tuyl, Lilian H. D., Stack, Rebecca J., Sloots, Maurits, Stadt, Lotte A., Hoogland, Wijnanda, Maat, Bertha, Raza, Karim, and Schaardenburg, Dirkjan
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INTERVIEWING , *RESEARCH methodology , *RHEUMATOID arthritis , *PSYCHOLOGICAL stress , *QUALITATIVE research , *ACTIVITIES of daily living , *THEMATIC analysis , *DATA analysis software , *JOINT pain , *SYMPTOMS - Abstract
The article discusses a study describing the impact of symptoms on daily life of people at an increased risk of rheumatoid arthritis (RA). Fifteen individuals joined in 3 focus group discussions and were made up of 11 females and 4 males with mean age of 54 years. It concludes that anti-cycle citrillinated peptide antibody-positive individuals with musculoskeletal symptoms referred to a rheumatologists experience symptoms with substantial physical and psychological impact on their daily life.
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- 2016
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11. The development and initial validation of a questionnaire to measure help-seeking behaviour in patients with new onset rheumatoid arthritis.
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Stack, Rebecca J., Mallen, Christian D., Deighton, Chris, Kiely, Patrick, Shaw, Karen L., Booth, Alison, Kumar, Kanta, Thomas, Susan, Rowan, Ian, Horne, Rob, Nightingale, Peter, Herron-Marx, Sandy, Jinks, Clare, and Raza, Karim
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RHEUMATOID arthritis diagnosis , *RHEUMATOID arthritis treatment , *BEHAVIOR , *COMMUNICATION , *HEALTH services accessibility , *RESEARCH methodology , *MEDICAL care , *PATIENTS , *QUESTIONNAIRES , *RESEARCH funding , *RHEUMATOID arthritis , *EARLY medical intervention , *DESCRIPTIVE statistics - Abstract
The article presents the study of developing, testing the reliability, and validating test questionnaire to evaluate help-seeking behaviour among patients with rheumatoid arthritis (RA). Methods were designed which include extraction, test-retest survey, and organization of items in various themes including self-management, causal beliefs, and early symptom experience. Results were outlined and conclude the significant RA patients involvement on the development and validation of questionnaire.
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- 2015
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12. Social interactions at the onset of rheumatoid arthritis and their influence on help-seeking behaviour: A qualitative exploration.
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Tiwana, Rumandeep, Rowland, John, Fincher, Marie, Raza, Karim, and Stack, Rebecca J.
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SOCIAL interaction ,RHEUMATOID arthritis treatment ,HELP-seeking behavior ,THEMATIC analysis ,QUALITATIVE chemical analysis - Abstract
Objectives To explore how social interactions at the onset of rheumatoid arthritis ( RA) influence help-seeking behaviour from the perspectives of those with RA and their significant others (family and friends). Methods Nineteen semi-structured qualitative interviews were undertaken with people recently diagnosed with RA and their significant others. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Results Significant others' initial appraisals of symptoms led them to provide practical support with daily activities rather than advice to seek help. People with RA described difficulties in communicating the severity of their symptoms and often attempted to hide their symptoms from others. Significant others also reacted negatively, expressing disbelief and dismissing symptoms. On occasion, early symptoms were even described as the catalyst for the breakdown of relationships. On reflection, significant others expressed guilt about their initial reactions and wished that they had recognized the need for intervention earlier. When symptoms had advanced and were more obvious, significant others often strongly advised that help should be sought and, in some cases, physically escorted the patient to their medical appointment. In many instances, people with RA described significant others as the catalyst for eventually seeking help. Conclusions Significant others play an important role in influencing help-seeking behaviour; this has implications for theoretical models of help-seeking and the development of help-seeking interventions. A negative consequence of social interactions resulted from a lack of understanding and knowledge about RA among significant others, highlighting the need for greater public awareness about the early symptoms of RA. [ABSTRACT FROM AUTHOR]
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- 2015
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13. Symptom complexes in patients with seropositive arthralgia and in patients newly diagnosed with rheumatoid arthritis: a qualitative exploration of symptom development.
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Stack, Rebecca J., van Tuyl, Lilian H. D., Sloots, Maurits, van de Stadt, Lotte A., Hoogland, Wijnanda, Maat, Bertha, Mallen, Christian D., Tiwana, Rumandeep, Raza, Karim, and van Schaardenburg, Dirkjan
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ACADEMIC medical centers , *ALGORITHMS , *BLOOD testing , *INTERVIEWING , *RESEARCH funding , *RHEUMATOID arthritis , *SEVERITY of illness index , *JOINT pain , *DESCRIPTIVE statistics , *SYMPTOMS - Abstract
Objective. The aim of this study was to explore symptoms and symptom development during the earliest phases of RA in patients with seropositive arthralgia and patients newly diagnosed with RA.Methods. Interviews were conducted with 15 seropositive patients (anti-CCP positive, and often with arthralgia) and 11 newly presenting RA patients [classified according to the 2010 ACR/European League Against Rheumatism (EULAR) criteria]. Feedback procedures shared the experiences of seropositive arthralgia patients with early RA patients and vice versa. Data were analysed using thematic analysis.Results. Symptoms common to both groups included joint pain, psychological distress, muscle cramps, abnormal skin sensations, stiffness, loss of motor control, weakness, fatigue and sleeping difficulties. Also, patterns of symptom evolution and the order of symptom development were described. Seropositive arthralgia patients described pain as annoying, while RA patients described how the severity of pain intensified before diagnosis, to the point where symptoms were psychologically distressing. Patients with seropositive arthralgia described reddening of the skin and burning sensations that they felt were indicative of the onset of swelling. Intense pain appeared to precede the onset of swelling for those with RA, which was often palindromic and travelled between joints until it later became persistent.Conclusion. This study highlights the breadth of symptoms that constitute the earliest phases of RA. Further research is needed to develop measures of symptom patterns and clusters to allow the predictive utility of symptoms to be assessed and to allow the integration of aspects of the patient’s history into evidence-based investigative and management algorithms for use in primary and secondary care. [ABSTRACT FROM AUTHOR]
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- 2014
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14. General practitioners' perspectives on campaigns to promote rapid help-seeking behaviour at the onset of rheumatoid arthritis.
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Stack, Rebecca J., Llewellyn, Zara, Deighton, Chris, Kiely, Patrick, Mallen, Christian D., and Raza, Karim
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HEALTH promotion , *FOCUS groups , *HELP-seeking behavior , *GENERAL practitioners , *PUBLIC health , *RESEARCH funding , *RHEUMATOID arthritis , *TIME , *THEMATIC analysis , *DATA analysis software , *PHYSICIANS' attitudes - Abstract
Objective. To explore general practitioners' (GPs') perspectives on public health campaigns to encourage people with the early symptoms of rheumatoid arthritis (RA) to seek medical help rapidly. Design. Nineteen GPs participated in four semi-structured focus groups. Focus groups were audio-recorded, transcribed verbatim, and analysed using thematic analysis. Results. GPs recognised the need for the early treatment of RA and identified that facilitating appropriate access to care was important. However, not all held the view that a delay in help seeking was a clinically significant issue. Furthermore, many were concerned that the early symptoms of RA were often non-specific, and that current knowledge about the nature of symptoms at disease onset was inadequate to inform the content of a help-seeking campaign. They argued that a campaign might not be able to specifically target those who need to present urgently. Poorly designed campaigns were suggested to have a negative impact on GPs' workloads, and would 'clog up' the referral pathway for genuine cases of RA. Conclusions. GPs were supportive of strategies to improve access to Rheumatological care and increase public awareness of RA symptoms. However, they have identified important issues that need to be considered in developing a public health campaign that forms part of an overall strategy to reduce time to treatment for patients with new onset RA. This study highlights the value of gaining GPs' perspectives before launching health promotion campaigns. [ABSTRACT FROM AUTHOR]
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- 2014
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15. Health-care professionals' perceptions of interacting with patients of South Asian origin attending early inflammatory arthritis clinics.
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Kumar, Kanta, Stack, Rebecca J, Adebajo, Ade, and Adams, Jo
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MEDICAL personnel ,RHEUMATOID arthritis ,RHEUMATOLOGY - Abstract
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. [ABSTRACT FROM AUTHOR]
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- 2019
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16. Experiences of South Asian patients in early inflammatory arthritis clinic: a qualitative interview study.
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Kumar, Kanta, Reehal, Joti, Stack, Rebecca J, Adebajo, Ade, and Adams, Jo
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RHEUMATOID arthritis ,MEDICAL personnel ,HEALTH information services - Abstract
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. [ABSTRACT FROM AUTHOR]
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- 2019
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17. Predictors of the likelihood that patients with rheumatoid arthritis will communicate information about rheumatoid arthritis risk to relatives: A quantitative assessment.
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Wells, Imogen, Zemedikun, Dawit T., Simons, Gwenda, Stack, Rebecca J., Mallen, Christian D., Raza, Karim, and Falahee, Marie
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RHEUMATOID arthritis , *FAMILY communication , *PREDICTIVE tests , *RISK communication , *RELATIVES - Abstract
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. • RA patients were likely to communicate about RA risk to their relatives. • Patients were more likely to communicate RA risk to their children vs siblings. • Preferences for health autonomy/ empowerment increased family risk communication. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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