Publications by authors named "Rebecca Stack"

49 Publications

Periocular Presentation of Solitary Plasmacytomas and Multiple Myeloma.

Ophthalmic Plast Reconstr Surg 2021 Jul 21. Epub 2021 Jul 21.

Orbital Service, Moorfields Eye Hospital, London, United Kingdon.

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.
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http://dx.doi.org/10.1097/IOP.0000000000002023DOI Listing
July 2021

Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project.

Res Involv Engagem 2020 19;6. Epub 2020 Feb 19.

1Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, B15 2TT UK.

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 - owards arly biomarkers in rthritis anagement) 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: 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' (owards arly biomarkers in rthritis anagement) 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. 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. 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. 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.
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http://dx.doi.org/10.1186/s40900-020-0178-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7031919PMC
February 2020

Health-care professionals' perceptions of interacting with patients of South Asian origin attending early inflammatory arthritis clinics.

Rheumatol Adv Pract 2019 29;3(2):rkz042. Epub 2019 Oct 29.

School of Health Sciences, Faculty of Environment and Life Sciences, University of Southampton, Southampton, UK.

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.
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http://dx.doi.org/10.1093/rap/rkz042DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6862933PMC
October 2019

Experiences of South Asian patients in early inflammatory arthritis clinic: a qualitative interview study.

Rheumatol Adv Pract 2019 4;3(2):rkz017. Epub 2019 Jul 4.

School of Health Sciences, Faculty of Environment and Life Sciences, University of Southampton, Southampton, UK.

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.
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http://dx.doi.org/10.1093/rap/rkz017DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6735789PMC
July 2019

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.

BMC Rheumatol 2018 6;2:31. Epub 2018 Nov 6.

1Institute for Inflammation and Aging, Rheumatology Research Group, College of Medical and Dental Sciences, University of Birmingham, Birmingham, B15 2TT UK.

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.
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http://dx.doi.org/10.1186/s41927-018-0038-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6390593PMC
November 2018

Delays between the onset of symptoms and first rheumatology consultation in patients with rheumatoid arthritis in the UK: an observational study.

BMJ Open 2019 03 4;9(3):e024361. Epub 2019 Mar 4.

Institute of Inflammation and Ageing, University of Birmingham, Birmingham, UK.

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.
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http://dx.doi.org/10.1136/bmjopen-2018-024361DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6429945PMC
March 2019

I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis.

Arthritis Care Res (Hoboken) 2020 03;72(3):360-368

Medical University of Vienna and Ludwig Boltzmann Cluster Arthritis and Rehabilitation, Vienna, Austria.

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.
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http://dx.doi.org/10.1002/acr.23841DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7064954PMC
March 2020

Chronic red eye-think outside the eye.

N Z Med J 2018 11 30;131(1486):41-44. Epub 2018 Nov 30.

Ophthalmologist, Canterbury District Health Board, Christchurch.

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November 2018

Colloidal silver optic neuropathy.

N Z Med J 2018 10 5;131(1483):63-65. Epub 2018 Oct 5.

Canterbury Eye Service, Canterbury District Health Board, Christchurch.

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October 2018

Searching for a prodrome for rheumatoid arthritis in the primary care record: A case-control study in the clinical practice research datalink.

Semin Arthritis Rheum 2019 04 23;48(5):815-820. Epub 2018 Jun 23.

Research Institute for Primary Care & Health Sciences, David Weatherall Building, Keele University, Keele, Staffordshire ST5 5BG, UK.

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.
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http://dx.doi.org/10.1016/j.semarthrit.2018.06.008DOI Listing
April 2019

Initial validation and results of the Symptoms in Persons At Risk of Rheumatoid Arthritis (SPARRA) questionnaire: a EULAR project.

RMD Open 2018 21;4(1):e000641. Epub 2018 May 21.

Amsterdam Rheumatology and Immunology Center, Reade, Amsterdam, The Netherlands.

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.
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http://dx.doi.org/10.1136/rmdopen-2017-000641DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5976102PMC
May 2018

The Impact of Financial Hardship on Single Parents: An Exploration of the Journey From Social Distress to Seeking Help.

J Fam Econ Issues 2018 17;39(2):233-242. Epub 2017 Oct 17.

Department of Psychology, School of Social Sciences, Nottingham Trent University, Nottingham, UK.

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.
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http://dx.doi.org/10.1007/s10834-017-9551-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5932102PMC
October 2017

UK-South Asian patients' experiences of and satisfaction toward receiving information about biologics in rheumatoid arthritis.

Patient Prefer Adherence 2018 4;12:489-497. Epub 2018 Apr 4.

School of Social Sciences, Nottingham Trent University, Nottingham, UK.

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.
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http://dx.doi.org/10.2147/PPA.S153741DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5894650PMC
April 2018

The blinding thyroid gland.

Orbit 2018 10 17;37(5):393-394. Epub 2018 Jan 17.

a Ophthalmology Department of Christchurch Hospital , Christchurch , New Zealand.

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http://dx.doi.org/10.1080/01676830.2017.1423355DOI Listing
October 2018

A qualitative exploration of physical, mental and ocular fatigue in patients with primary Sjögren's Syndrome.

PLoS One 2017 31;12(10):e0187272. Epub 2017 Oct 31.

Centre for Translational Inflammation Research, University of Birmingham, Birmingham, United Kingdom.

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.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0187272PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5663496PMC
November 2017

The pathway to consultation for rheumatoid arthritis: exploring anticipated actions between the onset of symptoms and face-to-face encounter with a healthcare professional.

BMC Musculoskelet Disord 2017 Jun 14;18(1):258. Epub 2017 Jun 14.

Institute of Inflammation and Ageing, College of Medical and Dental Sciences, The University of Birmingham, Birmingham, UK; Sandwell and West Birmingham Hospitals National Health Service (NHS) Trust, Birmingham, UK.

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.
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http://dx.doi.org/10.1186/s12891-017-1619-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5471998PMC
June 2017

Forefoot Adduction Is a Risk Factor for Jones Fracture.

J Foot Ankle Surg 2017 Sep - Oct;56(5):917-921. Epub 2017 May 31.

CEO, Weil Foot and Ankle Institute, Des Plaines, IL.

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.
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http://dx.doi.org/10.1053/j.jfas.2017.04.017DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5572316PMC
June 2018

Patients' Perceptions of Their Relatives' Risk of Developing Rheumatoid Arthritis and of the Potential for Risk Communication, Prediction, and Modulation.

Arthritis Care Res (Hoboken) 2017 10 6;69(10):1558-1565. Epub 2017 Sep 6.

University of Birmingham, and Sandwell and West Birmingham Hospitals NHS Trust, Birmingham, UK.

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.
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http://dx.doi.org/10.1002/acr.23179DOI Listing
October 2017

Standardisation of labial salivary gland histopathology in clinical trials in primary Sjögren's syndrome.

Ann Rheum Dis 2017 Jul 13;76(7):1161-1168. Epub 2016 Dec 13.

Rheumatology Research Group and Arthritis Research UK Rheumatoid Arthritis Pathogenesis Centre of Excellence (RACE), University of Birmingham, Birmingham, UK.

Labial salivary gland (LSG) biopsy is used in the classification of primary Sjögren's syndrome (PSS) and in patient stratification in clinical trials. It may also function as a biomarker. The acquisition of tissue and histological interpretation is variable and needs to be standardised for use in clinical trials. A modified European League Against Rheumatism consensus guideline development strategy was used. The steering committee of the ad hoc working group identified key outstanding points of variability in LSG acquisition and analysis. A 2-day workshop was held to develop consensus where possible and identify points where further discussion/data was needed. These points were reviewed by a subgroup of experts on PSS histopathology and then circulated via an online survey to 50 stakeholder experts consisting of rheumatologists, histopathologists and oral medicine specialists, to assess level of agreement (0-10 scale) and comments. Criteria for agreement were a mean score ≥6/10 and 75% of respondents scoring ≥6/10. Thirty-nine (78%) experts responded and 16 points met criteria for agreement. These points are focused on tissue requirements, identification of the characteristic focal lymphocytic sialadenitis, calculation of the focus score, identification of germinal centres, assessment of the area of leucocyte infiltration, reporting standards and use of prestudy samples for clinical trials. We provide standardised consensus guidance for the use of labial salivary gland histopathology in the classification of PSS and in clinical trials and identify areas where further research is required to achieve evidence-based consensus.
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http://dx.doi.org/10.1136/annrheumdis-2016-210448DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5530351PMC
July 2017

Symptom Recognition and Perceived Urgency of Help-Seeking for Rheumatoid Arthritis and Other Diseases in the General Public: A Mixed Method Approach.

Arthritis Care Res (Hoboken) 2017 05 10;69(5):633-641. Epub 2017 Apr 10.

University of Birmingham, and Sandwell and West Birmingham Hospitals NHS Trust, Birmingham, UK.

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.
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http://dx.doi.org/10.1002/acr.22979DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5518890PMC
May 2017

Perceptions of risk and predictive testing held by the first-degree relatives of patients with rheumatoid arthritis in England, Austria and Germany: a qualitative study.

BMJ Open 2016 06 29;6(6):e010555. Epub 2016 Jun 29.

Institute for Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK Department of Rheumatology, Sandwell & West Birmingham Hospitals NHS Trust, Birmingham, UK.

Objectives: The family members of patients with rheumatoid arthritis (RA) are at increased risk of developing RA and are potential candidates for predictive testing. This study explored the perceptions of first-degree relatives of people with RA about being at risk of RA and engaging in predictive testing.

Methods: 34 first-degree relatives (siblings and offspring) of patients with RA from the UK, Germany and Austria participated in semistructured interviews about their perceptions of RA risk and the prospect of predictive testing. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis.

Results: First-degree relatives were aware of their susceptibility to RA, but were unsure of the extent of their risk. When considering their future risk, some relatives were concerned about the potential impact that RA would have on their lives. Relatives were concerned that knowing their actual risk would increase their anxiety and would affect decisions about their future. Also, relatives were concerned about the levels of uncertainty associated with predictive testing. Those in favour of knowing their future risk felt that they would need additional support to understand the risk information and cope with the emotional impact of this information.

Conclusions: Identifying individuals at risk of RA may allow targeted interventions to reduce the risk and consequence of future disease; however, relatives have concerns about predictive testing and risk information. The development of strategies to quantify and communicate risk needs to take these views into account and incorporate approaches to mitigate concerns and minimise the psychological impact of risk information.
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http://dx.doi.org/10.1136/bmjopen-2015-010555DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4932277PMC
June 2016

Understanding adherence-related beliefs about medicine amongst patients of South Asian origin with diabetes and cardiovascular disease patients: a qualitative synthesis.

BMC Endocr Disord 2016 May 26;16(1):24. Epub 2016 May 26.

Centre for Translational Inflammation Research, The School of Immunity and Infection, University of Birmingham, Birmingham, B15 2TT, UK.

Background: Prevalence of diabetes and cardiovascular (CVD) disease amongst UK South Asians is higher than in the general population. Non-adherence to medicines may lead to poor clinical outcomes for South Asian patients with diabetes and CVD. To understand the decision making processes associated with taking medicines, a qualitative systematic meta-synthesis exploring medicine taking behaviours, and beliefs was undertaken.

Methods: Four databases (Medline, Embase, Science Citation Index and CINAHL) were searched to identify qualitative studies of South Asian patients taking diabetic medicines. Data were thematic coded and synthesised.

Results: The following themes were identified: [1] beliefs about the need for and efficacy of medicines; [2] toxicity of medicines and polypharmacy; [3] the necessity of traditional remedies versus "western medicines"; [4] stigma and social support; and [5] communication.

Conclusions: South Asians described cultural social stigma associated with diabetes and reported fears about drug toxicity as barriers to taking medicines. Cultural beliefs about traditional remedies and interactions with healthcare professionals also appeared to play a role in the way people made decisions about medicines. Advice should be tailored provided to South Asian patients highlighting the long term consequences of diabetes and CVD.
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http://dx.doi.org/10.1186/s12902-016-0103-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4880880PMC
May 2016

Patient involvement in a qualitative meta-synthesis: lessons learnt.

Res Involv Engagem 2016 12;2:18. Epub 2016 May 12.

Centre for Translational Inflammation Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.

Plain English Summary: Patients and researchers must work together to improve the relevance and quality of research. Qualitative systematic reviews synthesise findings from a range of published qualitative studies to identify common themes, and can make recommendations for practice or future research. The process of conducting a systemic review offers multiple opportunities for patient involvement.This paper explores the reflections of patient research partners involved in a qualitative systematic review. Patient partners were asked how their experience of the review process could be used to improve patient involvement in future qualitative systematic reviews. Following involvement in a systematic review an exploratory questionnaire was emailed to eight patient research partners. Open ended questions focussed on the training they had received, whether they had enjoyed taking part and how the process could be improved. Patients stated that they needed clear instructions and examples of how to take part in the systematic review. Face to face training was preferred, and it was important that patients were given enough time to complete the task. The study led to benefits for patients including gaining new skills and improved confidence. Each patient also wanted to know how their comments had influenced the paper and wanted feedback on whether they needed any further training. Through reflection with patient partners, recommendations for the involvement of patients in qualitative systematic reviews were developed to allow researchers to successfully involve patients in the review process.

Abstract: Patient involvement in systematic reviews is seen as good practice, yet there is a lack of accessible standardised training for those involved. The aim of this paper is to inform the evidence base on effective ways of involving patients in a qualitative meta-synthesis. This process is evaluated and reflected by patient research partners (PRPs) who provided accounts of their experience. An open ended questionnaire was emailed to eight PRPs who had participated in the analysis of a qualitative meta-synthesis. Questions focussed on the training they received, their experience of coding data and identifying themes, whether they enjoyed taking part in the project and how the process could be improved. Our findings point to the importance of detailed training for PRPs, using plain English and clear examples of analysis techniques to improve confidence in engaging with meta-synthesis methods. Face to face training was preferred in order to discuss a PRP's understanding of the task ahead. Time is an important consideration as PRPs often complete this work on top of their daily commitments and need the time and on-going support to be able to immerse themselves in the data. A focus group was a useful way to discuss the themes but it is important that PRPs understand how their comments have influenced the paper. PRPs reported benefits that included building new skills, improving confidence and gaining knowledge. They also asked for feedback on their contribution and any further training needs. All PRPs said they would take part in a meta-synthesis in the future as long as these considerations were addressed. The recommendations for practice identified in this paper, and guidelines for training, can assist researchers in collaborating with PRPs when developing and conducting a qualitative meta-synthesis.
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http://dx.doi.org/10.1186/s40900-016-0032-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5611647PMC
May 2016

Qualitative Exploration of Illness Perceptions of Rheumatoid Arthritis in the General Public.

Musculoskeletal Care 2017 03 1;15(1):13-22. Epub 2016 Feb 1.

University of Birmingham, Birmingham, UK.

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.
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http://dx.doi.org/10.1002/msc.1135DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4903170PMC
March 2017

An algorithm to identify rheumatoid arthritis in primary care: a Clinical Practice Research Datalink study.

BMJ Open 2015 Dec 23;5(12):e009309. Epub 2015 Dec 23.

Arthritis Research UK Primary Care Centre, Institute for Primary Care & Health Sciences, Keele University, Keele, UK.

Objective: Rheumatoid arthritis (RA) is a multisystem, inflammatory disorder associated with increased levels of morbidity and mortality. While much research into the condition is conducted in the secondary care setting, routinely collected primary care databases provide an important source of research data. This study aimed to update an algorithm to define RA that was previously developed and validated in the General Practice Research Database (GPRD).

Methods: The original algorithm consisted of two criteria. Individuals meeting at least one were considered to have RA. Criterion 1: ≥ 1 RA Read code and a disease modifying antirheumatic drug (DMARD) without an alternative indication. Criterion 2: ≥ 2 RA Read codes, with at least one 'strong' code and no alternative diagnoses. Lists of codes for consultations and prescriptions were obtained from the authors of the original algorithm where these were available, or compiled based on the original description and clinical knowledge. 4161 people with a first Read code for RA between 1 January 2010 and 31 December 2012 were selected from the Clinical Practice Research Datalink (CPRD, successor to the GPRD), and the criteria applied.

Results: Code lists were updated for the introduction of new Read codes and biological DMARDs. 3577/4161 (86%) of people met the updated algorithm for RA, compared to 61% in the original development study. 62.8% of people fulfilled both Criterion 1 and Criterion 2.

Conclusions: Those wishing to define RA in the CPRD, should consider using this updated algorithm, rather than a single RA code, if they wish to identify only those who are most likely to have RA.
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http://dx.doi.org/10.1136/bmjopen-2015-009309DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4691776PMC
December 2015

Impact of Symptoms on Daily Life in People at Risk of Rheumatoid Arthritis.

Musculoskeletal Care 2016 09 17;14(3):169-73. Epub 2015 Dec 17.

Amsterdam Rheumatology and Immunology Center, Reade and Academic Medical Center, Amsterdam, the Netherlands.

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http://dx.doi.org/10.1002/msc.1127DOI Listing
September 2016

Social interactions at the onset of rheumatoid arthritis and their influence on help-seeking behaviour: A qualitative exploration.

Br J Health Psychol 2015 Sep 27;20(3):648-61. Epub 2015 Feb 27.

Centre for Translational Inflammation Research, University of Birmingham, UK.

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.
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http://dx.doi.org/10.1111/bjhp.12134DOI Listing
September 2015

A qualitative investigation of the barriers to help-seeking among members of the public presented with symptoms of new-onset rheumatoid arthritis.

J Rheumatol 2015 Apr 1;42(4):585-92. Epub 2015 Feb 1.

From the Centre for Translational Inflammation Research, School of Immunity and Infection, College of Medical and Dental Sciences, The University of Birmingham; Sandwell and West Birmingham Hospitals National Health Service (NHS) Trust, Birmingham; Arthritis Research United Kingdom Primary Care Centre, Research Institute for Primary Care and Health Sciences, Keele University, Keele; and the Faculty of Medical and Human Sciences, School of Nursing, University of Manchester, Manchester, UK.G. Simons, Research Fellow, PhD; R.J. Stack, Research Fellow, PhD, Centre for Translational Inflammation Research, School of Immunity and Infection, College of Medical and Dental Sciences, The University of Birmingham; C.D. Mallen, Professor of General Practice Research, PhD, Arthritis Research UK Primary Care Centre, Research Institute for Primary Care and Health Sciences, Keele University; K. Kumar, National Institute for Health Research Clinical Doctoral Research Fellow, MSc, Centre for Translational Inflammation Research, School of Immunity and Infection, College of Medical and Dental Sciences, The University of Birmingham, and the Faculty of Medical and Human Sciences, School of Nursing, University of Manchester; K. Raza, Professor of Clinical Rheumatology, Honorary Consultant Rheumatologist, PhD, Centre for Translational Inflammation Research, School of Immunity and Infection, College of Medical and Dental Sciences, The University of Birmingham, and the Sandwell and West Birmingham Hospitals NHS Trust.

Objective: Treating patients with rheumatoid arthritis (RA) within 3 months of symptom onset leads to significantly improved clinical outcomes. However, many people with RA symptoms wait a long time before seeking medical attention. To develop effective health interventions to encourage people to seek help early, it is important to understand what the general public knows about RA, how they would react to the symptoms of RA, and what might delay help-seeking.

Methods: Qualitative interviews were conducted with 38 members of the general public (32 women) without any form of inflammatory arthritis about their perceptions of RA symptoms and decisions to seek help were they to experience such symptoms. The interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis.

Results: A number of barriers and drivers to help-seeking were identified and grouped into 5 themes: perceived causes of symptoms; factors related to presentation, location, and experience of symptoms; perceived effect of symptoms on daily life; self-management of symptoms; and general practitioner-related drivers and barriers.

Conclusion: To our knowledge, our study is the first to investigate barriers to and drivers of help-seeking in response to the onset of RA symptoms in individuals without a diagnosis of RA. It has revealed a number of additional factors (e.g., the importance of the location of the symptoms) besides those previously identified in retrospective studies of patients with RA. Together with the data from previous research, these findings will help inform future health interventions aimed at increasing knowledge of RA and encouraging help-seeking.
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http://dx.doi.org/10.3899/jrheum.140913DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4544743PMC
April 2015

The development and initial validation of a questionnaire to measure help-seeking behaviour in patients with new onset rheumatoid arthritis.

Health Expect 2015 Dec 3;18(6):2340-55. Epub 2014 Jun 3.

Centre for Translational Inflammation Research, School of Infection and Immunity, University of Birmingham, Birmingham, UK.

Background: Early treatment for rheumatoid arthritis (RA) is vital. However, people often delay in seeking help at symptom onset. An assessment of the reasons behind patient delay is necessary to develop interventions to promote rapid consultation.

Objective: Using a mixed methods design, we aimed to develop and test a questionnaire to assess the barriers to help seeking at RA onset.

Design: Questionnaire items were extracted from previous qualitative studies. Fifteen people with a lived experience of arthritis participated in focus groups to enhance the questionnaire's face validity. The questionnaire was also reviewed by groups of multidisciplinary health-care professionals. A test-retest survey of 41 patients with newly presenting RA or unclassified arthritis assessed the questionnaire items' intraclass correlations.

Results: During focus groups, participants rephrased questions, added questions and deleted items not relevant to the questionnaire's aims. Participants organized items into themes: early symptom experience, initial reactions to symptoms, self-management behaviours, causal beliefs, involvement of significant others, pre-diagnosis knowledge about RA, direct barriers to seeking help and relationship with GP. The test-retest survey identified seven items (out of 79) with low intraclass correlations which were removed from the final questionnaire.

Conclusion: The involvement of people with a lived experience of arthritis and multidisciplinary health-care professionals in the preliminary validation of the DELAY (delays in evaluating arthritis early) questionnaire has enriched its development. Preliminary assessment established its reliability. The DELAY questionnaire provides a tool for researchers to evaluate individual, cultural and health service barriers to help-seeking behaviour at RA onset.
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http://dx.doi.org/10.1111/hex.12203DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5810627PMC
December 2015

Symptom complexes in patients with seropositive arthralgia and in patients newly diagnosed with rheumatoid arthritis: a qualitative exploration of symptom development.

Rheumatology (Oxford) 2014 Sep 11;53(9):1646-53. Epub 2014 Apr 11.

Centre for Translational Inflammation Research, University of Birmingham, Sandwell and West Birmingham Hospitals NHS Trust, Birmingham, UK, Department of Rheumatology, VU University Medical Center, Jan van Breemen Research Institute | Reade, Amsterdam, The Netherlands and Arthritis Research UK Primary Care Centre, University of Keele, Stoke-on-Trent, UK.Centre for Translational Inflammation Research, University of Birmingham, Sandwell and West Birmingham Hospitals NHS Trust, Birmingham, UK, Department of Rheumatology, VU University Medical Center, Jan van Breemen Research Institute | Reade, Amsterdam, The Netherlands and Arthritis Research UK Primary Care Centre, University of Keele, Stoke-on-Trent, UK.

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.
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http://dx.doi.org/10.1093/rheumatology/keu159DOI Listing
September 2014
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