Gwenda Simons

Sharing concerns: Interpersonal worry regulation in romantic couples.

Two dyadic studies investigated interpersonal worry regulation in heterosexual relationships. In Study 1, we video-recorded 40 romantic couples discussing shared concerns. Male partners’ worry positively predicted female partners’ interpersonal calming attempts, and negatively predicted female partners’ interpersonal alerting attempts (i.e., attempts to make their partners appreciate the seriousness of concerns). Video-cued recall data also indicated that changes in partner A’s worry over time positively predicted partner B’s motivation to reduce partner A’s worry, and that this effect was stronger when B was the female partner. Study 2 was a dyadic survey of 100 couples. Individual differences in partner A’s negative affect were positive predictors of partner B’s interpersonal calming, and individual differences in partner A’s expressive suppression were negative predictors of partner B’s interpersonal calming. Further, individual differences in male partners’ expressivity were significant positive predictors of female partners’ interpersonal calming, and individual differences in male partners’ reappraisal were significant positive predictors of female partners’ interpersonal alerting. These findings suggest that interpersonal worry regulation relates to partners’ expression and intrapersonal regulation of worry, but not equally for men and women.

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

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.

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

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.

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

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.

Perceptions of predictive testing for those at risk of developing a chronic inflammatory disease: a meta-synthesis of qualitative studies

Background: The availability of tests to predict the risk of developing chronic diseases is increasing. The identification of individuals at high risk of disease can trigger early intervention to reduce the risk of disease and its severity. In order for predictive tests to be accepted and used by those at risk, there is a need to understand people’s perceptions of predictive testing. Method: A meta-synthesis of qualitative research that explored patient and public perceptions of predictive testing for chronic inflammatory diseases was conducted. Studies were coded by researchers and patient research partners, and then organised into common themes associated with the acceptability or use of predictive testing. Results: Perceived barriers to predictive testing were identified, including a concern about a lack of confidentiality around the use of risk information; a lack of motivation for change; poor communication of information; and a possible impact on emotional well-being. In order to reduce these barriers, the literature shows that a patient-centred approach is required at each stage of the testing process. This includes the consideration of individual needs, such as accessibility and building motivation for change; readily available and easy to understand pre and post-test information; support for patients on how to deal with the implications of their results; and the development of condition specific lifestyle intervention programmes to facilitate sustainable lifestyle changes. Conclusion: Patients and members of the public had some concerns about predictive testing; however, a number of strategies to reduce barriers and increase acceptability are available. Further research is required to inform the development of a resource that supports the individual to make an informed decision about whether to engage in a predictive test, what test results mean, and how to access post-test support.

Healthcare professionals’ perceptions of risk in the context of genetic testing for the prediction of chronic disease: a qualitative metasynthesis

Advances in genomic technologies and a growing trend towards stratified and preventive approaches to medicine mean that increasing numbers of individuals may have access to information about their genetic makeup, and their risk of developing diseases. This is likely to impact on healthcare professionals involved in the delivery of genetic tests, or in supporting patients who are affected by a disease with a genetic risk factor. It is therefore important to understand healthcare professionals’ perceptions about providing these services, and how they feel about communicating information about genetic risk to patients. This paper provides a systematic review and metasynthesis of qualitative research exploring healthcare professionals’ perceptions of genetic risk in the context of predictive genetic testing for chronic disease. Healthcare professionals expressed a range of reservations about the utility of predictive testing in this context. Professionals judged patients’ understanding of risk information to be limited and subject to bias and a range of sociocultural influences. Concerns about the psychosocial impact of genetic risk information were frequently cited, both in relation to individual patients and the wider impact on their families and communities. The need for provision of multidisciplinary support was described. The concept of responsibility was also an important theme. Healthcare professionals recognized the responsibility that accompanies risk knowledge, and that ultimately this responsibility lies with the patient, not the provider. Our analysis suggests that professionals’ evaluation of the utility of predictive genetic testing is influenced not only by resource deficits, but may also be interpreted as a response to challenging ethical and social issues associated with genetic risk, that are not well aligned with current medical practice.

Symptom recognition and perceived urgency of help-seeking for rheumatoid arthritis and other diseases in the general public: A mixed method approach.

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.

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

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.

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

BackgroundWhen 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.MethodsThirty-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.ResultsParticipants 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).DiscussionThese 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.

SAT0719-HPR “and suddenly you are a person at risk of developing rheumatoid arthritis!” different perspectives of individuals on predictive testing – results of an international qualitative interview study

Background People at risk of developing rheumatoid arthritis (RA) may be candidates for interventions aimed at preventing RA development [1]. The identification of such “at risk” populations includes testing for genetic and other (e.g. autoantibody) biomarkers. However, little is known about the peoples perspectives on these tests, how they react and cope when identified as being a person “at risk” and what their unmet needs are. Objectives To expore the perceptions about RA and predictive testing and to understand the various reactions and coping strategies used when identified as being at risk of developing RA from the perspective of those directly concerned. Methods As part of the EuroTEAM project, a qualitative interview study with people who were informed of being at risk of developing RA was conducted. An interview schedule was developed and pilot-tested. Interviews were audio-recorded, transcribed verbatim and analyzed using thematic analysis. Results A total of 34 individuals (with rheumatoid factor and/or ACPA positive) already informed of being at risk of developing RA participated in the study, from Austria (n=15), Germany (n=15), and the UK (n=4). In Vienna, people who had been tested within an expanded health exam participated in this study. In Birmingham and Erlangen, people with arthralgia were recruited from the outpatient clinics. Analysis of the interview data revealed five overarching themes related to predictive testing in the context of RA (Figure). There were differences between the perceptions of althralgia patients and asymptomatic individuals. People suffering from pain were much more frightened and worried when informed of being at risk of developing RA. As a consequence, they modified their lives in a larger extent and had greater knowledge about RA than those without any symptoms who were rather surprised, kept calm and hardly changed their lifestyle after being tested positive. Allmost all participants in this study would appreciate precise predictive tests in the context of RA. However, more than half of them would refuse synovial biopsy (even if this could help quantify risk more accurately) or preventive medication. Recommendations for an improved procedure of predictive testing in the field of RA were given, which could promote uptake of preventive strategies. Conclusions Participants showed large differences in views about predictive testing in the context of RA risk and offered specific suggestions that should be incorporated into service design and delivery in the context of future predictive testing programmes. These findings may also be relevant to prediction and prevention in the context of other diseases where multiple genetic risk factors interact with environmental risk factors to drive disease development. References van Steenbergen, H.W., T.W. Huizinga, and A.H. van der Helm-van Mil, The preclinical phase of rheumatoid arthritis: what is acknowledged and what needs to be assessed? Arthritis Rheum, 2013. 65(9): p. 2219–32. Disclosure of Interest None declared