Patient delays in seeking help at the onset of rheumatoid arthritis: the problem, its causes and potential solutions

Rheumatoid arthritis (RA) is a chronic inflammatory disease for which early treatment is vital to limit long term joint damage. However, people often delay in seeking medical help at the onset of RA symptoms. The early interpretation of symptoms and the process of making sense of symptoms impacts on both help-seeking decision-making and self-management. Furthermore, the general public’s perceptions and knowledge of RA may also affect the way that symptoms are interpreted. Examining the psychology behind early symptom interpretation, the barriers to help-seeking behaviour and investigating the public understandings of RA, can help us understand how decisions are made and guide us in developing interventions which encourage people to seek help promptly at the onset of RA

Intentional and unintentional non-adherence in community dwelling people with type 2 diabetes: the effect of varying numbers of medicines

People with type 2 diabetes are often prescribed multiple medicines which can be difficult to manage. Nonadherence to medicines can be intentional (e.g. active decision) or unintentional (e.g. forgetting). The objective of this study was to measure intentional and unintentional non-adherence to differing numbers of medicines prescribed in type 2 diabetes. A cross sectional survey using the Morisky medication adherence scale (with intentional and unintentional non-adherence subscales) was completed by 480 people prescribed oral antidiabetic drugs (OADs), antihypertensive agents and statins. A within-subject analysis of variance (ANOVA) showed that intentional non-adherence did not vary between OADs, anti-hypertensives and statins. Intentional non-adherence to statins significantly increased when the number of medicines prescribed was included as a between-subjects variable (p<0.05). Another within-subject ANOVA on unintentional non-adherence found a significant difference between OADs, anti-hypertensives and statins; unintentional non-adherence to OADs was significantly higher (p<0.05). When the number of medicines was added as a between-subject variable unintentional non-adherence was associated with higher numbers of medicines. This study shows the difference between intentional and unintentional non-adherence behaviours, and the effect that varying numbers of medicines can have on these behaviours

The impact of financial hardship on single parents: an exploration of the journey from social distress to seeking help

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 fifteen 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 into account. Support for single parents must acknowledge the impact of social circumstances and give more consideration economic drivers of distress

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

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:≥2RA 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

Delays in help seeking at the onset of the symptoms of rheumatoid arthritis: a systematic synthesis of qualitative literature

A systematic review of qualitative peer-reviewed publications was conducted to identify drivers of and barriers to help-seeking behaviour in adults with new-onset rheumatoid arthritis (RA). 1058 abstracts were searched to identify relevant publications. 21 relevant publications were identified assessed for quality and subjected to analysis informed by thematic and grounded theory frameworks. Several interacting themes were identified including the early experience of symptoms in relation to disease prototypes, minimising the impact of symptoms, speaking to others, gathering information and seeking alternative treatments, and issues related to accessing health services and attitudes towards healthcare professionals. Many people suggested that they had little knowledge of RA before diagnosis, believing RA to be a mild condition that affected older people. These misperceptions made correct symptom interpretation unlikely. Normalising and ignoring symptoms led people to delay in help-seeking. However, when symptoms impacted on daily activities help was usually sought. Individual interpretations of symptoms are both drivers of and barriers to help seeking. Targeted public health interventions are required to inform symptom interpretation and reduce delays

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

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

Patients' perceptions of their relatives' risk of developing rheumatoid arthritis and of the potential for risk communication, prediction, and modulation

Objectives 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 about risk and its modulation. Methods Twenty-one RA patients took part in semi-structured 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 their 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 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 conceptualised 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. Conclusions Information about risk factors for RA, and the potential impact of RA on 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

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

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 require

Biochemical mutagens affect the preservation of fungi and biodiversity estimations

Many fungi have significant industrial applications or biosafety concerns and maintaining the original characteristics is essential. The preserved fungi have to represent the situation in nature for posterity, biodiversity estimations, and taxonomic research. However, spontaneous fungal mutations and secondary metabolites affecting producing fungi are well known. There is increasing interest in the preservation of microbes in Biological Resource Centers (BRC) to ensure that the organisms remain viable and stable genetically. It would be anathema if they contacted mutagens routinely. However, for the purpose of this discussion, there are three potential sources of biochemical mutagens when obtaining individual fungi from the environment: (a) mixtures of microorganisms are plated routinely onto growth media containing mutagenic antibiotics to control overgrowth by contaminants, (b) the microbial mixtures may contain microorganisms capable of producing mutagenic secondary metabolites, and (c) target fungi for isolation may produce “self” mutagens in pure culture. The probability that these compounds could interact with fungi undermines confidence in the preservation process and the potential effects of these biochemical mutagens are considered for the first time on strains held in BRC in this review

Families as support and burden: a mixed methods exploration of the extent to which family identification and support predicts reductions in stress among disadvantaged neighbourhood residents

Stronger family relationships predict positive health outcomes: a relationship that is partially due to the range of emotional, practical and informational support that families can provide. Yet not all families possess these resources. A survey study in a disadvantaged community in Nottingham, UK (N=142) demonstrated that family identification positively predicts ability to cope with financial stress, but that this relationship is moderated by whether family support is present or absent. Semi-structured interviews with 10 members of different families from the same community shed further light upon the nature of this relationship: individuals report that they tend to turn to their family rather than friends or community services in times of financial hardship, even though their family are unlikely to be able to support them effectively, and that this is often due to feelings of embarrassment or finance-related stigma. Our findings highlight the complex role that families can play in finance-related issues, as well as the need to encourage individuals to seek financial support from sources which provide effective (rather than emotionally comfortable) assistance