BackgroundGiant cell arteritis (GCA), if untreated, can lead to blindness and stroke. The study’s objectives were to (1) determine a new evidence-based benchmark of the extent of diagnostic delay for GCA and (2) examine the role of GCA-specific characteristics on diagnostic delay.MethodsMedical literature databases were searched from inception to November 2015. Articles were included if reporting a time-period of diagnostic delay between onset of GCA symptoms and diagnosis. Two reviewers assessed the quality of the final articles and extracted data from these. Random-effects meta-analysis was used to pool the mean time-period (95% confidence interval (CI)) between GCA symptom onset and diagnosis, and the delay observed for GCA-specific characteristics. Heterogeneity was assessed by I 2 and by 95% prediction interval (PI).ResultsOf 4128 articles initially identified, 16 provided data for meta-analysis. Mean diagnostic delay was 9.0 weeks (95% CI, 6.5 to 11.4) between symptom onset and GCA diagnosis (I 2 = 96.0%; P < 0.001; 95% PI, 0 to 19.2 weeks). Patients with a cranial presentation of GCA received a diagnosis after 7.7 (95% CI, 2.7 to 12.8) weeks (I 2 = 98.4%; P < 0.001; 95% PI, 0 to 27.6 weeks) and those with non-cranial GCA after 17.6 (95% CI, 9.7 to 25.5) weeks (I 2 = 96.6%; P < 0.001; 95% PI, 0 to 46.1 weeks).ConclusionsThe mean delay from symptom onset to GCA diagnosis was 9 weeks, or longer when cranial symptoms were absent. Our research provides an evidence-based benchmark for diagnostic delay of GCA and supports the need for improved public awareness and fast-track diagnostic pathways.Electronic supplementary materialThe online version of this article (doi:10.1186/s12916-017-0871-z) contains supplementary material, which is available to authorized users.
There is currently much debate in the United Kingdom policy and practice literature about how best to respond to the care and accommodation needs of people as they retire and grow older. Against a policy background which espouses the benefits of 'lifetime homes and lifetime neighbourhoods', the growth of purpose-built segregated retirement villages looks somewhat contradictory and is set to transform the housing scene. Whilst there has been considerable research into these environments in countries like the United States of America and Australia, we know comparatively little about what it is like to live in British retirement communities, how they evolve over time and whether they enhance people's lifestyle aspirations and quality of life. This paper examines these issues through the lens of 'community' and in the context of Denham Garden Village: a purpose-built retirement village in Buckinghamshire. Drawing on a range of qualitative data (from individual and group interviews, diaries and directives), we focus on how 'community' was conceptualised, experienced and understood both 'then' (in the early days of the village) and 'now' (subsequent to its redevelopment). The findings enable us to examine the extent to which 'community' evolves over time and raise important questions about how socially cohesive, or not, such retirement villages are.KEY WORDS -community, retirement village, community of interest, community identity, community of place.
The objective of the study is to examine the impact of gout and its treatments on health-related quality of life (HRQOL) using focus group interviews. From the baseline phase of a cohort study of HRQOL in gout, 17 participants (15 males, mean age 71 years) with varying attack frequency and treatment with and without allopurinol participated in one of four focus group interviews. All interviews were audio-recorded and transcribed verbatim. Data was analysed thematically. Physical and psychosocial HRQOL in gout was affected by characteristics of acute gout (particularly the unpredictable nature of attacks, location of joint involved in an attack, pain and modifications in lifestyle), lack of understanding of gout by others (association with unhealthy lifestyle, symptoms ridiculed as non-severe and non-serious) as well as participants (not considered a disease) and the lack of information provided by physicians (about causes and pharmacological as well as non-pharmacological treatments of gout). Participants emphasised the impact of acute attacks of gout and prioritised dietary modifications and treatment of acute attacks over long-term urate-lowering therapy. Characteristics of acute gout, lack of understanding and information about gout and its treatments perpetuate poor HRQOL. HRQOL (maintenance of usual diet and reduced frequency of attacks) was associated with urate-lowering treatment. Better patient, public and practitioner education about gout being a chronic condition associated with co-morbidities and poor HRQOL may improve understanding and long-term treatment of gout.
This article contributes to emerging debates around age-friendly environments, providing empirical evidence concerning the relative age-friendliness of purposebuilt retirement communities. Adopting a new definition -'underpinned by a commitment to respect and social inclusion, an age-friendly community is engaged in a strategic and ongoing process to facilitate active ageing by optimising the community's physical and social environments and its supporting infrastructure' -the article analyses the age-friendliness of one retirement community in England. The Longitudinal Study of Ageing in a Retirement Community (LARC) encompassed two waves of a survey with residents, interviews and focus groups with stakeholders involved in staffing, managing and designing the community, and other qualitative data collected from residents. Reviewing the different data sources, the article argues that purpose-built retirement communities have the potential to be age-friendly settings but might better involve residents in a regular cycle of planning, implementation, evaluation and continual improvement if they are to facilitate active ageing. In addition, more clarity is needed on how such developments can better fit with the age-friendly agenda, particularly in terms of their capacity to support ageing in place, the accessibility of the wider neighbourhood, opportunities for intergenerational interactions, and the training of staff to work with older people.
ObjectivesClinical management of giant cell arteritis (GCA) involves balancing the risks and burdens arising from the disease with those arising from treatment, but there is little research on the nature of those burdens. We aimed to explore the impact of giant cell arteritis (GCA) and its treatment on patients’ lives.MethodsUK patients with GCA participated in semi-structured telephone interviews. Inductive thematic analysis was employed.Results24 participants were recruited (age: 65–92 years, time since diagnosis: 2 months to >6 years). The overarching themes from analysis were: ongoing symptoms of the disease and its treatment; and ‘life-changing’ impacts. The overall impact of GCA on patients’ lives arose from a changing combination of symptoms, side effects, adaptations to everyday life and impacts on sense of normality. Important factors contributing to loss of normality were glucocorticoid-related treatment burdens and fear about possible future loss of vision.ConclusionsThe impact of GCA in patients’ everyday lives can be substantial, multifaceted and ongoing despite apparent control of disease activity. The findings of this study will help doctors better understand patient priorities, legitimise patients’ experiences of GCA and work with patients to set realistic treatment goals and plan adaptations to their everyday lives.
BackgroundAlthough international guidelines encourage urate lowering therapy (ULT) for people who have more than two attacks of gout, only 30 % of patients are prescribed it and only 40 % of those adhere to the treatment. The aim was to explore reasons for this through an exploration of patient experience and understanding of ULT treatment for gout.MethodsA qualitative study was conducted throughout the United Kingdom. Narrative and semi-structured video-recorded interviews and thematic analysis were used.ResultsParticipants talked about their views and experiences of treatment, and the factors that affected their use of ULT. The analysis revealed five main themes: 1) knowledge and understanding of gout and its treatment; 2) resistance to taking medication; 3) uncertainty about when to start ULT; 4) experiences of using ULT; and 5) desire for information and monitoring.ConclusionPatients’ understanding and experiences of gout and ULT are complex and it is important for clinicians to be aware of these when working with patients. It is also important for clinicians to know that patients’ perceptions and behaviour are not fixed, but can change over time, with changes to their condition, with dialogue and increased understanding. Patients want this interaction with their clinicians, through “a joint effort over a period of time”.
ObjectiveTo explore patients’ experiences from initial symptoms to receiving a diagnosis of gout.DesignData from in-depth semistructured interviews were used to construct themes to describe key features of patients’ experiences of gout diagnosis.Participants and settingA maximum variation sample of 43 UK patients with gout (29 men; 14 women; age range 32–87 years) were recruited from general practices, rheumatology clinics, gout support groups and through online advertising.ResultsSevere joint pain, combined with no obvious signs of physical trauma or knowledge of injury, caused confusion for patients attempting to interpret their symptoms. Reasons for delayed consultation included self-diagnosis and/or self-medication, reluctance to seek medical attention, and financial/work pressures. Factors potentially contributing to delayed diagnosis after consultation included reported misdiagnosis, attacks in joints other than the first metatarsophalangeal joint, and female gender. The limitations in using serum uric acid (SUA) levels for diagnostic purposes were not always communicated effectively to patients, and led to uncertainty and lack of confidence in the accuracy of the diagnosis. Resistance to the diagnosis occurred in response to patients’ beliefs about the causes of gout and characteristics of the people likely to be affected. Diagnosis prompted actions, such as changes in diet, and evidence was found of self-monitoring of SUA levels.ConclusionsThis study is the first to report data specifically about patients’ pathways to initial consultation and subsequent experiences of gout diagnosis. A more targeted approach to information provision at diagnosis would improve patients’ experiences.
Social connectedness in later life is an important dimension of an age-friendly community, with associated implications for individual health and wellbeing. In contrast with prior efforts focusing on connections at a distance or online communities where the digital technology is the interface, we explore the design opportunities and role of technology for connectedness within a geographically local community context. We present findings from interviews with 22 older adults and a linked ideation workshop. Our analysis identified shared concerns and negative perceptions around local relationships, connections and characteristics of the geographical area. However, local connectedness through technology was largely absent from day-to-day life and even perceived as contributing to disconnection. By uncovering how older adults use and perceive technology in their social lives and combining these findings with their ideas for improving local connections, we highlight the need for thoughtful consideration of the role of technology in optimising social connections within communities. Our research highlights a need for design work to understand the specifics of the local context and reduce emphasis on technology as the interface between people. We introduce an amended definition—‘underpinned by a commitment to respect and social inclusion, an age-friendly community is engaged in a strategic and ongoing process to facilitate active ageing by optimising the community’s physical, social and digital environments and its supporting infrastructure’—to conceptualise our approach. We conclude by suggesting areas for future work in developing digitally connected age-friendly communities.
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