It is now possible to detect the pathology of Alzheimer's disease (AD) many years before symptoms and signs otherwise become manifest. Biomarkers of disease include evidence of amyloid and tau in the cerebrospinal fluid and neuroimaging which (for instance) allows amyloid in the brain to be visualized. There is, thus, a preclinical state in which it is possible to identify Alzheimer's pathology long before there is clinical evidence of disease. Much research focuses on this preclinical state because it seems likely that treatments will be more effective before the disease is established. This means that researchers can discover Alzheimer's pathology some years before the person is at risk of developing the condition. In memory clinics, too, people may present with early (prodromal) symptoms which do not yet amount to a dementia syndrome (e.g. mild cognitive impairment), yet biomarker evidence that dementia is highly likely to develop. This is problematic because people will be required to consent to the disclosure of findings that indicate an uncertain risk of an alarming disease. We carried out a scoping review of the issues that arise in connection with a "diagnosis" of preclinical dementia. We identified four themes in the literature: stigma; ethical issues; psychological burden; and language. We shall discuss these themes and related issues that emerge to do with meaning, medicalization, virtues and values. More research is now required to understand these issues in detail, where the emphasis should be on the breadth of research, which must be biopsychosocial and ethical.
Despite the publication of various recommendations, quality standards and referral strategies to promote early diagnosis in axial SpA (axSpA) over the last decade, there remains a significant delay to diagnosis, leading to a lost tribe of undiagnosed, untreated patients with persistent back pain and axSpA symptoms. This review discusses the various factors contributing to diagnostic delay in axSpA, while providing recommendations to improve the diagnostic pathway, for example use of the online Spondyloarthritis Diagnosis Evaluation (SPADE) tool (http://www.spadetool.co.uk/). Significant shortcomings exist at both the primary and secondary care level, with healthcare professionals often lacking knowledge and awareness of axSpA. Myths regarding the classical signs and symptoms still prevail, including the perception of axSpA as a male disease, only occurring in individuals who are HLA-B27 positive with raised inflammatory markers. Individuals within this lost tribe of undiagnosed patients are likely lacking adequate treatment and are thereby at risk of worse clinical outcomes. It is therefore vital that public health initiatives are implemented to improve education of healthcare professional and to ensure early specialist referral, to ultimately improve the lives of patients with axSpA.
Objectives: Technology-based prompting has the potential to support people with dementia to complete multistep tasks in the home. However, these devices can be complex to use. This paper reports a feasibility trial of a personalised touchscreen digital prompter designed for home use. Methodology: A tablet-based prompter suitable for people living with dementia was developed, along with a detailed guidance manual. Carers loaded instructions for completing the task onto the prompter, and the person with dementia then used the tablet independently to complete a task. Eleven couples used the prompter 'out-of-the-box' with no support other than a guidance manual. Results: The majority of participants with dementia could follow the steps on the prompter, and carers were able to breakdown and load tasks onto the prompter. Eight couples used the prompter successfully to complete goals that they had identified in advance. These included preparing simple snacks and using a TV remote control. Successfully achieving goals was associated with more frequent use of the prompting screen on more days, but not higher levels of editing or previewing of tasks. Conclusion: The study provides the preliminary evidence that family caregivers can use a touchscreen tablet, software and manual package to identify specific tasks and break these down into steps and that people living with dementia can then follow the prompts to complete the tasks. This potentially represents an important advance in dementia care. Further testing is required to establish efficacy and to identify any factors that impact on outcomes.
Physical activity (PA) is a primary non-pharmacological treatment option for those living with rheumatoid arthritis (RA) and spondyloarthritis (SpA). The aim of this systematic literature review was to summarize and present an updated synthesis of the factors associated with PA in the RA and SpA populations. A tailored search of PubMed (inc. Medline), Web of Science, Embase, APA PsycNET, and Scopus was conducted for research published between 2004 and June 2019. Methodological quality was assessed using The National Institutes of Health (NIH) Quality Assessment Tools for Observational Cohort and Cross-sectional Studies, Case–Control Studies, and Controlled Intervention Studies. Forty RA and eleven SpA articles met the inclusion criteria. Methodological quality was generally fair to good, with two RA studies rated as poor. Correlates are discussed in the sociodemographic, physical, psychological, social, and environmental categories. Environmental factors were not measured in any RA study. In individuals living with RA, consistent positive associations were found between PA and high-density lipoprotein, self-efficacy, and motivation. Consistent negative associations were found for functional disability and fatigue. In individuals with SpA, consistent positive associations were found between PA and quality of life, and consistent negative associations with functional disability. Physical and psychological factors are most consistently related with PA parameters in those living with RA and SpA. Many variables were inconsistently studied and showed indeterminant associations. Studies with prospective designs are needed to further understand the factors associated with PA in these populations, especially in those living with SpA.
Background People living with non-radiographic axial spondyloarthritis (nr-axSpA) often suffer poor psychological health. Social support has been identified as one way to enhance psychological well-being, yet little research has examined the relationship between quality of support provided by important others and indicators of well-being in people living with nr-axSpA. Thus, the aim of this study is to examine whether important other autonomy support predicts symptoms of subjective vitality, depression and anxiety and test if this relationship is mediated by the three innate basic psychological needs (autonomy - a sense of ownership and volition over actions and behaviours; competence - feeling effective and capable of achieving valued outcomes; relatedness - experiencing closeness and genuine connection, with valued others) as specified by Self Determination Theory (SDT). Methods Sixty three participants living with nr-axSpA (M Age = 43.16 years; SD = 11.17; female = 58.73%) were recruited from a specialist rheumatology hospital via the Bath Spondyloarthritis Biobank. Spinal mobility was assessed using the Bath Ankylosing Spondylitis Metrology Index (M = 1.83; SD = 1.2; range = 5). Questionnaires measuring important other autonomy support, basic psychological need satisfaction, subjective vitality, depression severity and anxiety severity were completed. Mediation analyses were conducted via three linear regressions and bootstrapping for subjective vitality, anxiety and depressive symptoms. Results Important other autonomy support was significantly and positively related to subjective vitality (β = .32, p = .01), and significantly and negatively related to symptoms of depression (β = -.32, p = .02) and anxiety (β = -.31, p = .03). Important other autonomy support also demonstrated a significant positive relationship with basic psychological need satisfaction (β = .27, p <.05). Basic psychological need satisfaction had a significant positive relationship with subjective vitality (β = .58, p < .01; R2 = .37) and a significant negative relationship with depressive symptoms (β = -.57, p < .01; R2 = .35) and anxiety (β = -.50, p <.01; R2 = .30). Assessment of the indirect effects revealed that basic psychological need satisfaction did not mediate the relationships between important other autonomy support and subjective vitality (b = .15, 95% BC CI -.04, .34), depressive symptoms (b = -.06, 95% BC CI -.16, .01) and anxiety (b = -.08, 95% BC CI -.19, .03). Conclusion Both important other autonomy support and basic psychological needs were significantly related to psychological well-being. Yet, basic psychological need satisfaction did not mediate the relationships between important other autonomy support with subjective vitality, depressive symptoms and anxiety. Healthcare interventions could help important others to improve the quality of their support and try to increase a sense of autonomy, competence and relatedness satisfaction in people living with nr-axSpA to enhance the psychological well-being of people living with nr-axSpA. Disclosures T.A. Ingram None. P.C. Rouse None. M. Standage None. E. Reilly None. R. Sengupta None.
Background/Aims The Fear Avoidance Model (FAM) proposes pain-related fear of movement and pain catastrophising to be prominent psychological experiences that compromise physical function and activity behaviour in people living with chronic pain. Yet, little research has tested the FAM in people living with axial spondyloarthritis (axSpA) despite the evidenced benefits of physical activity and exercise. This study examines the structural aspect of construct validity of the 11-item Tampa Scale of Kinesiophobia (TSK-11) and Pain Catastrophising Sale (PCS) as an important first step, to establish valid measurement tools to effectively test the relevance of the FAM for people with axSpA. Methods An online survey was distributed via the National Axial Spondyloarthritis Society including the TSK-11 and PCS. Ninety-eight people with axSpA (M Age = 45.62 SD = 12.16, M BASFI = 3.7 SD = 2.60, Female = 70%, NSAID use = 58.76%, bDMARDS use = 62.24%) completed the survey (December 2020- April 2021). Internal consistency was examined via Cronbach alpha values and confirmatory factor analysis tested the TSK-11's two-factor structure and PCS's three-factor structure. A model has excellent fit to the data with values < 3 for the CMIN/DF, and around .95 for CFI, .06 for RMSEA, .08 for SRMR. Factor loadings < .40 support deletion. Results Alpha values supported the internal consistency of participant responses to the somatic (.78), avoidance behaviour (.80) and overall fear of movement (.89) TSK-11 items. Fit indices also showed a good fit to the data for the TSK-11’s two-factor structure once two error terms were correlated (CMIN/DF = 1.77/42, CFI = .93, RMSEA = .09 (.05 - .12), SRMR= .06). Standardised factors loadings for the somatic and avoidance factors ranged from .43 - .80 and .60 - .72, respectively. Internal consistency for the responses to the PCS-Helplessness (.92), PCS-Magnification (.82), PCS-Rumination (.94) and overall pain catastrophising (.95) scales were also supported. A good fit to the data was shown for the three-factor structure of the PCS (CMIN/DF = 2.15/61, CFI = .94, RMSEA= .11 (.08-.14), SRMR = .04) when two errors were correlated. Standardised factors loadings ranged from .67-.90, (Helplessness), .89 - .92 (Rumination) and .73 - .85 (Magnification). Conclusion The TSK-11 and PCS can be used to measure axSpA patient’s pain related fear of movement and pain catastrophising, but data support continued examination of their construct validity in larger samples of axSpA patients. One TSK-11 item revealed a border line factor loading (.43) for the somatic factor (“pain lets me know when to stop exercising so that I don’t injure myself”). Psychometrically valid instruments will help examine the role of pain related fear of movement and pain catastrophising on important health related outcomes for axSpA patients including physical function and physical activity behaviour. Disclosure P.C. Rouse: Grants/research support; PhD studentship matched funded by Bath Institute for Rheumatic Diseases (RAG-PR-33-120318). T.A. Ingram: None. M. Standage: None. R. Sengupta: Honoraria; Received honoraria for giving talks from Abbyie, Biogen, UCB, Novartis and Pfizer. Grants/research support; Research grants have been received from UCB, Abbvie, and Novartis.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.