Further explorations of illness uncertainty: Carer’s experiences of Parkinson’s disease

Objective: Dominant models of illness uncertainty define uncertainty as ‘an inability to determine the meaning of illness-related events’. Recent research has shown patient uncertainty to be multidimensional encompassing personal issues indirectly affected by illness. The nature of carer uncertainty has yet to be fully explored. The present study aimed to investigate the nature of illness uncertainty in the carers of patients with Parkinson’s disease (PD). Design: Eighteen carers of a spouse with PD participated in semi-structured interviews. Transcripts were thematically analysed, statements were coded as uncertain if they reflected ‘a lack of certainty, or a state of limited knowledge, understanding or worry regarding an existing or future outcome’. Results: The domains of uncertainty expressed by carers closely fitted the five domain framework of patient uncertainty: symptoms and prognosis, medical management, self-management, social functioning and impact. An additional ‘carer-role’ domain was identified. Conclusions: Carer uncertainty about PD went beyond issues directly related to the illness. The findings have implications for research into uncertainty suggesting that widely used measures may not be accurately capturing the nature of carer uncertainty about chronic illness. The breadth of uncertainty reported has implications for the provision of appropriate support to improve caregiver well-being

The narratives of Hardship: : The new and the old poor in the aftermath of the 2008 crisis in Europe

This document is the Accepted Manuscript version of the following article: Hulya Dagdeviren, Matthew Donoghue, and Lars Meier, ‘The narratives of hardship: the new and the old poor in the aftermath of the 2008 crisis in Europe’, The Sociological Review, vol. 65 (2): 369-385, May 2017. The final, definitive version of record is available online at doi: https://doi.org/10.1111/1467-954X.12403. Published by SAGE.This paper examines poverty and hardship in Europe after the 2008 crisis, using household interviews in nine European countries. A number of findings deserve highlighting. First, making a distinction between ‘the old poor’ (those who lived in poverty before as well as after the crisis) and ‘the new poor’ (thosewho fell into hardship after the crisis), we show that hardship is experienced quite differently by these groups. Second, the household narratives showed that while material deprivations constitute an important aspect of hardship, the themes of insecurity and dependency also emerged as fundamental dimensions. In contrast to popular political discourse in countries such as the UK, dependency on welfare or family was experienced as a source of distress and manifested as a form of hardship by participants in all countries covered in this study.Peer reviewedFinal Accepted Versio

Psychometric Evaluation of a New Instrument to Measure Uncertainty in Children and Adolescents With Cancer

Although uncertainty has been characterized as a major stressor for children with cancer, it has not been studied systematically

Test of a conceptual model of uncertainty in children and adolescents with cancer

Despite recognition as a significant stressor in childhood cancer, illness-related uncertainty from the perspective of children remains under-studied. We tested a conceptual model of uncertainty, derived from Mishel’s uncertainty in illness theory, in 68 school-aged children and adolescents with cancer. As hypothesized, uncertainty was significantly related to psychological distress, but only one hypothesized antecedent (parental uncertainty) significantly predicted children’s uncertainty. An alternative model incorporating antecedent developmental factors (age and illness-specific expertise) explained 21% of the variance in child uncertainty; controlling for stage of treatment, uncertainty was higher in children with shorter time since diagnosis, older age, lower cancer knowledge, and higher parental uncertainty. These findings provide the foundation for further studies to understand children’s management of uncertainty and its contribution to psychological adjustment to illness

Quality of care received and patient-reported regret in prostate cancer: Analysis of a population-based prospective cohort

BACKGROUND: Meeting quality of care standards in oncology is recognized as important by physicians, professional organizations, and payers. Data from a population-based cohort of patients with prostate cancer were used to examine whether receipt of care was consistent with published consensus metrics and whether receiving high-quality care was associated with less patient-reported treatment decisional regret. METHODS: Patients with incident prostate cancer were enrolled in collaboration with the North Carolina Central Cancer Registry, with an oversampling of minority patients. Medical record abstraction was used to determine whether participants received high-quality care based on 5 standards: 1) discussion of all treatment options; 2) complete workup (prostate-specific antigen, Gleason grade, and clinical stage); 3) low-risk participants did not undergo a bone scan; 4) high-risk participants treated with radiotherapy (RT) received androgen deprivation therapy; and 5) participants treated with RT received conformal or intensity-modulated RT. Treatment decisional regret was assessed using a validated instrument. RESULTS: A total of 804 participants were analyzed. Overall, 66% of African American and 73% of white participants received care that met all standards (P =.03); this racial difference was confirmed by multivariable analysis. Care that included “discussion of all treatment options” was found to be associated with less patient-reported regret on univariable analysis (P =.03) and multivariable analysis (odds ratio, 0.59; 95% confidence interval, 0.37-0.95). CONCLUSIONS: The majority of participants received high-quality care, but racial disparity existed. Participants who discussed all treatment options appeared to have less treatment decisional regret. To the authors' knowledge, this is the first study to demonstrate an association between a quality of care metric and patient-reported outcome

Inclusive growth in English cities: mainstreamed or sidelined?

<p>The concept of inclusive growth is increasingly presented as offering prospects for more equitable social outcomes. However, inclusive growth is subject to a variety of interpretations and lacks definitional clarity. In England, via devolution, cities are taking on new powers for policy domains that can influence inclusive growth outcomes. This opens up opportunities for innovation to address central issues of low pay and poverty. This paper examines the extent to which inclusive growth concerns form a central or peripheral aspect in this new devolution through the content analysis of devolution agreements. It concludes that inclusive growth concerns appear to be largely sidelined.</p

The LINC00961 transcript and its encoded micropeptide SPAAR regulate endothelial cell function

AIMS: Long non-coding RNAs (lncRNAs) play functional roles in physiology and disease, yet understanding of their contribution to endothelial cell (EC) function is incomplete. We identified lncRNAs regulated during EC differentiation and investigated the role of LINC00961 and its encoded micropeptide, small regulatory polypeptide of amino acid response (SPAAR), in EC function. METHODS AND RESULTS: Deep sequencing of human embryonic stem cell differentiation to ECs was combined with Encyclopedia of DNA Elements (ENCODE) RNA-seq data from vascular cells, identifying 278 endothelial enriched genes, including 6 lncRNAs. Expression of LINC00961, first annotated as an lncRNA but reassigned as a protein-coding gene for the SPAAR micropeptide, was increased during the differentiation and was EC enriched. LINC00961 transcript depletion significantly reduced EC adhesion, tube formation, migration, proliferation, and barrier integrity in primary ECs. Overexpression of the SPAAR open reading frame increased tubule formation; however, overexpression of the full-length transcript did not, despite production of SPAAR. Furthermore, overexpression of an ATG mutant of the full-length transcript reduced network formation, suggesting a bona fide non-coding RNA function of the transcript with opposing effects to SPAAR. As the LINC00961 locus is conserved in mouse, we generated an LINC00961 locus knockout (KO) mouse that underwent hind limb ischaemia (HLI) to investigate the angiogenic role of this locus in vivo. In agreement with in vitro data, KO animals had a reduced capillary density in the ischaemic adductor muscle after 7 days. Finally, to characterize LINC00961 and SPAAR independent functions in ECs, we performed pull-downs of both molecules and identified protein-binding partners. LINC00961 RNA binds the G-actin sequestering protein thymosin beta-4x (Tβ4) and Tβ4 depletion phenocopied the overexpression of the ATG mutant. SPAAR binding partners included the actin-binding protein, SYNE1. CONCLUSION: The LINC00961 locus regulates EC function in vitro and in vivo. The gene produces two molecules with opposing effects on angiogenesis: SPAAR and LINC00961

Patient Uncertainty Questionnaire-Rheumatology (PUQ-R): development and validation of a new patient-reported outcome instrument for systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) in a mixed methods study

Background An in-depth qualitative exploration of uncertainty in systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) led to the development of a five-domain conceptual framework of patient uncertainty in these two conditions. The purpose of this study was to develop and evaluate a new patient-reported outcome (PRO) instrument for patient uncertainty in SLE and RA on the basis of this empirically developed conceptual framework. Methods Cognitive debriefing interviews were conducted to pre-test the initial items generated on the basis of the preliminary qualitative exploration of patient uncertainty in SLE and RA. Two separate field tests were conducted in five hospital sites to evaluate the measurement properties of the new instrument; the first to identify and form scales, and the second to assess measurement properties of the final version in an independent sample. Psychometric evaluation was conducted in line with the Rasch Measurement Theory (RMT), examining the extent to which sample to scale targeting was satisfactory, measurement scales were constructed effectively and the sample was measured successfully. Traditional psychometric techniques were also used to provide complementary analyses best understood by clinicians. Results Pre-testing supported the relevance, acceptability and comprehensibility of the initial items. Findings indicated that the Patient Uncertainty Questionnaire for Rheumatology PUQ-R instrument fulfilled the expectations of RMT to a large extent (including person separation index 0.73 – 0.91). The PUQ-R comprises 49 items across five scales; symptoms and flares (14 items), medication (11 items), trust in doctor (8 items), self-management (6 items) and impact (10 items) which further displayed excellent measurement properties as assessed against the traditional psychometric criteria (including Cronbach’s alpha 0.82 – 0.93). Conclusion The PUQ-R has been developed and evaluated specifically for patients with SLE and RA. By quantifying uncertainty, the PUQ-R has the potential to support evidence-based management programmes and research

Comparative Analysis of Whole-Genome Sequences of Influenza A(H1N1)pdm09 Viruses Isolated from Hospitalized and Nonhospitalized Patients Identifies Missense Mutations That Might Be Associated with Patient Hospital Admissions in Finland during 2009 to 2014

Peer reviewe

Chronic fetal hypoxia disrupts the peri-conceptual environment in next-generation adult female rats.

KEY POINTS: Exposure to chronic hypoxia during gestation influences long-term health and development, including reproductive capacity, across generations. If the peri-conceptual environment in the developing oviduct is affected by gestational hypoxia, then this could have implications for later fertility and the health of future generations. In the present study, we show that the oviducts of female rats exposed to chronic hypoxia in utero have reduced telomere length, decreased mitochondrial DNA biogenesis and increased oxidative stress The results of the present study show that exposure to chronic gestational hypoxia leads to accelerated ageing of the oviduct in early adulthood and they help us understand how exposure to hypoxia during development could influence reproductive health across generations. ABSTRACT: Exposure to chronic hypoxia during fetal development has important effects on immediate and long-term outcomes in offspring. Adverse impacts in adult offspring include impairment of cardiovascular function, metabolic derangement and accelerated ovarian ageing. However, it is not known whether other aspects of the female reproductive system may be similarly affected. In the present study, we examined the impact of chronic gestational hypoxia on the developing oviduct. Wistar rat dams were randomized to either normoxia (21%) or hypoxia (13%) from day 6 post-mating until delivery. Post-delivery female offspring were maintained in normoxia until 4 months of age. Oviductal gene expression was assayed at the RNA (quantitative RT-PCR) and protein (western blotting) levels. Oviductal telomere length was assayed using Southern blotting. Oviductal telomere length was reduced in the gestational hypoxia-exposed animals compared to normoxic controls (P < 0.01). This was associated with a specific post-transcriptional reduction in the KU70 subunit of DNA-pk in the gestational hypoxia-exposed group (P < 0.05). Gestational hypoxia-exposed oviducts also showed evidence of decreased mitochondrial DNA biogenesis, reduced mtDNA copy number (P < 0.05) and reduced gene expression of Tfam (P < 0.05) and Pgc1α (P < 0.05). In the hypoxia-exposed oviducts, there was upregulation of mitochondrial-specific anti-oxidant defence enzymes (MnSOD; P < 0.01). Exposure to chronic gestational hypoxia leads to accelerated ageing of the oviduct in adulthood. The oviduct plays a central role in early development as the site of gamete transport, syngamy, and early development; hence, accelerated ageing of the oviductal environment could have important implications for fertility and the health of future generations