132 research outputs found
Perceived changes to quality of life indicators following a physical activity intervention for recovering cancer patients: A qualitative study
The aim of this study was to examine the perceived changes to the quality of life (QoL) for a group of recovering cancer patients, following 6 months of physical activity.
Background
Evidence suggests that physical activity can improve the QoL of recovering cancer patients, reducing many of the side-effects of cancer and its related treatments, including depression, anxiety, chronic fatigue and improve physical and psychological health.
Method
A qualitative study with 14 mixed site cancer patients aged 43-70 (12 women, 2 men). The intervention was in 2 parts the first part was an 8-week physical activity programme, the second part related to a period of non-supervised, physical activity for 4 months (6 months in total). The Programme took place at a university in the South West of England. Semi-structured interviews with patients took place 3 times over 6 months. A grounded theory approach was used to analyse the data.
Results
We found that prior to the 6-month physical activity intervention many of the patients were anxious about being able to complete the initial 8 week programme. Anxieties related to low self-esteem and the chronic fatigue resulting from their cancer treatment. Consequently several patients expressed concerns about their ability to help themselves self-manage their recovery through physical activity. On completion of the intervention the majority of patients reported improvements in their perceived QoL relating to their ability to self-manage, their self-efficacy, energy levels, along with decreases in chronic fatigue.
Conclusion Our study has provided valuable insights into how the perceived QoL of a group of recovering cancer patients can be improved through a combined 6-month period of supervised and independent physical activity. These findings serve as further evidence of the effectiveness of a person centred healthcare approach for recovering cancer patients
Cost-effectiveness of targeted exome analysis as a diagnostic test in glomerular diseases
Background: Despite the emergence of diagnostic and clinical utility evidence in nephrology, publicly funded access to genomic testing is restricted in most health care systems. To establish genomic sequencing as a clinical test, an evaluation of cost-effectiveness is urgently required.
Methods: An economic evaluation, informed by a primary clinical study and available clinical evidence and guidelines in nephrology, was performed to evaluate the cost-effectiveness and optimal timing of exome sequencing (ES) in adults and children with suspected monogenic glomerular diseases compared with nongenomic investigations (NGIs). Six diagnostic strategies reflecting current practice and recommended models of care in Australia were modeled: (i) NGIs, (ii) late gene panel followed by ES, (iii) late ES, (iv) early gene panel, (v) early gene panel followed by ES, and (vi) early ES.
Results: ES with targeted analysis achieved a diagnosis in 23 of 63 (36.5%) adults and 10 of 24 (41.6%) children. NGIs were estimated to diagnose 4.0% of children, with an average estimated cost of AU3230 per additional diagnosis compared with NGIs. In adults, NGIs was estimated to diagnose 8% of patients, with an average estimated cost of AU5460 relative to NGIs.
Conclusions: Early ES with targeted analysis was effective for diagnosing monogenic kidney disease, with substantial cost savings in children
Experimental Zika Virus Infection in the Pregnant Common Marmoset Induces Spontaneous Fetal Loss and Neurodevelopmental Abnormalities.
During its most recent outbreak across the Americas, Zika virus (ZIKV) was surprisingly shown to cause fetal loss and congenital malformations in acutely and chronically infected pregnant women. However, understanding the underlying pathogenesis of ZIKV congenital disease has been hampered by a lack of relevant in vivo experimental models. Here we present a candidate New World monkey model of ZIKV infection in pregnant marmosets that faithfully recapitulates human disease. ZIKV inoculation at the human-equivalent of early gestation caused an asymptomatic seroconversion, induction of type I/II interferon-associated genes and proinflammatory cytokines, and persistent viremia and viruria. Spontaneous pregnancy loss was observed 16-18 days post-infection, with extensive active placental viral replication and fetal neurocellular disorganization similar to that seen in humans. These findings underscore the key role of the placenta as a conduit for fetal infection, and demonstrate the utility of marmosets as a highly relevant model for studying congenital ZIKV disease and pregnancy loss
What are we missing? Risk behaviors among Arabâ American adolescents and emerging adults
Background and purposeResearch on Arabâ Americans as a distinct ethnic group is limited, especially when considering the health of Arabâ American youth. This study describes health risk (substance use, violence); health promotive behaviors (hope, spirituality); and sexual activity (oral, vaginal, anal sex) of Arabâ American adolescents and emerging adults (aged 15â 23) within their life context, as well as the association between these behaviors.MethodsA secondary analysis of data on a subset of Arabâ American participants obtained from a randomizedâ control trial was utilized to conduct mixed methods analyses. Qualitative analyses completed on the openâ ended questions used the constant comparative method for a subsample (n = 24) of participants. Descriptive quantitative analyses of survey data utilized bivariate analyses and stepwise logistic regression to explore the relation between risk behaviors and sexual activity among the full sample (n = 57).ConclusionsQualitative analyses revealed two groups of participants: (a) multiple risk behaviors and negative lifeâ events, and (b) minimal risk behaviors and positive lifeâ events. Quantitative analyses indicated older youth, smokers, and those with higher hope pathways were more likely to report vaginal sex.Implications for practiceThe unique cultural and social contexts of Arabâ American youth provide a framework for recommendations for the prevention of risk behaviors.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/134166/1/jaan12352.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/134166/2/jaan12352_am.pd
PREFâNET: a patient preference and experience study of lanreotide autogel administered in the home versus hospital setting among patients with gastroenteropancreatic neuroendocrine tumours in the UK
Purpose: PREF-NET reported patientsâ experience of SomatulineÂŽ (lanreotide) AutogelÂŽ (LAN) administration at home and in hospital among patients with gastroenteropancreatic neuroendocrine tumours (GEP-NETs).
Methods: PREF-NET was a multicentre, cross-sectional study of UK adults (aged ⼠18 years) with GEP-NETs receiving a stable dose of LAN, which comprised of (1) a quantitative online survey, and (2) qualitative semi-structured interviews conducted with a subgroup of survey respondents. The primary objective was the description of overall patient preference for home versus hospital administration of LAN. Secondary objectives included describing patient-reported opinions on the experience and associated preference for each administration setting, and the impact on healthcare utilisation, societal cost, activities of daily living and health-related quality of life (HRQoL).
Results: In the primary analysis (80 patients; mean age 63.9 years), 98.7% (95% confidence interval [CI]: 96.1â100.0) of patients preferred to receive LAN at home, compared with 1.3% (95% CI: 0.0â3.9) who preferred the hospital setting. Among participants, over half (60.3%) received their injection from a non-healthcare professional. Most patients (79.5% [95% CI: 70.5â88.4]) reported a positive effect on HRQoL after the switch from hospital to home administration. Qualitative interviews (20 patients; mean age 63.6 years) highlighted that patients preferred home administration because it improved overall convenience; saved time and costs; made them feel more comfortable and relaxed, and less stressed; and increased confidence in their ability to self-manage their treatment.
Conclusion: Almost all patients preferred to receive LAN treatment at home rather than in hospital with increased convenience and psychological benefits reported as key reasons for this preference
Understanding the Patient Experience with Carcinoid Syndrome: Exit Interviews from a Randomized, Placebo-Controlled Study of Telotristat Ethyl
Purpose: Telotristat ethyl, an oral tryptophan hydroxylase inhibitor, is intended to treat carcinoid syndrome by reducing serotonin production. Telotristat ethyl was evaluated in TELESTAR, a Phase III study for patients who had carcinoid syndrome with at least 4 bowel movements (BMs) per day and who were receiving somatostatin analogue therapy. This interview substudy was conducted to provide insight into the patient experience in TELESTAR and to help understand whether reductions in BM frequency (the primary end point) and other symptoms were clinically meaningful.
Methods: Participating sites were asked to invite (before randomization) all eligible patients to telephone interviews scheduled at the end of the double-blind treatment period. Patients and interviewers were blinded to treatment.
Findings: All 35 interviewed participants reported diarrhea and/or excessive BMs at baseline. Patients reported that these symptoms negatively affected emotional, social, physical, and occupational well-being. Prespecified criteria for treatment response (achieving ⼠30% reduction in BM frequency for at least 50% of the days) were met by 8 of 26 patients taking telotristat ethyl and 1 of 9 patients taking placebo. All 8 patients taking telotristat ethyl described clinically meaningful reductions in BM frequency and were very satisfied with the ability of the study drug to control their carcinoid syndrome symptoms. Overall, reports of being very satisfied were observed in 12 patients taking telotristat ethyl and 0 taking placebo.
Implications: Patient interviews revealed that TELESTAR patients, at baseline, were significantly affected by their high BM frequency. Patient reports of their clinical trial experience supported the significance of the primary end point and clinical responder analysis in TELESTAR, helping identify and understand clinically meaningful change produced by telotristat ethyl
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A protocol for whole-exome sequencing in newborns with congenital deafness: a prospective population-based cohort
Introduction: The aetiology of congenital hearing loss is heterogeneous, and in many infants a genetic cause is suspected. Parents face a diagnostic odyssey when searching for a cause of their infantâs hearing loss. Through the Melbourne Genomics Health Alliance, a prospective cohort of infants will be offered whole-exome sequencing (WES) with targeted analysis in conjunction with chromosome microarray to determine the genetic causes of congenital hearing loss. Parents will also be offered the opportunity to receive additional results from their infantâs WES. Methods: Eligible infants will be identified through the Victorian Infant Hearing Screening Program and offered an appointment in a paediatrician-run clinic, a genetics assessment and enrolment in the Victorian Childhood Hearing Impairment Longitudinal Databank. If parents consent to WES, genes causing deafness will be analysed and they can choose to obtain additional findings. For the additional results component, a modified laboratory protocol has been designed for reporting of results in the absence of a relevant phenotype. Parentsâ experience of being offered WES will be evaluated using surveys. Discussion This project will provide descriptive analysis of the genetic aetiology of congenital hearing loss in this cohort and may provide data on genotypeâphenotype correlations. Additionally, choices regarding additional findings will be analysed. Participants will represent a diverse cross section of the population, increasing the ability to generalise results beyond the study group. Evaluation surveys will allow analysis of preferences around counselling, usefulness of a decision aid and adequacy of information provision
Publisher Correction: Experimental Zika Virus Infection in the Pregnant Common Marmoset Induces Spontaneous Fetal Loss and Neurodevelopmental Abnormalities.
A correction to this article has been published and is linked from the HTML and PDF versions of this paper. The error has been fixed in the paper
Atomic layer deposited electron transport layers in efficient organometallic halide perovskite devices
Amorphous TiO2 and SnO2 electron transport layers (ETLs) were deposited by low-temperature atomic layer deposition (ALD). Surface morphology and x-ray photoelectron spectroscopy (XPS) indicate uniform and pinhole free coverage of these ALD hole blocking layers. Both mesoporous and planar perovskite solar cells were fabricated based on these thin films with aperture areas of 1.04 cm2 for TiO2 and 0.09 cm2 and 0.70 cm2 for SnO2. The resulting cell performance of 18.3 % power conversion efficiency (PCE) using planar SnO2 on 0.09 cm2 and 15.3 % PCE using mesoporous TiO2 on 1.04 cm2 active areas are discussed in conjunction with the significance of growth parameters and ETL composition
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