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Nasir Hamid
Implementing advance care planning in heart failure: A qualitative study of primary healthcare professionals
Background Advance care planning (ACP) can improve the quality of life of patients suffering from heart failure (HF). However, primary care healthcare professionals (HCPs) find ACP difficult to engage with and patient care remains suboptimal. Aim To explore the views of primary care HCPs on how to improve their engagement with ACP in HF. Design and setting A qualitative interview study with GPs and primary care nurses in England. Method Semi-structured interviews were conducted with a purposive sample of 24 primary care HCPs. Data were analysed using reflexive thematic analysis. Results Three main themes were constructed from the data: ACP as integral to holistic care in HF; potentially limiting factors to the doctor-patient relationship; and approaches to improve professional performance. Many HCPs saw the benefits of ACP as synonymous with providing holistic care and improving patients' quality of life. However, some feared that initiating ACP could irrevocably damage their doctor-patient relationship. Their own fear of death and dying, a lack of disease-specific communication skills, and uncertainty about the right timing were significant barriers to ACP. To optimise their engagement with ACP in HF, HCPs recommended better clinician-patient dialogue through question prompts, enhanced shared decision-making approaches, synchronising ACP across medical specialties, and disease-specific training. Conclusion GPs and primary care nurses are vital to deliver ACP for patients suffering from HF. HCPs highlighted important areas to improve their practice and the urgent need for investigations into better clinician-patient engagement with ACP.
Experiences of Reframing during Self-Directed Weight Loss and Weight Loss Maintenance: Systematic Review of Qualitative Studies
Background: Reframing means changing the way that a person thinks or feels about a weight loss attempt or weight loss maintenance to enhance its experience or facilitate its success. Although participants have described this, it has not been explored in the academic literature. Here, we set out to systematically review qualitative studies to examine the ways in which people use and experience reframing in self-directed weight loss. Methods: Seven electronic databases were searched to January 2017 for qualitative studies of adults with overweight or obesity attempting to lose weight or maintain weight loss through self-directed behavior change. Studies must have contained some information pertinent to reframing. Thematic synthesis was used to identify descriptive and analytical themes from the available data. Results: We included 23 studies, representing 723 participants. No study focused specifically on reframing. Most studies involved people who had tried to lose weight previously. In the most common examples of reframing, participants spoke of construing previous weight management attempts as “dieting”, whereas in current attempts they used reframing to move away from this concept. Participants spoke of finding reframing helpful because it removed the sense of depriving themselves and instead allowed them to construe the food choices as healthful. Likewise, the language of dieting created a sense of temporary effort, while construing this as a way of life allowed continuation of conscious control over energy balance without the feeling of undue effort. In some cases, these changes were bolstered by change in self-identity. Conclusions: Some people construe deliberate weight loss as a form of deprivation and cognitively reframe to avoid the negative emotions this creates and to prevent relapse. Reframing the dietary regimen as about healthy eating and a new way of life made weight control seem less burdensome for these participants and they felt able to maintain their efforts.
Experiences of Self-Monitoring in Self-Directed Weight Loss and Weight Loss Maintenance: Systematic Review of Qualitative Studies
The experience and role of self-monitoring in self-directed weight loss attempts may be distinctly different from that within formal interventions, and has yet to be fully explored. We systematically reviewed qualitative studies to examine experiences of self-monitoring as an aid to self-directed weight loss. Thematic synthesis was used to construct descriptive and analytical themes from the available data. In all, 22 studies (681 participants) were included, in which the uses of self-monitoring ranged from an aid to increase adherence to a tool for facilitating analysis. Self-monitoring also influenced and was influenced by self-perception and emotions. Feelings of shame were linked with abandonment of efforts. Findings highlight the centrality of interpretation of self-monitored data, the implications this interpretation has on sense of self, and the impact of broader discourses. Explicitly framing self-monitoring as a positive tool with which to aid analysis may encourage helpful use of this technique.
Online patient feedback: a scoping review and stakeholder consultation to guide health policy
Objective: To provide a synthesis of the current evidence base of online patient feedback using a scoping review and a consultation of stakeholders in England, UK. Methods: We searched MEDLINE, EMBASE, PsycINFO, CINAHL and the Social Science Citation Index and conducted hand searches up to January 2018. We included primary studies of internet-based reviews and other online feedback (e.g. social media and blogs) from patients, carers or the public about health care providers (individuals, services or organizations). Key findings were extracted and tabulated for further synthesis guided by the themes arising from a stakeholder consultation. Results: The review found that awareness and usage of online feedback is increasing. Most feedback is about physicians, and is typically positive. Online reviews and ratings are used by some service users to inform choice of provider or treatment while providers tend to be concerned about the validity and representativeness of feedback. Reviewed studies found that those who post feedback are generally not representative of the general population, tending to be younger and more educated, but online feedback does broadly correlate with some other measures of health care quality. Conclusions: In an increasingly digital society, where citizens provide and use feedback for a range of goods and services, online patient feedback can offer a convenient, low cost and widely accessible mechanism to capture experiences of health care, while being mindful to avoid issues of digital exclusion. This review provides important insights to inform policy development seeking to harness the opportunities offered by online feedback.
An overview of childhood cancer care and outcomes in Egypt: a narrative review
Childhood cancer is an urgent priority in Egypt, owing to a large number of children with cancer, the great need and demand for paediatric oncology services, limited resources/ funds and inferior survival outcomes. Therefore, an overview of the status of childhood cancer care in Egypt and an evidence-based approach towards optimal utilisation of resources/funds to improve this care are needed. This paper summarises key evidence about childhood cancer care and outcomes in Egypt. We conducted a narrative literature review using a structured search strategy of the MEDLINE database through the PubMed interface. All relevant evidence was summarised under five main sub-topics: (1) burden of childhood cancer in Egypt; (2) treatment approaches; (3) health outcomes; (4) costs and cost-effectiveness of treatment; and (5) barriers and facilitators to optimal childhood cancer care. We found high estimates of disease burden of childhood cancer in Egypt. Furthermore, childhood cancer treatment in Egypt is based on either implementing intensity-regulated protocols or adopting international protocols with or without adaptations to local contexts, leading to varying standards of care among the different treating centres. Limited data about the survival outcomes, costs and cost-effectiveness of treatment exist, although high-quality data from retrospective cohort studies were published from a large paediatric oncology centre (Children’s Cancer Hospital Egypt–57357). As Egypt joins the WHO Global Initiative for Childhood Cancers as a focus country, it is prepared to move towards streamlining national efforts to implement a national childhood cancer plan to advance care, improve health outcomes and optimise resource use. Through these efforts, Egypt could become a beacon of hope and a role model to other low- and middle-income countries seeking to improve their childhood cancer care.
Understanding Measurement of Postural Hypotension (UMPH): a nationwide survey of general practice in England.
Background Postural hypotension (PH) is associated with excess mortality, falls and cognitive decline. PH is poorly recorded in routine general practice (practice) records. Few practice studies have explored measurement and diagnosis of PH. Aim To understand how PH is measured, diagnosed and managed in practice. Design and setting Online survey of practice staff in England. Method Clinical Research Networks distributed the survey to practices, seeking individual responses from any clinical staff involved in routine blood pressure (BP) measurement. Responses were analysed according to role and demographic data using descriptive statistics. Multivariable modelling of undertaking postural BP measurements was performed. Results 703 responses were received from 243 practices (mean practice-level response rate 17%). Half (362; 51%) of respondents were doctors, 196 (28%) practice nurses and 77 (11%) healthcare assistants (HCAs). Eight percent did not routinely check for PH, usually citing time constraints. For the remaining 92%, postural symptoms were the predominant reason for checking (97% respondents); only 24% cited any other guideline indication for PH testing. 77% used sit-to-stand BP measurements; only 25% measured standing BP for more than one minute. On regression modelling, other professionals tested less for PH than doctors (Odds ratios: nurses 0.323 (95% confidence interval 0.117 to 0.894), HCAs 0.102 (0.032 to 0.325), pharmacists 0.986 (0.024 to 0.412)). Conclusion Awareness of reasons, besides symptoms, and adherence to guidelines for PH testing, are low. Time is the key barrier to improved testing for PH. Clarity on pragmatic methods of measuring PH in practice would also facilitate measurement uptake.
Validity and timeliness of cancer diagnosis data collected during a prospective cohort study and reported by the English and Welsh cancer registries: a retrospective, comparative analysis
Background: Cancer places a high burden on society and health-care systems. Cancer research requires high-quality data, which is resource-intensive to obtain. Using administrative datasets such as cancer registries could improve the efficiency of cancer studies if data were valid and timely. We aimed to compare the validity and timeliness of diagnostic cancer data on-site during the SYMPLIFY study to that obtained from the cancer registries of England and Wales. Methods: Cancer data were collected from 5461 participants across 44 hospital sites during a prospective observational study in England and Wales, SYMPLIFY (ISRCTN10226380). Linked cancer data were obtained from Digital Health and Care Wales (DHCW), the Welsh Cancer Intelligence and Surveillance Unit (WCISU), and the English National Cancer Registration Dataset (NCRD) and Rapid Cancer Registration Dataset (RCRD), regularly between April, 2022, and September, 2023. The primary objectives of the study were to evaluate the validity (via assessment of the proportion of completed data fields and concordance with SYMPLIFY sites), and timeliness of the data in all datasets, for all cancers diagnosed within 9 months of study enrolment. Data fields investigated were cancer site via International Classification of Disease, 10th Revision (ICD-10) code; cancer morphology via International Classification of Diseases for Oncology, 3rd Edition (ICD-O-3) morphology histology code and broad morphological grouping; overall stage; and TNM classification. Findings: For data collected between April, 2022, and September, 2023, completeness at the last data cut available for each dataset ranged from 84% to 100% for ICD-O-3 morphology, from 43% to 100% for overall stage, and from 74% to 83% for TNM stage. The concordance between SYMPLIFY data and NCRD was 96% (95% CI 92–98) for ICD-10, 60% (53–66) for ICD-O-3 morphology, 83% (78–88) for ICD-O-3 broad morphology groupings, 73% (67–78) for stage, and 51% (44–59) for TNM; and with WCISU was 89% (95% CI 81–94) for ICD-10, 63% (53–73) for ICD-O-3 morphology, 80% (70–87) for ICD-O-3 broad morphology groupings, 83% (74–90) for overall stage, and 49% (38–61) for TNM stage. Concordance between SYMPLIFY and RCRD was 95% (95% CI 92–98) for ICD-10, 67% (60–74) for ICD-O-3 morphology, 85% (79–90) for ICD-O-3 broad morphology groupings, and 73% (65–80) for overall stage; and between SYMPLIFY and DHCW was 96% (91–99) for ICD-10, 74% (64–83) for ICD-O-3 morphology, 84% (75–91) for ICD-O-3 broad morphology groupings, and 87% (74–95) for stage. The SYMPLIFY dataset reached completion at 12 months post-enrolment in November, 2022, compared with 13 months for NCRD in December, 2023. RCRD and DHCW reached completion at 13 months and 15 months post-enrolment, in December, 2022, and February, 2023, respectively. Interpretation: We report similar completeness of data fields, concordance, and timeliness between on-site and centrally collected cancer outcomes data. Our findings suggest that central registry data can help alleviate the resource burden in clinical trials and improve cancer research. Cancer registries might need additional resources to provide data for registry-based trials at scale. Funding: GRAIL Bio UK.
Rapid emergence of dolutegravir resistance on second-line dolutegravir-based ART
The integrase strand transfer inhibitor, dolutegravir (DTG), is widely used in first- and second-line antiretroviral therapy (ART) regimens in South Africa. We describe an adult with virological failure on second-line tenofovir/lamivudine/dolutegravir (TLD2) and rapid emergence of DTG resistance within 3 months, while receiving rifapentine-based tuberculosis preventive therapy.
Optimising neonatal services for very preterm births between 27+0 and 31+6 weeks gestation in England: the OPTI-PREM mixed-methods study.
AIM: To investigate, for preterm babies born between 27+0 and 31+6 weeks gestation in England, optimal place of birth and early care. DESIGN: Mixed methods. SETTING: National Health Service neonatal care, England. METHODS: To investigate whether birth and early care in neonatal intensive care units (tertiary units) compared to local neonatal units (non-tertiary units) influenced gestation-specific survival and other major outcomes, we analysed data from the National Neonatal Research Database, for 29,842 babies born between 27+0 and 31+6 weeks gestation and discharged from neonatal care between 1 January 2014 and 31 December 2018. We utilised an instrumental variable (maternal excess travel time between local neonatal units and neonatal intensive care units) to control for unmeasured differences. Sensitivity analyses excluded postnatal transfers within 72 hours of birth and multiple births. Outcome measures were death in neonatal care, infant mortality, necrotising enterocolitis, retinopathy of prematurity, severe brain injury, bronchopulmonary dysplasia, and receipt of breast milk at discharge. We also analysed outcomes by volume of neonatal intensive care activity. We undertook a health economic analysis using a cost-effectiveness evaluation from a National Health Service perspective and using additional lives saved as a measure of benefit, explored differences in quality of care in high compared with low-performing units and performed ethnographic qualitative research. RESULTS: The safe gestational age cut-off for babies to be born between 27+0 and 31+6 weeks and early care at either location was 28 weeks. We found no effect on mortality in neonatal care (mean difference -0.001; 99% confidence interval -0.011 to 0.010; p = 0.842) or in infancy (mean difference -0.002; 99% confidence interval -0.014 to 0.009; p = 0.579) (n = 18,847), including after sensitivity analyses. A significantly greater proportion of babies in local neonatal units had severe brain injury (mean difference -0.011; 99% confidence interval -0.022 to -0.001; p = 0.007) with the highest mean difference in babies born at 27 weeks (-0.040). Those transferred in the first 72 hours were more likely to have severe brain injury. For 27 weeks gestation, birth in centres with neonatal intensive care units reduced the risk of severe brain injury by 4.2% from 11.9% to 7.7%. The number needed to treat was 25 (99% confidence interval 10 to 59) indicating that 25 babies at 27 weeks would have to be delivered in a neonatal intensive care unit to prevent one severe brain injury. For babies born at 27 weeks gestation, birth in a high-volume unit (> 1600 intensive care days/year) reduced the risk of severe brain injury from 0.242 to 0.028 [99% confidence interval 0.035 to 0.542; p = 0.003; number needed to treat = 4 (99% confidence interval 2 to 29)]. Estimated annual total costs of neonatal care were £262 million. The mean (standard deviation) cost per baby varied from £75,594 (£34,874) at 27 weeks to £27,401 (£14,947) at 31 weeks. Costs were similar between neonatal intensive care units and local neonatal units for births at 27+0 to 29+6 weeks gestation, but higher for local neonatal units for those born at 30+0 to 31+6 weeks. No difference in additional lives saved were observed between the settings. These results suggested that neonatal intensive care units are likely to represent value for money for the National Health Service. However, careful interpretation of this results should be exercised due to the ethical and practical concerns around the reorganisation of neonatal care for very preterm babies from local neonatal units to neonatal intensive care units purely on the grounds of cost savings. We identified a mean reduction in length of stay (1 day; 95% confidence interval 1.029 to 1.081; p
Severe Dietary Energy Restriction for Compensated Cirrhosis Due to Metabolic Dysfunction-Associated Steatotic Liver Disease: A Randomised Controlled Trial.
BACKGROUND: Compensated cirrhosis due to metabolic dysfunction-associated steatotic liver disease (CC-MASLD) increases morbidity and mortality risk but has no aetiology-specific treatment. We investigated the safety and efficacy signals of severe energy restriction. METHODS: In this randomised controlled trial, adults with CC-MASLD and obesity in a tertiary hepatology centre were randomised 2:1 to receive one-to-one remote dietetic support with a low-energy (880 kcal/day, 80 g protein/day) total diet replacement programme for 12 weeks and stepped food reintroduction for another 12 weeks or standard of care (SoC). Given the exploratory nature of the study, three pre-defined co-primary outcomes were used to assess safety and efficacy signals: severe increases in liver biochemistry, changes in iron-corrected T1, and changes in liver stiffness on magnetic resonance elastography. Changes in liver steatosis on magnetic resonance imaging, physical performance based on the physical performance test and liver frailty index, and changes in fat-free mass were secondary outcomes. Magnetic resonance outcomes were assessed blind. RESULTS: Between February 2022 and September 2023, 17 participants (36% female, median [IQR] age 58 [7.5] years) were randomised to SoC (n = 6) or intervention (n = 11). The trial stopped earlier than planned due to slow recruitment rate. 91% and 94% of participants completed the intervention and attended the 24-week follow-up, respectively. Compared with the SoC, the between-group weight change in the intervention was -11.9 kg (95% CI: -17.2, -6.6, p
Adequacy of clinical guideline recommendations for patients with low-risk cancer managed with monitoring: systematic review
Objectives: The aim of this systematic review was to summarize national and international guidelines that made recommendations for monitoring patients diagnosed with low-risk cancer. It appraised the quality of guidelines and determined whether the guidelines adequately identified patients for monitoring, specified which tests to use, defined monitoring intervals, and stated triggers for further intervention. It then assessed the evidence to support each recommendation. Study Design and Setting: Following the Preferred Reporting Items for Systematic Reviews and Meta-analyses, we searched PubMed and Turning Research into Practice databases for national and international guidelines' that were written in English and developed or updated between 2012 and 2023. Quality of individual guidelines was assessed using the AGREE II tool. Results: Across the 41 published guidelines, 48 different recommendations were identified: 15 (31%) for prostate cancer, 11 (23%) for renal cancer, 6 (12.5%) for thyroid cancer, and 10 (21%) for blood cancer. The remaining 6 (12.5%) were for brain, gastrointestinal, oral cavity, bone and pheochromocytoma and paraganglioma cancer. When combining all guidelines, 48 (100%) stated which patients qualify for monitoring, 31 (65%) specified which tests to use, 25 (52%) provided recommendations for surveillance intervals, and 23 (48%) outlined triggers to initiate intervention. Across all cancer sites, there was a strong positive trend with higher levels of evidence being associated with an increased likelihood of a recommendation being specific (P = 0.001) and the evidence for intervals was based on expert opinion or other guidance. Conclusion: With the exception of prostate cancer, the evidence base for monitoring low-risk cancer is weak and consequently recommendations in clinical guidelines are inconsistent. There is a lack of direct evidence to support monitoring recommendations in the literature making guideline developers reliant on expert opinion, alternative guidelines, or indirect or nonspecific evidence.
Work Hard, Party Hard: Harm Reduction in a Postsecondary Setting
In the context of the increasing focus on harms, psychological safety, and mental health in post-secondary settings, this qualitative study explores the challenges and opportunities for harm reduction through focus groups with student leaders, service providers, and administrators in one large Canadian university. Key themes explored by participants include a pervasive work hard, party culture, clashes regarding how to define and operationalize harm reduction, broad approaches to harm reduction in tension with the risk of becoming a band-aid solution, and knowledge transfer and privilege in an academic context. These findings suggest possible avenues for harm reduction that could be implemented as part of the new post-secondary standard, as well as in society as a whole.
Widening Patient Engagement for Rare Disease Drug Trials: The Perspectives of Patients With Idiopathic Pulmonary Fibrosis on Participating in Clinical Drug Trials and Drug Trial Design.
BACKGROUND: Research about patient engagement for people with rare diseases has identified how the experiences of some members of the public are overlooked in relation to clinical trial design and trial participation. As part of a knowledge transfer partnership (KTP), the authors were granted access to patient insight reports about the needs of people with idiopathic pulmonary fibrosis (IPF), to inform clinical trial design and marketing strategy. These were contrasted with data from qualitative interviews, informed by and collected from people with IPF and the clinical staff who recruit them to trials. OBJECTIVE: To identify patient and professional perspectives for IPF drug trials to create opportunities for innovation in patient engagement. DESIGN: Ethnography. Qualitative researcher embedded in a pharmaceutical organisation. SETTING AND PARTICIPANTS: International patient insight reports to inform a clinical trial protocol (n = 1) and marketing strategy (n = 6), including the experiences of over 100 patients with IPF. In the United Kingdom, interviews with patients with IPF (n = 32) and the staff who support them clinically and recruit them to trials of new medicines (n = 19) at one specialist interstitial lung disease (ILD) centre. RESULTS: Methodological practices inherent in inpatient insight reports ensured the perspectives of some people with IPF were overlooked. Interviews with a more marginalised population of people with IPF, and the staff who support them, identified that some found trial information confusing, trial practices frustrating and the opportunities to engage in trial design absent. DISCUSSION: Current pharmaceutical practices of working with contract research organisations and patient organisations exclude the perspectives of patients with IPF who do not engage with either. Trial recruitment information needs to be tailored to the needs of individuals, and trial processes need to enable a wider group of patients to participate. CONCLUSIONS: People with IPF want the opportunity to participate in drug trials and trial science. However, methodological rigour and deliberative practices are required to enable a wider group of patients to have a stake in the design and conduct of drug trials for rare diseases. The challenge now is for regulators to mandate such inclusive practices and for pharmaceutical organisations to adopt them. PATIENT OR PUBLIC CONTRIBUTION: A Patient Advisory Group (PAG) comprising six people with IPF gave input on the research protocol and then on the scope and content of the ongoing research. Two patients from international patient organisations served as a Steering Group (SG). Members of these groups provided their interpretations of the study findings and gave insight on their experiences in clinical design and participation.
#TreatmentResistantDepression: A qualitative content analysis of Tweets about difficult-to-treat depression
Introduction: Treatment-resistant depression (TRD) is depression unresponsive to antidepressants and affects 55% of British primary care users with depression. Current evidence is from secondary care, but long referral times mean general practitioners (GPs) manage TRD. Studies show that people with depression use Twitter to form community and document symptoms. However, Twitter remains a largely unexplored space of documented patient experience. Twitter data could provide valuable insights into learning about primary care experiences of TRD. In this study, we explored Twitter comments and conversations about TRD and produced patient-driven recommendations. Methods: Tweets from UK-based users were collected manually and using a browser extension in June 2021. Conventional content analysis was used to provide an overview of the Tweets, followed by interpretation to understand why Twitter may be important to people with TRD. Results: A total of 415 Tweets were organised into five clusters: self-diagnosis, symptoms, support, small wins and condition experts. These Tweets were interpreted as showing Twitter as a community for people with TRD. People had a collective sense of illness identity and were united in their experiences of TRD. However, users in the community also highlighted the absence of effective GP care, leading users to position themselves as condition experts. Users shared advice from a place of lived experience with the community but also shared potentially harmful information, including recommendations about nonevidence-based medications. Conclusions: Findings illuminate the benefits of the TRD Twitter community and also highlight that the perception of a lack of knowledge and support from GPs may lead community members to advise nonevidenced-based medications. Patient and Public Contribution: This study was led by a person with lived experience of TRD and bipolar. Two public contributors with mental health conditions gave feedback on our study protocol and results.
How are maternal and fetal outcomes incorporated when measuring benefits of interventions in pregnancy? Findings from a systematic review of cost-utility analyses
Objective: Medical interventions used in pregnancy can affect the length and quality of life of both the pregnant person and fetus. The aim of this systematic review was to identify and describe the theoretical frameworks that underpin outcome measurement in cost-utility analyses of pregnancy interventions. Methods: Searches were conducted in the Paediatric Economic Database Evaluation (PEDE) database (up to 2017), as well as Medline, Embase and EconLit (2017–2019). We included all cost-utility analyses of any intervention given during pregnancy, published in English. We conducted a narrative synthesis of: study design; outcome construction (life expectancy, quality adjustment, discount rate); and whether the Incremental Cost-Effectiveness Ratio (ICER) was constructed using maternal or fetal outcomes. Where both outcomes were included, methods for combining them were extracted. Results: We identified 127 cost-utility analyses in pregnancy, of which 89 reported QALYs and 38 DALYs. Outcomes were considered solely for the fetus in 59 studies (47%), solely for the pregnant person in 13 studies (10%), and for both in 49 studies (39%). The choice to include or exclude one or both sets of outcomes was not consistent within particular clinical areas. Where outcomes for both mother and baby were included, methods for combining these outcomes varied. Twenty-nine studies summed QALYs/DALYs for maternal and fetal outcomes, with no adjustment. The remaining 20 took a variety of approaches designed to weigh maternal and fetal outcomes differently. These include (1) treating fetal outcomes as a component of maternal quality of life, rather than (or in addition to) an independent individual health outcome; (2) treating the maternal-fetal dyad as a single entity and applying a single utility value to each combination of outcomes; and (3) assigning a shorter time horizon to fetal outcomes to reduce the weight of lifetime fetal outcomes. Each approach made different assumptions about the relative value of maternal and fetal health outcomes, demonstrating a lack of consistency and the need for guidance. Conclusion: Methods for capturing QALY/DALY outcomes in cost-utility analysis in pregnancy vary widely. This lack of consistency indicates a need for new methods to support the valuation of maternal and fetal health outcomes.