Exploring research participation among cancer patients: Analysis of a national survey and an in-depth interview study

Background Inequalities in cancer research participation are thought to exist with certain groups under-represented in research populations; however, much of the evidence is based on small-scale studies. The aim of this study was to explore data from in-depth interviews with cancer patients and a large national survey to investigate variation in who is asked to participate in research and who takes part. Methods Factors associated with research discussion and participation were explored in National Cancer Patient Experience Survey data using multivariate logistic regression and during in-depth interviews with 25 breast cancer patients. Results Survey data were available for 66,953 cancer patients; 30.4 % reported having discussions about, and 18.9 % took part in, research. Barriers to participation at staff, patient and trust level were evident; for example, staff were less likely to discuss research with older patients, Asian and black patients were less likely to take part and patients treated at specialist or teaching trusts had higher levels of discussion and participation. Interviews showed that patients’ willingness to participate changed over time and was not synonymous with participation as some were ineligible. Conclusion Some patient groups were less likely to have discussions about or participate in research. Analysis of this variation vis-à-vis the composition of the patient population may be useful to ensure that there is equity regarding the potential benefits of research participation and that research findings are applicable to target populations in the translational model

The effects of cancer research participation on patient experience: a mixed-methods analysis.

Patient-reported benefits of research participation have been described by study participants; however, many studies have small sample sizes or are limited to patient groups with poor prognoses. The purpose of this study was to explore the effects of research participation on patient experience using survey responses from a large, national sample of cancer patients (N = 66 462) and interviews with breast cancer patients attending a London trust. Multivariate logistic regression was used to investigate associations between taking part in research and positive patient experience. Based on our analysis, patients who participated in research were more likely to rate their overall care and treatment as 'very good/excellent' (ORadj :1.64, 95%CI: 1.53-1.76, P < 0.001) and to describe positive patient experiences, such as better access to non-standard care, better interactions with staff and being treated as an individual. However, findings from our interviews indicated that there was no common understanding of what constitutes cancer research and no clear delineation between research participation and standard care, from the patient perspective. Further work to explore how participation positively influences patient experience would be useful to develop strategies to improve care and treatment for all patients regardless of whether or not they choose, or have the opportunity, to take part in research

Prevalence of stroke and related burden among older people living in Latin America, India and China

Objectives Despite the growing importance of stroke in developing countries, little is known of stroke burden in survivors. the authors investigated the prevalence of self-reported stroke, stroke-related disability, dependence and care-giver strain in Latin America (LA), China and India.Methods Cross-sectional surveys were conducted on individuals aged 65+ (n=15 022) living in specified catchment areas. Self-reported stroke diagnosis, disability, care needs and care giver burden were assessed using a standardised protocol. for those reporting stroke, the correlates of disability, dependence and care-giver burden were estimated at each site using Poisson or linear regression, and combined meta-analytically.Results the prevalence of self-reported stroke ranged between 6% and 9% across most LA sites and urban China, but was much lower in urban India (1.9%), and in rural sites in India (1.1%), China (1.6%) and Peru (2.7%). the proportion of stroke survivors needing care varied between 20% and 39% in LA sites but was higher in rural China (44%), urban China (54%) and rural India (73%). Comorbid dementia and depression were the main correlates of disability and dependence.Conclusion the prevalence of stroke in urban LA and Chinese sites is nearly as high as in industrialised countries. High levels of disability and dependence in the other mainly rural and less-developed sites suggest underascertainment of less severe cases as one likely explanation for the lower prevalence in those settings. As the health transition proceeds, a further increase in numbers of older stroke survivors is to be anticipated. in addition to prevention, stroke rehabilitation and long-term care needs should be addressed.Wellcome TrustWorld Health Organization (India, Dominican Republic and China)US Alzheimer's AssociationFONACIT/ CDCH/ UCV (Venezuela)Kings Coll London, Inst Psychiat, Epidemiol Sect, Hlth Serv, London SE5 8AF, EnglandKings Coll London, Inst Psychiat, Clin Neurosci Div, London SE5 8AF, EnglandUniv Nacl Pedro Henriquez Urena, Geriatr Sect, Santo Domingo, Dominican RepUniv Peruana Cayetano Heredia, Lima, PeruPeking Univ, Inst Mental Hlth, Div Social Psychiat & Behav Med, Beijing 100871, Peoples R ChinaChristian Med Coll & Hosp, Vellore, Tamil Nadu, IndiaMed Univ Havana, Dept Clin Sci, Havana, CubaCaracas Univ Hosp, Dept Med, Caracas, VenezuelaNatl Inst Neurol & Neurosurg Mexico, Mexico City, DF, MexicoVHS, Dept Community Hlth, Chennai, Tamil Nadu, IndiaUniversidade Federal de São Paulo, Dept Psychiat, São Paulo, BrazilUniv Ciencias Med Matanzas, Dept Internal Med, Matanzas, CubaKings Coll London, Inst Psychiat, Epidemiol Sect, Populat Res Dept, London SE5 8AF, EnglandUniversidade Federal de São Paulo, Dept Psychiat, São Paulo, BrazilWellcome Trust: GR066133Wellcome Trust: GR08002US Alzheimer's Association: IIRG-04-1286Web of Scienc

Stratified, precision or personalised medicine? Cancer services in the 'real world' of a London hospital

We conducted ethnographic research in collaboration with a large research-intensive London breast cancer service in 2013-14 so as to understand the practices and potential effects of stratified medicine. Stratified medicine is often seen as a synonym for both personalised and precision medicine but these three terms, we found, also related to distinct facets of treatment and care. Personalised medicine is the term adopted for the developing 2016 NHS England Strategy, in which breast cancer care is considered a prime example of improved biological precision and better patient outcomes. We asked how this biologically stratified medicine affected wider relations of care and treatment. We interviewed formally 33 patients and 23 of their carers, including healthcare workers; attended meetings associated with service improvements, medical decision-making, public engagement, and scientific developments as well as following patients through waiting rooms, clinical consultations and other settings. We found that the translation of new protocols based on biological research introduced further complications into an already-complex patient pathway. Combinations of new and historic forms of stratification had an impact on almost all patients, carers and staff, resulting in care that often felt less rather than more personal

Informationssuche und Informationsgewichtung im Kontext der Personalselektion: Ergebnisse zweier experimenteller Studien

Available from Bibliothek des Instituts fuer Weltwirtschaft, ZBW, Duesternbrook Weg 120, D-24105 Kiel A 177794 / FIZ - Fachinformationszzentrum Karlsruhe / TIB - Technische InformationsbibliothekSIGLEDEGerman

Measuring the invisible: perinatal health outcomes of unregistered women giving birth in Belgium

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Measuring the invisible: perinatal health outcomes of unregistered women giving birth in Belgium, a population-based study.

The unregistered population remains under-researched because of its "invisible" status in statistics. Studies on perinatal health outcomes of unregistered women remains particularly limited. Our objectives were 1) to describe the sociodemographic profiles of women who are not legally residing in Belgium and 2) to analyze the associations of registration status with pregnancy outcomes according to socioeconomic status and nationality.info:eu-repo/semantics/publishe

Influence of time since naturalisation on socioeconomic status and low birth weight among immigrants in Belgium. A population-based study.

Increasingly studies show that immigrants have different perinatal health outcomes compared to native-born women. Nevertheless, we lack a detailed examination of the combined effects of maternal immigrant trajectory and socioeconomic status on perinatal outcomes. Our objective was to analyze the influence of time since naturalization on low birth weight and maternal socioeconomic status in Belgium.SCOPUS: ar.jinfo:eu-repo/semantics/publishe

Risk of macrosomia and low birthweight among immigrants in Belgium, a perfect mirror?

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Exploring social inequalities in the use and experience of prenatal care in Brussels

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