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"Frances Reid"
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The World Ovarian Cancer Coalition Every Woman Study: identifying challenges and opportunities to improve survival and quality of life
2021
IntroductionWith the global incidence of ovarian cancer set to rise by 55% to 371 000 per year by 2035, current 5-year survival rates below 50%, and 15% of women with ovarian cancer dying within 2 months of diagnosis, urgent action is required to improve survival and quality of life.ObjectiveTo deal with the evidence gap relating to the experience of women with the disease around the globe and identify opportunities to drive progress.MethodsThe study included a review of global trends in incidence, mortality, and survival (October 2017); qualitative interviews with women and clinicians in 16 countries (December 2017); and an online survey for women available in 15 different languages (open for 2 months, March to early May 2018). Women were eligible to participate if they had been diagnosed in the previous 5 years and were proficient in one of the 15 languages offered.ResultsA total of 1531 women from 44 countries took part in the analysis. On average, 69.1% of women were not aware of ovarian cancer before their own diagnosis, varying from 50.9% (Hungary) to 86.4% (Brazil). A total of 78.3% of symptomatic women sought medical help, varying from 62.8% (Japan) to 87.7% (UK). Fewer than half of the women visited a doctor within 1 month (46.3%) of experiencing symptoms, varying from 38.5% (USA) to 77.3% (Germany), and a quarter of women waited 3 months or more. On average, 43.2% of women were diagnosed within 1 month of visiting a doctor, ranging from 30% (UK) to 62.3% (Italy). The average estimated time from experiencing symptoms to diagnosis was 31 weeks, but this ranged from 21.3 (Germany) to 39.7 (Brazil). Rates of post-diagnosis genetic testing ranged from 5.0% (Japan) to 79.1% (USA). Clinicians indicated that access to specialist treatment in high-volume centers varies greatly by country and region.ConclusionThe findings of this study identify some of the major challenges and opportunities to improve the time to diagnosis and management of women with ovarian cancer. These problems vary widely by country, and reducing the variability is an important first step towards improving outcomes for women with ovarian cancer.
Journal Article
The every woman study™ low- and middle-income countries edition protocol: A multi-country observational study to assess opportunities and challenges to improving survival and quality of life for women with ovarian cancer
by
Leon, David Cantu-De
,
Soerjomataram, Isabelle
,
Strömsholm, Eva-Maria
in
Adult
,
Africa - epidemiology
,
Asia - epidemiology
2024
Ovarian cancer is a challenging disease to diagnose and treat effectively with five-year survival rates below 50%. Previous patient experience research in high-income countries highlighted common challenges and opportunities to improve survival and quality of life for women affected by ovarian cancer. However, no comparable data exist for low-and middle-income countries, where 70% of women with the disease live. This study aims to address this evidence gap.
This is an observational multi-country study set in low- and middle-income countries. We aim to recruit over 2000 women diagnosed with ovarian cancer across multiple hospitals in 24 countries in Asia, Africa and South America. Country sample sizes have been calculated (n = 70-96 participants /country), taking account of varying national five-year disease prevalence rates. Women within five years of their diagnosis, who are in contact with participating hospitals, are invited to take part in the study. A questionnaire has been adapted from a tool previously used in high-income countries. It comprises 57 multiple choice and two open-ended questions designed to collect information on demographics, women's knowledge of ovarian cancer, route to diagnosis, access to treatments, surgery and genetic testing, support needs, the impact of the disease on women and their families, and their priorities for action. The questionnaire has been designed in English, translated into local languages and tested according to local ethics requirements. Questionnaires will be administered by a trained member of the clinical team.
This study will inform further research, advocacy, and action in low- and middle-income countries based on tailored approaches to the national, regional and global challenges and opportunities. In addition, participating countries can choose to repeat the study to track progress and the protocol can be adapted for other countries and other diseases.
Journal Article
ERG Deregulation Induces PIM1 Over-Expression and Aneuploidy in Prostate Epithelial Cells
by
Reid, James Frances
,
Viltadi, Michela
,
Redaelli, Sara
in
Aneuploidy
,
Animals
,
Antineoplastic Agents - pharmacology
2011
The ERG gene belongs to the ETS family of transcription factors and has been found to be involved in atypical chromosomal rearrangements in several cancers. To gain insight into the oncogenic activity of ERG, we compared the gene expression profile of NIH-3T3 cells stably expressing the coding regions of the three main ERG oncogenic fusions: TMPRSS2/ERG (tERG), EWS/ERG and FUS/ERG. We found that all three ERG fusions significantly up-regulate PIM1 expression in the NIH-3T3 cell line. PIM1 is a serine/threonine kinase frequently over-expressed in cancers of haematological and epithelial origin. We show here that tERG expression induces PIM1 in the non-malignant prostate cell line RWPE-1, strengthening the relation between tERG and PIM1 up-regulation in the initial stages of prostate carcinogenesis. Silencing of tERG reversed PIM1 induction. A significant association between ERG and PIM1 expression in clinical prostate carcinoma specimens was found, suggesting that such a mechanism may be relevant in vivo. Chromatin Immunoprecipitation experiments showed that tERG directly binds to PIM1 promoter in the RWPE-1 prostate cell line, suggesting that tERG could be a direct regulator of PIM1 expression. The up-regulation of PIM1 induced by tERG over-expression significantly modified Cyclin B1 levels and increased the percentage of aneuploid cells in the RWPE-1 cell line after taxane-based treatment. Here we provide the first evidence for an ERG-mediated PIM1 up-regulation in prostate cells in vitro and in vivo, suggesting a direct effect of ERG transcriptional activity in the alteration of genetic stability.
Journal Article
O022/#296 The equity challenges of a large-scale ovarian cancer patient experience study in low- and middle-income countries: the every woman study™ (2022)
by
Kaidarova, Dilyara
,
Eiken, Mary
,
Bolatbekova, Raikhan
in
Focused Plenary Abstracts
,
Low income groups
,
Ovarian cancer
2022
ObjectivesOvarian cancer patient experience data is limited, especially in low- and middle-income countries (LMICs). The World Ovarian Cancer Coalition’s online study in 2018 attracted 1531 responses from 44 mainly high-income countries. Recognising the need for robust data to support national efforts to improve women’s survival and quality of life, the Coalition has partnered with the International Gynaecologic Cancer Society to adapt the Study for LMICs.MethodsAn Oversight Committee featuring equal clinical/patient representation from major geographical areas identified 31 potential countries based on income status. The Committee oversees the Study’s adaptation, advises on access issues, and applies a solutions-based approach to challenges.Results24 countries with up to 10 centres each are engaged, with a projected sample size of >2,000 women. Countries and even centres vary widely in data collection and service organisation. For some, this is their first national or international collaboration. Challenges include: Ensuring participating centres reflect variety of care Accommodating variability of language, literacy, and internet connectivity (interview, paper, secure electronic link) Coverage of core expenses (translation, ethics submission) Ensuring patients and centres with least resource can participate Developing an equitable approach to publication opportunities Balancing countries’ differing needs within the study approachAbstract O022/#296 Figure 1ConclusionsA unified approach among and even within some LMICs is not feasible. A flexible and pragmatic approach with local teams as well as open channels of communication are essential to challenging inequities on this scale. This approach may add complexity to data analysis, but early benefits are being derived as LMIC patient voices are heard.
Journal Article
Ovarian cancer symptom awareness and anticipated time to help-seeking for symptoms among UK women
2013
Objectives To determine levels of awareness of ovarian cancer symptoms and to identify barriers to help-seeking and predictors of a longer time to help-seeking in a UK female population-based sample. Methods A UK population-based sample of women [n=1000, including a subsample of women at higher risk due to their age (≥45 years, n=510)] completed the Ovarian Cancer Awareness Measure by telephone interview. Questions measured symptom awareness (using recall and recognition), barriers to medical help-seeking and anticipated time to help-seeking. Regression analyses identified predictors of a higher score on a scale of anticipated time to help-seeking. Results Most women (58% overall sample; 54% subgroup) were unable to recall any symptoms but 99% recognised at least one. Recognition was lowest for difficulty eating and persistently feeling full. In the sample overall, higher socio-economic status and higher endorsement of practical and service barriers independently predicted a longer anticipated time to help-seeking for more symptoms. White ethnicity was an additional predictor in the older subgroup. Conclusions This study suggests awareness of ovarian cancer symptoms is low in the UK, and varies widely between symptoms. It identifies variables that may be involved in a longer time to help-seeking for possible ovarian cancer symptoms and highlights the need for more in-depth research into the factors related to time to help-seeking in real-world situations.
Journal Article
Allergy teaching is suboptimal and heterogeneous in the undergraduate medical curriculum in the UK
by
Bethune, Claire
,
Reid, Emily Frances
,
Krishna, Mamidipudi Thirumala
in
Allergies
,
Allergy and Immunology - education
,
anaphylactic reactions
2019
AimTo record the level of allergy teaching occurring in UK medical schools. The UK has experienced an ‘allergy epidemic’ during the last 3–4 decades. Previous government reviews have emphasised the importance of allergy education and training, treating common allergies in primary care with referral pathways to a specialist and the creation of regional networks. It is acknowledged that the delivery of allergy teaching in UK medical schools is variable, despite the well-recognised need.MethodsAll consultant members of the British Society for Allergy and Clinical Immunology involved in teaching medical students were invited to partake in qualitative research, employing an online questionnaire for data collection. Participants were asked to comment on the format of the allergy teaching delivered, the student participation and the clinical opportunities provided. Students were recruited to complete a similar survey as supporting evidence.Results44 responses were collected, representing 64.7% of medical schools in the UK. Clinical allergy placements were compulsory in 31.8% of medical schools that responded. In 36.4%, it was reported that less than 10% of students had an opportunity to take an independent history from a patient with allergic disease, or practise using an epinephrine autoinjector. 90.9% responded that an allergy rotation was not offered to final year students.ConclusionsAllergy undergraduate teaching is suboptimal and heterogeneous in UK medical schools and there is a real need for standardisation as a means to enhance quality of care.
Journal Article
The every woman study™ low- and middle-income countries edition protocol: A multi-country observational study to assess opportunities and challenges to improving survival and quality of life for women with ovarian cancer
2024
BackgroundOvarian cancer is a challenging disease to diagnose and treat effectively with five-year survival rates below 50%. Previous patient experience research in high-income countries highlighted common challenges and opportunities to improve survival and quality of life for women affected by ovarian cancer. However, no comparable data exist for low-and middle-income countries, where 70% of women with the disease live. This study aims to address this evidence gap.MethodsThis is an observational multi-country study set in low- and middle-income countries. We aim to recruit over 2000 women diagnosed with ovarian cancer across multiple hospitals in 24 countries in Asia, Africa and South America. Country sample sizes have been calculated (n = 70-96 participants /country), taking account of varying national five-year disease prevalence rates. Women within five years of their diagnosis, who are in contact with participating hospitals, are invited to take part in the study. A questionnaire has been adapted from a tool previously used in high-income countries. It comprises 57 multiple choice and two open-ended questions designed to collect information on demographics, women's knowledge of ovarian cancer, route to diagnosis, access to treatments, surgery and genetic testing, support needs, the impact of the disease on women and their families, and their priorities for action. The questionnaire has been designed in English, translated into local languages and tested according to local ethics requirements. Questionnaires will be administered by a trained member of the clinical team.ConclusionThis study will inform further research, advocacy, and action in low- and middle-income countries based on tailored approaches to the national, regional and global challenges and opportunities. In addition, participating countries can choose to repeat the study to track progress and the protocol can be adapted for other countries and other diseases.
Journal Article