Publications by authors named "Mila Petrova"

26 Publications

  • Page 1 of 1

Knowledge, Practice, and Attitudes of Physicians in Low- and Middle-Income Countries on Fertility and Pregnancy-Related Issues in Young Women With Breast Cancer.

JCO Glob Oncol 2022 Jan;8:e2100153

Department of Medical Oncology, U.O. Clinica di Oncologia Medica, IRCCS Ospedale Policlinico San Martino, Genova, Italy.

Purpose: Fertility and pregnancy-related issues are highly relevant for young (≤ 40 years) patients with breast cancer. Limited evidence exists on knowledge, practice, and attitudes of physicians from low- and middle-income countries (LMICs) regarding these issues.

Methods: A 19-item questionnaire adapted from an international survey exploring issues about fertility preservation and pregnancy after breast cancer was sent by e-mail between November 2019 and January 2020 to physicians from LMICs involved in breast cancer care. Descriptive analyses were performed.

Results: A total of 288 physicians from Asia, Africa, America, and Europe completed the survey. Median age was 38 years. Responders were mainly medical oncologists (44.4%) working in an academic setting (46.9%). Among responders, 40.2% and 53.8% reported having never consulted the available international guidelines on fertility preservation and pregnancy after breast cancer, respectively. 25.0%, 19.1%, and 24.3% of responders answered to be not at all knowledgeable about embryo, oocyte, or ovarian tissue cryopreservation, respectively; 29.2%, 23.6%, and 31.3% declared that embryo, oocyte, and ovarian tissue cryopreservation were not available in their countries, respectively. 57.6% of responders disagreed or were neutral on the statement that controlled ovarian stimulation can be considered safe in patients with breast cancer. 49.7% and 58.6% of responders agreed or were neutral on the statement that pregnancy in breast cancer survivors may increase the risk of recurrence overall or only in those with hormone receptor-positive disease, respectively.

Conclusion: This survey showed suboptimal knowledge, practice, and attitudes of physicians from LMICs on fertility preservation and pregnancy after treatment completion in young women with breast cancer. Increasing awareness and education on these aspects are needed to improve adherence to available guidelines and to promote patients' oncofertility counseling.
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http://dx.doi.org/10.1200/GO.21.00153DOI Listing
January 2022

Timely community palliative and end-of-life care: a realist synthesis.

BMJ Support Palliat Care 2021 Dec 9. Epub 2021 Dec 9.

Palliative & End of Life Care in Cambridge (PELiCAM) Research Group, Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.

Background: Community-based and home-based palliative and end-of-life care (PEoLC) services, often underpinned by primary care provision, are becoming increasingly popular. One of the key challenges associated with them is their timely initiation. The latter requires an accurate enough prediction of how close to death a patient is.

Methods: Using 'realist synthesis' tools, this review sought to develop explanations of how primary care and community PEoLC programmes generate their outcomes, with the explanations presented as context-mechanism-outcome configurations. Medline, Embase, CINAHL, PsycINFO, Web of Science, ASSIA, Sociological Abstracts and SCIE Social Care Online were originally searched. A multistage process of focusing the review was employed, with timely identification of the EoL stage and timely initiation of associated services representing the final review focus. Synthesised sources included 21 full-text documents and 324 coded abstracts, with 253 'core contents' abstracts generating >800 codes.

Results: Numerous PEoLC policies and programmes are embedded in a framework of Preparation and Planning for Death and Dying, with identification of the dying stage setting in motion key systems and services. This is challenged by: (1) accumulated evidence demonstrating low accuracy of prognostic judgements; (2) many individuals' orientation towards Living and Hope; (3) expanding grey zones between palliative and curative care; (4) the complexity of referral decisions; (5) the loss of pertinent information in hierarchical relationships and (6) the ambiguous value of having 'more time'.

Conclusion: Prioritising temporal criteria in initiating PEoLC services is not sufficiently supported by current evidence and can have significant unintended consequences.

Prospero Registration Number: CRD42018097218.
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http://dx.doi.org/10.1136/bmjspcare-2021-003066DOI Listing
December 2021

Gemcitabine/Nab-Paclitaxel versus FOLFIRINOX in Locally Advanced Pancreatic Cancer: A European Multicenter Study.

Cancers (Basel) 2021 Jun 4;13(11). Epub 2021 Jun 4.

Department of Hepatogastroenterology, University Hospital of Saint-Etienne, 42000 Saint-Etienne, France.

Background: Gemcitabine/nab-paclitaxel (GN) and FOLFIRINOX (FFX) are two standard first-line therapies for metastatic pancreatic cancer (PC) but have rarely been compared, especially in patients with locally advanced PC (LAPC).

Methods: This is a retrospective European multicenter study including patients with LAPC treated with either GN or FFX as the first-line therapy between 2010 and 2019. Coprimary objectives were progression-free survival (PFS) and overall survival (OS), both estimated using the Kaplan-Meier method.

Results: A total of 147 patients (GN: = 60; FFX: = 87) were included. Tumor resection rates were similar between the two groups (16.7% vs. 16.1%; = 1), with similar R0 resection rates (88.9%). Median PFS rates were not statistically different: 9 months (95% CI: 8-13.5) vs. 12.1 months (95% CI: 10.1-14.6; = 0.8), respectively. Median OS rates were 15.7 months (95% CI: 12.6-20.2) and 16.7 months (95% CI: 14.8-20.4; = 0.7), respectively. Abdominal pain at the baseline (HR = 2.03, = 0.03), tumors located in the tail of the pancreas (HR = 4.35, = 0.01), CA19-9 > 200 UI/L (HR = 2.03, = 0.004) and tumor resection (HR = 0.37, = 0.007) were independent prognostic factors for PFS, similarly to OS. CA19-9 ≤ 200 UI/L (OR = 2.6, = 0.047) was predictive of the tumor response. Consolidation chemoradiotherapy, more often used in the FFX group (11.7% vs. 50.6%; < 0.001), was not predictive.

Conclusion: This retrospective study did not show any difference between GN and FFX as the first-line treatment in patients with LAPC.
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http://dx.doi.org/10.3390/cancers13112797DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8200096PMC
June 2021

Comparison of the health-related quality of life of end stage kidney disease patients on hemodialysis and non-hemodialysis management in Uganda.

BMC Palliat Care 2021 Apr 1;20(1):52. Epub 2021 Apr 1.

Cambridge Palliative and End of Life Care Research Group, Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.

Background: Health-related quality of life is recognized as a key outcome in chronic disease management, including kidney disease. With no national healthcare coverage for hemodialysis, Ugandan patients struggle to pay for their care, driving families and communities into poverty. Studies in developed countries show that patients on hemodialysis may prioritize quality of life over survival time, but there is a dearth of information on this in developing countries. We therefore measured the quality of life (QOL) and associated factors in end stage renal disease (ESRD) patients in a major tertiary care hospital in Uganda.

Methods: Baseline QOL measurement in a longitudinal cohort study was undertaken using the Kidney Disease Quality of Life Short Form Ver 1.3. Patients were recruited from the adult nephrology unit if aged > 18 years with an estimated glomerular filtration rate ≤ 15mls/min/1,73m. Clinical, demographic and micro-financial information was collected to determine factors associated with QOL scores.

Results: Three hundred sixty-four patients (364) were recruited, of whom 124 were on hemodialysis (HD) and 240 on non-hemodialysis (non-HD) management. Overall, 94.3% of participants scored less than 50 (maximum 100). Mean QOL scores were low across all three principal domains: physical health (HD: 33.14, non-HD: 34.23), mental health (HD: 38.01, non-HD: 38.02), and kidney disease (HD: 35.16, non-HD: 34.00). No statistically significant difference was found between the overall quality of life scores of the two management groups. Breadwinner status (p < 0.001), source of income (p0.026) and hemodialysis management type (p0.032) were the only factors significantly associated with QOL scores, and this was observed in the physical health and kidney disease principal domains only. No factors were significantly associated with scores for the mental health principal domain and/or overall QOL score.

Conclusion: The quality of life of Ugandan patients with ESRD has been found to be lower across all three domains of the Kidney Disease Quality of Life Short Form than reported anywhere in the world, with no difference observed between the non-HD and HD management groups. Interventions targeting all domains of QOL are needed among patients with ESRD in Uganda and, potentially, in other resource limited settings.
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http://dx.doi.org/10.1186/s12904-021-00743-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8017791PMC
April 2021

Palliative and end-of-life care for military veterans: the forgotten few?

Br J Gen Pract 2021 28;71(703):86-89. Epub 2021 Jan 28.

FiMT Research Centre, Anglia Ruskin University, Chelmsford Campus, Chelmsford.

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http://dx.doi.org/10.3399/bjgp21X714869DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7846368PMC
June 2021

Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study.

BMC Nephrol 2020 12 7;21(1):531. Epub 2020 Dec 7.

Cambridge Palliative and End of Life Care Research Group, Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge; Cambridge Institute of Public Health, Forvie Site, Cambridge, CB2 0SR, UK.

Background: The prevalence of chronic kidney disease is on the rise globally and in sub-Saharan Africa. Due to its "silent" nature, many patients often present with advanced disease. At this point options for care are often limited to renal replacement therapies such as hemodialysis and kidney transplantation. In resource limited settings, these options are associated with catastrophic expenditures and increased household poverty levels. Early palliative care interventions, if shown to ensure comparable quality of life (QoL), can significantly mitigate this by focusing care on comfort, symptom control and QoL rather than primarily on prolonging survival.

Methods: A mixed methods longitudinal study, recruiting patients with End Stage Renal Disease (ESRD) on hemodialysis or conservative management and following them up over 12 months. The study aims are to: 1) measure and compare the health-related quality of life (HRQoL) scores of patients with ESRD receiving hemodialysis with those receiving conservative management, 2) measure and compare the palliative care needs and outcomes of patients in the two groups, 3) explore the impact of treatment modality and demographic, socio-economic and financial factors on QoL and palliative care needs and outcomes, 4) review patient survival over 12 months and 5) explore the patients' lived experiences. The Kidney Disease Quality Of Life Short Form version 1.3 (KDQOL-SF) will be used to measure HRQoL; the African Palliative Care Association Palliative care Outcome Score (APCA POS) and the Palliative care Outcome Score for renal symptoms (POS-S Renal) will be used to assess palliative care needs and outcomes; and semi-structured in-depth interviews to explore the patients' experiences of living with ESRD. Data collection will be carried out at 0, 3, 6, 9 and 12 months.

Discussion: To the best of our knowledge, no similar study has been conducted in sub-Saharan Africa. This will be an important step towards raising awareness of patients' need and preferences and the strengths and limitations of available health care services for ESRD in resource limited settings.
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http://dx.doi.org/10.1186/s12882-020-02197-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7720495PMC
December 2020

Lost in reviews: Looking for the involvement of stakeholders, patients, public and other non-researcher contributors in realist reviews.

Res Synth Methods 2021 Mar 9;12(2):239-247. Epub 2020 Oct 9.

Bodleian Health Care Libraries, University of Oxford, Oxford, UK.

The involvement of non-researcher contributors (eg, stakeholders, patients and the public, decision and policy makers, experts, lay contributors) has taken a variety of forms within evidence syntheses. Realist reviews are a form of evidence synthesis that involves non-researcher contributors yet this practice has received little attention. In particular, the role of patient and public involvement (PPI) has not been clearly documented. This review of reviews describes the ways in which contributor involvement, including PPI, is documented within healthcare realist reviews published over the last five years. A total of 448 papers published between 2014 and 2019 were screened, yielding 71 full-text papers included in this review. Statements about contributor involvement were synthesized across each review using framework analysis. Three themes are described in this article including nomenclature, nature of involvement, and reporting impact. Papers indicate that contributor involvement in realist reviews refers to stakeholders, experts, or advisory groups (ie, professionals, clinicians, or academics). Patients and the public are occasionally subsumed into these groups and in doing so, the nature and impact of their involvement become challenging to identify and at times, is lost completely. Our review findings indicate a need for the realist review community to develop guidance to support researchers in their future collaboration with contributors, including patients and the public.
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http://dx.doi.org/10.1002/jrsm.1459DOI Listing
March 2021

Dying individuals and suffering populations: applying a population-level bioethics lens to palliative care in humanitarian contexts: before, during and after the COVID-19 pandemic.

J Med Ethics 2020 08 19;46(8):514-525. Epub 2020 Jun 19.

Centre for Humanitarian Leadership, Deakin University, Burwood, Victoria, Australia.

Background: Humanitarian crises and emergencies, events often marked by high mortality, have until recently excluded palliative care-a specialty focusing on supporting people with serious or terminal illness or those nearing death. In the COVID-19 pandemic, palliative care has received unprecedented levels of societal attention. Unfortunately, this has not been enough to prevent patients dying alone, relatives not being able to say goodbye and palliative care being used instead of intensive care due to resource limitations. Yet global guidance was available. In 2018, the WHO released a guide on Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises'-the first guidance on the topic by an international body.

Aims: This paper argues that while a landmark document, the WHO guide took a narrowly clinical bioethics perspective and missed crucial moral dilemmas. We argue for adding a population-level bioethics lens, which draws forth complex moral dilemmas arising from the fact that groups having differential innate and acquired resources in the context of social and historical determinants of health. We discuss dilemmas concerning: limitations of material and human resources; patient prioritisation; euthanasia; and legacy inequalities, discrimination and power imbalances.

Implications: In parts of the world where opportunity for preparation still exists, and as countries emerge from COVID-19, planners must consider care for the dying. Immediate steps to support better resolutions to ethical dilemmas of the provision of palliative care in humanitarian and emergency contexts will require honest debate; concerted research effort; and international, national and local ethical guidance.
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http://dx.doi.org/10.1136/medethics-2019-105943DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7418598PMC
August 2020

Illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh: A cross-sectional study.

PLoS Med 2020 03 3;17(3):e1003011. Epub 2020 Mar 3.

Fasiuddin Khan Research Foundation, Dhaka, Bangladesh.

Background: Despite recognition that palliative care is an essential component of any humanitarian response, serious illness-related suffering continues to be pervasive in these settings. There is very limited evidence about the need for palliative care and symptom relief to guide the implementation of programs to alleviate the burden of serious illness-related suffering in these settings. A basic package of essential medications and supplies can provide pain relief and palliative care; however, the practical availability of these items has not been assessed. This study aimed to describe the illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh.

Methods And Findings: Between November 20 and 24, 2017, we conducted a cross-sectional study of individuals with serious health problems (n = 156, 53% male) and caregivers (n = 155, 69% female) living in Rohingya refugee camps in Bangladesh, using convenience sampling to recruit participants at the community level (i.e., going house to house to identify eligible individuals). The serious health problems, recent healthcare experiences, need for medications and medical supplies, and basic needs of participants were explored through interviews with trained Rohingya community members, using an interview guide that had been piloted with Rohingya individuals to ensure it reflected the specificities of their refugee experience and culture. The most common diagnoses were significant physical disabilities (n = 100, 64.1%), treatment-resistant tuberculosis (TB) (n = 32, 20.5%), cancer (n = 15, 9.6%), and HIV infection (n = 3, 1.9%). Many individuals with serious health problems were experiencing significant pain (62%, n = 96), and pain treatments were largely ineffective (70%, n = 58). The average age was 44.8 years (range 2-100 years) for those with serious health problems and 34.9 years (range 8-75 years) for caregivers. Caregivers reported providing an average of 13.8 hours of care per day. Sleep difficulties (87.1%, n = 108), lack of appetite (58.1%, n = 72), and lack of pleasure in life (53.2%, n = 66) were the most commonly reported problems related to the caregiving role. The main limitations of this study were the use of convenience sampling and closed-ended interview questioning.

Conclusions: In this study we found that many individuals with serious health problems experienced significant physical, emotional, and social suffering due to a lack of access to pain and symptom relief and other essential components of palliative care. Humanitarian responses should develop and incorporate palliative care and symptom relief strategies that address the needs of all people with serious illness-related suffering and their caregivers.
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http://dx.doi.org/10.1371/journal.pmed.1003011DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7053708PMC
March 2020

Oncologist Burnout Syndrome in Eastern Europe: Results of the Multinational Survey.

JCO Oncol Pract 2020 04 29;16(4):e366-e376. Epub 2020 Jan 29.

Department of Gastroenterology and Hepatology, Clinical Hospital "Sveti Duh," Zagreb, Croatia.

Purpose: Burnout is defined as a three-dimensional syndrome-emotional exhaustion (EE), depersonalization (DP), and reduced personal accomplishment (PA)-caused by chronic occupational stress. The aim of the current study was to investigate the prevalence of burnout among oncologists in Eastern Europe and to identify the contributing factors.

Methods: The study was conducted as an online survey between October 2017 and March 2018. Oncologists (including medical, radiation, clinical, and surgical oncologists) from 19 countries were invited to participate. The survey consisted of 30 questions, including the standardized burnout instrument, Maslach Burnout Inventory, and eight demographic questions. Burnout risk was scored according to the scoring manual for health care workers.

Results: The study included 637 oncologists. Overall, 28% were at low or intermediate risk and 72% were at high risk for burnout. Forty-four percent of participants were at high risk for EE, 28.7% for DP, and 47.3% for PA. EE risk was associated with female sex. DP risk was highest among clinical and radiation oncologists, whereas PA risk was positively correlated with years of service, percentage of cancer deaths, and availability of the number of oncologists. In multivariate logistic regression analysis, burnout was significantly associated with standardized cancer mortality and fewer years of practice.

Conclusion: Burnout among oncologists in Eastern Europe is high, and younger oncologists are the most vulnerable group. Preventive measures should be taken to address this issue, which negatively affects optimal care delivery and poses a threat to oncologists' health and well-being.
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http://dx.doi.org/10.1200/JOP.19.00470DOI Listing
April 2020

Neutrophil to lymphocyte ratio as a potential predictive marker for treatment with pembrolizumab as a second line treatment in patients with non-small cell lung cancer.

Biosci Trends 2020 Mar 4;14(1):48-55. Epub 2020 Feb 4.

Clinic of Medical Oncology, MHAT "Nadezhda", Sofia, Bulgaria.

The aim of this multicentric retrospective study is to evaluate the predictive and prognostic performance of neutrophil to lymphocyte ratio (NLR), platelet-lymphocyte ratio (PLR) and their dynamics in patients with non-small cell lung cancer (NSCLC) treated with pembrolizumab as a second line. Patients with metastatic NSCLC (n = 119), whose tumors expressed programmed death-ligand 1 (PD-L1) ≥ 1%, were retrospectively analyzed between Apr 2017 and Apr 2019. All patients received platinum-containing chemotherapy as a first line treatment. Pre-treatment NLR was calculated by dividing the number of neutrophils by the number of lymphocytes in peripheral blood before the first pembrolizumab infusion. Progression free survival (PFS) and overall survival (OS) was compared by Kaplan-Meier method and Cox Proportional Hazard model. Patients with NLR > 5 before immunotherapy showed significantly shorter mean PFS of 6.86 months (95% CI: 5.81-7.90) as compared to those with NLR ≤ 5 of 18.82 months (95% CI: 15.87-21.78) (long rank test p < 0.001). Furthermore in the multivariate analysis, only NLR > 5 was an independent predictive factor for shorter PFS (HR: 4.47, 95% CI: 2.20-9.07, p < 0.001). In multivariate analysis, presence of bone metastases (HR: 2.08, 95% CI: 1.10-4.94, p = 0.030), NLR > 5 before chemotherapy (HR: 8.09, 95% CI: 2.35-27.81, p = 0.001) and high PLR before chemotherapy (HR: 2.81, 95% CI: 1.13-6.97, p = 0.025) were found to be independent negative prognostic factors for poor OS. Our data suggests that NLR ≤ 5 is a potential predictive marker, which may identify patients appropriate for immunotherapy as a second line treatment.
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http://dx.doi.org/10.5582/bst.2019.01279DOI Listing
March 2020

Response to Correspondence from Kolstoe and colleagues concerning our paper entitled, Research approvals iceberg: How a 'low-key' study in England needed 89 professionals to approve it and how we can do better.

BMC Med Ethics 2019 12 24;20(1):101. Epub 2019 Dec 24.

Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Institute of Public Health, Forvie Site, Robinson Way, Cambridge, CB2 0SR, UK.

In their letter to the Editor in this issue, Kolstoe and Carpenter challenge a core aspect of our recently published case study of research approvals [BMC Medical Ethics 20:7] by arguing that we conflate research ethics with governance and funding processes. Amongst the key concerns of the authors are: 1) that our paper exemplifies a typical conflation of concepts such as governance, integrity and ethics, with significant consequences for claims around the responsibility and accountability of the organisations involved; 2) that, as a consequence of this conflation, we misrepresent the ethics review process, including in fundamental aspects such as the ethics approval-opinion distinction; 3) that it is difficult to see scope for greater integration of processes such as applying for funding, research approvals, Patient and Public Involvement, etc., as suggested by us. Here we present an alternative point of view towards the concerns raised.
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http://dx.doi.org/10.1186/s12910-019-0433-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6929303PMC
December 2019

Research approvals iceberg: how a 'low-key' study in England needed 89 professionals to approve it and how we can do better.

BMC Med Ethics 2019 01 25;20(1). Epub 2019 Jan 25.

Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Institute of Public Health, Forvie Site, Robinson Way, Cambridge, CB2 0SR, UK.

Background: The red tape and delays around research ethics and governance approvals frequently frustrate researchers yet, as the lesser of two evils, are largely accepted as unavoidable. Here we quantify aspects of the research ethics and governance approvals for one interview- and questionnaire-based study conducted in England which used the National Health Service (NHS) procedures and the electronic Integrated Research Application System (IRAS). We demonstrate the enormous impact of existing approvals processes on costs of studies, including opportunity costs to focus on the substantive research, and suggest directions for radical system change.

Main Text: We have recorded 491 exchanges with 89 individuals involved in research ethics and governance approvals, generating 193 pages of email text excluding attachments. These are conservative estimates (e.g. only records of the research associate were used). The exchanges were conducted outside IRAS, expected to be the platform where all necessary documents are provided and questions addressed. Importantly, the figures exclude the actual work of preparing the ethics documentation (such as the ethics application, information sheets and consent forms). We propose six areas of work to enable system change: 1. Support the development of a broad range of customised research ethics and governance templates to complement generic, typically clinical trials orientated, ones; 2. Develop more sophisticated and flexible frameworks for study classification; 3. Link with associated processes for assessment, feedback, monitoring and reporting, such as ones involving funders and patient and public involvement groups; 4. Invest in a new generation IT infrastructure; 5. Enhance system capacity through increasing online reviewer participation and training; and 6. Encourage researchers to quantify the approvals processes for their studies.

Conclusion: Ethics and governance approvals are burdensome for historical reasons and not because of the nature of the task. There are many opportunities to improve their efficiency and analytic depth in an age of innovation, increased connectivity and distributed working. If we continue to work under current systems, we are perpetuating, paradoxically, an unethical system of research approvals by virtue of its wastefulness and impoverished ethical debate.
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http://dx.doi.org/10.1186/s12910-018-0339-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6346542PMC
January 2019

Something's awry (again) in the debate on patient data sharing.

Br J Gen Pract 2018 03;68(668):133

University Senior Lecturer in General Practice and Palliative Care; GP and Honorary Consultant Physician in Palliative Care, University of Cambridge, Cambridge.

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http://dx.doi.org/10.3399/bjgp18X695081DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5819963PMC
March 2018

Between "the best way to deliver patient care" and "chaos and low clinical value": General Practitioners' and Practice Managers' views on data sharing.

Int J Med Inform 2017 08 17;104:74-83. Epub 2017 May 17.

Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.

Objective: In the UK, General Practitioners and Practice Managers are key to enabling health information exchange (typically referred to as 'data sharing'). This study aimed to survey GPs and PMs for familiarity, engagement with and perceptions of patient data sharing.

Methods: Cross-sectional survey. All 107 general practices in England's second largest Clinical Commissioning Group, Cambridgeshire & Peterborough CCG. Descriptive statistics; hierarchical logistic regression; thematic analysis.

Results: 405 (64%) responses were received - from 338 (62%) GPs and 67 (71%) PMs. Familiarity and engagement were highest for local frail elderly and end of life care projects (>76% had used). The greatest difference in use concerned the now suspended national care.data initiative: PMs had odds of reporting use 75 times higher than GP partners (95% CI 27-211). Patient confusion was the most pronounced challenge and improved coordination the most pronounced expected benefit. Frequency of discussions with patients varied with IT competence (OR 4.2 for most competent users relative to least, 95% CI 1.7-10.7) and clinical system (OR 0.3, 95% CI 0.1-0.5). Patient reservations were reported more frequently by respondents who rated their IT competence as highest (OR 3.3, 95% CI 1.5-7.6), perceived more data sharing challenges (OR for a 1-point increase in challenges perception score 3.4, 95% CI 2.1-5.6) and by PMs (relative to GP partners, OR 18.0, 95% CI 7.9-41.3).

Conclusions: Familiarity with and use of data sharing projects was high among GPs and PMs. Both their individual and organisational characteristics were associated with the reported frequency of discussions and patients' responses. Improved awareness of the impact of provider characteristics and attitudes on patients' decisions about data sharing may enhance the equity and autonomy of those decisions.
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http://dx.doi.org/10.1016/j.ijmedinf.2017.05.009DOI Listing
August 2017

Palliative care in humanitarian crises: always something to offer.

Lancet 2017 04;389(10078):1498-1499

University Hospital Bonn, Bonn, Germany; Center of Palliative Care, Malteser Hospital Seliger Gerhard Bonn/Rhein-Sieg, Bonn, Germany.

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http://dx.doi.org/10.1016/S0140-6736(17)30978-9DOI Listing
April 2017

Career opportunities and benefits for young oncologists in the European Society for Medical Oncology (ESMO).

ESMO Open 2016 7;1(6):e000107. Epub 2016 Dec 7.

Gustave Roussy Cancer Campus Grand Paris, Villejuif, France.

The European Society for Medical Oncology (ESMO) is one of the leading societies of oncology professionals in the world. Approximately 30% of the 13 000 ESMO members are below the age of 40 and thus meet the society's definition of young oncologists (YOs). ESMO has identified the training and development of YOs as a priority and has therefore established a comprehensive career development programme. This includes a leadership development programme to help identify and develop the future leaders in oncology. Well-trained and highly motivated future generations of multidisciplinary oncologists are essential to ensure the optimal evolution of the field of oncology with the ultimate goal of providing the best possible care to patients with cancer. ESMO's career development portfolio is managed and continuously optimised by several dedicated committees composed of ESMO officers and is directly supervised by the ESMO Executive Board and the ESMO President. It offers unique resources for YOs at all stages of training and includes a broad variety of fellowship opportunities, educational courses, scientific meetings, publications and resources. In this article, we provide an overview of the activities and career development opportunities provided by ESMO to the next generation of oncologists.
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http://dx.doi.org/10.1136/esmoopen-2016-000107DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5174792PMC
December 2016

Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from.

BMJ Support Palliat Care 2018 Dec 16;8(4):447-455. Epub 2016 Sep 16.

Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge-Institute of Public Health, Cambridge, UK.

Background: Electronic Palliative Care Coordination Systems (EPaCCS) are England's pre-eminent initiative in enabling advance care planning and improved communication and coordination at the end of life. EPaCCS have been under development for 8 years after being proposed, as Locality Registers, in the 2008 End of Life Care Strategy for England. EPaCCS are electronic registers or tools and processes for sharing data which aim to enable access to information about dying patients. Striking outcomes have been reported around EPaCCS, such as 77.8% of 'Coordinate My Care' patients dying in their preferred place. EPaCCS have, however, been extremely challenging to develop and implement, with many projects remaining continuously 'under development' or folding. They also continue to be suboptimally integrated with other data sharing initiatives. Rigorous research is non-existent.

Discussion Points: We discuss the current EPaCCS landscape and way forward. We summarise key facts concerning the availability, uptake, outcomes and costs of EPaCCS. We outline 5 key challenges (scope of projects, unrealistic expectations set by existing guidance, the discrepancy between IT realities in healthcare and our broader lives, information governance and 'death register' associations) and 6 key drivers (robust concept, striking outcomes, national support and strong clinical leadership, clinician commitment, education and funding).

Conclusions: The priorities for advancing EPaCCS we propose include linking to other work streams and reframing the concept, potentially making it less 'end of life', overview of current EPaCCS and lessons learnt, continuing work on information standards, rethinking of national funding and new levels of individual and community involvement.
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http://dx.doi.org/10.1136/bmjspcare-2015-001059DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287568PMC
December 2018

Search terms and a validated brief search filter to retrieve publications on health-related values in Medline: a word frequency analysis study.

J Am Med Inform Assoc 2012 May-Jun;19(3):479-88. Epub 2011 Aug 16.

Egenis-ESRC Centre for Genomics in Society, University of Exeter, Exeter, UK.

Objective: Healthcare debates and policy developments are increasingly concerned with a broad range of values-related areas. These include not only ethical, moral, religious, and other types of values 'proper', but also beliefs, preferences, experiences, choices, satisfaction, quality of life, etc. Research on such issues may be difficult to retrieve. This study used word frequency analysis to generate a broad pool of search terms and a brief filter to facilitate relevant searches in bibliographic databases.

Methods: Word frequency analysis for 'values terms' was performed on citations on diabetes, obesity, dementia, and schizophrenia (Medline; 2004-2006; 4440 citations; 1,110,291 words). Concordance® and SPSS 14.0 were used. Text words and MeSH terms of high frequency and precision were compiled into a search filter. It was validated on datasets of citations on dentistry and food hypersensitivity.

Results: 144 unique text words and 124 unique MeSH terms of moderate and high frequency (≥ 20) and very high precision (≥ 90%) were identified. Of these, 19 text words and seven MeSH terms were compiled into a 'brief values filter'. In the derivation dataset, it had a sensitivity of 76.8% and precision of 86.8%. In the validation datasets, its sensitivity and precision were, respectively, 70.1% and 63.6% (food hypersensitivity) and 47.1% and 82.6% (dentistry).

Conclusions: This study provided a varied pool of search terms and a simple and highly effective tool for retrieving publications on health-related values. Further work is required to facilitate access to such research and enhance its chances of being translated into practice, policy, and service improvements.
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http://dx.doi.org/10.1136/amiajnl-2011-000243DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3341778PMC
August 2012

Healthcare assistants in general practice: a qualitative study of their experiences.

Prim Health Care Res Dev 2011 Jan;12(1):29-41

Health Sciences Research Institute, Warwick Medical School, University of Warwick, Coventry, UK.

Aim: To explore the experiences of healthcare assistants (HCAs) working in general practice (GP).

Background: HCAs increasingly play an important role in UK GP teams. The role is relatively new and little is known about how HCAs feel about their work in GP, and the challenges that they face.

Methods: Semi-structured interviews were undertaken with 14 HCAs from two Primary Care Trusts in the West Midlands, United Kingdom. Transcriptions were analysed using the framework analysis approach.

Findings: Overall, HCAs reported that they enjoyed their work, and particularly appreciated the patient contact and positive feedback gained. Attitudes to the role were affected by previous position, experience, and length of time working within the practice. The HCAs felt accepted and supported by GP team members and valued the support they were receiving. Key sources of frustration included the poor salary, the lack of initial clarity with regard to role definition, and the constraints of their scope of practice. Role boundaries between HCAs and practice nurses were experienced as well defined, and no perceptions of role ambiguity were reported. HCAs considered their work to be of relatively low status, with its main purpose being to ease the practice nurse's workload. Although many had the desire to train as nurses, few saw it as a realistic possibility.

Conclusions: Although HCAs appear to be satisfied overall, the elements of dissatisfaction relate to status, pay, and career progression, which may limit the retention of individuals in this role. Practices should consider the importance of recognising and valuing the work of HCAs and of providing protected time and resources for mentorship and career progression.
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http://dx.doi.org/10.1017/S1463423610000204DOI Listing
January 2011

Benefits and challenges of employing health care assistants in general practice: a qualitative study of GPs' and practice nurses' perspectives.

Fam Pract 2010 Jun 17;27(3):303-11. Epub 2010 Mar 17.

Egenis (ESRC Centre for Genomics in Society), University of Exeter, Exeter EX4 4PJ, UK.

Background: Estimates suggest that over half of general practices in England currently employ a health care assistant (HCA) but there is little evidence of their impact, effectiveness and acceptability to patients and primary care team members.

Objectives: To explore the role of HCAs in general practice and the benefits and challenges associated with their employment.

Methods: Semi-structured interviews were performed with 6 GPs and 13 practice nurses as part of a larger qualitative study that also included HCAs. Interviewees were from 16 general practices from two Primary Care Trusts in the West Midlands. Transcripts were analyzed using thematic and framework analysis.

Results: HCAs were seen as a valuable addition to the primary care team. They were reported to accelerate, rather than extend services, allow more appropriate use of nurses' skills and enable cost containment. Their training and supervision were felt as time intensive, demanding of time and commitment. Patient safety was raised as a concern, although no specific experience of it being compromised was reported. Nurses recognized the usefulness of HCAs, helped to make the role work, but were often anxious about the impact on their own roles and professional identity. Patients were perceived as being generally neutral or positive.

Conclusion: Cost-effectiveness, patient safety, quality of care, potentially contested role boundaries and patient attitudes are among the issues that policy-makers, commissioners and those responsible for workforce development and training need to consider in relation to HCAs in general practice. There is also a need for more in-depth evaluation of this role.
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http://dx.doi.org/10.1093/fampra/cmq011DOI Listing
June 2010

Sorafenib in metastatic MTC - a case report and minireview of the literature.

Int Med Case Rep J 2010 27;3:55-8. Epub 2010 May 27.

Hematology and Oncology Department, Medical Military Academy, Sofia, Bulgaria.

Medullary thyroid cancer (MTC) is a rare and only surgically treatable disease with early development of metastases and bad prognosis. Due to the lack of efficient systemic treatment, new strategies and approaches are needed to better the patients' outcome. One of the most promising treatment options is the use of tyrosine multikinase inhibitors, which appear to have some effect on the disease progression with tolerable toxicity. Most of them affect many key pathways in the cancer genesis and have proven their effect in different malignancies. We report a case of a young patient with metastatic MTC treated successfully for two months with sorafenib.
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http://dx.doi.org/10.2147/imcrj.s9384DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3658222PMC
June 2013

Fulminate anaerobic bacteremia after chemotherapy for metastatic breast cancer despite the prophylactic use of GCSF.

Int Med Case Rep J 2010 13;3:35-7. Epub 2010 Apr 13.

Clinic of Hematology and Oncology, Department of Medical Oncology, Medical Military Academy, Sofia, Bulgaria.

Chemotherapy-induced neutropenia often occurs in our routine work and presents an obstacle for adequate (dose and continuance) treatment, which may affect patients' outcome. Granulocyte colony-stimulating factors (GCSFs) effectively prevent myelosuppression and thus improve the standard treatment. Through their application cases of chemotherapy-induced neutropenia have been reduced. Still these factors cannot remove entirely the danger of encountering neutropenia, which can cause dangerous complications. We present a case of a fulminate anaerobic infection with unknown origin in a patient with metastatic breast cancer after standard treatment with chemotherapy supported by GCSFs.
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http://dx.doi.org/10.2147/imcrj.s9383DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3658216PMC
June 2013

The role and impact of facilitators in primary care: findings from the implementation of the Gold Standards Framework for palliative care.

Fam Pract 2010 Feb 29;27(1):38-47. Epub 2009 Oct 29.

Health Sciences Research Institute, Warwick Medical School, University of Warwick, Coventry, UK.

Background: Facilitation is the process of providing support to individuals or groups to achieve beneficial change. It is intrinsic to the Gold Standards Framework (GSF) for palliative care, a programme introduced widely in UK general practices.

Objectives: To explore how GSF facilitators fulfil their role and the impact of the facilitators' backgrounds and approach on practices' uptake of the programme.

Setting: Primary care organizations and general practices in England and Northern Ireland.

Methods: Self-completed questionnaire and semi-structured interviews with facilitators. Practice audit questionnaire. Descriptive statistics. Thematic analysis. Linear and random effects models.

Results: A total of 102 (59.6%) facilitators completed a questionnaire; interviews were performed with nine facilitators. A large variability was found in the facilitators' professional backgrounds, role setup and activities. The impact of several facilitation characteristics on practice change was modelled for 63 (36.8%) facilitators and 266 practices (20.4%). No evidence was found of an association between practice change and facilitators' specialist knowledge of palliative care, mean facilitation time per practice, mean number of visits, facilitator budget and incentives offered to practices. Facilitators with a GP background were associated with higher levels of GSF change than those with a clinical nurse specialist background (P = 0.0078 with Bonferroni correction, significance threshold for corrected P = 0.008). The interviews indicated that the differential implementation of the framework might have been strongly affected by internal and external practice-related factors that were not readily amenable to facilitation.

Conclusion: This study goes some way towards untangling aspects of facilitation associated with successful implementation of the GSF. Further prospective research and evaluation is needed to identify ways of improving its sustainability, effect on patient outcomes and cost-effectiveness.
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http://dx.doi.org/10.1093/fampra/cmp066DOI Listing
February 2010

Exploring preferences for place of death with terminally ill patients: qualitative study of experiences of general practitioners and community nurses in England.

BMJ 2009 Jul 15;339:b2391. Epub 2009 Jul 15.

Health Sciences Research Institute, Warwick Medical School, University of Warwick, Coventry CV4 7AL.

Objective: To explore the experiences and perceptions of general practitioners and community nurses in discussing preferences for place of death with terminally ill patients.

Design: Qualitative study using semistructured interviews and thematic analysis.

Participants: 17 general practitioners and 19 nurses (16 district nurses, three clinical nurse specialists).

Setting: 15 general practices participating in the Gold Standards Framework for palliative care from three areas in central England with differing socio-geography. Practices were selected on the basis of size and level of adoption of the standards framework.

Results: All interviewees bar one had experience of discussing preferred place of death with terminally ill patients. They reported that preferences for place of death frequently changed over time and were often ill defined or poorly formed in patients' minds. Preferences were often described as being co-created in discussion with the patient or, conversely, inferred by the health professional without direct questioning or receiving a definitive answer from the patient. This inherent uncertainty challenged the practicability, usefulness, and value of recording a definitive preference. The extent to which the assessment of enabling such preferences can be used as a proxy for the effectiveness of palliative care delivery is also limited by this uncertainty. Generally, interviewees did not find discussing preferred place of death an easy area of practice, unless the patient broached the subject or led the discussions.

Conclusions: Further research is needed to enable development of appropriate training and support for primary care professionals. Better understanding of the importance of place of death to patients and their carers is also needed.
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http://dx.doi.org/10.1136/bmj.b2391DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2714676PMC
July 2009

Values-based practice in primary care: easing the tensions between individual values, ethical principles and best evidence.

Br J Gen Pract 2006 Sep;56(530):703-9

Centre for Primary Health Care Studies, Health Sciences Research Institute, Warwick Medical School, Coventry.

Background: The provision of health care is inseparable from universal values such as caring, helping and compassion. Consideration for individual values, particularly those of the patient, has also been increasing. However, such consideration is difficult within the context of modern health care, where complex and conflicting values are often in play. This is particularly so when a patient's values seem to be at odds with evidence-based practice or widely shared ethical principles, or when a health professional's personal values may compromise the care provided.

Suggested New Framework: Values-based practice, a framework developed originally in the domain of mental health, maintains that values are pervasive and powerful parameters influencing decisions about health, clinical practice and research, and that their impact is often underestimated. Although it shares starting points with other approaches to values, it suggests that our current approaches lead us to ignore some important manifestations of values at both the general level, as relevant in legal, policy and research contexts, as well as at the individual level, as relevant in clinical practice. Drawing on ideas from philosophy, values-based practice significantly extends the range of phenomena that may be regarded as value-laden. It suggests that one of the reasons for overlooking values is that they are presumed to be shared when not apparently conflicting. Values-based practice is an approach to supporting clinical decision-making, which provides practical skills and tools for eliciting individual values and negotiating these with respect to best available evidence.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1876638PMC
September 2006
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