Recently Completed PhDs
Anna-Maria completed the Baillie Marie Curie studentship, which was funded for 4 years. She commenced in September 2016. She was supervised by Paddy Stone (Primary), Bella Vivat (Secondary) and Stephen McKeever (Tertiary; based at London South Bank University).
Study outline: Evidence increasingly suggests that structured monitoring of sedative use may have benefits in terms of better titration of medication and ensuring patient comfort. However, standard care for patients receiving sedative drugs at the end-of-life is currently based on informal monitoring. This doctorate project aims to examine the usefulness, feasibility and acceptability of using structured techniques for the monitoring of sedative use for patients who are coming to the end of their lives.
Primary supervisor: Professor Paddy Stone; secondary supervisors: Dr Adam Harris and Professor Priscilla Harries.
Doctors need to identify when palliative care patients are imminently dying so they can adjust their goals of care and treatment accordingly. The systematic review of the literature, completed as part of this thesis, showed that these decisions are very inaccurate. The aim of this thesis was to determine the judgement policies of expert prognosticators (i.e. those clinicians with a proven ability to identify patients in the last 72 hours of life). This information is needed to help the development of training programmes for less expert clinicians. In order to understand decision-making judgements, it was first necessary to identify an "expert" group of clinicians. Previous studies suggested that expertise is not defined by years of experience or seniority. Therefore to identify an expert group with proven prognostic abilities, palliative care doctors (n = 99) completed a prognostic "test". The test was developed by compiling case histories from the direct observation of 50 seriously ill patients in a hospice and an acute hospital. In order to complete the test, doctors were asked to review 20 case summaries and to provide a percentage likelihood that each patient would die within the next three days. The top 20% of doctors who performed most accurately on this test were deemed to be "expert prognosticators" and were invited to participate in the next phase of the research. The expert group (n = 19) were asked to complete a further prognostic task so that the decision-making policy of each individual (and the expert group as a whole) could be determined using Judgement Analysis.
Emma completed her PhD in 2016, under the supervision of Myra Bluebond-Langner and Louise Jones. Her thesis, "Principles and Practices for Involving Teenagers in Decision-Making about their Care and Treatment: A prospective participant-observation study to inform policy and practice", aimed to understand the complex process of decision-making that takes place among HCP, families and teenagers, for decisions regarding the teenager's care and treatment. Her research employed ethnographic methods, participant-observation, informal conversation and open-ended semi-structured interviews. The interactionist perspective provided the overarching theoretical framework. Seven teenagers, 15 family members and 60 HCP were recruited. Data were collected from observations of consultations (147), HCP meetings (104) and informal discussions/interviews (253) with teenagers (86), parents (67), family members (6) and HCP (94). Observations were audio-recorded and transcribed verbatim. Findings: Grounded theory analysis of interviews/informal discussions identified several principles (acting on the care and treatment preferences of the teenager, doing the right thing as determined by clinical consensus, following the HCP lead, information exchange) regarding the involvement of teenagers. Observations highlighted how these principles were enacted in practice, the immutable factors (disease course, decision, treatment window, legal responsibilities) and communication practices (presentation of options, bargaining, information seeking, delegation) that determined when, how and why principles took precedence. Emma's findings suggest teenagers with life-threatening-diagnoses want a different kind of involvement in decision-making than much policy advocates. Teenagers and parents express no desire for independent decision-making, nor do they encourage following the teenagers care and treatment preferences for decisions of consequence. Involvement is not static and consistent across the trajectory, nor is it dependent on chronological age. HCP and policymakers must reconsider the value of advocating one type of involvement focusing on providing 'honest' information, seeking teenagers' preferences for care and treatment and following their lead.
A prospective longitudinal study analysing prescription and administration of pain medication and psychotropics in care home residents with dementia. This research will describe how medication is used and investigate the factors associated with increased use, at an individual and care home level. This PhD commenced in October 2014 and is in collaboration with the UCL MARQUE Project (led by Professor Gill Livingston)
I am a PhD candidate in the Marie Curie Palliative Care Research Department at University College London, working on practices of care and medical decision-making among patients, families and practitioners. My dissertation is an ethnography of care and treatment for people living with a brain tumour. Brain tumour communities are undergoing radical change with the recent introduction of molecular biomarkers to diagnosis. These markers hold much promise for those affected given their affordance of more precise diagnostic, prognostic and predictive information and in invigorating a research agenda based around tailored treatments. Yet their introduction remains contested within clinical communities, sometimes complicating diagnosis and decision-making and giving rise to new dilemmas for patients and their families. By studying this moment ethnographically, I explore how patients, families and a range of practitioners in the UK navigate complex treatment decisions amid an unpredictable disease and shifting terrain of care. I draw attention to how communities manage uncertainty, how patients and families understand and weigh information, how they approach standard care and experimental treatments at different points of their disease, and how the particular features of brain tumours intervene in people's lives. I am funded by a UCL IMPACT studentship and a Yale UCL collaborative exchange programme scholarship.
Research interests: brain tumours; chronic disease; oncology; end of life and palliative care; medical knowledge(s); diagnosis; medical decision-making; patient and public engagement; ethnography; science and technology studies; UK
The PhD examines the benefits of analyzing clinical trials data with multiple outcomes using multivariate modelling compared to standard methods. The research will also explore the interpretation and implications of the multivariate modelling on sample size calculations.Victoria is supervised by Prof. Rumana Omar and Dr Gareth Ambler, who are based in the Department of Statistical Science, UCL. The PhD commenced in 2013 and is funded by UCL.
Relatives of patients near the end of life value accurate information about prognosis and care which communicated in a clear, sensitive manner. This PhD aims to understand communication between expert healthcare professionals in a hospice and relatives of patients who are approaching the end of life. A conversation analysis approach will be used to identify the structure and function of these conversations and provide recommendations for less experienced doctors.
The primary supervisor for the PhD is Dr Steven Bloch, secondary supervisor is Prof Paddy Stone and tertiary supervisor is Dr Joe Low. The PhD is funded by the Marie Curie Chair's Grant.
The purpose of this PhD is to develop a tool to measure quality of life in people with a rare and chronic disease of the bile ducts called primary sclerosing cholangitis (PSC). As generic quality of life tools may not be sensitive to change in this population, a validated tool is crucial to ensure therapeutic interventions will have a positive impact on those receiving them. Elena will be supervised by Dr Douglas Thorburn (The Royal Free Hospital) as well as Dr Bella Vivat and Prof Paddy Stone who are based at the Marie Curie Palliative Care Research Department (MCPCRD) at University College London. Funding is provided by the British Liver Trust.
Emotional disclosure, particularly in the form of expressive writing, is a simple and low cost therapeutic intervention that has been shown to produce physical and psychological health benefits in clinical populations. Whilst some studies have assessed the use of expressive writing in a palliative care setting, the interventions tested were not tailored for the specific needs of patients with progressive advanced chronic diseases (PACD). Related to the use of emotional disclosure as a therapy are the 'high profile' bloggers, vloggers and online forum participants, who use online platforms to document their experience of a PACD as a form of coping with their diagnosis. With this background in mind, this PhD project aims to develop and investigate various methods of emotional disclosure as a therapeutic intervention to enhance psychological and physical well-being of patients and family carers specifically within the palliative care setting. The project is planned to be split into a number of key stages:
Stage 1: Evidence synthesis phase and survey of psychological support services to explore the appropriateness and feasibility of emotional disclosure from the perspectives of people with PACD and their family carers, and inform intervention development.
Stage 2: Developing the intervention based on the findings of phase 1, and through a series of workshops with patients, family carers, and health and social care professionals to tailor optimum timings, formats, settings and delivery of the intervention.
Stage 3: Evaluating the intervention via an exploratory study testing the feasibility and acceptability of emotional disclosure for people with PACD and family carers, examining elements such as numbers of eligible patients and carers, recruitment rate, loss to follow-up and adherence. This will also inform acceptability of outcome measures, which will likely capture aspects of well-being, pain, sleep, anxiety and mood.
Stage 4: Qualitative enquiry via a series of semi-structured interviews to explore patients' and family carers' experiences of completing at emotional disclosure intervention, which will then be used to modify and improve the intervention further.
This mixed-methods project commenced in October 2018 and is co-funded by the ESRC UBEL-DTP and Marie Curie.
Daisy is supervised by Prof. Paddy Stone (primary supervisor), Dr Bridget Candy (secondary supervisor) and Dr Nuriye Kupeli (secondary supervisor).
Making decisions for patients with advanced dementia at the end of life care is usually difficult and distressful for family carers, especially in acute hospital setting. This PhD project aims at exploring the experiences of patients, family carers and healthcare professionals in such situation with both qualitative and quantitative approach. Required skills and knowledge to improve decision making are examined and used to develop a co-designed decision aid. The decision aid will also be tested for its clinical implication.
Kanthee is a psychiatrist from Thailand and PhD student at Marie Curie Palliative Care Research Department (MCPCRD), UCL. His primary supervisor is Dr. Liz Sampson and secondary supervisor is Dr. Nathan Davies. His PhD commenced in October 2018 and is funded by the Faculty of Medicine, Prince of Songkla University, Thailand. His area of interests are geriatric psychiatry and gerontology, especially issues involving in dementia, end of life care and frailty.
Background and Significance
Parents of children with a HRBT face a number of decisions throughout their care and treatment. A review of the literature reveals that QoL is a factor which frequently features in discussions to reach those decisions. However, it's meaning to CYP and parents is not well understood (Hinds 2010). Also worthy of note are recent studies on decision making indicating that most parents with a child with a life-limiting condition (LLC) prefer decision making to be a joint process between themselves and the healthcare professionals (HCPs) (Day et al, 2014; Oostendorp et al, 2015). Preliminary analysis of our collected data suggests there are differences in what quality of life means and indeed what is important to children, parents and HCPs respectively. How then are decisions to be made jointly between parents and the HCPs if a term used frequently in discussions of the child's care is interpreted differently?
In addition to differences in conceptualisation of Qol and its place in decision making, previous studies are in the main retrospective, conducted at single points in the illness with samples that are not reflective of the current population seen at major tertiary CYP oncology centres in the UK. This project builds on the project 'Understanding decision making for children with high risk brain tumours: A prospective, longitudinal study of parents, children and clinicians to provide guidance for clinical consultations'[1] which has just completed data collection and has generated a unique dataset of verbatim transcripts. Over the course of 20 months (February 2014-October 2015) two ethnographers, embedded in the clinical teams who provide care and treatment for these children, followed 24 children, 14 children from diagnosis through to death. They observed and audio recorded 3001 unique encounters, including 351 consultations and 609 informal encounters with clinicians.
Aims
1. To provide a robust description and understanding of what 'quality of life' (QoL) means to: (a) Children and young people (CYP) with a high risk brain tumour (HRBT); (b) their parents and (c) and healthcare professionals (HCP) involved in their care and treatment over the course of the illness.
2. To examine the role that their views of what constitutes QoL play in the decisions that children, parents and clinicians make about care and treatment over the course of the illness.
3. To develop recommendations and guidance for policy and practice: (a) for discussions of options and goals of care and treatment over the course of the illness and (b) to facilitate joint decision making
This will be accomplished through analysis of verbatim transcripts of consultations, informal conversations and interviews from the prospective, longitudinal study (mentioned above) of decision making for children and young people with a high risk brain tumour, their parents and healthcare professionals. We employ an open approach to conceptualisation of QoL looking at (but not limited to) perceptions of burden of treatment, individual's priorities, preferences, wishes, goals and values over the course of the illness.
Primary Supervisor: Myra Bluebond-Langner, Louis Dundas Centre, Institute of Child Health, UCL,
Secondary Supervisor: Darren Hargrave, Neuro-oncology & Experimental Therapeutics, Great Ormond Street Hospital for Children and Reader in Paediatric Neuro-oncology, Institute of Child Health
[1] Bluebond-Langner M [PI], Hargrave D (co-applicant), Kelly P (co-applicant), Gibson F (co-applicant), Bayliss J (co-applicant) Henderson E (Research Team), Pountney J (Research Team); Beecham, E (Research Team) ; Langner, R (Research Team). Informed decision-making for children with high-risk brain tumours: A prospective study of the exchange and processing of information among parents, children and clinicians providing guidance for clinical consultations (2013-18). [Funding received 13 July 2013]; Data Collection complete.
Taiwan was one of the earliest Asian countries to provide nationwide single-payer palliative care for dementia and has offered these services since 2009. However, the rate of palliative care use for patients with dementia was only 1.64% and that the services remained limited to an end-of-life stage (median survival time after service: 36 days) in our previous study. People with dementia in their last year of life in Taiwan underwent aggressive interventions significantly more frequently than did their counterparts in Western countries and often died in the hospital. Taiwanese national health care system is necessary to organize a care need-orientated, continuous and holistic healthcare framework in the community for helping the people with dementia to live well and die peacefully at home and care homes.
Home healthcare services have been launched since the beginning of National Health Insurance in 1995 and a transforming trial for integrating original home healthcare and palliative home care has been commenced in recent years. The current PhD project aims to test whether home healthcare facilitates better outcome and palliative care referral or less acute hospital utilization or not. The pattern of transition, medical utilization of acute hospital care, drug prescription, specific procedures or life-sustaining treatments, palliative care referral, and place of death for the patients with dementia receiving home health care between the timepoints of their diagnosis with dementia and death would be analyzed by using the nationwide population-based secondary database in Taiwan. The international comparison between Taiwan and data in the UK and other European countries will be done if it is feasible.
Ping-Jen is principally supervised by Dr Liz Sampson in Marie Curie Palliative Care Research Department (MCPCRD), UCL. The secondary supervisor is Professor Irene Petersen, a professor of Epidemiology and Health Informatics in Department of Primary Care and Population Health (PCPH), UCL, and tertiary supervisor is Dr Katherine Sleeman in Cicely Saunders Institute (CSI), King's College London. His PhD commenced in early 2019 and is funded by the Ministry of Education, Taiwan government and Kaohsiung Medical University Hospital.
Ping-Jen is a consultant geriatrician, palliative medicine specialist and assistant professor from Kaohsiung Medical University Hospital, Taiwan. He has been a guest researcher in MCPCRD, UCL in 2013, and in Stroke Prevention Research Unit/ Department of Clinical Geratology, John Radcliffe Hospital, University of Oxford in 2010. His interests in research and clinical practice include integrated care and palliative care for patients with dementia or stroke, medical decision making for patients with impaired mental capacity, and education in clinical ethics.
Selected publications:
Chen PJ, Liang FW, Ho CH, Chen SY*, Chen YC, Chen YH, Chen YC. Association between palliative care and life-sustaining treatments for patients with dementia: A nationwide 5-year cohort study. Palliative Medicine. 2018 Mar;32(3):622-630. doi: 10.1177/0269216317751334. Chen YH, Ho CH, Huang CC, Hsu YW, Chen YC, Chen PJ* (corresponding author), Chen GT, Wang JJ. Comparison of healthcare utilization and life-sustaining interventions between elderly patients with dementia and those with cancer near the end of life: A nationwide, population-based study in Taiwan. Geriatrics & Gerontology International. 2017 Jun 16. doi: 10.1111/ggi.13084
More and more people are living at a palliative stage of a terminal condition. At this time people often experience changes in their physical functioning and face a range of symptoms which increase physical, psychological, social and spiritual distress. Complementary Therapies (CT) are offered alongside the core treatment to help reduce these issues. CTs have become increasingly popular and are frequently offered as part of a holistic care approach in UK hospices and cancer support centres. Despite this popularity however there is limited evidence on the effectiveness of CT due to poor quality data and issues with trial design. Focusing on aromatherapy, massage and reflexology, a programme of mixed methods research will be conducted which aims to:
Understand the disparity between the outcomes used in trials of CT in palliative care populations and the range of patient reported benefits. Begin to develop with patients, therapists and family carers an outcome measure that minimises any mismatch between what patients’ seek and what is measured in clinical trials.
Lucy is supervised by Dr Bridget Candy, Dr Nuriye Kupeli and Professor Paddy Stone who are based within the Division if Psychiatry at UCL. As a collaborative project, the research is partially funded by the ESRC and Marie Curie.