Outcome measures in palliative care: Using the POS family of measures - Two-day workshop (11th and 12th February 2016)
Clinician training day (11th February) designed to enable outcome measurement in clinical scenarios.
This workshop covered:
- An introduction to outcome measurement and using the POS family of measures
- Embedding outcome measurement research into clincial practice, discussing IPOS and the OACC project
- Practical session on developing POS competencies - Using the POS family of measures to show the effects of your service and integrating into daily practice
- Using the POS family of measures in: different cultures and settings; paediatric populations
- Latest IT developments and showcase of integrated data reporting on clinical systems
Researcher training day (12th February) focussed on the use of POS in research.
This workshop covered:
- Current and future directions of outcome measurement
- Use and validation of the POS family of measures
- Implementing, utilising and collecting data for the POS family of measures
- POS data analysis
- Using POS for the first time in research
- Health economic data in relation to the POS family of measures
Myeloma Conference - Quality of Life in Multiple Myeloma: Recent International Research and Future Developments (31st March 2016)
Dr Debra Howell, University of York; Sarah Richard, Myeloma UK; Prof. Steve Schey, Clinical Lead for Myeloma King's College Hospital and Professor of Plasma Cell Dyscrasias London University; Prof. Rob George & Dr Thomas Osborne, St Christopher’s Hospice; Prof. Irene Higginson, Christina Ramsenthaler & Susanne de Wolf-Linder, Cicely Saunders Institute, King’s College London; as well as John Culley, a Myeloma Patient and Service User.
Topics of discussion will include examining quality of life in patients with myeloma, advances of clinical management of myeloma and research developments including an outcome measure named MyPOS.
This conference was arranged as part of the Dame Cicely Saunders celebration event series to commemorate the ten-year anniversary since her death and celebrate the continuation of her life's work.
Click here for the day programme
Palliative Care in Neurology Conference (4th May 2016)
On 4th May 2016, approx.100 delegates attended the Palliative Care in Neurology conference at the Cicely Saunders Institute, facilitated by the OPTCARE Neuro project team.
The programme included presentations from experts in the fields of palliative care (Dr Rachel Burman, Dr David Oliver, Prof Raymond Voltz) and neurology (Prof Carolyn Young, Prof Ray Chaudhuri), as well as a soap box session on the future priorities for research among people severely affected by neurological conditions, incorporating perspectives of the CEOs of Parkinson’s UK and the MND Association and the Director of Policy and Research of the MS Society. The conclusion of the day was a panel discussion on the Management of complex ethical issues in long-term neurological conditions.
The day was received well by delegates, with 88% of respondents to the evaluation stating that the content of the conference would influence their practice.
Annual Lecture - Unintended consequences of legislation at the end of life (4th May 2016)
Speaker: Professor Ilora Baroness Finlay of Llandaff
About the speaker:
Ilora Finlay is a Professor of Palliative Medicine at Cardiff University; Consultant at Velindre Cancer Centre; and Independent Crossbench member of the House of Lords. The first consultant in Palliative Medicine in Wales in 1987, she developed palliative and hospice care services across Wales and established an internationally renowned palliative care course at Cardiff University. She is National Vice President of Marie Curie Cancer Care and Chair of the National Council for Palliative Care.
Laws are more than just regulatory instruments. They send social messages. I will examine different types of 'assisted dying' legislation and their effects. First, however, I will deal with my own Access to Palliative Care Bill.
The Health and Social Care Act of 2012 resulted in enormous changes to the organisation and lines of accountability in the NHS. These changes appear to have eroded the financial security and any national framework for hospice and specialist palliative care, resulting in wide variation in provision. By contrast, the more centralized nature of NHS Wales has provided some stability to the sector. The variability of provision in England led me to write the Access to Palliative Care Bill, which has completed its passage through the House of Lords.
Licensing 'assisted dying' by law would represent a major change to the criminal law. Before Parliament could contemplate such a step it needs clear evidence that the law as it stands is not fit for purpose and, if that is so, that what would be put in its place would be better. No such evidence has been provided to date and within the last 12 months Parliaments, both north and south of the Scottish border, have rejected proposals for legalisation.
The lecture will explore evidence from around the world of the effects of 'assisted dying' legislation. The recent data reported by Oregon’s Health Division on their Death with Dignity Act shows a 26% rise in the number of deaths from physician assisted suicides in 2015, following a 44% rise in 2014. A similar trend of steeply rising numbers of euthanasia deaths is also seen in the Benelux countries; in The Netherlands in 2014, 1 in 26 of all deaths was the result of euthanasia or assisted suicide and euthanasia is being increasingly extended to patients with mental illness.
Knowledge Exchange Seminars
Thursday 3rd March 2016 (9.00am - 12.30pm)
- To consider recent local research and emerging evidence, and evaluate how this might influence clinical practice
- To inform clinicians of research initiatives and collaboratives currently working to communicate, disseminate, embed and maintain approaches to research and best practice
- To discuss the validity of methodology and practices, both holistic and clinical, used to implement research ideas relating to palliative care
Thursday 6th October 2016 (9.00am - 12.30pm)
Speakers: Clare Ellis-Smith (Cicely Saunders Institute), Dr Kiera Lowther (Dartington Social Research Unit), Prof Julia Riley (The Royal Marsden NHS Foundation Trust), Dr Matt Maddocks (Cicely Saunders Institute), Kimblerley St John (Guy’s and St Thomas’ NHS Foundation Trust)
Chaired by: Dr Fliss Murtagh (Reader in Palliative Care)
- Assessment of people with dementia in residential care settings: Development and evaluation of the Palliative care Outcome Scale for Dementia (Clare Ellis-Smith)
- Nurse-led palliative care for HIV-positive patients taking antiretroviral therapy in Kenya (Dr Keira Lowther)
- Learning from Coordinate My Care; What we know now about impact (Prof Julia Riley)
- Neuromuscular electrical stimulation to improve exercise capacity in patients with severe COPD: A randomised trial (Dr Matt Maddocks)
- Namaste care as a hospital service: A pilot study (Kimberley St John)
Speakers: Dr Caroline Nicolson (Florence Nightingale Faculty of Nursing & Midwifery), Claire Nolan (Royal Brompton and Harefield Trust), Dr Will Farr (Sussex Community NHS Foundation Trust), Dr Marie Joseph (St Raphael’s Hospice), Alice Firth (Cicely Saunders Institute), Dr Fliss Murtagh (Cicely Saunders Institute)
Chaired by: Dr Matt Maddocks (Lecturer in Health Services Research) and Dr Catherine Evans (Senior Clinical Lecturer)
- Joining up palliative care and frailty – lessons from research and practice (Dr Caroline Nicolson)
- Gait speed and prognosis in Idiopathic Pulmonary Fibrosis (Claire Nolan)
- Feasibility Study: Virtual Reality Therapy for Children with Cerebral Palsy (Dr Will Farr)
- Managing respiratory secretions at End of Life in malignancy (Dr Marie Joseph)
- Main problems and concerns reported by palliative care patients (Alice Firth)
Institute Monthly Seminar Series
The Institute hosts a seminar series featuring speakers, presenting on a range of related research topics. The series is free and open to the public. All King’s staff and students are encouraged to attend.
Wednesday 27th January 2016
Wednesday 24th February 2016
Modelling the costs of caring for people with cancer at the end of life
Speaker: Jeff Round, Health Economist, University of Bristol
About the speaker:
Jeff has spent the last 5 years focusing on the economics of end of life care. The research he is presenting is based on work undertaken towards his PhD and was recently published in Palliative Medicine. He has edited a book titled ‘End of life care: An economic perspective’ due for publication by Springer in February 2016.
People with advanced cancer require a range of health, social and informal care during the final phase of life. The cost of providing care to this group as they approach the end of their lives is unknown, but represents a significant cost to health and social care systems, charities, and patients and their families. Jeff will present a study on this, where the direct and indirect costs were estimated for lung, breast, colorectal and prostate cancer patients at the end of life in England and Wales. He used a modelling-based approach to estimate the costs of care, with data taken from the literature and publicly available data sets.
The cost of care for the studied patient group was estimated to be £641 million. But perhaps his most striking finding was the uncertainty in the results. This presentation will focus on the difficulties faced when trying to estimate the cost of care, including the lack of data and how to value the role of informal carers, and how this led to such uncertainty. Jeff will also discuss the implications of the research for service planning and make recommendations for a future research agenda.
Thursday 17th March 2016
Assessment and management of pain in dementia
Speaker: Dr Liz Sampson, Reader in the Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London
About the speaker:
Dr Liz Sampson’s research focusses on palliative and end of life care in dementia (epidemiological and health services research) and liaison psychiatry for older people (epidemiology and outcomes for older people with dementia and delirium in acute hospitals). She trained at Birmingham University, has an MSc (Epidemiology) from the London School of Hygiene and Tropical Medicine and an MD from the Institute of Neurology. Dr Sampson works clinically as lead consultant for older people’s liaison psychiatry at North Middlesex University Hospital.
Identifying and managing pain in people with dementia can be very challenging. Difficulties with communicating the severity and location of pain may be underpinned by the loss of fundamental knowledge of, or the ability to interpret, unpleasant sensations. This can lead to loss of function, behavioural problems and depression and can also have a profound effect on carers. New tools and ways of identifying pain in people with dementia are being developed and Liz and her team are now attempting to broaden the concept from nociceptive pain to one of addressing more “palliative” concepts of comfort and care.
Wednesday 30th March 2016
A mixed-methods research process to develop a complex intervention for weight loss and anorexia in advanced cancer: the Family Approach to Weight and Eating (FAWE)
Speaker: Prof Jane Hopkinson, Professor of Nursing, Cardiff University
About the speaker:
Jane Hopkinson leads the Emotional, Supportive and Palliative Care Research Group at the School of Healthcare Sciences at Cardiff University. She was a nurse working clinically in the fields of rehabilitation, cancer and palliative care prior to becoming a full-time academic researcher in 2001. From 2002-2011, she led the Macmillan Weight and Eating Studies, a series of NIHR portfolio registered studies concerned with improving supportive care of cancer patients with involuntary weight loss and poor appetite. Her current research is about supportive care in cancer and supportive care in dementia with a particular interest in developing and testing complex interventions for patients and their family members.
Jane is also an Independent Member for the Velindre NHS Trust Board, a member of the National Cancer Research Institute (NCRI) Supportive & Palliative Care Clinical Studies Group and a member of the Scientific Board of the Cancer Cachexia Hub, Helsinn Healthcare. She has over 80 peer reviewed publications and frequently speaks at national and international clinical and scientific meetings.
This presentation is about the development and preliminary evaluation of a complex intervention for families affected by weight loss and eating problems (symptoms of cachexia) in people with advanced cancer. It will examine challenges arising in the successful development and preliminary testing of the Family Approach to Weight and Eating (FAWE).
A complex intervention is a multi-component activity that has the purpose of improving clinical and patient experience outcomes. The Medical Research Council has published guidelines for the development of robust complex interventions that can be tested for effectiveness. The FAWE study is one of the few reported examples of how to operationalise the early phases of these guidelines.
Wednesday 27th April 2016
“Then she won’t miss me when I’m gone”: Using an interactionist perspective to understand the experiences and behaviour of children with life limiting conditions and life threatening illnesses and their families
Speaker: Prof Myra Bluebond-Langner, Professor and True Colours Chair in Palliative Care for Children and Young People at University College London, Institute of Child Health
About the speaker:
Myra heads the Louis Dundas Centre for Children’s Palliative Care - an academic and clinical partnership involving the Institute of Child Health and Great Ormond Street Hospital for Children. She is also Board of Governors’ Professor of Anthropology (emerita) and founder and former director of the Rutgers University Center for Children and Childhood Studies. An anthropologist by training, her research over the last 40+ years has focused on children with life limiting conditions and life threatening illness and their families. Myra’s research includes studies of children’s understanding of their illness and awareness of death, impact of illness on parents and siblings, and decision making about care and treatment when cure is not likely.
Working out of an approach in social sciences broadly characterized as an “interactionist perspective”, Myra will look at how that perspective can inform research and practice through a discussion of several studies she has conducted on children with cancer and cystic fibrosis and their families. Myra will focus on seriously ill children’s understandings of illness and death, their parents approaches to care and treatment and the children’s roles in decision making as well as the implications of the findings for development of clinical guidance.
Wednesday 25th May 2016
The personal impact of English end-of-life care policy
Speaker: Dr Erica Borgstrom, Anthropologist & Research Fellow, London School of Hygiene and Tropical Medicine
About the speaker:
Prior to joining London School of Hygiene and Tropical Medicine Erica Borgstrom was part of the Palliative and End of Life Care Group at the University of Cambridge, where she did her PhD. She currently holds the Foundation for the Sociology of Health and Illness Mildred Blaxter Postdoctoral Fellowship for her work in end of life care. Her work uses ethnographic methods and social theory to explore and understand end-of-life care policy and it’s translation into practice, as well as the experiences of those living with chronic and/or terminal illness. She is co-convenor of the Social Aspects of Death, Dying and Bereavement (part of the British Sociological Association) and Membership Secretary for the Association for the Study of Death and Society. Erica regularly tweets under @ericaborgstrom and more information about her work and previous publications can be found at: http://drborgstrom.wix.com/borgstrom
The UK is internationally recognised as one of the best countries in which to receive end of life care, partly because of the role policy has played in the last decade. Yet, this does not mean that dying in the UK is without complications, controversies or debate and the end of life care policy agenda can be seen to be straddling both mainstream and marginal politics. But what does this mean for those who are deemed to be near ‘end of life’? This seminar will describe what it can currently be like to die in England, drawing on ethnographic data of two local cases and the public discourse around end of life care and death. Recounting the last weeks of two people will demonstrate the ways in which policy is shaping the way people die and the personal and inter-relational impacts this is having.
Wednesday 22nd June 2016
Registry-based research and randomized controlled trials (R-RCTs) in Sweden
Speaker: Magnus Ekström, Physician & Clinical Researcher in Respiratory Medicine, Lund University, Sweden
About the speaker:
Magnus Ekström completed his PhD in 2012 which involved cross-linking and analysis of Swedish national registry data in patients with chronic respiratory failure. He is currently a postdoctoral research fellow at Flinders University, Adelaide, South Australia (prof. David Currow). His research focuses on the measurement, epidemiology, and treatment of breathlessness, and on the management in advanced respiratory disease and chronic respiratory failure.
This seminar will be about how to make the most with routinely collected health care data. This includes an overview of past and present projects cross-linking national databases, and of the structure and use of Swedish health care and quality registers for research. Advantages, limitations and potential challenges will be discussed as well as how to take forward high quality evidence in routine care by registry-based randomized controlled trials (R-RCTs).
Wednesday 27th June 2016
What’s the story? Patient and family carer experiences of living with a life limiting diagnosis
Speaker: Dr Marilyn Kendall, Senior Research Fellow with the Primary Palliative Care Research Group, University of Edinburgh
About the speaker:
Having completed a PhD concerned with service users’ experiences of severe mental illness, Marilyn joined the Edinburgh group in 1999 and has since worked on a variety of palliative care studies. She has a particular interest in the use of serial and multi-perspective interviews in health service research, and in narrative research. In 2013 the Primary Palliative Care Research Group was awarded the Principal’s Medal for outstanding service, in recognition of its work in developing palliative care. Marilyn is currently working on a Scottish Government funded study of the needs of people who have a severe stroke, and their families. She also supervises a number of PhD students and teaches qualitative research methods. Abstract:
The Primary Palliative Care Research Group at the University of Edinburgh has carried out many qualitative longitudinal studies looking at the experiences of people in their last years of life. In this talk I will discuss the key themes and issues, looking at studies from across all three of the main trajectories of functional decline at the end of life. The contrasting illness narratives offered by patients and family carers affect and shape their experiences, thoughts, and fears in the last months of life. A detailed understanding of the varied experiences, and views, of people living and dying with different conditions, and their family and professional caregivers, should help policy-makers and clinicians design and deliver more appropriate and person-centred care.
Wednesday 24th August 2016
Work is an important – but neglected – issue in palliative care
Speaker: Dr Gail Eva, Senior Lecturer, Department of Clinical Sciences, Brunel University
About the speaker:
Gail studied occupational therapy at the University of Cape Town, and for the past 25 years has worked in Oxford and London in a variety of clinical, managerial, educational and research roles in cancer and palliative care rehabilitation. Her PhD work at the University of Stirling focussed on patients’ conceptions of disability in the context of life limiting illness, and her post-doctoral work UCL examined vocational rehabilitation in cancer.
As people are referred for palliative care earlier, more are likely to be in employment and may wish to continue to work while able to do so. However, little attention is given to employment issues in palliative care – in research as well as practice and policy – resulting a limited understanding of people’s needs. In this talk I will present qualitative data from two studies which examined work support for people with advanced cancer. Work was a source of competence, normality, legacy and distraction. Continuing to work entailed negotiating workplace adjustments with employers, often with little support. If withdrawing from work, loss of role could have a significant impact on identity; these participants reported a need for advocacy related to financial settlements and also help to identify replacement occupations. I will draw both on participants’ experience and the wider literature on work support in cancer to make some recommendations for research and practice
Wednesday 28th September 2016
IMPARTS and assessment of suicide risk in medical settings
Speaker: Dr Jane Hutton, Consultant Clinical Psychologist in Psychological Medicine, King’s College Hospital
About the speaker:
Jane is employed by South London and Maudsley NHS Trust and, on an honorary basis, by the Institute of Psychology, Psychiatry and Neuroscience. Her clinical, teaching and research work is at the interface of mental and physical healthcare and is informed by cognitive-behavioural and mindfulness-based approaches. She is particularly interested in the psychology of respiratory medicine, training in psychological aspects of care for non-specialists, and the roles of mindfulness in supporting wellbeing for people living with long-term medical conditions, and in helping professionals manage the demands of healthcare work.
Integrating Mental & Physical healthcare: Research, Training & Services (IMPARTS) is an initiative funded by King’s Health Partners to integrate mental and physical healthcare in research, training and clinical services at Guy’s, St Thomas’s and King’s College Hospitals, as well as South London and Maudsley NHS Foundation Trust. The overall goal of IMPARTS is to improve mental healthcare provision within physical healthcare settings across KHP. The IMPARTS package is designed to support clinical teams in providing timely, tailored, evidence-based care. This talk will provide an overview of IMPARTS, with a particular focus on how we support clinical services in assessing and acting on risk of suicide.
Wednesday 19th October 2016
Enhancing Palliative and End-of-Life Care for LBGT People
Speaker: Dr Richard Harding, Reader in Palliative Care at the Cicely Saunders Institute, King’s College London
About the speaker:
Dr Richard Harding is a Reader in Palliative Care at the Cicely Saunders Institute, and Director of Global Programmes and Partnerships. He has a background in social science and social work. His research programme aims to reduce inequalities in palliative and end-of-life care. This has led to studies investigating experiences of sexual minorities in the UK and also to collaboration on LGBT people and sex workers’ through parallel study in Africa through his Global Health research networks.
Palliative and end-of-life care services are striving to reach a goal of “palliative care for all”. This includes a focus on reducing social exclusion. LGBT people may have greater need yet poorer access to such services. Building on a systematic review, we have conducted an original UK-wide study, conducting in-depth interviews with LGBT people across the UK (and their carers) who are facing advanced illness. We are also collaborating on a similar study in Zimbabwe. The data have also led us to investigate bereavement experiences, as our interviews revealed this to be a time of potential disenfranchisement.
Wednesday 23rd November 2016
The Access to Opioid Medication in Europe (ATOME) project: benefits and challenges in working in an international context
Speaker: Professor Sheila Payne, Health Psychologist at Lancaster University
About the speaker:
Sheila's research expertise is in palliative and end of life care, a multidisciplinary field. Her work is recognised and used to influence policy and practice to improve palliative care throughout the world. Her research focuses on: the needs of older people and family caregivers, who have cancer and other chronic diseases, and evaluation of organisational and service configurations. There has been a steep change in the growth and reputation of the International Observatory on End of Life Care (IOELC) which is now widely recognised, not only international mapping, but also for research and education that has built upon this foundation.
The ATOME project, funded by the European Commission 7th Framework Programme for 5 years, sought to assist 12 countries in central and Eastern Europe to develop national policies and strategic plans to improve access to opioid medication. The project team worked closely with the World Health Organisation to revise guidelines on the use of controlled medicines to encourage a balanced approach. Each country established a national team bringing together palliative care practitioners, harm reduction agencies, pharmacists, policy makers and lawyers to identify barriers and create solutions to improve opioid access. This talk reflects on the benefits and challenges of undertaking this large project.
Ageing and Migrant Mortality
Speaker: Professor Seeromanie Harding, Professor of Social Epidemiology & Nutrition, King’s College London
About the speaker:
Professor Seeromanie Harding is a social epidemiologist and principal investigator of the DASH (Determinants of Adolescent, now young Adults, Social well-being and Health) study. Her expertise is in life course approaches to social and ethnic inequalities in health, international comparative studies, and developing community-based interventions that target at risk populations.
Little research has been carried out on issues of resilience, frailty and ethnicity. Professor Seeromanie Harding will be exploring these issues, along with a review of the recent cause specific migrant mortality data (2011-2014).