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SKYLIN E H IGH

Social care is a new area of work that sits within the Community research theme. This includes the Care Homes work stream which focuses on high quality palliative care for residents.

Collaboration with the Wales School for Social Care Research, Public Health England, NHS England and the End of Life Care Board for Wales has attracted funding to engage the palliative care and care home workforce in studies, advance debate and influence decision-making.

For more information, please contact Alisha Newman via newmana3@cardiff.ac.uk

Newsletter Marie Curie Palliative Care Research Centre

Issue 1 | 2018

Welcome to the relaunch of the Marie Curie Palliative Care Research Centre (MCPCRC) newsletter. The team has now been enriched with a number of new staff currently conducting several research studies in our three themes of Patient and Carer Experience, Rehabilitation, and Thrombosis.

We are pleased to lead the palliative care work package of the Wales Cancer Research Centre (WCRC). We are also providing teaching support to undergraduate and postgraduate students from medicine, nursing and a range of allied health professionals.

As ever, our public contributors have worked with us consistently to develop and improve our research. In future, we will be featuring some case studies of their work with us.

In this issue ...

An online survey was conducted in February-May 2018 to find out about People?s at t i t ude t owards deat h and

dying in Wales. It was widely participated by 2210 adults living across Wales.

Read the key results here.

For more information, please contact Dr Ishrat

Islam via islami@cardiff.ac.uk

Not e f rom t he Edit or

We are celebrating the appointment of Professor Annmarie Nelson to a Personal Chair within the School of Medicine,

Cardiff University. Annmarie is now the Mar ie Cur ie Professor of Supportive and Palliative Care.

"I am delighted to be awarded a personal chair in recognition of my work with Cardiff University, Marie Curie and the Wales Cancer Research Centre and plan to continue working directly with patients and families to keep our research grounded in patient priorities and needs".

News f rom t he Cent re

This year 's winner of the BMA Oncology Book of t he Year is "Problem Solving in Patient Centred and Integrated Cancer Care". Prof A Nelson, Dr J Fitzgibbon and Ms K Cleary were commissioned to write a chapter in the book on patient and public involvement.

We are pleased to announce that our Intercalated student, Adeel Khan has recently finished his Intercalated project which was supported by MCPCRC staff. He has been awarded a 1st for his systematic review on 'The unmet health and social care needs of older care givers: A systematic review'.

For more information, please contact Alisha Newman via newmana3@cardiff.ac.uk

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Page 1:

Note from the Editor

News from the Centre

Page 2:

Current projects updates

Page 3:

Current projects updates

Page 4:

Completed Projects

Recent Publications

Page 5:

Engagements and Dissemination

Staff and Student news

Marie Curie Palliat ive Care Research Centre | Newsletter | Issue 1 | 2018

Marie Curie Team, Cardiff at the MCPCRC Conference.

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CURRENT PROJECTS UPDATES

The need for evidence-based medicine is a key concern within contemporary health and social care. However a significant obstacle is the lack of time and skill sets to locate and read the relevant literature. In addition, the expectation to assess its quality and deal with conflicting information can be challenging and requires specific expertise.

In order to support the specific informational needs of clinical professionals and other decision makers working in palliative care in Wales we have developed the Palliative Care Evidence Review Service (PaCERS) funded by the Wales Cancer Research Centre.

PaCERS carries out its reviews on topics defined by services and clinicians as of immediate relevance to their practice. So its intention is to save time and resource for clinical teams and provide information in a useful format that they can implement at pace.

Further details together with a web-based repository of all reviews produced through PaCERS is available to clinicians and other palliative care decision makers at

http://palliativecare.walescancerresearchcentre.com/palliative-care-evidence-review-service/

For more information, please contact Ms Mala Mann at mannmk@cardiff.ac.uk

Palliat ive Care Evidence Review Service - PaCERS

The single most distressing symptom for more than 70% of patients with advanced oesophageal cancer is difficulty in swallowing (dysphagia). This has significant implications for food intake, physical activity and social functioning. For those with advanced disease, one of the most effective treatments to restore swallowing is the placement of a self expanding metal stent (SEMS).

However, stent efficacy can deteriorate within 8-12 weeks for a significant proportion of patients, resulting in further hospital admissions and interventions at a time when patients are frail, vulnerable and wishing to avoid hospital settings.

ROCS is a pragmatic, patient focused trial examining whether low dose/ short course radiotherapy will allow stents to work well for longer. The primary outcome is patient reported. It will compare patient perception of dysphagia at 12 weeks between the stent/radiotherapy and stent only arms.

Important secondary outcomes will examine symptoms, bleeding rates and patient health and social care resource use. An embedded qualitative study will give greater understanding of the experience of patients, and their carers, at this stage of their illness.

The study is co-led by Anthony Byrne within MCPCRC and is being run by the Cancer Division of the Centre for Trials Research at Cardiff University. It is recruiting from multiple sites across the UK and is funded by the NIHR HTA funding programme. Recruitment has now reached target, with follow up due to be completed by November 2018 and results

should be available mid 2019.

For more information, please contact Prof Anthony Byrne at anthony.byrne2@wales.nhs.uk

Radiotherapy after Oesophageal Cancer stent ing Study - ROCS

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Marie Curie Palliat ive Care Research Centre | Newsletter | Issue 1 | 2018

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CURRENT PROJECTS UPDATES

This study aimed to improve the care offered to men and their partners/ family following pelvic radiotherapy for prostate cancer. Radiotherapy can cause bowel problems and lead to severe difficulties for cancer survivors, such as limiting travel, work or socialising. These symptoms can appear at any time following radiotherapy, in some cases many years after being discharged from hospital follow up.

This study focused on the early identification of effects that are known to cause long term or even permanent changes to prostate cancer survivors? wellbeing. This study focused on improving the care for patients with bowel problems by introducing a new service in three NHS centres in the UK.

Patients assessed to have bowel problems, were referred to a clinical team for targeted tests to offer appropriate treatment. The effects of the new service were measured in terms of acceptability to staff and patients, quality of life, symptom control and cost.

Early results have found that the new service has provided support and helped men to relieve and improve their long-standing side effects of bowel radiotherapy. The team are working on the final reports which will be available in 2019.

For more information, please contact Prof Annmarie Nelson at nelsona9@cardiff.ac.uk or Prof John Staffurth at staffurthjn@cardiff.ac.uk

Evaluat ing and Addressing t he Gast roint est inal Lat e Ef fect s of radical t reat m ent for Prost at e Cancer - EAGLE

Professor Anthony Byrne co-hosted a Brain Tumour Workshop with Dr Florian Siebzehnrubl on 19th March 2018, co-funded by the Wales Cancer Research Centre and the Marie Curie Palliative Care Research Centre.

The workshop highlighted the range of brain tumour research being undertaken in Cardiff from discovery, through translational to clinical oncology and palliative care.

The meeting brought together researchers from the Positron Emission Tomography Imaging Centre (PETIC), European Cancer Stem Cell Research Institute (ECSCRI), Pharmacy (PHRMY), Cardiff University Brain Research Imaging Centre (CUBRIC), MCPCRC, WCRC, The Brain Tumour Charity and Velindre NHS Trust. Further seminars are planned to promote collaborative working and develop research proposals.

The Brain Multi-Disciplinary Research Group has now been formed, led by Dr James Powell. The inaugural meeting was held on 24th October 2018 in Cardiff.

If you are interested in being involved in supportive care research which would improve patient and carer experience for those with brain cancers, then please contact Prof Anthony Byrne at anthony.byrne2@wales.nhs.uk.

Brain Cancer Workshop

A Consensus Day was hosted by the Marie Curie Palliative Care Research Centre, which focused on the results of the Bereavement project DELPHI survey.

The aim of this project is to develop a core outcome set that is specific to bereavement support following advanced or chronic illness, and is applicable to both research and clinical practice.

Marie Curie Hospices supported the recruitment of service users and service delivery staff to a DELPHI survey.

Click the t it le below to read the poster abstract:

Consensus and consistency: Development of a core outcome set for evaluating bereavement support in palliative care.

For more information, please contact Dr Emily Harrop atharrope@cardiff.ac.uk

Bereavem ent Project : Consensus Day

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Marie Curie Palliat ive Care Research Centre | Newsletter | Issue 1 | 2018

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COMPLETED PROJECTS

Care Hom es

Care Homes play a vital role in the delivery of care towards the end of life, yet litt le is known about specialist palliative care (SPC) support in this setting. SPC services working directly with care homes in the community in England and Wales told us about the support they offer to care home staff and residents and described service successes and challenges through an online survey.

See the results here: http://palliativecare.walescancerresearchcentre.com/social-care-research/

Rapid Review

The PaCERS team have completed 6 rapid reviews which are all available on our website at :

http://palliativecare.walescancerresearchcentre.com/palliative-care-evidence-review-service/

1. What are best practice service models in rural areas for the delivery of end of life and palliative care

2. Does advance care planning alter management decisions made by healthcare professionals?

3. What processes decrease the risk of opioid toxicity following interventional procedures for uncontrolled pain in

palliative care or cancer patients?

4. What outpatient models have proven efficacy for assessment and management of pelvic radiotherapy late

effects?

5. What is the impact and effectiveness of the 7 Day CNS service on palliative care patients and their families?

6. What are the models and outcomes of Public and Patient Involvement (PPI) in cancer and palliative care

research?

PACT

Development of an intervention to support lung cancer Patients and their clinicians when considering systemic Anti-Cancer Therapy ? PACT

The PACT study was to understand how treatment decisions are made for non small cell lung cancer (NSCLC) patients and to map the decisions pathway. Link to the protocol paper

https://bmjopen.bmj.com/content/7/7/e015277.

We are currently in the process of developing the PACT 2 study.

RECENT PUBLICATIONS

Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients?, carers? and health professionals? experiences and further research questions (2018) https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-018-0314-4

Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study (2018) https:// trialsjournal.biomedcentral.com/articles/10.1186/s13063-018-2803-4

What Impact Does Venous Thromboembolism and Bleeding Have on Cancer Patients? Quality of Life? (2018) https://doi.org/10.1016/j.jval.2017.09.015

Patients with established cancer cachexia lack the motivation and self-efficacy to undertake regular structured exercise (2017) https://doi.org/10.1002/pon.4512

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Marie Curie Palliat ive Care Research Centre | Newsletter | Issue 1 | 2018

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ENGAGEMENT & DISSEMINATION

WELCOME TO NEW STAFF/ STUDENT

Dr Stephanie Sivell presented a poster on supplementary qualitative analysis of the JLA PeolcPSP at the MASCC/ISOO Annual Meeting in Vienna, June 2018.

Professor Simon Noble attended the APM Supportive and Palliative Care Conference in Bournemouth, March 2018 and held a Masterclass in "New oral anti-coagulants and palliative care".

Professor Noble was the Chair of the organising committee and gave the key note address.

The MCPCRC Team set up a workshop at the Population Health Conference in Cardiff, June 2018.

Professor Annmarie Nelson presenting the ''Living with and Beyond Cancer '' session at the conference.

- STAFF

- Elin Baddeley - Research Assist ant

Elin joined the MCPCRC team in February 2018 and currently her main job role involves data analysis of the EAGLE project. In addition to that she is also supporting an evaluation project undertaken by the Marie Curie Hospice, Cardiff and the Vale.

She has also undertaken research into GDPR requirements for the Centre, to help ensure that all research now abides by the new Data Protection Act 2018.

- Cynt hia Ochieng - Research Associat e

Cynthia joined the Marie Curie team in August 2018 and is working on a research portfolio related to end-of-life and palliative care.

She supports clinical research activity and data collection as well as developing individual clinical studies in areas of unmet need, as defined by End of Life Care Board strategy, in collaboration with the Wales Cancer Research Centre, Cardiff University, Welsh and UK palliative care research collaborators.

Cynthia also identifies opportunities for clinical research capacity building in palliative care across disciplines and promotes translation of research outcomes into clinical practice.

- STUDENTS

- Francesca Mazzaschi - PhD st udent

Working to develop a screening tool for late effects of treatment for brain cancer

- Luke Murphy - Int ercalat ed st udent

Conducting a systematic review on patient experiences of participating in phase 1 trials.

Edit or : Professor Annmarie Nelson

Team : Mrs Ankita Rai, Dr Ishrat Islam

and Dr Amanda Woodward

Tel: 029 2068 7175

Tw it t er : @MCPCRCCardiff

Em ail: mariecuriecentre@cardiff.ac.uk

MASCC/ ISOO, June 2018 APM Suppor t ive and Pall iat ive Care Conference, March 2018

Populat ion Healt h Conference, June 2018

Mala Mann presented a poster on Public and Patient Involvement at the Cochrane Colloquium in Edinburgh, September 2018.

Cochrane Colloquium , Sept em ber 2018

For more informat ion, please contact the newslet ter team

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Marie Curie Palliat ive Care Research Centre | Newsletter | Issue 1 | 2018