
Professor Annmarie Nelson
Marie Curie Professor of Supportive and Palliative Care; Scientific Director, Marie Curie Palliative Care Research Centre; Academic Lead for Public Involvement and Engagement, School of Medicine.
- nelsona9@cardiff.ac.uk
- +44 (0)29 2068 7473
- 8th floor, Neuadd Meirionnydd, University Hospital of Wales, Heath Park, Cardiff, CF14 4YS
Overview
Experience
I joined Cardiff University via the Wales Cancer Trials Unit where I worked from 2007-2010. Initially my role was a secondment from the Marie Curie Hospice in Penarth, where I had been working for the previous 17 years. In 2010, my clinical colleagues and I were awarded funding to develop a new research centre, the Marie Curie Palliative Care Research Centre.
The centre has three specified research themes each led by an experienced academic or clinical researcher: Patient and carer experience, Rehabilitation, and VTE and thrombosis with additional projects in all areas of palliative and supportive care, cancer and non- cancer.
My predominant and crosscutting research interest is patient and carer experience of services, interventions, and research. I have worked extensively in palliative care, clinical trials, and with cancer research teams at all stages, from pre-clinical, early diagnosis, supportive and palliative care to the late effects of treatment, following cure, and in different settings, and using multiple methodologies.I have broad research experience and methodological expertise across palliative care and the cancer clinical research spectrum. My research portfolio includes phase 2/3 clinical trials in oncology and supportive care, as well as large-scale surveys, clinical assessment tool development, implementation research, and multi-centre, multi-country qualitative research. I have particular interests in patient experience, interventions, overtreatment, and decision-making, trials methodologies, and the implementation and impact measurement of research outputs into clinical practice.
Current positions:
- Marie Curie Professor of Palliative and Supportive Care
- Scientific Director Marie Curie Research Centre (MCPCRC), Division of Population Medicine, School of Medicine, Cardiff University
- MCPCRC Theme Lead: Patient and carer experience
- Honorary Professor Swansea Clinical Trials Unit. School of Medicine, Swansea University.
- Palliative and Supportive Care Work Package Lead, Wales Cancer Research Centre (WCRC)
- Public and Patient Involvement (PPI) Academic Lead, Wales Cancer Research Centre
- Associate Director, Wales Cancer Trials Unit (WCTU).
Biography
- Marie Curie Professor of Palliative and Supportive Care
- Scientific Director Marie Curie Research Centre (MCPCRC), Division of Population Medicine, School of Medicine, Cardiff University
- MCPCRC Theme Lead: Patient and carer experience
- Palliative and Supportive Care Work Package Lead, Wales Cancer Research Centre (WCRC)
- Public and Patient Involvement (PPI) Academic Lead, Wales Cancer Research Centre
- Associate Director. Wales Cancer Trials Unit (WCTU).
Qualifications
- PhD: Palliative Care as Progressive Journey: The Interplay of Self, Hope and Death in Nurse-Patient Encounters across Three Care Settings. Department of English, Communication and Philosophy. Health Communication Research Centre. Cardiff University.
- Post Graduate Diploma in Language and Communication Research (Distinction). Department of English, Communication and Philosophy. Cardiff University.
- BA (Hons) English Language and Literature (First Class). Open University.
- Diploma in English Language Studies (Distinction). Open University.
Honours and awards
Outstanding Contribution Award for PPI runner up, School of Medicine, Cardiff University. 2016
Prize winner Joanne Muggeridge Research Poster Award. Marie Curie Annual Conference, London
Marie Curie Annual Research Conference, London. 2015
Innovation and Engagement, School of Medicine in December 2012 and 2013.
Academic positions
2008-2010. Marie Curie Senior Research Fellow, Wales Cancer Trials Unit responsible for developing the palliative care clinical trials portfolio, embedded patient experience as secondary outcome measures in clinical trials, and PPI.
Speaking engagements
Invited speaker European Society of Medical Oncology. Madrid September 2017
European Society of Medical Oncology. 201
Committees and reviewing
- Member NCRI CSG Palliative and Supportive Care
- Honorary Professor Swansea University Clinical Trials Unit
- Wales Cancer Research Centre: Member of Senior Operational Group,
- Wales Cancer Research Centre: PPI Academic Lead
- Wales Cancer Research Centre: Work Package Lead for Palliative and Supportive Care
- Wales Cancer Trials Unit: Executive Board, Trial Review Group, Qualitative Lead and Patient and Public Involvement Lead,
- Invited reviewer for the MRC Methodology programme, Irish Health Board, Diabetes UK, the NIHR Research for Patient Benefit programme, and for the NIHR Programme Grant for Applied Research.
- Cardiff Cancer Collaborative (CCC): Executive board member
- Trial Forge: Member of national group working on clinical trials methodology www.trialforge.org
- Past Member: NISCHR Registered Research Group: Cancer
- Past member: Chair PROMS and patient experience, NCRI group, Psycho oncology
- Past Member: NISCHR Registered Research Group: Cancer
Publications
2021
- Adamson, D.et al. 2021. Palliative radiotherapy after oesophageal cancer stenting (ROCS): a multicentre, open-label, phase 3 randomised controlled trial. Lancet Gastroenterology and Hepatology (10.1016/S2468-1253(21)00004-2)
2020
- Harrop, E.et al. 2020. The impacts and effectiveness of support for people bereaved through advanced illness: a systematic review and thematic synthesis. Palliative Medicine 34(7), pp. 871-888. (10.1177/0269216320920533)
- Harrop, E.et al. 2020. Coping and wellbeing in bereavement: two core outcomes for evaluating bereavement support in palliative care. BMC Palliative Care 19, article number: 29. (10.1186/s12904-020-0532-4)
- Clare, W.et al. 2020. Hospice inpatient deep vein thrombosis detection (HIDDen) in advanced non-malignant diseases: a longitudinal pilot study. BMJ Supportive and Palliative Care (10.1136/bmjspcare-2019-002039)
- Noble, S.et al. 2020. Patient experience of living with cancer-associated thrombosis in Canada (PELICANADA). Research and Practice in Thrombosis and Haemostasis 4(1), pp. 154-160. (10.1002/rth2.12274)
2019
- Mann, M.et al. 2019. Palliative Care Evidence Review Service (PaCERS): a knowledge transfer partnership. Health Research Policy and Systems 17(1), article number: 100. (10.1186/s12961-019-0504-4)
- Newman, A.et al. 2019. An evaluation of the Cardiff and Vale University Health Board weekend and bank holiday specialist palliative care clinical nurse specialist service. Project Report. Cardiff: Marie Curie Palliative Care Research Centre.
- Smith, P.et al. 2019. Systematic review of behavioural smoking cessation interventions for older smokers from deprived backgrounds. BMJ Open 9(11), article number: e032727. (10.1136/bmjopen-2019-032727)
- Byrne, A.et al. 2019. Early palliative interventions for improving outcomes in people with a primary malignant brain tumour and their carers. Cochrane Database of Systematic Reviews 2019(9), article number: CD013440. (10.1002/14651858.CD013440)
- Hopewell-Kelly, N.et al. 2019. Palliative care research centre's move into social media: constructing a framework for ethical research, a consensus paper. BMJ Supportive & Palliative Care 9(2), pp. 219-224. (10.1136/bmjspcare-2015-000889)
- Nelson, A., Mann, M. and Staffurth, J. 2019. Methods of assessing late radiotherapy effects on bowel function. Current Opinion in Supportive and Palliative Care 13(2), pp. 134-141. (10.1097/SPC.0000000000000422)
- Bowyer, A. V.et al. 2019. Gaining an accurate reflection of the reality of palliative care through the use of free-text feedback in questionnaires: the AFTER study. BMJ Supportive & Palliative Care 9(1), article number: e17. (10.1136/bmjspcare-2015-000920)
- Sivell, S.et al. 2019. Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper. BMJ Supportive & Palliative Care 9, article number: e14. (10.1136/bmjspcare-2015-000892)
- White, C.et al. 2019. Prevalence, symptom burden, and natural history of deep vein thrombosis in people with advanced cancer in specialist palliative care units (HIDDen): a prospective longitudinal observational study. Lancet Haematology 6(2), pp. e79-e88. (10.1016/S2352-3026(18)30215-1)
2018
- Palmieri, M.et al. 2018. 56 Rapid review of dissemination strategies and activities as listed in published protocol papers. BMJ Supportive and Palliative Care 8(3), pp. 381-382. (10.1136/bmjspcare-2018-mariecurie.56)
- Mann, M.et al. 2018. Evidence into practice: novel approaches to underpinning evidence-based innovations in care. BMJ Supportive & Palliative Care 8(3), article number: 382. (10.1136/bmjspcare-2018-mariecurie.57)
- Longo, M.et al. 2018. 30 Consensus and consistency: development of a core outcome set for evaluating bereavement support in palliative care [Poster abstract]. BMJ Supportive and Palliative Care 8(3), article number: 371. (10.1136/bmjspcare-2018-mariecurie.30)
- Morgan, F.et al. 2018. 54 Interventions and support for people bereaved through advanced progressive illness: a mixed-methods systematic review. BMJ Supportive and Palliative Care 8(3), pp. 380-381. (10.1136/bmjspcare-2018-mariecurie.54)
- Seddon, K.et al. 2018. 40 Detailing public involvement (PI) within a study of bereavement support services for adults bereaved through advanced illness [Poster Abstracts]. BMJ Supportive and Palliative Care 8(3), pp. 374-375. (10.1136/bmjspcare-2018-mariecurie.40)
- Prout, H. C.et al. 2018. Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study. Trials 19, article number: 419. (10.1186/s13063-018-2803-4)
- Newman, A.et al. 2018. Results of a survey of support to adult care homes in Wales: A specialist palliative care provider perspective.. Project Report. Cardiff: Marie Curie Palliative Care Research Centre.
- Baillie, J.et al. 2018. Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients', carers' and health professionals' experiences and further research questions. BMC Palliative Care 17, article number: 60. (10.1186/s12904-018-0314-4)
- Wasley, D.et al. 2018. Patients with established cancer cachexia lack the motivation and self-efficacy to undertake regular structured exercise. Psycho-Oncology 27(2), pp. 458-464. (10.1002/pon.4512)
- Harrop, E.et al. 2018. The challenge pathway: a mixed methods evaluation of an innovative care model for the palliative and end-of-life care of people with dementia (innovative practice). Dementia 17(2), pp. 252-257. (10.1177/1471301217729532)
2017
- Fitzgibbon, J., Cleary, K. and Nelson, A. 2017. Embedding patient and public involvement and engagement in a cancer research centre. In: Velikova, G. et al. eds. Problem Solving in Patient-Centred and Integrated Cancer Care. United Kingdom: EBN Health, pp. 92-96.
- Harrop, E.et al. 2017. Managing, making sense of and finding meaning in advanced illness: a qualitative exploration of the coping and wellbeing experiences of patients with lung cancer. Sociology of Health & Illness 39(8), pp. 1448-1464.
- Anagnostou, D.et al. 2017. Development of an intervention to support patients and clinicians with advanced lung cancer when considering systematic anticancer therapy: protocol for the PACT study. BMJ Open 7(7), article number: e015277. (10.1136/bmjopen-2016-015277)
- Neal, R. D.et al. 2017. Immediate chest X-ray for patients at risk of lung cancer presenting in primary care: randomised controlled feasibility trial. British Journal of Cancer 116(3), pp. 293-302. (10.1038/bjc.2016.414)
- Hills, M., Baillie, J. and Nelson, A. 2017. Advance care planning for a preferred place of death: Do professionals ask children and young people what they want?. Presented at: 8th International Cardiff Conference on Paediatric Palliative Care, Cardiff, 26-28 July 2017.
2016
- Harrop, E.et al. 2016. “It still haunts me whether we did the right thing”: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers. BMC Palliative Care 15, article number: 92. (10.1186/s12904-016-0165-9)
- Noble, S.et al. 2016. Impact of a dedicated cancer-associated thrombosis service on clinical outcomes: a mixed-methods evaluation of a clinical improvement exercise. BMJ Open 6(11), article number: e013321. (10.1136/bmjopen-2016-013321)
- Taylor, S.et al. 2016. The three-item ALERT-B questionnaire provides a validated screening tool to detect chronic gastrointestinal symptoms after pelvic radiotherapy in cancer survivors. Clinical Oncology 28(10), pp. e139-e147. (10.1016/j.clon.2016.06.004)
- Taylor, S.et al. 2016. Improving the well-being of men by Evaluating and Addressing the Gastrointestinal Late Effects (EAGLE) of radical treatment for prostate cancer: study protocol for a mixed-method implementation project. British Medical Journal Open 6(10), article number: e011773. (10.1136/bmjopen-2016-011773)
- Harrop, E.et al. 2016. 'I didn't really understand it, I just thought it'd help': exploring the motivations, understandings and experiences of patients with advanced lung cancer participating in a non-placebo clinical IMP trial. Trials 17(1), article number: 329. (10.1186/s13063-016-1460-8)
- Font, C.et al. 2016. Patients' Experiences of LIving with CANcer associated thrOmbosis in Spain (PELICANOS). Thrombosis Research 140(S1), pp. S199-S199. (10.1016/S0049-3848(16)30194-3)
- Taylor, S. E.et al. 2016. Late effects of pelvic radiation treatment (EAGLE study) [Abstract]. Journal of Clinical Oncology 34(3), pp. 159. (10.1200/jco.2016.34.3_suppl.159)
- Harrop, E.et al. 2016. Why do patients decline surgical trials? Findings from a qualitative interview study embedded in the Cancer Research UK BOLERO trial (Bladder cancer: Open versus Lapararoscopic or RObotic cystectomy). Trials 17, article number: 35. (10.1186/s13063-016-1173-z)
- Harrop, E.et al. 2016. Palliative and End of Life Care Priority Setting Partnership (PeolcPSP): Bereavement: experiences, needs and supportive interventions.
2015
- Sampson, C.et al. 2015. The care needs of patients with idiopathic pulmonary fibrosis and their carers (CaNoPy): results of a qualitative study. BMC Pulmonary Medicine 15, article number: 155. (10.1186/s12890-015-0145-5)
- Noble, S. I.et al. 2015. A feasibility study to inform the design of a randomised controlled trial to identify the most clinically effective and cost-effective length of Anticoagulation with Low-molecular-weight heparin In the treatment of Cancer-Associated Thrombosis (ALICAT). Health Technology Assessment 19(83), pp. 1-93. (10.3310/hta19830)
- Sivell, S.et al. 2015. Identifying the key elements of an education package to up-skill multidisciplinary adult specialist palliative care teams caring for young adults with life-limiting conditions: an online Delphi study. BMJ Supportive & Palliative Care 5(3), pp. 306-315. (10.1136/bmjspcare-2013-000595)
- Treweek, S.et al. 2015. Making randomised trials more efficient: report of the first meeting to discuss the Trial Forge platform. Trials 16, article number: 261. (10.1186/s13063-015-0776-0)
- Prout, H., Nelson, A. and Noble, S. 2015. The utility of PEmb-QoL and VEINES-QoL/Sym questionnaires in evaluating quality of life in the cancer associated thrombosis patient. Journal of Thrombosis and Haemostatis 13(S2), pp. 548., article number: PO109-TUE. (10.1111/jth.12993)
- Noble, S., Prout, H. and Nelson, A. 2015. Patients experiences of living with cancer associated thrombosis: the PELICAN study [Abstract]. Journal of Thrombosis and Haemostasis 13(S2), pp. 543-543. (10.1111/jth.12993)
- Sampson, C.et al. 2015. Canopy: Care needs of patients with idiopathic pulmonaty fibrosis and their carers. BMJ Supportive & Palliative Care 5(1), pp. 113., article number: P 027. (10.1136/bmjspcare-2014-000838.30)
- Noble, S., Prout, H. and Nelson, A. 2015. Patients' Experiences of LIving with CANcer-associated thrombosis: the PELICAN study. Patient Preference and Adherence 9, pp. 337-345. (10.2147/PPA.S79373)
- Watts, G. J.et al. 2015. Quality of life measures relating to the skin toxicities of tyrosine kinase inhibitor (TKI) use in lung cancer what is in current use in the literature?. Lung Cancer 87(S1), pp. S33., article number: 84. (10.1016/S0169-5002(15)50083-4)
- Mitchell, H.et al. 2015. Defining the palliative care patient: its challenges and implications for service delivery. BMJ Supportive & Palliative Care 5(4), pp. 46-52. (10.1136/bmjspcare-2012-000220rep)
- Hopewell-Kelly, N.et al. 2015. TACT: What impact does research partner involvement have on the working practices of a cancer clinical trials unit and academic research centre. BMJ Sipportive and Palliative Care 5, pp. 107-108. (10.1136/bmjspcare-2014-000838.16)
- Sivell, S.et al. 2015. Conducting qualitative research interviews with palliative and end of life care patients in the home setting: reflections and recommendations from an academic palliative care research centre [Conference Abstract]. BMJ Supportive and Palliative Care 5, article number: 117. (10.1136/bmjspcare-2014-000838.40)
- Hopewell-Kelly, N.et al. 2015. The use of social media in a palliative care research centre [Conference Abstract]. BMJ Supportive and Palliative Care 5, article number: 120. (10.1136/bmjspcare-2014-000838.47)
- Best, S.et al. 2015. Research priority setting in palliative and end of life care: the James Lind Alliance approach to consulting patient, carers and clinicians. Presented at: Marie Curie Annual Palliative Care Research Conference 2015, London, UK, 27 March 2015.
- Baillie, J.et al. 2015. Risky recruitment: feasibility of recruiting patients to a cancer associated thrombosis clinical trial - insights from an embedded qualitative study. Presented at: 14th World Congress of the European Association for Palliative Care, Copenhagen, Denmark, 8-10th May 2015. pp. 2307-2312.
- Sivell, S.et al. 2015. Social spaces and singular encounters: challenges to conducting qualitative research interviews in palliative and end of life care in the home setting. Presented at: 14th World Congress of the European Association for Palliative Care, Copenhagen, Denmark, 8-10 May 2015. pp. 2529-2534.
- Smith, R.et al. 2015. Research priority setting in palliative and end of life care: the James Lind Alliance approach consulting patients, carers and clinicians. Presented at: 14th World Congress of the European Association for Palliative Care, Copenhagen, Denmark, 8-10 May 2015. pp. 2529-2534.
- Hopewell-Kelly, N.et al. 2015. Utilising data from social media in palliative care research: developing an ethical framework. Presented at: 14th World Congress of the European Association for Palliative Care, Copenhagen, Denmark, 8-10 May 2015. pp. 1121-1128.
- Hopewell-Kelly, N.et al. 2015. TACT: what impact does research partner involvement have on the working practices of a cancer clinical trial unit and academic research Centre. Presented at: 14th World Congress of the European Association for Palliative Care, Copenhagen, Denmark, 8-10 May 2015. pp. 1121-1128.
2014
- Fitzgibbon, J.et al. 2014. The role of the public in developing interventions: a reflection and critique of a cancer clinical trials unit's model. Patient Preference and Adherence 8, pp. 1527-1535. (10.2147/PPA.S66734)
- Baillie, J.et al. 2014. Developing meaningful public involvement in a cancer clinical trials unit. Presented at: COMET IV Meeting: Core Outcome Measures in Effectiveness Trials, Rome, Italy, 20-21 November 2014.
- Hopewell-Kelly, N.et al. 2014. TACT: What impact does user involvement have on the working practices of a clinical trial research centre and academic research centre?. Presented at: COMET IV Meeting: Core Outcome Measures in Effectiveness Trials, Rome, 20-21 November 2014.
- Adamson, D.et al. 2014. Palliative radiotherapy in addition to self-expanding metal stent for improving dysphagia and survival in advanced oesophageal cancer (ROCS: Radiotherapy after Oesophageal Cancer Stenting): study protocol for a randomized controlled trial. Trials 15, article number: 402. (10.1186/1745-6215-15-402)
- Sampson, C.et al. 2014. The practice of palliative care from the perspective of patients and carers. BMJ Supportive and Palliative Care 4(3), pp. 291-298. (10.1136/bmjspcare-2013-000551)
- Prentice, J.et al. 2014. 'Don't blame the middle man': an exploratory qualitative study to explore the experiences of translators breaking bad news. Journal of the Royal Society of Medicine 107(7), pp. 271-276. (10.1177/0141076814527275)
- Noble, S.et al. 2014. ALICAT: Anticoagulation length in cancer associated thrombosis - a mixed-methods feasibility study. Thrombosis Research 133(Supp 2), pp. S220-S220. (10.1016/S0049-3848(14)50032-1)
- Noble, S., Seaman, S. and Nelson, A. 2014. Attitudes of cancer associated thrombosis patients to the novel oral anticoagulants: insights from qualitative interviews. Thrombosis Research 133, pp. S219-S219.
- Seaman, S., Nelson, A. and Noble, I. 2014. Cancer-associated thrombosis, low-molecular-weight heparin, and the patient experience: a qualitative study. Patient Preference and Adherence 8, pp. 453-461. (10.2147/PPA.S58595)
- Maughan, T.et al. 2014. A feasibility study testing four hypotheses with phase II outcomes in advanced colorectal cancer (MRC FOCUS3): A model for randomised controlled trials in the era of personalised medicine?. British Journal of Cancer 110, pp. 2178-2186. (10.1038/bjc.2014.182)
- Seaman, S., Nelson, A. and Noble, S. I. R. 2014. Is long-term low-molecular-weight heparin still acceptable to palliative care patients in the treatment of cancer-associated thrombosis? A qualitative study revisited. BMJ Supportive & Palliative Care 4, pp. A25., article number: P 028. (10.1136/bmjspcare-2014-000654.69)
- Bowyer, A.et al. 2014. After iWantGreatCare: Service user feedback as a means of refining the iWantGreatCare questionnaire [Abstract]. BMJ Supportive & Palliative Care 4(S1), pp. A47-A48. (10.1136/bmjspcare-2014-000654.133)
- Neal, R. D.et al. 2014. A feasibility randomised controlled trial looking at the effect on lung cancer diagnosis of giving a chest X-ray to smokers aged over 60 with new chest symptoms – the ELCID trial [Abstract]. Lung Cancer 83, pp. S81-S82. (10.1016/S0169-5002(14)70220-X)
- Harrop, E., Byrne, A. and Nelson, A. 2014. "It's alright to ask for help": findings from a qualitative study exploring the information and support needs of family carers at the end of life. BMC Palliative Care 13, pp. 22. (10.1186/1472-684X-13-22)
- Smith, J. D.et al. 2014. A feasibility study to inform the design of a randomized controlled trial to identify the most clinically and cost effective Anticoagulation Length with low molecular weight heparin In the treatment of Cancer Associated Thrombosis (ALICAT): study protocol for a mixed-methods study. Trials 15(1), article number: 122. (10.1186/1745-6215-15-122)
- Noble, S. I. R.et al. 2014. Anticoagulation length in cancer associated thrombosis: a mixed-methods feasibility study. Presented at: International Conference on Thrombosis and Hemostasis Issues in Cancer, Bergamo, Italy, 9-11 May 2014.
- Baillie, J.et al. 2014. Engaging minority ethnic communities to improve access to palliative care: Barriers and strategies. Presented at: Marie Curie Annual Palliative Care Research Conference, London, 28 March 2014BMJ Supportive and Palliative Care. BMJ pp. 114-(P026)., (10.1136/bmjspcare-2014-000653.28)
2013
- Lucia, A.et al. 2013. Neuromuscular electrical stimulation of the quadriceps in patients with non-small cell lung cancer receiving palliative chemotherapy: a randomized phase II study. PLoS ONE 8(12), article number: e86059. (10.1371/journal.pone.0086059)
- Nelson, A.et al. 2013. QUALZICE: A QUALitative exploration of the experiences of the participants from the ZICE clinical trial (metastatic breast cancer) receiving intravenous or oral bisphosphonates. Trials 14(1), article number: 325. (10.1186/1745-6215-14-325)
- Lidstone, V.et al. 2013. Transition in palliative care study day series. BMJ Supportive & Palliative Care 3(S1), pp. A48-A49. (10.1136/bmjspcare-2013-000591.131)
- Sivell, S.et al. 2013. Free communication FC 12.1 (oral abstract): Educating adult palliative care teams about the needs of transition age young people. What do they need to know?. Presented at: 13th World Congress of the European Association for Palliative Care, Prague, Czech Republic, 30 May - 2 June 2013European Journal of Palliative Care. suppl.. pp. 60.
- Hurt, C. N.et al. 2013. A feasibility study examining the effect on lung cancer diagnosis of offering a chest X-ray to higher-risk patients with chest symptoms: protocol for a randomized controlled trial. Trials 14(1), article number: 405. (10.1186/1745-6215-14-405)
- Byrne, A.et al. 2013. A mixed-methods study of the care needs of individuals with idiopathic pulmonary fibrosis and their carers--CaNoPy: a study protocol. BMJ Open 3(8), article number: e003537. (10.1136/bmjopen-2013-003537)
- Baillie, J.et al. 2013. Supporting lay representatives and researchers: the role of the research partner coordinator at a clinical trials unit and palliative care research centre. Presented at: New Developments in Public Involvement in Research Conference, Exeter; UK, 13 15 November 2013.
- Nawaz, S.et al. 2013. Improving access to palliative care services for minority ethnic communities in Wales. Presented at: All Wales Palliative Care Conference, Powys; UK, 10 - 11 October 2013.
- Baillie, J.et al. 2013. Breaking down barriers: evaluating a Marie Curie Hospice project aimed at improving access to palliative care by minority ethnic groups. Presented at: 13th World Congress of the European Association for Palliative Care, Prague, 30 May - 2 June 2013BMJ Supportive and Palliative Care. BMJ pp. 131., (10.1136/bmjspcare-2013-000453b.19)
- Harrop, E.et al. 2013. An evaluation of an integrated specialist nurse led palliative care clinic within a general practice setting. Presented at: 13th World Congress of the European Association for Palliative Care, Prague, Czech Republic, 30 May - 2 June 2013.
- Baillie, J.et al. 2013. Breaking down barriers: evaluating a Marie Curie Hospice project aimed at improving access to palliative care services by minority ethnic groups. Presented at: Marie Curie Annual Palliative Care Research Conference, London, UK, 28 March 2014.
- Harrop, E.et al. 2013. Broadening access; an integrated specialist nurse led palliative care clinic within a general practice setting. Presented at: Marie Curie Annual Palliative Care Research Conference, London; UK, 28 March 2014BMJ Supportive & Palliative Care. BMJ pp. 131., (10.1136/bmjspcare-2013-000453b.20)
- Sivell, S.et al. 2013. 012 Improving the transition process for young people with life-limiting conditions. BMJ Supportive and Palliative Care 3(A5) (10.1136/bmjspcare-2013-000591.12)
2012
- Edwards, M.et al. 2012. 110 Motivations of palliative lung cancer patients to participate in a non-placebo clinical trial (QualFRAG). Lung Cancer 75(s1), pp. s36.
- Vale, C.et al. 2012. Public involvement in clinical trials: supplement to the briefing notes for researchers. National Institute for Health Research.
2011
- Taubert, M. and Nelson, A. 2011. Heartsink encounters: a qualitative study of end-of-life care in out-of-hours general practice. Journal of the Royal Society of Medicine Short Reports 2(9), article number: 70. (10.1258/shorts.2011.011020)
2010
- Taubert, M. and Nelson, A. 2010. Out-of-hours GPs and palliative care-a qualitative study exploring information exchange and communication issues. BMC Palliative Care 9, article number: 18. (10.1186/1472-684X-9-18)
- Taubert, M. and Nelson, A. 2010. 'Oh God, not a Palliative': out-of-hours general practitioners within the domain of palliative care. Palliative Medicine 24(5), pp. 501-509. (10.1177/0269216310368580)
- Taubert, M. and Nelson, A. 2010. Strangers in the night - Out of hours doctors and palliative care patients. Presented at: The 8th Palliative Care Congress, Palliative Medicine. 24(2):217, 2010., Bournemouth, UK, 10-12 March 2010.
2008
- Noble, S. I. R., Nelson, A. and Finlay, I. G. 2008. Factors influencing hospice thromboprophylaxis policy: a qualitative study. Palliative Medicine 22(7), pp. 808-813. (10.1177/0269216308096723)
- Johnson, H. M. and Nelson, A. 2008. The acceptability of an information leaflet explaining cardiopulmonary resuscitation policy in the hospice setting: a qualitative study exploring patients' views. Palliative Medicine 22(5), pp. 647-652. (10.1177/0269216308088690)
- Noble, S. I. R., Nelson, A. and Finlay, I. G. 2008. Challenges faced by palliative care physicians when caring for doctors with advanced cancer. Palliative Medicine 22(1), pp. 71-76. (10.1177/0269216307084607)
Teaching
I have been involved with the MSc in Palliative Medicine since 2005. This is an international distance learning course with residential modules twice per year. Each year, I deliver around 4-5 lectures on various topics. I have supervised more than 40 students with a 100% pass rate, and a high number of merits and distinctions.
Ongoing or completed MSc projects 2015/2016
- MSc: Ms Siobhan Harkin. Mobilising patients with known long bone metastases at risk of pathological fracture. Identifying the key considerations for clinical practice.
- MSc: Dr Michelle Hills. Advance care planning for preferred place of death for children and young people with life-limiting and life-threatening conditions: A qualitative study exploring healthcare professionals attitudes and discussions with children, young people and their families
- MSc: Mrs Ceri Davies. Attitudes to Sexuality in Specialist Palliative Care Nurses. Awarded Merit.
- Awarded RSM prize and MSc merit: Dr Megumi Baba. Comparing knowledge and attitudes to palliative care of paediatric oncologists in the UK and Japan.
- MSc: Elaine McGleish. Nurse independent prescribing in palliative care. Awarded distinction
Projects
My portfolio includes research into cancer interventions, management, and decision-making, focusing on colorectal, upper GI, lung, prostate, bladder and brain, and non-cancer disease including respiratory conditions, MND, and dementia support.
I have an interest in trials and study methodologies and the ethics of research in different areas (e.g. mining data from social media, interviewing very ill patients at home, trials equipoise). Another major work stream is the modelling and implementation of Public and Patient Involvement across diverse research groups and organisations.
Grant capture (circa £12million as CI, Co-CI or Co-app)
2015-2018 Cariad: CARer-ADministration of as-needed sub-cutaneous medication for breakthrough symptoms in home-based dying patients: a UK study (CARiAD) NIHR HTA
2016-2017 Survey of palliative care provision to care homes 2. Overall national dataset report
Public Health England.
2017-2018. Attitudes to death and dying survey Velindre End of Life Board.
2017-2022 Marie Curie Palliative Care Research Centre Infrastructure Funding
Marie Curie
Empower Project
2017-2018 Tenovus.
2016-2018 (Co-app) Dr Emily Harrop, Dr Anthony Byrne, Dr Despina Anagnostou, Dr Annmarie Nelson. Development of a core outcome set for bereavement interventions. Marie Curie Cancer Care
2015-2020 (Co-app) Joint lead applicants: Dr Maria Hawkins (Gray Institute for Radiation Oncology and Biology), Dr Somnath Mukherjee (University of Oxford) SCOPE2 - A randomised Phase II/III trial to study radiotherapy dose escalation in patients with oesophageal cancer treated with definitive chemo-radiation with an embedded Phase II trial for patients with a poor early response using positron emission tomography (PET) . CTAAC CRUK
2015-2016 (Co-app) Dr Simon Noble, Dr Annmarie Nelson. The Challenge Pathway Study: An evaluation of an innovative service model for the end of life care of people with dementia. Aneurin Bevan
2015-2018 (Co-app) Dr Anthony Byrne (co-app WCRC £4.5m) Dr Annmarie Nelson, Dr Simon Noble. Wales Cancer Research Centre: Work Package 9 Health and Social Research Wales
2015-2018 (Co-app) Dr Simon Noble, Annmarie Nelson. HIDDEN; DVT Hospice Prevalence observational study. Doppler scans of hospice inpatients to establish prevalence of asymptomatic DVT. HTA
2013-2017 (Co-app) Dr Anthony Byrne, Dr Annmarie Nelson (grant holder), Mr Gareth Griffiths, Baroness Professor Ilora Finlay, , Dr Simon Noble. Infrastructure funding for Marie Curie Palliative Care Research Centre, Wales. Marie Curie Cancer Care
2014-2017. (co Chief Investigator) Dr John Staffurth, Dr Annmarie Nelson et al. EAGLE: ‘Improving the wellbeing of men by evaluating and addressing the gastrointestinal late effects of radical treatment for prostate cancer’. Prostate cancer UK via Movember
2013-2016 (CI) Dr Annmarie Nelson et al. PACT development of an intervention to support lung cancer Patients and their clinicians when considering systemic Anti-Cancer Therapy. Stepping Stones, Velindre NHS Trust Charitable Funds.
2013-2016 (co Chief Investigator) Dr Annmarie Nelson and Dr Simon Noble. PhD studentship: The development and validation of a patient reported outcome measure tool for assessing skin toxicities associated with tyrosine kinase inhibitor administration. Stepping Stones, Velindre NHS Trust Charitable Funds. PhD studentship.
2013-2014 (CI) Dr Annmarie Nelson et al After: Refinement of IWGC questionnaire Tenovus.
2013-2014 (Co-app) Dr John Green, Dr Annmarie Nelson et al. DESIGNER: Development of GI RT symptom assessment tool. Tenovus
2012-2015 (Co-app) Dr Simon Noble, Dr Annmarie Nelson et al. PELICAN: Patient Experience of Living with CANcer associated thrombosis. Leo Pharma.
2012-2014 (Co-app) Dr Simon Noble, Dr Annmarie Nelson et al. TROPHY: Thrombosis Registry of Palliative and Hospice Units. Pfizer
2012-2015 (Co-app) Dr A Byrne, Dr Annmarie Nelson et al. CaNoPy: A study of the Care Needs of Idiopathic Pulmonary Fibrosis (IPF) patients and their carers. Marie Curie Cancer Care.
2012-2015 (Co-app) Dr S Noble, Dr Annmarie Nelson et al. ALICAT: A feasibility study to inform the design of a randomised controlled trial to identify the most clinically and cost effect length of Anticoagulation with Low molecular weight heparin In the treatment of Cancer Associated Thrombosis. NIHR HTA
2012-2018 HTA. (Co-app) Dr Douglas Adamson/Dr Anthony Byrne (CIs) Dr Annmarie Nelson et al. ROCS: Radiotherapy and stent in oesophageal cancer. NIHR HTA
2011-2013 (co Chief Investigator) Dr Simon Noble/Dr Annmarie Nelson et al. Qualfrag. Velindre Charitable Funds Stepping Stones Charity
2011-2012 (Co-app) Dr Anthony Byrne, Dr Annmarie Nelson et al. RECC: Baseline exercise and cachexia study. Tenovus
2010-2013 (Co-app) Dr Anthony Byrne, Dr Annmarie Nelson, Mr Gareth Griffiths, Baroness Professor Ilora Finlay, Prof Tim Maughan, Dr Simon Noble, Dr Andy Fowell. Marie Curie Cancer Care. Infrastructure funding for Marie Curie Palliative Care Research Centre, Wales. Marie Curie Cancer Care
2011-2014 (Co-app) Dr Richard Neal, Dr A Nelson et al. El-CID: Improved lung cancer identification by targeted chest x-ray. NIHR NAEDI
2009-2011 (Co-app) Dr Andrew Wilcock, Dr Annmarie Nelson et al. NMES: Is neuromuscular electrical stimulation an acceptable and feasibly supportive therapy for patients with non-small cell lung cancer receiving palliative chemotherapy? SuPaC
2009-2011 (Co-app) Prof John Kelly, Dr Annmarie Nelson et al. BOLERO: Open versus Laparoscopic or Robotic cystectomy. A study to determine the feasibility of randomisation to open versus minimal access cystectomy in patients with muscle invasive bladder cancer. CRUK
2008-2010. (Co-app) Prof Tim Maughan, Dr Annmarie Nelson et al. FOCUS III: A study to determine the feasibility of molecular selection of therapy in patients with metastatic colorectal cancer Medical Research Council. London
2008-2009 (Co-app) Dr Anthony Byrne, Dr Annmarie Nelson et al. BRITECOG: Validating breathlessness measures for use in patients with lung cancer: a cognitive interview study. Velindre Trust Small Grant Award Committee
2008-2010. (CI) Dr Annmarie Nelson et al. QUALZICE: A QUALitative exploration of the experiences of ZICE clinical trial participants with metastatic breast cancer receiving intravenous or oral bisphosphonates at clinic or home. Velindre Charitable Trusts Scheme.
Supervision
Palliative and Supportive Care
Treatment decision support for lifr limiting conditions
Late effects of cancer treatment
Patient and Public Involvement
Patient and carer experience
Past projects
Current PhD supervision
Pamela Smith. Smoking cessation in deprived communities. 2017-2020.
MPhil supervision. 2013-2016: Dr Gareth Watts. The development and validation of a patient reported outcome measure tool for assessing skin toxicities associated with tyrosine kinase inhibitor administration. Co-supervisor. Pass.
Undergraduate Medicine Intercalated degree 2017: Rhianna Church. Decisions around dying in palliative and end of life care.Supervisor. Awarded 2.1
Recent completed MSc projects 2014-2016
MSc: Dr Michelle Hills. Advance care planning for preferred place of death for children and young people with life-limiting and life-threatening conditions: A qualitative study exploring healthcare professionals’ attitudes and discussions with children, young people and their families.
Supervisor. Awarded distinction.
MSc: Mrs Ceri Davies. Attitudes to Sexuality in Specialist Palliative Care Nurses.Supervisor
Awarded Merit
MSc: Dr Megumi Baba. Comparing knowledge and attitudes to palliative care of paediatric oncologists in the UK and Japan.Supervisor. Awarded Royal Society of Medicine national prize and MSc merit
MSc: Elaine McGleish. Nurse independent prescribing in palliative care. Supervisor
Awarded distinction