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 hold a personal chair as Marie Curie Professor of Supportive and Palliative Care and am Scientific Director of the Marie Curie Palliative Care Research Centre, established in 2010. 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
- Programme Lead Optimised Patient Experience , Wales Cancer Research Centre (WCRC)
- Co-lead Palliative and Supportive Care work package, Primary Care and Emergency centre (PRIME)
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
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.
Publications
2022
- Clare, W. et al. 2022. Hospice inpatient deep vein thrombosis detection (HIDDen) in advanced non-malignant diseases: a longitudinal pilot study. BMJ Supportive and Palliative Care 12(e6), pp. e767-e770. (10.1136/bmjspcare-2019-002039)
- Fiddimore, E., Harrop, E., Nelson, A. and Sivell, S. 2022. 'I don't want to hear statistics, I want real life stories': systematic review and thematic synthesis of patient and caregiver experiences of Proton Beam Therapy. Journal of Psychosocial Oncology (10.1080/07347332.2022.2136997)
- Scott, H. et al. 2022. What should good bereavement service support look like? Findings from pre-pandemic workshop discussions interpreted in the context of the Covid-19 pandemic. Bereavement: Journal of Grief and Responses to Death 1 (10.54210/bj.2022.1078)
- Bravington, A. et al. 2022. The range and suitability of outcome measures used in the assessment of palliative treatment for inoperable malignant bowel obstruction: a systematic review. Palliative Medicine 36(9), pp. 1336-1350.
- Harrop, E. et al. 2022. Parental perspectives on the grief and support needs of children and young people bereaved during the COVID-19 pandemic: Qualitative findings from a national survey. BMC Palliative Care 21, article number: 177. (10.1186/s12904-022-01066-4)
- Retzer, A. et al. 2022. Development of a core outcome set and identification of patient-reportable outcomes for primary brain tumour trials: protocol for the COBra study. BMJ Open 12, article number: 57712. (10.1136/bmjopen-2021-057712)
- Baddeley, E. et al. 2022. Symptom burden and lived experiences of patients, caregivers and healthcare professionals on the management of malignant bowel obstruction: A qualitative systematic review. Palliative Medicine 36(6), pp. 895-911. (10.1177/02692163221081331)
- Escritt, K., Mann, M., Nelson, A. and Harrop, E. 2022. Hope and meaning-making in phase-one oncology trials: A systematic review and thematic synthesis of qualitative evidence on patient-participant experiences. Trials 23, article number: 409. (10.1186/s13063-022-06306-9)
- Seddon, K., Elliott, J., Johnson, M., White, C., Watson, M., Nelson, A. and Noble, S. 2022. Using the United Kingdom standards for public involvement to evaluate the impact of public involvement in a multinational clinical study. Research Involvement and Engagement 7(1), article number: 22. (10.1186/s40900-021-00264-3)
- Torrens-Burton, A. et al. 2022. “It was brutal. It still is”: A qualitative analysis of the challenges of bereavement during the COVID-19 pandemic reported in two national surveys. Palliative Care and Social Practice 16, pp. 1-17. (10.1177/26323524221092456)
- Prout, H., Tod, A., Neal, R. and Nelson, A. 2022. Maximising recruitment of research participants into a general practice based randomised controlled trial concerning lung diagnosis—staff insights from an embedded qualitative study. Trials 23, article number: 225. (10.1186/s13063-022-06125-y)
- Mazzaschi, F., Peddle, S., Seddon, K., Sivell, S., Byrne, A. and Nelson, A. 2022. 53 Incorporation and evaluation of the patient and public involvement national standards within doctoral research focussed on the improvement of quality of life of patients with high-grade glioma. Presented at: 2022 Marie Curie Research Conference Improving End of Life, Virtual, 30 January - 04 February 2022, Vol. 12. Vol. Supple. BMJ Publishing Group pp. A22., (10.1136/spcare-2021-MCRC.53)
- Byrne, A. et al. 2022. Early palliative interventions for improving outcomes in people with a primary malignant brain tumour and their carers pub2. Cochrane Library 2022(1), article number: CD013440. (10.1002/14651858.CD013440.pub2)
2021
- Harrop, E. et al. 2021. Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic. Palliative Medicine 35(10), pp. 1985-1997. (10.1177/02692163211043372)
- Mazzaschi, F., Sivell, S., Byrne, A., Brain, K., Powell, J. and Nelson, A. 2021. Everyday memory and processing alteration in patients with high-grade glioma after radiotherapy: a mixed method, public survey. Presented at: 17th World Congress of the European Association for Palliative Care (EAPC 2021), Virtual, 06-08 October 2021, Vol. 35. Vol. Supple. SAGE Publications pp. 76-77., (10.1177/02692163211035909)
- Baddeley, E., Torrens-Burton, A., Newman, A., Nelson, A., Pease, N., Nelson, R. and Noble, S. 2021. A mixed-methods study to evaluate a patient-designed tool to reduce harm from cancer-associated thrombosis: The EMPOWER study. Research and Practice in Thrombosis and Haemostasis 5(5), article number: e12545. (10.1002/rth2.12545)
- Islam, I., Nelson, A., Longo, M. and Byrne, A. 2021. Before the 2020 Pandemic: an observational study exploring public knowledge, attitudes, plans, and preferences towards death and end of life care in Wales. BMC Palliative Care 20(1), article number: 116. (10.1186/s12904-021-00806-2)
- Adamson, D. et al. 2021. Palliative radiotherapy combined with stent insertion to reduce recurrent dysphagia in oesophageal cancer patients: the ROCS RCT. Health Technology Assessment 25(31) (10.3310/hta25310)
- Smith, P., Daniel, R., Murray, R. L., Moore, G., Nelson, A. and Brain, K. 2021. Psychosocial determinants of quit motivation in older smokers from deprived backgrounds: a cross-sectional survey. BMJ Open 11(5), article number: e044815. (10.1136/bmjopen-2020-044815)
- 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 6(4), pp. 292-303. (10.1016/S2468-1253(21)00004-2)
- Harrop, E. et al. 2021. End of life and bereavement experiences during the COVID-19 pandemic: interim results from a national survey of bereaved people. Presented at: Palliative Care Congress 2021, Virtual, 25-26 March 2021, Vol. 11. Vol. Supple. BMJ Publishing Group pp. A3., (10.1136/spcare-2021-PCC.6)
- Islam, I., Goss, S., Nelson, A. and Byrne, A. 2021. Involving high-grade glioma patients and their carers in qualitative research to promote structured physical activity: a mixed-methods study protocol. International Journal of Qualitative Methods 20, article number: 160940692098213. (10.1177/1609406920982133)
2020
- Longo, M. et al. 2020. Holistic care: the clinical nurse specialist’s role in advanced lung cancer patients. Palliative Medicine 34(Supple), pp. 79-79. (10.1177/0269216320958098)
- Nelson, A. et al. 2020. Chemotherapy decision-making in advanced lung cancer: a prospective qualitative study. BMJ Supportive & Palliative Care (10.1136/bmjspcare-2020-002395)
- 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)
- Byrne, A. T. et al. 2020. Radiotherapy after esophageal cancer stenting (ROCS): A pragmatic randomized controlled trial evaluating the role of palliative radiotherapy in maintaining swallow.. Journal of Clinical Oncology 38(15_sup), article number: 4569. (10.1200/JCO.2020.38.15_suppl.4569)
- 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)
- Noble, S., Nelson, A., Scott, J., Berger, A., Schmidt, K., Swarnkar, P. and Lee, A. 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., Woodward, A., Nelson, A. and Byrne, A. 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., Longo, M., Edwards, H., Nelson, A., Byrne, A. and Lewis, M. 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., Poole, R., Mann, M., Nelson, A., Moore, G. and Brain, K. 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)
- 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)
- 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)
- 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
- 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)
- 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)
- 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)
- Palmieri, M., Morgan, F., Longo, M., Gregory, C., Nelson, A. and Hepburn, J. 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., Nelson, A., Woodward, A., Islam, I. and Byrne, A. 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)
- 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., Allnatt, G., Nelson, A. and Byrne, A. 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., Anagnostou, D., Sivell, S., Van Godwin, J., Byrne, A. and Nelson, A. 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)
- Mann, M., Woodward, A., Nelson, A. and Byrne, A. 2018. What are the models and outcomes of Public and Patient Involvement (PPI) in cancer and palliative care research? A rapid review. Project Report. Cardiff: Cardiff University.
- Wasley, D., Gale, N., Roberts, S., Backx, K., Nelson, A., van Deursen, R. and Byrne, A. 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., Nelson, A., Rees, H., Harris, D. and Noble, S. 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
- Harrop, E., Noble, S., Edwards, M., Sivell, S., Moore, B. and Nelson, A. 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., Morgan, F., Byrne, A. and Nelson, A. 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., Noble, S., Edwards, M., Sivell, S., Moore, B. and Nelson, A. 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., Garcia-Fernandez, T., Nelson, A., Prout, H. and Noble, S. 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., Kelly, J., Griffiths, G., Casbard, A. C. and Nelson, A. 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., Godwin, J. v., Sivell, S., Baillie, J., Byrne, A. and Nelson, A. 2016. Palliative and end of life care priority setting partnership (PeolcPSP): Bereavement: experiences, needs and supportive interventions. Project Report.
2015
- Harrop, E., Baillie, J., Hopewell Kelly, N., Byrne, A. and Nelson, A. 2015. Breaking down barriers: evaluating a Marie Curie Hospice project aimed at improving access to palliative care by minority ethnic groups. Cardiff: Marie Curie Palliative Care Research Centre , Cardiff University School of Medicine.
- Sampson, C., Gill, B. H., Harrison, N. K., Nelson, A. and Byrne, A. 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. 1-94. (10.3310/hta19830)
- Sivell, S., Lidstone, V., Taubert, M., Thompson, C. and Nelson, A. 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., Hope-Gill, B., Harrison, N., Nelson, A. and Byrne, A. 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., Nelson, A., Lester, J. S. and Noble, S. I. 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)
- Hopewell-Kelly, N., Fitzgibbon, J., Baillie, J. and Nelson, A. 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., Nelson, A., Sivell, S. and Noble, S. 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., Fitzgibbon, J., Baillie, J. and Nelson, A. 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.
- Mitchell, H., Noble, S. I. R., Finlay, I. G. and Nelson, A. 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)
2014
- Fitzgibbon, J., Baillie, J., Simon, N. and Nelson, A. 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., Fitzgibbon, J., Simon, N., Adams, R. and Nelson, A. 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., Fitzgibbon, J., Baillie, J. and Nelson, A. 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., Finlay, I., Byrne, A., Snow, V. and Nelson, A. 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., Nelson, A., Baillie, J., Osborn, H. and Noble, S. I. R. 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)
- 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)
- 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)
- 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)
- 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., Harrop, E., Hopewell-Kelly, N., Stephens, K., Byrne, A. and Nelson, A. 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)
- 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)
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)
- Harrop, E. et al. 2013. ‘Once I knew there was a choice, I wanted to exercise that choice': using qualitative methods to understand why patients decline surgical trials.. Trials 14(S1), article number: P9 (2013). (10.1186/1745-6215-14-s1-p9)
- 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., Sivell, S., Taubert, M., Thompson, C. and Nelson, A. 2013. Transition in palliative care study day series. BMJ Supportive & Palliative Care 3(S1), pp. A48-A49. (10.1136/bmjspcare-2013-000591.131)
- 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., Fitzgibbon, J., Simon, N., Griffiths, G. and Nelson, A. 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., Baillie, J., Harrop, E., Byrne, A., Stephens, K. and Nelson, A. 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., Harrop, E., Byrne, A., Stephens, K. and Nelson, A. 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., Baillie, J., Byrne, A., Stephens, K. and Nelson, A. 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., Harrop, E., Byrne, A., Stephens, K. and Nelson, A. 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., Baillie, J., Byrne, A., Stephens, K. and Nelson, A. 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., Lidstone, V., Taubert, M., Thompson, C. and Nelson, A. 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)
- Sivell, S., Lidstone, V., Taubert, M. and Nelson, A. 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.
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. I have supervised more than 50 students with a 100% pass rate, and a high number of merits and distinctions.
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.
|
Project Name |
Funder |
Funding Dates |
Total Funding |
Role
|
|
Validation of Tie2 as the First Tumour Vascular Response Biomarker for VEGF Inhibitors: VALTIVE1 (VALTIVE1) |
CRUK |
2020-2024 |
£1,003,449.20 |
Co-I Qualitative Lead |
|
BeCovid (Bereavement during Covid-19) |
Economic and Social Research Council: UKRI Ideas to Address COVID-19
|
2020 - 2022 |
£235,000.00 |
Co-I |
|
Wales Cancer Research Centre: Patient Experience/Physiological resilience work packages |
Health and care Research Wales |
2020-2025 |
£665,000.00 |
Work Package lead |
|
Patient Reported Core Outcomes in Brain Tumour Trials: the COBra study |
The Brain Tumour Charity: |
2020-2022 |
£ 152,949.00 |
Co-I |
|
Primary Care and Emergency (PRIME) Centre |
Health and Care Research Wales |
2020 - 2023 |
£ 4,634,746.00 |
Co-I/Palliative Care work package lead |
|
Public perceptions of proton beam therapy |
Tenovus I grants |
2020-2022 Awarded but withdrawn by funder - Covid
|
£29,999.00 |
Co-I |
|
Multidisciplinary team meeting model for Allied Health Professionals |
Tenovus I grants |
2020-2022 Awarded but withdrawn by funder - Covid
|
£30,000.00 |
Co-I |
|
PhD Funding: Developing a screening tool for the late effects of treatment for brain cancers
|
Marie Curie |
2018-2021 |
£65,500.00 |
CI/Principal supervisor |
|
Wales Cancer Research Centre Work Package 9 Palliative and Supportive Care |
Health and Care Research Wales |
2018-2020 |
£330,000.00 |
Co-I/Work package lead |
|
Research Assessment Outcome Measures for Malignant Bowel Obstruction (RAMBO) |
Marie Curie |
2018-2020 |
£218,403.87
|
Co-I Qualitative Lead |
|
Physical activity for people with Brain Tumour in the UK and Bangladesh |
Tenovus |
2018-2020 |
£29,990 |
Co-I |
|
CHRONOS: Comparative Health Research Outcomes of NOvel Surgery in prostate cancer |
Prostate Cancer UK. Research Innovation Awards |
2017-2020 |
£485,966.00 |
Co-I Qualitative Lead |
|
Research development including bereavement services scoping survey |
One Wales Palliative Care programme |
2017-2020 |
£75,000 |
CI |
|
THE EMPOWER PROJECT: EVALUATING A PATIENT DESIGNED TOOL TO REDUCE HARM FROM CANCER ASSOCIATED THROMBOSIS |
Tenovus |
2017-2018 |
£29,000.00 |
Co-I |
|
Commissioned report of summary of Palliative Care minimum data sets Survey of Palliative care support to care homes in England and Wales
|
National Council for Palliative Care/ Public Health England |
2017-2018 |
£23,000 |
CI |
|
Marie Curie Palliative Care Research Centre Infrastructure Funding |
Marie Curie |
2017 - 2022 |
£2,170,956.00 |
Grant holder/Co-I |
|
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 |
2017 - 2019 |
£1,682,836.00 |
Co-I |
|
Attitudes to death and dying Welsh survey |
Velindre End of Life Board |
2017 - 2018 |
£19,745.00 |
CI |
|
Survey of palliative care provision to care homes 2. draft overall national dataset report |
Public Health England |
2016-2017 |
£13,000.00 |
CI |
|
Top up funding for supplementary analysis of PeolcPSP data |
Economic and Social Research Council |
2016-2016 |
£10,000.00 |
CI |
|
Cariad: CARer-ADministration of as-needed sub-cutaneous medication for breakthrough symptoms in home-based dying patients: a UK study (CARiAD) |
NIHR HTA |
2016 - 2019 |
£493,694.00 |
Co-I |
|
Bereavement: Supporting people bereaved through advanced illness: a systematic review of the evidence and development of a core outcome set for bereavement research in palliative care |
Marie Curie |
2016 - 2018 |
£82,000.00 |
Co-I |
|
HIDDen: DVT Hospice Prevalence observational study. Doppler scans of hospice inpatients to establish prevalence of asymptomatic DVT |
NIHR |
2016 - 2018 |
£420,000.00 |
Co-I |
|
Wales Cancer Research Centre Work Package 9 Palliative and Supportive Care |
Health and Care Research Wales |
2015-2018 |
£83,000.00 |
Co-I |
|
Optimising the patient journey with cancer associated Thrombosis (TOPCAT) |
Tenovus |
2015 - 2016 |
£29,940.00 |
Co-I |
|
Palliative and end of life care Priority Setting Partnership (PeolcPSP) |
Marie Curie |
2014 -2016 |
£24,031.00 |
PI |
|
EAGLE: Improving the wellbeing of men by evaluation and addressing the gastrointestinal late effects of radical treatment for prostate cancer |
Prostate Cancer UK |
2014 - 2018 |
£448,064.00 |
Co-CI |
|
Marie Curie Palliative Care Research Centre Infrastructure Funding |
Marie Curie |
2014 - 2017 |
£1,130,000.00 |
Grantholder/Co-I |
|
PELICAN: Patients Experience of living with Cancer Associated Thrombosis |
Velindre |
2014 - 2015 |
£20,000.00 |
Co-I |
|
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) |
Aneurin Bevan Health Board |
2014 - 2015 |
£30,000.00 |
Co-I |
|
PACT: Development of an intervention to support lung cancer patients and their clinicians |
Velindre Cancer Care |
2013 - 2017 |
£201,614.00 |
CI |
|
Designer: development and part validation of clinical screening tool for late effects of radiotherapy (prostate) |
Tenovus |
2013 - 2014 |
£29,264.00 |
Co-I |
|
AFTER: Free text analysis of palliative care patient satisfaction questionnaires |
Tenovus |
2013 - 2014 |
£30,000.00 |
CI |
|
ROCS (Radiotherapy After Oesophageal Cancer Stenting) Study (ROCS) |
NIHR HTA |
2012 - 2018 |
£2,200,000.00 |
|
|
Canopy A study of the quality of care needs for patient with idiopathic pulmonary fibrosis and their carers, across disease trajectory |
Marie Curie |
2012 - 2014 |
£110,761.00 |
Co-I |
|
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 - 2014 |
£660,000.00 |
Co-I |
|
RECC Baseline exercise and cachexia study |
Tenovus |
2011 – 2012 |
£30,000.00 |
Co-I |
|
Qualfrag: Qualitative sub study to the Fragmatic clinical trial |
Velindre Charitable Funds |
2011 - 2013 |
£62,516.00 |
Co-CI |
|
Bolero: Open vs robotic surgery bladder |
CRUK |
2011 - 2012 |
£64,000.00 |
Co-I |
|
El Cid: early chest Xray for lung cancer |
NIHR NAEDI |
2011 - |
£400,000.00 |
Co-I |
|
Palliative Care Research Development Group |
WORD |
2010-2013 |
£74,143.00 |
Co-I |
|
FOCUS 3: A study to determine the feasibility of molecular selection of therapy using KRAS, BRAF and topo-1 in patients with metastatic or locally advanced colorectal cancer |
CRUK |
2010-2012 |
£525,000.00 |
Co-I |
|
Marie Curie Palliative Care Research Centre Infrastructure Funding |
Marie Curie |
2010 – 2014 |
£750,000.00 |
Grantholder |
|
Palliative Care Cross-Wales Research Roadshow |
Velindre |
2010 - 2011 |
£20,000.00 |
Co-I |
|
QUALZICE: A QUALitative exploration of the experiences of the participants from the ZICE clinical trial (metastatic breast cancer) receiving intravenous or oral bisphosphonates |
Velindre Charitable Funds |
2008-2010 |
£36,000.00 |
CI |
|
BRITECOG : Validating breathlessness measures for use in patients with lung cancer: a cognitive interview study |
Velindre Charitable Grants |
2008-2010 |
£8,062.00 |
Co-I |
|
NMES: Is neuromuscular electrical stimulation an acceptable and feasible supportive therapy for patients with non-small cell lung cancer receiving palliative chemotherapy? |
NCRI SUPAC |
2008-2010 |
£110,796.00 |
Co-I |
|
Career total |
|
|
£19,977,425.07 |
|
Supervision
Palliative and Supportive Care
Treatment decision support for life 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
