Academic Publications

2023
2022
2021
2020
2019
2018
Pre 2017

2023

Fraser, LK, Bedendo, A, O’Neill, M, Taylor, J, Hackett, J, Horridge, K, et al. ‘YourTube’ the role of different diets in gastrostomy-fed children: Baseline findings from a prospective cohort study. Dev Med Child Neurol. 2023; 00: 1–10 https://onlinelibrary.wiley.com/doi/10.1111/dmcn.15799
Papworth, A., Bedendo, A., Taylor, J., Beresford, B., Mukherjee, S., Fraser, L., Ziegler, L. A new scale assessing the stressors and rewards of children's hospice work. BMC Palliative Care 22:136 (2023) https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-023-01246-w
Bedendo A, Papworth A, Taylor J, Beresford B, Mukherjee S, Fraser L, Ziegler L Staff well-being in UK children's hospices: a national survey. BMJ Support Palliative Care. Aug 29 (2023)
https://spcare.bmj.com/content/early/2023/08/29/spcare-2022-004056
Mukherjee, S., Richardson, N. & Beresford, B. Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks. BMC Pediatr 23, 366 (2023). https://doi.org/10.1186/s12887-023-04151
Papworth A, Hackett J, Beresford B, Murtagh F, Weatherly H, Hinde S, Bedendo A, Walker G, Noyes J, Oddie S, Vasudevan C, Feltbower RG, Phillips B, Hain R, Subramanian G, Haynes A, Fraser LK. Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study. BMC Palliative Care Aug 16;22(1):117 (2023)
https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-023-01238-w
Bedendo A, Hinde S, Beresford B, Papworth A, Phillips B, Vasudevan C, McLorie E, Walker G, Peat G, Weatherly H, Feltbower R, Hewitt C, Haynes A, Murtagh F, Noyes J, Hackett J, Hain R, Oddie S, Subramanian G, Fraser L Consultant-led UK paediatric palliative care services: professional configuration, services, funding. BMJ Support Palliative Care (2023)
https://spcare.bmj.com/content/early/2023/08/08/spcare-2023-004172.long
McLorie EV, Hackett J, Fraser LK. Understanding parents' experiences of care for children with medical complexity in England: a qualitative study. BMJ Paediatrics Aug;7(1) (2023) https://bmjpaedsopen.bmj.com/content/7/1/e002057
McLorie EV, Fraser L, Hackett J Provision of care for children with medical complexity in tertiary hospitals in England: qualitative interviews with health professionals. BMJ Paediatrics Jul;7(1) (2023) https://bmjpaedsopen.bmj.com/content/7/1/e001932
Papworth A, Ziegler L, Beresford B, Mukherjee S, Fraser L, Fisher V, O'Neill M, Golder S, Bedendo A, Taylor J. Psychological well-being of hospice staff: systematic review. BMJ Support Palliative Care April 25 (2023) https://spcare.bmj.com/content/early/2023/04/24/spcare-2022-004012.long
Fields D, Fraser LK, Taylor J, Hackett J. What does 'good' palliative care look like for children and young people? A qualitative study of parents' experiences and perspectives. Palliative Medicine Mar;37(3):355-371 (2023) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10021114/
Barrett L, Fraser L, Noyes J, Taylor J, Hackett J. Understanding parent experiences of end-of-life care for children: A systematic review and qualitative evidence synthesis. Palliative Medicine Feb;37(2):178-202 (2023) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9896294/

2022

Mayland, C.R., Sunderland, K.A., Cooper, M., Taylor, P., Powell, P.A., Zeigler, L., Cox, V., Gilman, C., Turner, N., Flemming, K., Fraser, L.K. Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools. Sept 2022 Palliative Medicine
Fraser, L.K., Gibson-Smith, D., Jarvis, J., Papworth, A., Neffjes, V., Hills, M., Doran, T., Taylor, J. Polypharmacy in children and young people with life-limiting conditions from 2000-2015: a repeated cross-sectional study in England. Sept 2022. Journal of Pain and Symptom Management
Coombes, L., Braybrook, D., Roach, A., Scott, A., Harðardóttir, D., Bristowe, K., Ellis-Smith, C., Bluebond-Langner, M., Fraser, L.K., Downing, J.,Farsides, B., Murtagh, F.E.M., Harding, R. Achieving child-centred care for children and young people with life-limiting and life-threatening conditions -a qualitative interview study. Aug 2022. European Journal of Pediatrics.
Higginson, I.J., Hocaoglu, M.B., Fraser, L.K., Maddocks, M., Sleeman, K.E., Oluyase, A.O., Chambers, R.L., Preston, N., Dunleavy, L., Bradshaw, A., Bajwah,S., Murtagh, F.E.M., Walshe, C. Symptom control and survival for people severely ill with COVID: A multicentre cohort study (CovPall -Symptom). June 2022. Journal of Pain and Symptom Management.
Barker, M., Beresford, B., Fraser, L.K. Incidence of Anxiety and Depression in Children and Young People with Life-Limiting Conditions. 7 June 2022. Pediatric Research - ACCEPTED FOR PUBLICATION
Jarvis, S., Richardson, G., Flemming, K., Fraser, L.K. Numbers, characteristics, and medical complexity of children with life-limiting conditions reaching age of transition to adult care in England: a repeated cross-sectional study [version1; peer review: 2 approved]. April 2022. NIHR Open Research
Scott, H. M., Coombes, L., Braybrook, D., Roach, A., Haroardottir, D., Bristowe, K., Ellis-Smith, C., Higginson, I., Gao, W., Bluebond-Langner, M., Farsides, B., Murtagh, F. E. E., Fraser, L.K., Harding, R. COVID-19: impact on pediatric palliative care 25 February 2022. Journal of Pain and Symptom Management
Harwood, R., Yan, H., Talawila Da Camara, N., Smith, C., Ward, J., Tudur-Smith, C., Linney, M., Clark, M., Whittaker, E., Saatci, D., Davis, P. J., Luyt, K., Draper, E.S., Kenny, S.E., Fraser, L.K. & Viner, R.M.
Which children and young people are at higher risk of severe disease and death after hospitalisation with SARS-CoV-2 infection in children and young people: A systematic review and individual patient meta-analysis Feb 2022. eClinicalMedicine part of THE LANCET Discovery Science
Jarvis, S., Flemming, K., Richardson, G. & Fraser, L. Adult healthcare is associated with more emergency healthcare for young people with life-limiting conditions 25 Jan 2022. Pediatric Research
Hackett, J., Heavey, E. & Beresford, B. 'It was like an airbag, it cushioned the blow': A multi-site qualitative study of bereaved parents' experiences of using cooling facilities 20 Jan 2022. Palliative Medicine

2021

Ward, J., Harwood, R., Smith, C., Kenny, S. E., Clark, M., Davis, P. J., Draper, E., Hargreaves, D., Ladhani, S., Linney, M., Luyt, K., Turner, S., Whittaker, E., Fraser, L. K. & Viner, R. M. Risk factors for PICU admission and death amongst children and young people hospitalized with COVID-19 and PIMS-TS in England durng the first pandemic year 20 Dec 2021, Nature Medicine (E-pub ahead of print)
Sleeman, K., Cripps, R., Murtagh, F. E. M., Oluyase, A. O., Hocaoglu, M., Maddocks, M., Walshe, C., Preston, N., Dunleavy, L., Bradshaw, A., Bajwah, S., Higginson, I. & Fraser, L. K., Change in activity of palliative care services during Covid-19 pandemic: a multi-national survey (CovPall). 20 Dec 2021, Journal of Palliative Medicine (E-pub ahead of print)
Horridge, K., Tinkler, R., Harvey, C., DeKiewiet, G., Munro, S. & Fraser, L. K. MRICS categorisation and emergency hospital admissions for children with cerebral palsy: a longitudinal, population-based study Developmental Medicine and Child Neurology. 29 Nov 2021 (Accepted/In press)
Andy Bradshaw, Lesley Dunleavy, Ian Garner, Nancy Preston, Sabrina Bajwah, Rachel Cripps, Lorna K Fraser, Matthew Maddocks, Mevhibe Hocaoglu, Fliss EM Murtagh, Adejoke O Oluyase, Katherine E Sleeman, Irene J Higginson, Catherine Walshe, on behalf of the CovPall study team. Experiences of staff providing specialist palliative care during COVID-19 A multiple qualitative case study Royal Society of Medicine, 20 Nov 2021. (Accepted/In press)
Bayly, J., Bradshaw, A., Fettes, L., Omarjee, M., Talbot-Rice, H., Walshe, C., Sleeman, K., Bajwah, S., Dunleavy, L., Hocaoglu, M., Oluyase, A. O., Garner, I., Cripps, R., Preston, N., Fraser, L. K., Murtagh, F. E. M., Higginson, I. & Maddocks, M. Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data 15 Nov 2021, Palliative Medicine (Accepted/In press)
Smith, C., Odd, D., Harwood, R., Ward, J., Linney, M., Clark, M., Hargreaves, D., Ladhani, S., Draper, E., Davis, P. J., Kenny, S. E., Whittaker, E., Luyt, K., Viner, R. & Fraser, L. K. Deaths in Children and Young People in England following SARS-CoV-2 infection during the first pandemic year Nature Medicine 11 Nov 2021 (E-pub ahead of print)
Hinde, S., Weatherly, H., Walker, G. & Fraser, L. K. What does economic evaluation mean in the context of children at the end of their life? International Journal of Environmental Research and Public Health. 11 October 2021 - Click on link for PDF article:- What does economic evaluation mean in context of children at the end of their li (PDF , 330kb)
Bergstraesser, E., Thienprayoon, R., Brook, L., Fraser, L. K., Hynson, J., Rosenberg, A., Snaman, J., Weaver, M., Widger, K., Zernikow, B., Jones, C. & Schlogl, M. Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children. Journal of Pallative Medicine
Fraser, L.K. & Ziegler, L. Palliative care for teenagers and young adults - the need for more evidence. Palliative Medicine. 15 July 2021
Jarvis, S., Richardson, G., Flemming, K., Fraser, L.K. Estimation of age of transition from children's to adult healthcare for young people with long term conditions using linked routinely collected healthcare data. International Journal of Population Data Science. 10 August 2021
Fisher, V., Fraser, L.K. & Taylor, J. Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis. BMJ Support Palliative Care
Maddison, J., Taylor, J., O'Neil, M., Cade, J., Hewitt, C., Horridge, K., McCarter, A., Fraser, L.K. & Beresford, B. Outcomes for gastrostomy‐fed children and their parents: qualitative findings from the ‘Your Tube’ study. Developmental Medicine & Child Neurology
Jarvis, S.W., Roberts, D., Flemming, K., Richardson, G. & Fraser, L.K. - Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review. Pediatric Research
Fraser, L., Murtagh, F.E.M., Aldridge, J., Sheldon, T.A., Gilbody, S. & Hewitt, C.E. - The health of mothers of children with a life-limiting condition; a comparative cohort study. Archives of Disease in Childhood
Papworth, A., Fraser, L.K. & Taylor, J. - Development of a managed clinical network for children's palliative care - a qualitative evaluation. BMC Palliative Care
Hackett, J. & Beresford, B. - 'Cold Bedrooms' and other cooling facilities in UK children's hospices, how they are used and why they are offered: A mixed methods study. Palliative Medicine
Liossi, C., Greenfield, K., Schoth, D. E., Mott, C., Jassal, S., Fraser, L. K., Rajapakse, D., Howard, R., Johnson, M., Anderson, A-K. & Harrop, E. - A systematic review of measures of breakthrough pain and their psychometric properties (Journal of Pain and Symptom Management) 22 Apr 2021, Journal of pain and symptom management
Prohibit, protect, or adapt? The changing role of volunteers in palliative and hospice care services during the COVID-19 pandemic. A multinational survey (CovPall) - Catherine Walshe, Ian Garner, Lesley Dunleavy, Nancy Preston, Andy Bradshaw, Rachel Cripps, Sabrina Bajwah, Katherine Sleeman, Mevhibe Hocaoglu, Matthew Maddocks, Fliss EM Murtagh, Adejoke Oloyase, Lorna K Fraser, Irene J Higginson -International Journal of Health Policy and Management
Equal but inequitable: response of specialist palliative care and hospice services to people from ethnic minority groups with COVID-19- an observational study (CovPall) - Bajwah, S., Koffman, J., Hussain, J., Bradshaw, A., Hocaoglu, M., Fraser, L.K., Oluyase, A.O., Allwin, C., Dunleavy, L., Preston, N., Cripps, R., Maddocks, M., Sleeman, K.E., Higginson, I.J., Walshe, C., Murtagh, F.E.M. - BMJ Supportive & Palliative Care
Understanding and addressing challenges for Advance Care Planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services - Bradshaw, A, Dunleavy, L., Walshe, C., Preston, N., Cripps, R., Hocaoglu, M.B., Bajwah, S., Maddocks, M., Oluyase, A.O., Sleeman, K.E., Higginson, I.J., Fraser, L.K., Murtagh, F.E.M 1 - Palliative Medicine
Necessity is the mother of intervention': Specialist palliative care services innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall) - Dunleavy, L., Preston, N., Bajwah, S., Bradshaw, A., Cripps, R., Fraser, L. K., Maddocks, M., Hocaoglu, M., Murtagh, F. E. M., Oluyase, A. O., Sleeman, K., Higginson, I. J. & Walshe, C., 16 Feb 2021 Palliative Medicine
The challenges of caring for people dying from COVID-19: a multinational, observational study (CovPall) - Oluyase, A.O., Hocaoglu, M.B., Cripps, R.L., Maddocks, M., Walshe, C., Fraser, L.K., Preston, N., Dunleavy, L., Bradshaw, A., Murtagh, F.E.M., Bahwah, S., Sleeman, K.E. & Higginson, I.J. - Journal of Pain and Symptom Management
Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality - Coombes, L., Bristowe, K., Ellis-Smith, C., Aworinde, J., Fraser, L.K., , Downing, J., Bluebond-Langner, M., Chambers, L., Murtagh, F.E.M. & Harding, R. Quality of Life Research.

2020

Gibson-Smith, D., Jarvis, S.W. & Fraser, L.K. - Place of death of children and young adults with a life-limiting condition in England: a retrospective cohort study. Archives of Disease in Childhood
Taylor, J., Murphy, S., Chambers, L. & Aldridge, J. - Consulting with young people: informing guidelines for children's palliative care. Archives of Disease in Childhood
Fraser, L.K., Gibson-Smith, D., Jarvis, S., Norman, P. & Parslow, R.C. - Estimating the current and future prevalence of Life-Limiting Conditions in Children in England. Palliative Medicine
Harris, N., Noyes, J., Fraser, L., Lapwood, S., Harrop, E., Blackburn, M., Price, J., Chambers, L., Bluebond-Langner, M., (Joint Research Group for Together for Short Lives/Association of Paediatric Pallative Medicine) - Managing and sharing research data in children's palliative care: Risks, benefits and imponderables. Journal of Advanced Nursing
Lorna Katharine Fraser, Fliss E M Murtagh, Trevor Sheldon, Simon Gilbody, Catherine Hewitt. - Health of mothers of children with a life-limiting condition: a protocol for comparative cohort study using the Clinical Practice Research Datalink. BMJ Open
Taylor, J., Booth, A., Beresford, B., Philips, B., Wright, K. & Fraser, L. - Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review. Palliative Medicine
Fraser, L.K., Bluebond-Langner, M. & Ling, J. - Advances and Challenges in European Paediatric Palliative Care. Medical Sciences
Greenfield, K., Holley, S., Schoth, D.E., Bayliss, J., Anderson, A-K., Jassal, S., Rajapakse, D., Fraser, L.K., Mott, C., Johnson, M., Wong, I., Howard, R., Harrop, E. & Liossi, C. - A protocol for a systematic review and meta-analysis to identify measures of breakthrough pain and evaluate their psychometric properties. BMJ Open
Jarvis, S., Parslow, R.C., Hewitt, C., Mitchell, S., & Fraser, L., - GPs’ role in caring for children and young people with life-limiting conditions: a retrospective cohort study. British Journal of General Practice

2019

Ainscough, T., Fraser, L., Taylor, J., Beresford, B. & Booth, A. - The effectiveness of bereavement support interventions for parents of infants and children who die: A systematic review. BMJ Supportive and Palliative Care
Taylor, J., O'Neil, M., Maddison, J., Richardson, G., Hewitt, C., Horridge, K., Cade, J., McCarter, A., Beresford, B. & Fraser, L.K. - ‘YourTube’ The Role of Different Diets in Children who are Gastrostomy Fed; protocol for a mixed methods exploratory sequential study. BMJ Open
Barker, M.M., Bland, J.M. & Fraser, L.K. - Anxiety and Depression Prevalence in Children, Adolescents, and Young Adults With Life-Limiting Conditions—Reply. JAMA Pediatrics
Barker, M.M., Beresford, B.A., Bland, J.M., Fraser, L.K. - Prevalence and Incidence of Anxiety and Depression Among Children, Adolescents, and Young Adults With Life-Limiting Conditions. JAMA pediatrics. 2019 Jul 8;173(9)
Robinson, T., Brown, H., Norman, P., Fraser, L.k., Barr, B. & Bambra, C.L. - The impact of New Labour's English health inequalities strategy on geographical inequalities in infant mortality: a time trend analysis. Journal of Epidemiology & Community Health

2018

Jarvis, S.W., Livingston, J., Childs, A-M. & Fraser, L. - The impact of neurological disorders on hospital admissions for children and young people: a routine health data study International Journal of Population Data Science
Beresford, B., Clarke, S., & Maddison, J. - Therapy interventions for children with neurodisabilities: a qualitative scoping study Health Technology Assessment. Download a summary of the report for parents here: THINC Project (PDF , 634kb)
Booth, A.M., Maddison, J.R., Wright, K., Fraser, L.K., & Beresford, B.A. - Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents, and all those who care for them: a systematic scoping review. Palliative Medicine. 2018 Nov 8;32(10):1552-1566.
Oostendorp, L., Rajapakse, D., Kelly, P., Crocker, J., Dinsdale, A., Fraser, L.K. & Bluebond-Langner, M. - Documentation of breakthrough pain in narrative clinical records of children with life-limiting conditions: Feasibility of a retrospective review. Journal of Child Health Care
Jarvis, S.W., Livingston, J., Childs, A-M. & Fraser, L.K. - Outpatient appointment non‐attendance and unplanned health care for children and young people with neurological conditions: a retrospective cohort study. Developmental Medicine and Child Neurology
Fraser, L.K. - An urgent call for collaboration: the future of research in paediatric pallative care. European Journal of Pallative Care 25(2):56-58
Scantlebury, A., Mcdaid, C., Dawson, V., Elphick, H., Fairhurst, C., Hewitt, C., Parker, A., Spiers, G., Thomas, M., Wright, K. and Beresford, B. - Non-pharmacological interventions for non-respiratory sleep disturbance in children with neurodisabilities: a systematic review. Dev Med Child Neurol. doi:10.1111/dmcn.13972

Pre 2017

Taylor, J & Alridge, J - 'Exploring the rewards and challenges of paediatric palliative care work - a qualitative study of a mult-disciplinary children's hospice care team' BMC Palliative Care
Jarvis, SW & Fraser, LK - 'Comparing routine inpatient data and death records as a means of identifying children and young people with life limiting conditions' Palliative Medicine.
Fraser, LK & Parslow, R - 'Children with Life-Limiting Conditions in Paediatric Intensive Care Units: a national cohort, data linkage study' Archives of Disease in Childhood, pp. 1-9. DOI: 10.1136/ archdischild- 2017- 312638
Fraser, LK, Fleming, S & Parslow, R - 'Changing Place of Death in Children who died after discharge from Paediatric Intensive Care Units: a national, data linkage study' Palliative Medicine, pp. 1-10. DOI: 10.1177/0269216317709711
Aldridge J, Shimmon K, Miller M, Fraser LK, Wright, B "I can't tell my child they are dying". Helping Parents Have Conversations With Their Child. Archives of Disease in Childhood 2017 March 13
Fraser, LK & Norman, P 2016, 'The use of routine data in health research; an example from palliative care'. in SAGE Research Methods Cases.
Jarvis, SW, Parslow, RC, Carragher, P, Beresford, BA & Fraser, LK 2016, 'How many Children and Young People with Life Limiting Conditions are clinically unstable?: a National data linkage study'
Bogosian, A, Van Vliet, LM, Craig, G, Fraser, LK & Turner-Cobb, JM 2016, 'Minding the gap and moving forward in children's long-term conditions: a vital role for health psychology' vol 21, no. 3., 10.1111/bjhp.12193
Woodcock, IR, Fraser, LK, Norman, P, Pysden, K, Manning, S & Childs, A-M 2016, 'The prevalence of neuromuscular disease in the paediatric population in Yorkshire, UK: variation by ethnicity and deprivation status' vol 58, no. 8, pp. 877–883., 10.1111/dmcn.13096
Fraser LK, Lidstone V, Miller M, Aldridge J, Norman P, McKinney PA et al. Patterns of diagnoses among children and young adults with life-limiting conditions: A secondary analysis of a national dataset. Palliative Medicine. 2014 Apr 3.
Norman P, Fraser L. Prevalence of life-limiting conditions in children and young people in England: Time trends by area type. Health & place. 2014 Mar;26:171-9.
Fraser LK, van Laar M, Miller M, Aldridge J, McKinney PA, Parslow RC, Feltbower RG. Does referral to specialist paediatric palliative care services reduce hospital admissions in oncology patients at the end of life? British Journal of Cancer. 2013, 108(6),1273-79.
Fraser LK, Miller M, Aldridge J, Norman P, Hain R, McKinney PA, Parslow RC. Rising National Prevalence of Life Limiting Conditions in Children in England. Pediatrics 2012 129 (4) e923-e929
Fraser LK, Aldridge J, Childs AM, Miller M, McKinney PA, Parslow RC. "A cohort study of children and young people with progressive neuromuscular disorders; clinical and demographic profiles and changing patterns of referral for palliative care" Palliative Medicine. 2012 26;924-929
Fraser LK, Manning S, Miller M, McCullough R, Aldridge J Childs AM.Hospice Provision and Usage amongst young people with Neuromuscular Disease in the United Kingdom. European Journal of Paediatric Neurology 2011. 15(4):326-330 Jul 2011
Fraser LK, Miller M, McKinney PA, Parslow RC, Feltbower RG. Referral to a Specialist Paediatric Palliative Care Service in Oncology Patients in Yorkshire, UK. Paediatric Blood and Cancer 15 Dec 2010
Fraser LK, Fleming T, Miller M, Draper ES, McKinney PA, Parslow RC. Palliative Care Discharge from Paediatric Intensive Care Units in Great Britain. Palliative Medicine 24(6):608-615 Sep 2010
Fraser LK, Miller M, Draper ES, McKinney PA, Parslow RC. Place of Death and Palliative Care following discharge from Paediatric Intensive Care Units. Archives of Disease in Childhood 06 Jul 2010
Taylor LK, Miller M, Joffe T, Parslow RC, Aldridge J, Bailey CC, McKinney PA. Palliative care in Yorkshire, UK 1987-2008: survival and mortality in a hospice. Archives of Disease in Childhood 95(2):89-93 Feb 2010