Amara Nwosu

MBCHB FRCP PhD


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Identification of Digital Health Priorities for Palliative Care Research: Modified Delphi Study

Technology in Palliative Care (TIP) study published in JMIR Aging

I am delighted to annouce that the Technology in Palliative Care (TIP) study is complete has been published in the ‘Journal of Internet Medical Research (JMIR) Aging’ .

The aim of this modfied Delphi study was to identify research priority areas for digital health in palliative care.

The priorities identified in this study represent a wide range of important emerging areas in the fields of digital health, personalized medicine, and data science. Human-centered design and robust governance systems should be considered in future research. It is important that the risks of using these technologies in palliative care are properly addressed to ensure that these tools are used meaningfully, wisely, and safely and do not cause unintentional harm.

We hope the findings of this work will help researchers, healthcare professionals and policymakers explore how innovations in emerging technologies can improve palliative care.

The full paper can be accessed below:

Nwosu AC, McGlinchey T, Sanders J, Stanley S, Palfrey J, Lubbers P, Chapman L, Finucane A, Mason S. Identification of Digital Health Priorities for Palliative Care Research: Modified Delphi Study. JMIR Aging 2022;5(1):e32075. doi: 10.2196/32075.


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Development of ‘use-cases’ for a digital palliative care bereavement service [new study for 2022]

We are delighted that our research funding application to develop ‘use cases’ for digital palliative care bereavement service was successful. The project will be funded by Liverpool Clinical Commissioning Group and is part of the Research Capability Funding stream.

We will aim to conduct the study in 2022. The lay summary is below.

Please contact me on Twitter @amaranwosu for further information:

Lay Summary

Grief, bereavement and the need for bereavement services

Grief is a natural process, in which many people will cope with help from their friends and family. However, many people will need professional help.1-3 People who are bereaved are more likely to have problems with their mental health and wellbeing. 4-6 These problems can affect many people in society.7-9 Therefore, good bereavement care is important to ensure that people get the support they need when they are grieving.3

Challenges facing bereavement services

There are many challenges to delivering bereavement care, these include:

  • There is not enough resources to meet current demand.10 
  • Some people may not easily receive support because they live in an area where there are few services.11 
  • Some people struggle to find time to receive support during working hours due to their other commitments.
  • The COVID-19 pandemic has increased demand and has made it difficult for people to access services.3 2 
  • Palliative care need is increasing and is expected to increase by 42% in 2040, this will also increase need for bereavement support.12

Can digital bereavement services help more people receive support?

It is possible technology can be used to help more people to access bereavement support.13 However, it is important we carefully design these systems so they work properly.

In this project we will create the ‘blueprint’ needed to design a new digital bereavement serviceIn this study we will interview staff and caregivers about bereavement support, to understand what a digital bereavement service should look like. We will use this information to design the ‘blueprint’ which is needed to design a new digital bereavement support service. In computer science this ‘blueprint’ is called a ‘use-case’.14 15 We will partner with computer developers to design ‘use-cases’ which we can then use to build a digital bereavement service. After this study we will do more research to test whether the new digital bereavement service is helping more people to get the support they need.

References

1. Aoun SM, Breen LJ, Howting DA, et al. Who needs bereavement support? A population based survey of bereavement risk and support need. PloS one 2015;10(3):e0121101.

2. Pattison NA, White C, Lone NI. Bereavement in critical care: A narrative review and practice exploration of current provision of support services and future challenges. Journal of the Intensive Care Society 2020:1751143720928898.

3. Harrop E, Selman L, Farnell D, et al. 6 End of life and bereavement experiences during the COVID-19 pandemic: Interim results from a national survey of bereaved people. BMJ Supportive & Palliative Care 2021;11:A3-A3.

4. Guldin M-B, Vedsted P, Zachariae R, et al. Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: a longitudinal cohort study. Supportive care in cancer 2012;20(8):1679-85.

5. Wittouck C, Van Autreve S, De Jaegere E, et al. The prevention and treatment of complicated grief: A meta-analysis. Clinical psychology review 2011;31(1):69-78.

6. Stroebe M, Schut H, Stroebe W. Health outcomes of bereavement. The Lancet 2007;370(9603):1960-73.

7. Birrell J, Corden A, Macduff C, et al. Socio-economic costs of bereavement in Scotland: main study report. 2013

8. van den Berg GJ, Lundborg P, Vikström J. The economics of grief. The Economic Journal 2017;127(604):1794-832.

9. Genevro J, Miller T. The emotional and economic costs of bereavement in health care settings. Psychologica Belgica 2010;50(1-2)

10. Harrop EJ, Goss S, Farnell DJ, et al. Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic. medRxiv 2021

11. Wakefield D, Fleming E, Howorth K, et al. Inequalities in awareness and availability of bereavement services in north-east England. BMJ Supportive & Palliative Care 2020

12. Etkind SN, Bone AE, Gomes B, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Medicine 2017;15(1):102. doi: 10.1186/s12916-017-0860-2

13. Morris SE, Ryan AK. Bereavement via Zoom during COVID-19. Journal of psychosocial oncology 2021:1-4.

14. Cockburn A. Writing Effective Use Cases. https://books.google.co.uk/books?id=TUZsAQAAQBAJ: Addison-Wesley 2001.15. Clausen M, Apel R, Dorchain M, et al. Use Case methodology: A progress report. Energy Informatics 2018;1(1):273-83.

15. Clausen M, Apel R, Dorchain M, et al. Use Case methodology: A progress report. Energy Informatics 2018;1(1):273-83.


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Digital health priorities for palliative care research

We have deposited our paper “Technology in Palliative Care (TIP): the identification of digital priorities for palliative care research using a modified Delphi method” on the medRxiv preprint server (ahead for formal peer reviewed publication)

The aim of this study was to identify research priority areas for digital health in palliative care.

This is first study to identify digital health research priorities for palliative care and provides guidance for researchers, funders and policy makers to consider areas for future research and development. 

We identified 16 research priority areas for technology in palliative care, representing 8 themes of big data, mobile devices, telehealth, virtual reality, artificial intelligence, the smart home, biotechnology and digital legacy.  Our findings will support researchers, clinicians and policy makers to improve the evidence base in these areas, through further research and development. This work is timely and important, as global palliative care need is increasing but there is a lack of evidence of how digital health can be meaningfully used to support care needs of people with advanced illness.  Therefore, it is important that the risks of using these technologies in palliative care are properly addressed to ensure that these tools are used meaningfully, wisely and safely and do not cause unintentional harm

The pre-print is freely available from the following link. Please note, that this has not been peer reviewed so should not yet be used to guide clinical practice.

Nwosu AC, McGlinchey T, Sanders J, Stanley S, Palfrey J, Lubbers P, Chapman L, Finucane A, Mason S. Technology in Palliative Care (TIP): the identification of digital priorities for palliative care research using a modified Delphi method. Medrxiv 2021. https://doi.org/10.1101/2021.06.24.21259307

health technology design, vector illustration eps10 graphic


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How can technology be used to support communication in palliative care beyond the COVID19 pandemic?

Can we use technology better to support communication in palliative care?

  • We are looking for palliative care healthcare professionals to share their experience of using technology to communicate during the COVID19 pandemic.
  • The study is funded by Marie Curie is led by Sarah Stanley (research nurse at Marie Curie Liverpool Hospice). The study has ethical approval and is sponsored by Lancaster University.
  • We are seeking the opinions of Palliative Care healthcare professionals who have worked in the UK during the COVID19 pandemic. 
  • This a short electronic survey (takes roughly 10 -15 minutes to complete) can be completed from a smartphone, laptop or desktop computer.
  • We will identify how technology have been used in palliative care, been used to support communication during the COVID19 pandemic. 
  • We will use the outcomes of this work to inform policy, to identify how technologies can be used to improve palliative access beyond the COVID19 pandemic.

  All the participant information, consent form and survey can be assessed from the link below.

Click here to access the survey

health technology design, vector illustration eps10 graphic


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Investigation and management of iron deficiency anaemia in a specialist palliative care setting and the role of intravenous iron: a descriptive analysis of hospice data

Anaemia is common in hospice populations and associated with significant symptom burden. Guidelines recommend investigating for and treating iron deficiency (ID), but there is little evidence of this practice in palliative care populations. Our paper (published in AMRC Open Research) describes the results of investigations for and subsequent management of ID in Marie Curie Hospice Liverpool.

Our data demonstrates that iron deficiency is common and can be safely treated with intravenous iron replacement, within current guidelines, in a hospice setting. Further research should define the optimum use of this approach in palliative care patients.

More information can be found here:

Steele T, Bonwick H, Nwosu AC and Chapman L. Investigation and management of iron deficiency anaemia in a specialist palliative care setting and the role of intravenous iron: a descriptive analysis of hospice data [version 1; peer review: awaiting peer review]. AMRC Open Res 2021, 3:6 (https://doi.org/10.12688/amrcopenres.12963.1)

Medical photo created by rawpixel.com – www.freepik.com


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Evaluating the use of video communication technology in a hospital specialist palliative care team during the COVID-19 pandemic

Healthcare professionals’ use of video communication technology has increased during the novel coronavirus disease (COVID-19) pandemic, due to infection control restrictions. Currently there is little published data about the experiences of specialist palliative care teams who are using technology to communicate during the COVID-19 pandemic. The aim of this evaluation (published in AMRC Open Research) was to describe the experience of a UK based hospital specialist palliative care team, who were using video communication technology to support care during the COVID-19 pandemic.

Video communication technology has the potential to improve specialist palliative care delivery; however, it is essential that healthcare organisations address the existing barriers to using this technology, to ensure that these systems work meaningfully to improve palliative care for those who are most vulnerable beyond the COVID-19 pandemic.

More information can be found here:

Crosby B, Hanchanale S, Stanley S and Nwosu AC. Evaluating the use of video communication technology in a hospital specialist palliative care team during the COVID-19 pandemic [version 1; peer review: awaiting peer review]. AMRC Open Res 2021, 3:5 (https://doi.org/10.12688/amrcopenres.12969.1)

Abstract vector created by vectorjuice – www.freepik.com


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Implantable cardioverter defibrillator (ICD) deactivation in palliative care – a case involving best interest decisions for someone lacking capacity at the end of life

The use of implantable cardioverter-defibrillators (ICD) has increased due to benefits of preventing death from cardiac arrhythmia. However, the increasing use of ICDs has created new challenges for how to proactively manage deactivation of these devices in people who are dying, especially for those who lack capacity to make decisions about their care. The aim of this case report is to discuss the challenges of planning for deactivation of an ICD for a patient who lacked capacity at the end of life.


In this case report (published on AMRC Open Research) we describe the challenges of managing ICD deactivation in a dying patient with fluctuating capacity who had previously expressed a wish for the ICD to remain active. Although it is preferable to use advance care planning (ACP), to provide care in-line with patient-identified care preferences, we demonstrate how a best interest process can be used to make decisions about ICD deactivation at the end of life.

More information can be found in our case report here:

https://amrcopenresearch.org/articles/3-4


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The use of advance consent to enable hydration assessments, for research, at the end of life

As the need for palliative care increases, it is essential for research opportunities to be offered to patients with palliative care needs to ensure patients can receive evidence-based treatments and services to improve care. Although it is recognised that palliative, and in particular end of life, research can be both methodically and ethically challenging it is important to note that palliative patients are keen to be involved with research.
Over the past three years, patients in Marie Curie Hospice Liverpool have been recruited to a research study evaluating hydration, where advance consent methodology is used to facilitate participation at the end of life. In this study, participants provided ‘advanced consent’ to receive research assessments, in anticipation of the deterioration of their health and loss of the ability to provide consent to ongoing research participation. During this process, recruiting participants will nominate a consultee (who can be any family member, friend or healthcare professional), who is contacted by the researcher prior to completion of research assessments. Participants will generally choose a caregiver or friend to act as a personal consultee; however, there may be some instances where a healthcare professional is chosen.
In this, we share our experiences using advanced consent methodology and a healthcare professional acting as a consultee, to facilitate research assessments in a patient who was lacking capacity at the end of life.

More information can be found in our case report here:

Stanley S and Nwosu AC. Case Report: The use of advanced consent methodology and healthcare professional consultee to facilitate research participation in dying patients [version 1; peer review: awaiting peer review]. AMRC Open Res 2021, 3:3 (https://doi.org/10.12688/amrcopenres.12961.1)


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Palliative Medicine Podcasts

Podcasts offer a fantastic way to learn about palliative medicine on the go. I’m delighted to be the Technology Editor of ‘Palliative Medicine’, the world’s most highly rated palliative care journal. Listen to our amazing podcast series , where talented authors share their important findings in their own words. We have many exciting and interesting podcasts coming up with over 60 podcasts in our back catalogue!

The podcasts are available from most places which curate podcasts. This includes Apple podcasts, Google podcasts, Stitcher, BeyondPod, Pocketcasts and more.

Podcasts can be recorded for FREE by authors of papers published in Palliative Medicine, or those who have had articles accepted for piblication. If you wish to record a podcast please contact me here:

Palliative Medicine podcast link (webpage)

Palliative Medicine Apple Podcasts


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Improving Palliative Care Through Digital Health Technology

I’m delighted to write a geust blog for BMJ Supportive and Palliative Care about how palliative care care be improved through use of digital health technology. I also reflect on how this presents an opportunity to learn from the COVID19 pandemic. Specifically, I reference an article by Clabburn and colleagues, which describes the novel use of ‘Ivy Street’, a Virtual Learning Environment to support palliative and end of life care education. 

Read my guest blog here: