Improving palliative care for people affected by the COVID-19 pandemic by sharing learning – the national and international response
Thank you for contributing to the Survey of Hospices and Palliative care Teams. The survey is now complete.
We are now inviting palliative care or hospice rehabilitation service leads to take part in the CovPall- Rehab study to explore how palliative care and hospice rehabilitation services have changed because of the COVID-19 pandemic.
CovPall is a new project that is trying to understand more about how palliative care services and hospices are responding to the COVID-19 pandemic, the problems that services and patients and families/those affected by COVID-19 are facing, and how to best respond.
Why does this research matter?
COVID-19 is a new disease. It has become a pandemic. Although many people do recover, even after very serious illness, unfortunately some people become very ill, some people have very severe symptoms and sadly some people die.
To support people in many settings palliative care services and hospices have changed rapidly how they work. They are supporting existing patients who don’t have COVID-19, and also those with COVID-19 who have severe symptoms or are dying. In addition, the symptoms that people experience, and the best treatments for these symptoms, are not well understood.
Therefore, there is an urgent need to understand how palliative and end of life care services have responded to COVID-19. Learning from each other will speed up the responses and help future plans.
What do we want to find out?
We want to find out how palliative care and hospice services have changed how their staff, volunteers and others have adapted what they do, and their challenges and innovations. We have referred to this as Work Package 1 (WP1).
We also want to know what symptoms and problems patients have, how they change over time, what treatments / therapies are used and what seems to work best. We have referred to this as Work Package 2 (WP2).
What will we do?
In WP1, we are asking the clinical lead or a delegate from hospices & palliative care services (adult & children, all settings, voluntary hospices, inpatient, home care, hospital palliative care teams) to answer to an on-line survey. The survey asks about their practices and how these have changes, and their challenges and innovations. The survey should take less than 30 minutes to complete.
After completing WP1, services who have indicated interest will be invited to take part in WP2. In WP2, services will collect pseudonymised information from the clinical records of around 10 patients with COVID-19 receiving palliative care input retrospectively, or where possible prospectively, at 4 time points, at first assessment in palliative care, in around two subsequent time points and at death or discharge (D or Di). Information to be collected will include the patient’s sociodemographic data, co-morbidities, symptoms, current medications given and others. It will take approximately five minutes to collect this information per patient.
We are going to conduct WP1 and WP2 quickly in the next 4 weeks. We will then analyse the data and present the results. We aim to repeat WP1 and WP2 in around 8 weeks time.
How you can get involved
We would very much like clinical leads of services to contact us to take part in the on-line survey (WP1) and also indicate if they would like to be involved in WP2. We have King’s College London Research Ethics Committee approval for WP1 (LRS-19/20-18541) and the HRA and Health and Care Research Wales (HCRW) approval for WP2 (REC reference: 20/NW/0259).
If you have received the link to a questionnaire from one of our partner organizations, then please do complete it.
If you have not received the link to the questionnaire and would like to get involved or just want more information, please contact: Mev Hocaoglu, Rachel Cripps or Jo Bayly by email marking 'CovPall' or 'CovPall Rehab' in the subject line:
Read our post about The role of palliative care and hospices in the COVID-19 pandemic
on the EAPC blog here: https://eapcnet.wordpress.com/2020/04/27/whats-the-role-of-palliative-care-and-hospices-in-the-covid-19-pandemic-evidence-from-a-systematic-review/
New Papers in pre-print:
- The challenges of caring for people dying from COVID-19: a multinational, observational study of palliative and hospice services (CovPall) (https://www.medrxiv.org/content/10.1101/2020.10.30.20221465v1)
- 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 (https://www.medrxiv.org/content/10.1101/2020.10.28.20200725v1)
- ‘’Necessity is the mother of invention'': Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multi-national survey (CovPall) (https://www.medrxiv.org/content/10.1101/2020.10.29.20215996v1)
CovPall has been registered on ISRCTN. The registration can be viewed here: http://www.isrctn.com/ISRCTN16561225
The research is led by: Professor Irene J Higginson, Professor Fliss Murtagh, Professor Nancy Preston, Dr Katherine Sleeman, Dr Matthew Maddocks, Dr Sabrina Bajwah, Professor Lorna Fraser, Dr Mevhibe Hocaoglu, Dr Adejoke Oluyase, Professor Catherine Walshe. Many others have been involved in planning the study and testing the questionnaire.
The survey of hospices and palliative care teams has approval from King’s College London Research Ethics committee (LRS-19/20-18541)