COVID-19 Guidelines & Resources
One of the main aims of the BETTER-B project consortium is to improve the quality of life and well-being of people affected by chronic breathlessness. In light of the ongoing COVID-19 epidemic, we want to ensure that relevant resources, guidelines and evidence reach those who need it most.
We have therefore decided to use our international platform to collate various national guidelines, resources and research developed in response to COVID-19 to support health professionals, patients and families during this time.
Some of the resources collated below are aimed at health care professionals, while others are aimed at patients and the general public.
Please be aware that these resources were not conceived as part of the BETTER-B project, but represent work from our research institutions and national and international Palliative Care Associations.
RESOURCES
Cicely Saunders Institute (CSI)/ European Lung Foundation – Fact-sheets for patients hospitalised for COVID-19, and their family and friends
The fact-sheet explains what will happen once a person goes into hospital, how their symptoms will be managed and what will happen if they get put on a ventilator. The fact-sheet also explains the issues around contact and communication. Available in English, Chinese, German, Greek, Japanese, Portuguese, Ukrainian, Urdu
Cicely Saunders Institute (CSI) - Managing breathlessness at home resource
We have created a leaflet written for people with breathlessness and their families. It may be especially helpful for those with chronic heart and lung conditions, whose clinical teams are being diverted to the COVID effort. The resource contains advice which is based on the best available evidence, but adapted to the COVID context. Available in English HERE.
European Respiratory Society COVID-19 resource Centre
A frequently updated assortment of resources regarding COVID-19, collated and developed by the ERS. Some resources are aimed at patients and the general public, others at health care professionals and policy makers. Available in English and multiple other languages (some translations are still underway).
Schweizerische Gesellschaft für Palliative Medizin, Pflege und Begleitung - Wissenswertes zum Coronavirus
A wide array of individualized recommendations regarding the treatment of COVID-19, with resources specifically tailored to professions (physicians, GPs, nurses working in hospitals or hospices, spiritual care professionals). Published by the Swiss Association for Palliative Care. Available in German.
RESEARCH
Adaptation and multicentre validation of a patient-centred outcome scale for people severely ill with COVID (IPOS-COV).
Hocaoglu MB, Murtagh FEM, Walshe C, Chambers RL, Maddocks M, Sleeman KE, Oluyase AO, Dunleavy L, Bradshaw A, Bajwah S, Fraser LK, Preston N, Higginson IJ and the CovPall Study Team.
Adaptation and testing of the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale–IPOS-COV for severe COVID using psychometric approach.
Charitably funded hospices and the challenges associated with the COVID-19 pandemic: a mixed-methods study (CovPall).
Garner IW, Walshe C, Dunleavy L, Bradshaw A, Preston N, Fraser LK, Murtagh FE, Oluyase AO, Sleeman K, Hocaoglu M, Bajwah S, Chambers RL, Maddocks M and Higginson IJ.
A study to understand the challenges faced by charitably funded hospices during the COVID-19 pandemic.
Symptom management in people dying with COVID-19: multinational observational study.
Oluyase AO, Bajwah S, Sleeman KE, Walshe C, Preston N, Hocaoglu M, Bradshaw A, Chambers R, Murtagh FE, Dunleavy L, Maddocks M, Fraser LK, Higginson IJ
An observational study to describe multinational prescribing practices by palliative care services for symptom management in patients dying with COVID-19 and the perceived effectiveness of medicines.
Symptom control and survival for people severely ill with COVID: a multicentre cohort study (CovPall-Symptom).
Higginson IJ, Hocaoglu MB, Fraser LK, Maddocks M, Sleeman KE, Oluyase AO, Chambers RL, Preston N, Dunleavy R, Bradshaw A, Bajwah S, Murtagh FEM, Walshe C and The CovPall Study Team.
A paper to determine changes in symptoms among people severely ill or dying with COVID supported by palliative care, and associations with treatments and survival.
Experiences of staff providing specialist palliative care during COVID-19: a multiple qualitative case study.
Bradshaw A, Dunleavy L, Garner I, Preston N, Bajwah S, Cripps RL, Fraser LK, Maddocks M, Hocaoglu M, Murtagh FE, Oluyase AO, Sleeman C, Higginson IJ, Walshe C and the CovPall Study Team.
A paper to explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic.
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.
Bayly J, Bradshaw A, Fettes L, Omarjee M, Talbot-Rice H, Walshe C, Sleeman KE, Bajwah S, Dunleavy L, Hocaoglu M, Oluyase AO, Garner I, Cripps RL, Preston N, Fraser LK, Murtagh FEM, Maddocks M, and Higginson IJ.
A paper to understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision.
Change in activity of palliative care services during the Covid-19 pandemic: A multinational survey (CovPall).
Sleeman KE, Cripps RL, Murtagh FEM, Oluyase AO, Hocauglu M, Maddocks M, Walshe C, Preston N, Dunleavy L, Bradshaw A, Bajwah S, Higginson IJ and Fraser LK.
To report to identify factors associated with palliative care services being busier during Covid-19.
Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable—an observational study.
Bajwah S, Koffman J, Hussain J, Bradshaw A, Hocaoglu MB, Fraser LK, Oluyase A, Allwin C, Dunleavy L, Preston N, Cripps RL, Maddocks M, Sleeman C, Higginson IJ, Walshe C, Murtagh FEM and the CovPall Study Team.
To study to develop insights into response of palliative care services caring for people from ethnic minority groups during COVID-19.
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 RL, Hocaoglu M, Bajwah S, Maddocks M, Oluyase AO, Sleeman C, Higginson IJ, Fraser LK, Murtagh FEM and the CovPall Study Team.
A paper to describe the challenges that UK specialist palliative care services experienced regarding advance care planning during COVID-19 and changes made to support timely conversations.
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).
Dunleavy L, Preston N, Bajwah S, Bradshaw A, Cripps R, Fraser LK, Maddocks M, Hocaoglu M, Murtagh FEM, Oluyase AO, Sleeman C, Higginson IJ, Walshe C and the CovPall Study Team.
To map and understand specialist palliative care services innovations and practice changes in response to COVID-19.
Prohibit, Protect, or Adapt? The changing role of volunteers in palliative and hospice care services during the COVID-19 pandemic. A multinational survey (Covpall).
Walshe C, Garner I, Dunleavy L, Preston N, Bradshaw A, Cripps RL, Bajwah S, Sleeman KE, Hocaoglu M, Maddocks M, Murtagh FE, Oluyase AO, Fraser LK and Higginson IJ.
An article looking at the changing role of volunteers in palliative and hospice care services during the Covid-19 pandemic.
The challenges of caring for people dying from COVID-19: a multinational, observational study (CovPall)
Oluyase AO, Hocauglu M, Cripps RL, Maddocks M, Walshe C, Fraser LK, Preston N, Dunleavy L, Bradshaw A, Murtagh FEM, Bajwah S, Sleeman C, Higginson IJ and the CovPall Study Team.
A paper to understand the response of and challenges faced by palliative care services during the COVID-19 pandemic, and identify associated factors.
Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy
Costantini M, Sleeman KE, Peruselli C, Higginson IJ
Our first paper on the experience of COVID-19 in Italy, examining the preparedness for and impact of the pandemic to inform the response of other countries.
Managing the supportive care needs of those affected by COVID-19
Bajwah S, Wilcock A, Towers R, Costantini M, Bausewein C, Simon ST, Bendstrup E, Prentice W, Johnson MJ, Currow DC, Kreuter M, Wells AU, Birring SS, Edmonds P, Higginson IJ.
A guide for respiratory healthcare professionals working with Covid-19 patients on how to manage their supportive care needs.
Characteristics, symptom management and outcomes of 101 patients with COVID-19 referred for hospital palliative care
Lovell N, Maddocks M, Etkind SN, Taylor K, Carey I, Vora V, Marsh L, Higginson IJ, Prentice W, Edmonds P, Sleeman KE
A case series describing symptom burden, management, response to treatment and outcomes for COVID-19 patients referred to palliative care
The role and response of palliative care and hospice services in epidemics and pandemics: a rapid review to inform practice during the COVID-19 pandemic
Etkind SN, Bone AE, Lovell N, Cripps RL, Harding R, Higginson IJ, Sleeman KE.
An evidence synthesis on the role and response of hospice and palliative care in epi/pandemics, to inform response to COVID-19.
GUIDELINES
UK Association for Palliative Medicine (APM)- COVID-19 and Palliative, End of Life and Bereavement Care in Secondary Care
COVID-19 symptom management guidelines developed by the APM, aimed at health care professionals. Available in English.
Empfehlungen der DGP zu COVID-19 / Recommendations for treatment of patients with COVID-19 from the palliative care perspective
A concise overview of treatment options available for patients suffering from COVID-19, aimed at interdisciplinary health care professionals. Available in German and English.
More information from the DGP regarding COVID-19 (in German)