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Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 229 days ago

CovPall - Survey of Palliative Care Services

Dataset

Documentation

Description:
During the outbreak of the COVID-19 pandemic, the World Health Organization rapidly issued guidance on maintaining essential health services during the pandemic, highlighting prevention, maternity, emergency care and chronic diseases, without mention of palliative care. Palliative care is multidisciplinary, holistic and person-centered treatment, care and support for people with life-limiting illness, and those important to them, such as family and friends. In the COVID-19 pandemic, palliative care has an important role in ensuring symptom control, training of nonspecialists in symptom management and care of dying patients, compassionate communication, psychosocial support for patients, carers and health care professionals, advance care planning and bereavement support, supporting patients wherever they want to be cared for. The CovPall (Rapid evaluation of the COVID-19 pandemic response in palliative and end of life care: national delivery, workforce and symptom management) study aimed to understand the response of and challenges faced by palliative care services during the COVID-19 pandemic and to identify factors associated with challenges experienced, in particular shortages of equipment, medicines and staff. It is the first multinational survey on the response of and challenges to palliative care services during the pandemic. The study included a cross-sectional online survey of palliative care services and hospices, and a multicentre cohort study of COVID-19 patients seen and treated by palliative care services. It is made up of two work packages. Work package 1 aimed to identify how palliative care and hospice services changed, how their staff, volunteers and others adapted their practices, and their challenges and innovations. Work package 2 determined which symptoms and problems patients had, how they changed over time, and which treatments/therapies were used and seemed to work best. This dataset covers WP1, the online survey of palliative care services, the first main component of CovPall. The survey opened on April 23rd, 2020 and closed on July 31st, 2020. 458 valid responses were collected: 277 UK, 85 rest of Europe, 95 rest of the world, 1 missing country. Overall, 261 services provided inpatient palliative care units, 261 home care teams, 217 hospital palliative care teams, and 119 home nursing teams. Services were usually publicly, or charity managed, and many services offered care in more than one setting. More information regarding data collected during the survey, as well as a copy of the questionnaire used for data collection, can be found at the link below: https://www.jpsmjournal.com/cms/10.1016/j.jpainsymman.2021.01.138/attachment/23618c62-a710-4cad-8a27-326f24ed6f1a/mmc3.pdf

Coverage

Spatial:
WorldWide
Typical Age Range:
0-150
Pathway:
The dataset is limited to specialist palliative care services, both publicly and charitably funded.

Provenance

Origin

Purposes:
Study
Sources:
Electronic survey
Collection Situations:
Services

Temporal

Accrual Periodicity:
Static
Distribution Release Date:
19 April 2021
Start Date:
23 April 2020
End Date:
31 July 2020
Time Lag:
Not applicable

Accessibility

Access

Access Service:
Applications for use of the survey data can be made for up to 10 years, and will be considered on a case by case basis on receipt of a methodological sound proposal to achieve aims in line with the original protocol. The study protocol is available on request. All requests for data access should be addressed to the Chief Investigator via the details on the CovPall website (https://www.kcl.ac.uk/research/covpall and palliativecare@kcl.ac.uk) and will be reviewed by the Study Steering Group.
Access Request Cost:
N/A
Delivery Lead Time:
Not applicable
Jurisdictions:
GB-ENG
Data Controller:
Irene J Higginson, (Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King"s College London) as the Chief Investigator of CovPall study is the Intellectual Property owner of the CovPall Survey.
Data Processor:
Not Applicable

Usage

Data Use Limitations:
  • General research use
  • Geographical restrictions
  • No linkage
Data Use Requirements:
  • Not for profit use
  • Institution-specific restrictions
  • Ethics approval required
Resource Creators:
Cicely Saunders Institute - King's College London

Format and Standards

Vocabulary Encoding Schemes:
ICD10CM
Languages:
en
Formats:
  • Csv
  • SPSS
  • Redcap

Observations

Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
We have invited all specialist palliative care services (adult and children"s) through partner organisations across the UK and the world to respond to the survey.
458
Response to Covid-19, innovations introduced, busyness, patients seen
23 April 2020