EAPC Atlas of Palliative Care in Europe 2019

METHODS OF THE PROJECT
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Step 1: Systematic review
We conducted a systematic review to identify the most commonly
used national-level indicators on palliative care development
in cross-national studies. Articles included fulfilled the following
inclusion criteria: mention (1) palliative care development,
AND/OR; (2) palliative medicine development, AND/OR; (3) hospice
and PC nursing development, AND; (4) use of indicators that
allow cross-national comparison of at least two countries, AND;
(5) report on national-level development or status, AND; and (6)
published between January 1, 2008 and July 31, 2017. Peer-reviewed
literature was searched using PubMed and CINAHL, and an
additional search was conducted on Google Scholar and Google
to assess grey literature. The following Mesh terms were used in
the search: [(Palliative Care OR Hospice Care), (Development OR
Provision OR Mapping), and (National OR International)].
Articles and reports found were assessed by title and abstract.
National-level indicators were compiled and clustered by dimensions
of the WHO Public Health Strategy, plus two additional categories:
research and vitality (professional activity). Within clusters,
each indicator was labelled with frequency of appearance and in
the end 38 indicators were selected. The six most frequently used
indicators were the number of palliative care services per population,
the existence of a national palliative care plan, strategy, or
programme, the existence of palliative medicine specialisation,
the availability and allocation of funds for palliative care, the proportion
of medical schools including PC in undergraduate curricula,
and the consumption of opioids.
While there were several indicators assessing development at the
level of general health care provision, there was a clear lack of indicators
assessing integration of palliative care into health systems.
We refer to indicators on the development of paediatric palliative
care, the provision of palliative care at long-term care facilities, at
the primary care level, in malignant and non-communicable diseases
and on the integration with volunteers (Arias-Casais, 2018).
Step 2: Consensus process with the
committee of international experts
A group of international experts on palliative care development
were invited to participate in a two-round modified RAND/UCLA
Delphi consensus process to select the best indicators resulting
from the review. Expert selection criteria included: a) experience
with national-level indicators for palliative care, b) experience in
palliative care development evaluation projects, and c) participation
in palliative care networks or advocacy activities for at least
four years. Forty-four experts were invited to participate, of which
thirty assessed 45 indicators by relevance, measurability and feasibility
(1-9). These three scores were used to calculate a Global
Score (1-9). Indicators scoring >7 proceeded to the second round,
in which experts assessed 34/45 indicators. Median, Confidence
Interval (CI), Content Validity Index (I-CVI), and Disagreement
Index were calculated. Indicators scoring a 95% CI ≥7 and an I-CVI
≥0.30 were selected.
Twenty-four experts (see the International Committee of experts
on indicators) representing five continents and several organisations
completed the study. Twenty-five indicators showed a high
content validity and level of agreement. They were thus selected
as 25 of the best indicators to assess national-level palliative
care development. Policy indicators included –among others- the
existence of designated staff in the national Ministry of Health, the
inclusion of palliative care services in the basic health package and
in the primary care list of services. Education indicators focused
on processes of official specialisation for physicians, inclusion of
teaching at the undergraduate level and existence of palliative care
professors. Use of medicines indicators consisted of opioid consumption,
availability and prescription requirements whereas services
indicators included mainly number and types of services for
adults and children. Additional indicators for professional activity
were identified (Arias-Casais, 2019). These indicators were used
to create the 2019 EAPC Atlas of Palliative Care survey, which was
sent to key informants in each country.
Cover of Brief Manual
on Health Indicators
to Assess Global
Palliative Care
Development.
EAPC Atlas of Palliative Care in Europe
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