Content uploaded by Kristin Alm-Kruse
Author content
All content in this area was uploaded by Kristin Alm-Kruse on Jan 10, 2024
Content may be subject to copyright.
Clinical paper
How do survivors after out-of-hospital cardiac
arrest perceive their health compared to the norm
population? A nationwide registry study from
Norway
Kristin Alm-Kruse
a,b,*
, Gunhild M. Gjerset
c,d
, Ingvild B.M. Tjelmeland
b,d,e
,
Cecilie B. Isern
b,d,f
, Jo Kramer-Johansen
b,d,e
, Andrew M. Garratt
g,h
Abstract
Introduction: Self-perceived health status data is usually collected using patient-reported outcome measures. Information from the patients’ per-
spective is one of the important components in planning person-centred care. The study aimed to compare EQ-5D-5L in survivors after out-of-
hospital cardiac arrest (OHCA) with data for Norwegian population controls. Secondary aim included comparing characteristics of respondents
and non-respondents from the OHCA population.
Methods: In this cross-sectional survey, 714 OHCA survivors received an electronic EQ-5D-5L questionnaire 3–6 months following OHCA. EQ-5D-
5L assesses for five dimensions of health (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) with five-point descriptive
scales and overall health on a visual analogue scale from 0 (worst) to 100 (best) (EQ VAS). Results are used to calculate the EQ index ranging
from 0.59 (worst) to 1 (best). Patient responses were matched for age and sex with existing data from controls, collected through a postal survey
(response rate 26%), and compared with Chi-square tests or t-tests as appropriate.
Results: Of 784 OHCA survivors, 714 received the EQ-5D-5L, and 445 (62%) responded. Respondents had higher rates of shockable first rhythm
and better cerebral performance category scores than the non-respondents. OHCA survivors reported poorer health compared to controls as
assessed by EQ-5D-5L dimensions, the EQ index (0.76 ± 0.24 vs 0.82 ± 0.18), and EQ VAS (69 ± 21 vs 79 ± 17), except for the pain/discomfort
dimension.
Conclusions: Norwegian OHCA survivors reported poorer health than the general population as assessed by the EQ-5D-5L. PROMs use in this
population can be used to inform follow-up and health care delivery.
Keywords: Cardiac arrest, Out-of-hospital cardiac arrest, Patient reported outcome, Health, Cardiac arrest registries, PROMs
Introduction
Out-of-hospital cardiac arrest (OHCA) has a high mortality rate, and
the survival rate is a common short-term outcome measure.
1
Paral-
lel to a slight increase in survival and a shift towards patient-centred
healthcare,
2
the 2015 version of the Utstein Resuscitation Registry
Templates for OHCA
3
, the current resuscitation guidelines
4,5
and
Core Outcome Set for Cardiac Arrest (COSCA)
6
recommends
assessment of health and quality of life in survivors. Patient-
reported outcome measures (PROMs) are largely used for this pur-
pose and assess health from the perspective of OHCA survivors.
Following a literature review and consensus process to propose a
core outcome set for cardiac arrest, it was concluded that there is
considerable variation in PROMs used to assess health in survivors
of OHCA and that none are specific to this population.
7
It follows that
generic PROMs, such as EQ-5D-5L, have had the greatest applica-
tion in this population.
3
In spite of the Utstein recommendations for
data collection by OHCA registries,
3
PROMs data are rarely rou-
tinely collected.
8
A few registry-based studies have compared
https://doi.org/10.1016/j.resplu.2023.100549
Received 16 October 2023; Received in revised form 22 December 2023; Accepted 27 December 2023
2666-5204/Ó2024 The Author(s). Published by Elsevier B.V. This is an open access article under the CC BY license (http://creativecommons.org/
licenses/by/4.0/).
* Corresponding author.
E-mail address: kellings@ous-hf.no (K. Alm-Kruse).
RESUSCITATION PLUS17 (2024) 100549
Available online at www.sciencedirect.com
Resuscitation Plus
journal homepage: www.elsevier.com/locate/resuscitation-plus
PROMs scores for OHCA survivors and a control population, but with
conflicting results.
9–11
Australian OHCA survivors were reported to
have favourable health compared to a matched population index.
9
In contrast, two separate studies from Sweden both reported poorer
results across several EQ-5D-domains.
10,11
Norwegian data col-
lected as part of a prospective clinical trial compare well with the
results from Sweden.
12
The Australian study is the only to present
data on an unselected population of OHCA survivors from a cardiac
arrest registry. Registry data can provide a unique insight into the
self-perceived health of an unselected national population of OHCA
survivors. Comparison to a control population is important for the
interpretability of the results and particularly in the absence of data
pre-cardiac arrest. More and reliable data on health outcomes for
OHCA survivors is necessary to inform healthcare personnel, and
to tailor guidelines for rehabilitation and follow-up.
This study describes the health of the national register population
of Norwegian survivors of OHCA and compares their responses with
age- and sex-matched controls from the Norwegian general popula-
tion (controls). The secondary aim was to compare patient character-
istics for OHCA respondents and non-respondents.
Methods
Design, setting and participants
The study included the first two years of PROMs data from the Nor-
wegian Cardiac Arrest Registry (NorCAR), 2020–2021. Established
in 2002, NorCAR is a national, person-identifiable resuscitation reg-
istry.
13
We included OHCA survivors who were Norwegian citizens with a
valid personal identification number, and 18 years or older at the time
of cardiac arrest. NorCAR sends the PROM questionnaire to patients
that received treatment (chest compressions or defibrillation) started
or continued by ambulance personnel, or patients that have circula-
tion at arrival of the ambulance after successful defibrillation by an
automated external defibrillator (ROSC by AED).
OHCA survivors were categorised as non-respondents if they did
not return the PROM questionnaire. Survivors with more than one
OHCA event received one questionnaire per year following the first
registered event.
Procedure and data collection
Survivors with digital access received an electronic invite and secure
link to the PROMs through Helsenorge.no, a national platform for
communication between healthcare services and patients. A postal
version with reply-paid return envelope was sent to those without dig-
ital access. Non-respondents received a digital or postal reminder
after two weeks.
NorCAR began PROMs data collection in 2021 when the sur-
vivors from 2020 were contacted, receiving the questionnaire 3–
12 months after cardiac arrest. Questionnaires were then sent quar-
terly, 3–6 months after cardiac arrest. Questionnaires are sent irre-
spective of neurological status at discharge from hospital or any
level of assisted living.
The Norwegian population norms for EQ-5D-5L (controls)
Norwegian population norms for EQ-5D-5L, EQ VAS and EQ index,
for the adult general population aged 18 years and older, were pub-
lished in 2021.
14
To achieve a random group invite, the National
Registry of the Norwegian Tax Administration was used for selection
based on the estimated sample size per age and sex group. In total,
3200 (26%) responded to the postal survey distributed in 2019.
14
Outcome measures
The EuroQol EQ-5D-5L is a widely tested and applied PROM
15,16
that is recommended in the COSCA statement,
6
but evidence for
measurement properties is lacking in this population.
7
The instru-
ment assesses five health dimensions: mobility, self-care, usual
activities, pain/discomfort, and anxiety/depression.
17
Respondents
rate each dimension on a five-point scale of no problem, slight prob-
lems, moderate problems, severe problems, and unable-to-do/
extreme problems. The Norwegian version followed EuroQol transla-
tion procedures.
18
The five responses to the health dimensions con-
tribute to a health profile with a 5-digit code (e.g., 12234) reflecting
the response categories. The health profile is scored to give a single
EQ index using a scoring algorithm from value sets obtained from
general population samples. Based on current recommendations
for Norway, the UK value set was used
14
which gives an EQ index
score that ranges from 0.59 to 1, where 1 is the best possible
health state. In addition to the five dimensions, self-rated health is
assessed using a vertical visual analogue scale (EQ VAS), with end-
points labelled “Best imaginable health state” (100) and “Worst imag-
inable health state” (0).
17
The EQ-5D-5L has evidence for
acceptable measurement properties including reliability and validity,
in a range of patient and illness-free populations, also in Norway.
14–
16,19
Statistical analysis
The data were expressed as means ± standard deviation (SD) or
median with interquartile range (IQR) and counts with percentages.
Reporting follows recommendations based on national applications
of the EQ-5D,
20,21
and we compared groups using Chi-Square tests
for the EQ-5D-5L dimensions and independent samples t-tests for
the index and EQ VAS scores. The significance level was set at p-
value < 0.05. No power calculation was performed because the study
was based on available registry data. The controls were randomly
matched, in a 1:1 ratio, for age and sex to the OHCA cases.
Respondents and non-respondents to the EQ-5D-5L were com-
pared according to age, sex, cardiac arrest location, bystander
resuscitation, ambulance response intervals, shockable first rhythm
and neurological state at discharge using the Cerebral Performance
Category (CPC – dichotomised to 1–2 good neurological outcome
and 3–4 adverse neurological outcome). EQ-5D-5L dimensions,
EQ index and EQ VAS scores were compared across seven age
groups (18–29, 30–39, 40–49, 50–59, 60–69, 70–79, and 80 and
older) and sex.
Case-control matching was undertaken in Stata version 15 (Sta-
taCorp). Statistical analysis was performed using IBM SPSS Statis-
tics v28.0 (IBM Corporation).
Ethics
NorCAR data collection is mandated by law without the need for con-
sent.
22
The local data protection officer found the use of collected
data to be within the scope of registry regulations and in adherence
to the General Data Protection Regulations (case file 11/21096). The
steering committee recommended data disclosure for the registry.
Patient and public involvement
NorCAR steering committee includes a user representative from the
patient organisation National Association of Heart and Lung Disease
2RESUSCITATION PLUS 17 (2024) 100549
(LHL), who provides a channel for communication to the patient pop-
ulation and the boards of health trusts through a network of fellow
user representatives. The representative contributed to the develop-
ment of this research project.
Results
Of the 784 OHCA survivors in Norway for the two years from 1 Jan-
uary 2020 to 31 December 2021, 70 did not receive a questionnaire
due to late registration, leaving 714 eligible OHCA survivors, of
whom 445 (62%) completed the EQ-5D-5L (Fig. 1). Of the respon-
dents, 89% received the form electronically compared to 71% of
the non-respondents (p < 0.001).
Respondents had higher rates of shockable first rhythm and bet-
ter CPC scores at hospital discharge than the non-respondents.
There were no other significant differences (Table 1).
Outcome measurements
Except for pain/discomfort, OHCA survivors reported poorer health
compared to controls across the EQ-5D-5L dimensions, and these
differences were significant (p < 0.001) (Table 2 and Fig. 2). The
mean EQ-5D-5L index scores for OHCA survivors and controls were
0.76 (SD ± 0.24) and 0.82 (SD ± 0.18), respectively; mean difference
0.054 (95% CI 0.03 – 0.08, p < 0.001). The mean EQ VAS scores for
the survivors and controls were 69 (SD ± 21) and 79 (SD ± 17),
respectively; mean difference of 10.6 (95% CI 8.1–13.2, p < 0.001)
(Table 2 and Fig. 3). There were no significant differences for any
EQ-5D-5L scores across age and sex subgroups compared between
OHCA survivors and controls. Detailed results are shown in the sup-
plementary figures.
Discussion
Our study is one of few nationwide studies to report PROMs for sur-
vivors following OHCA, that included controls to aid the interpretation
of results. Based on responses from 62% of eligible registry respon-
dents, OHCA survivors report poorer health compared to age and
sex-matched controls as assessed by four EQ-5D-5L dimensions,
EQ index, and EQ VAS scores. The dimension of pain/discomfort
was the exception, with OHCA survivors reporting fewer problems
than controls.
OHCA outcomes from research studies and registries have
mostly focused on survival and functional assessments, but there
is increasing interest in how patients themselves perceive outcomes,
including aspects of health and quality of life.
6
The inclusion of the
patient perspective is an important addition to outcomes measure-
ment for OHCA because it includes mental, physical, and social
aspects of health. PROMs are relevant to clinical and health services
research, quality indicators and economic evaluation. In a clinical
setting they assess the longer-term impact of OHCA and can inform
the selection of care pathways.
Findings from a recent study show that most Norwegian OHCA
survivors have considerable pre-cardiac arrest morbidity
23
and,
compared to general population controls, most likely would have
had poorer baseline EQ-5D-5L scores had they been available. Con-
trols facilitate comparisons between different diseases and condi-
tions and increase our understanding of PROM scores, including
the use of retrospective measurement.
24
However, understanding
of OHCA outcomes is hampered by a lack of pre-OHCA PROMs.
Future studies comparing, for instance, myocardial infarction
patients with and without OHCA could provide valuable additional
information on the self-perceived health of patients with cardiovascu-
lar comorbidities.
The EQ-5D-5L control data used in this study were collected with
the aim of serving as general population reference data to facilitate
Norwegian studies in the interpretation of EQ-5D-5L dimension,
EQ index, and EQ VAS scores.
14
Surveys used to collect such data
usually have low response rates, potentially introducing selection
bias. Where necessary, they are adjusted accordingly including
adjustment for age, sex, and education level.
14
The differences in
recruitment procedures and timing of the data collection for the
OHCA survivors and the controls could increase the risk of bias,
including any COVID-19 related differences in health.
Comparison of PROMs between studies might be affected by
several factors and add complexity to the interpretation of the differ-
ences. Data collection at different time points following OHCA may
Fig. 1 – Flowchart of study selection for patients sharing
information about health after surviving an out-of-
hospital cardiac arrest (OHCA) in Norway 2020–2021.
CPR – Cardiopulmonary resuscitation. EMS – Emergency
medical services. PIN – Personal identification number.
The unit in the diagram is unique patients.
RESUSCITATION PLUS 17 (2024) 100549 3
limit the comparability because patients may adapt to OHCA-related
limitations over time.
25
Different modes of data collection, including
digital, telephone or postal, might also affect responses. Comparable
studies have used different versions of EQ-5D, with either three (EQ-
5D-3L) or five response levels (EQ-5D-5L), making interpretation
more difficult.
16
The new version with five response levels was cho-
sen for NorCAR based on evidence of improved measurement prop-
erties for EQ-5D-5L.
14,16
However, cardiac arrest-specific PROMs
are being developed that have the potential to capture a range of
patient’s lived experiences and the complex heterogenous nature
of recovery and survivorship after cardiac arrest.
26
Following neces-
sary testing, these should be considered for implementation into
quality registers and wider application.
A Swedish study examining health problems among ICD-
implanted CA survivors found that CA survivors reported significantly
more problems with mobility and usual activities compared to a gen-
eral population matched for sex and age.
11
In addition, our OHCA
survivors reported considerably more problems with self-care and
anxiety/depression compared to the general population. The Swed-
ish study also found that CA survivors reported significantly higher
EQ index scores, and fewer problems with pain/discomfort than
the general population. ICD-implanted CA survivors are a selected
group and are usually invited to regular hospital follow-ups and could
therefore, report better health on these measurements.
11,27
Compared to controls, fewer of our survivors’ reported problems
on the EQ-5D-5L pain/discomfort dimension. It is possible that
through contact with health services, OHCA survivors experience
better pain management compared to age and sex matched general
population controls. This finding is comparable to those from a Swed-
ish register study which found that OHCA survivors reported more
problems on all EQ-5D-3L dimensions except pain/discomfort com-
pared to general population controls.
10
In a Norwegian long-term follow-up after OHCA, health status
5 years after the event was comparable to age- and sex-grouped
mean values from the general population, except for lower scores
for general health assessed by SF-36. For the EQ-5D dimensions
of mobility and self-care, the OHCA survivors reported poorer health
compared to the general population.
12
We found statistically significant differences in EQ-5D-5L index,
and EQ VAS scores compared to the controls, but clinical relevance,
including minimal important differences (MID), should also be
addressed. The mean difference for the index exceeds several sug-
gested estimates for the MID across populations which range from
0.027 to 0.094.
28–30
MIDs for the EQ VAS are less reported,
31,32
but the mean difference in this study exceeds several of these esti-
mates of 0.5 to 12.0.
33
Such estimates further aid the interpretation,
but application is hindered by variation in terminology and methodol-
ogy.
34
High response rates are necessary but not sufficient for external
validity. More importantly, there should be no important differences
between non-respondents and respondents to the survey. We found
significant differences between respondents and non-respondents
for proportion with shockable first rhythm and CPC score at dis-
charge. This could signify that fewer responses were obtained from
survivors with poorer neurologic outcomes. However, the number
of patients discharged with CPC 3 or 4 is low in both groups and only
comprises around 5% of the discharged patients. CPC is a blunt neu-
rological outcome measure and may underestimate the level of cog-
nitive impairment hindering self-completion of the questionnaire
form. We have no information about who completed the question-
naires, but the included information following the invitation to com-
plete the form, stated that it should be done by the survivors, not
proxies. Missing responses complicates the interpretation of the
results. The response rate of 62% is similar to that for the Swedish
Cardiac Arrest Registry.
35
Higher response rates were reported
for the Victoria Ambulance Registry in Australia, where telephone
interviews were used as a routine follow-up 12 months after the car-
diac arrest event.
36
NorCAR uses electronic data collection for EQ-5D-5L with paper
forms available if necessary. We choose electronic distribution as the
Table 1 – Characteristics of respondents and non-respondents among out-of-hospital cardiac arrest (OHCA)
survivors for the EQ-5D-5L form during 2020 and 2021.
Respondents
n = 445 (%)
Non-respondents
n = 269 (%)
Missing or
unknown n (%)
p-value
Age, years, median (25-, 75-percentiles) 62 (53, 71) 61 (47, 75) - 0.88
Males 351 (79) 198 (74) - 0.11
Location of cardiac arrest - 0.48
Home 224 (50) 128 (48)
Other 221 (50) 141 (52)
Bystander resuscitation*298 (90) 169 (85) 2 (0) 0.23
Ambulance response interval in minutes, median (IQR)
**
7 (6, 10) 7 (5, 11) 6 (1) 0.96
Shockable first rhythm 322 (72) 147 (55) <0.001
CPC at hospital discharge 118 (17)
***
<0.001
1–2 (good neurological outcome) 359 (97) 194 (87)
3–4 (adverse neurological outcome) 13 (4) 28 (13)
Discharged to home 230 (55) 122 (48) 41 (6) 0.1
Received electronic PROM questionnaire 396 (89) 190 (71) - <0.001
CPC – Cerebral performance category score scale.
P-values are from Chi-square tests for categorical data and Mann-Whitney U-test for non-parametrically distributed continuous data.
*
Bystander resuscitation and response interval are reported from the number of OHCA without ambulance-witnessed cardiac arrests, n = 603.
**
Ambulance response interval was calculated in minutes between the call answered in the Emergency Medical Communication Centre and when the
ambulance stopped at the patient’s location.
***
A total of 118patients were missing the CPC score, 73 were respondents, and 45 were non-respondents.
4RESUSCITATION PLUS 17 (2024) 100549
main mode for our registry to minimise cost and work burden on reg-
istry staff. PROM scores and measurement properties are generally
comparable for electronic and paper administration, but response
rates differ across modes of administration.
37,38
Parallel to a trend
in declining response rates to surveys in general,
39
several studies
have assessed the effect of the mode of data collection on response
rates.
37,40–42
Most report higher response rates with paper rather
than electronic surveys.
40–42
These studies were all performed
before the COVID-19 pandemic. In the general population, higher
response rates have been found for web-based PROMs compared
to traditional paper surveys.
37
This was also found in the current
study. The probability of responding to either method has been found
to vary according to respondent characteristics, and in the elderly,
paper-based administration gave the highest response rate.
37
The
elderly comprise a substantial component of the OHCA population,
but our results indicate that functional capacity, rather than age,
affects the response rate to the electronic survey. In addition, before
we commenced data collection, the COVID-19 pandemic had con-
tributed to Norwegian citizens becoming more electronically active,
including booking vaccinations, receipt of test results and arranging
doctor appointments. Further research is needed to assess for
response bias in this population, including the effect of cognitive
impairment on responses to both electronic and traditional modes
of data collection.
Strengths and limitations
The 62% response rate could have contributed to differences
between respondents and non-respondents, which in turn may have
led to an overestimation of health among OHCA survivors and an
underestimation of the differences between OHCA survivors and
controls. This possibility for bias could be moderated in the future
using methods to increase response rates. In addition, the response
rates for OHCA survivors are higher than the controls, adding a layer
of complexity to interpreting the results. The controls were not fully
representative of the Norwegian population, but matching the
respondents and the controls addresses this issue.
EQ-5D-5L is a brief PROM with low respondent burden that gives
a general assessment of the cardiac arrest patients’ perception of
health status, and further testing for measurement properties, includ-
ing validity, is recommended.
4
However, the instrument might not
Table 2 – EQ-5D-5L dimension, EQ VAS and EQ index scores from out-of-hospital cardiac arrest (OHCA) survivors
compared with the age- and sex-matched controls from the Norwegian general population.
Dimension/score Response category OHCA survivors
n = 445 (%)
Controls
n = 445 (%)
P-values
Mobility <0.001
No problems 306 (69) 362 (81)
Slight problems 71 (16) 52 (12)
Moderate problems 33 (8) 18 (4)
Severe problems 25 (6) 12 (3)
Unable to do 7 (2) 1 (0)
Self-care <0.001
No problems 378 (86) 413 (93)
Slight problems 42 (10) 26 (6)
Moderate problems 14 (3) 4 (1)
Severe problems 7 (2) 2 (0)
Unable to do 1 (0) 0 (0)
Usual activities <0.001
No problems 253 (57) 353 (79)
Slight problems 110 (25) 62 (14)
Moderate problems 41 (9) 16 (4)
Severe problems 32 (7) 12 (3)
Unable to do 6 (1) 2 (0)
Pain/discomfort <0.001
None 207 (47) 160 (36)
Slight 164 (37) 217 (49)
Moderate 44 (10) 52 (12)
Severe 20 (5) 12 (3)
Extreme 7 (2) 4 (1)
Anxiety/depression <0.001
None 236 (53) 320 (72)
Slight 130 (29) 98 (22)
Moderate 53 (12) 20 (5)
Severe 21 (5) 6 (1)
Extreme 2 (1) 1 (0)
EQ VAS Mean (SD) 69 (21) 79 (17)
Mean difference (CI) 10.6 (8.1–13.2) <0.001
EQ index Mean (SD) 0.76 (0.24) 0.82 (0.18)
Mean difference (CI) 0.054 (0.03–0.08) <0.001
The five dimensions are represented with numbers and percentages. There are three missing responses from OHCA survivors for the five dimensions and two for
EQ VAS. From the controls, there are 13 missing responses on EQ VAS. P-values are from Chi-square tests for categorical data. A 95% confidence interval (CI) is
given with p-values from an independent samples t-test for EQ VAS and EQ index.
RESUSCITATION PLUS 17 (2024) 100549 5
include all aspects of health that are important to OHCA survivors.
Still, this simple and accessible PROM has allowed us to collect
important information from cardiac arrest survivors nationwide, and
is recommended for cardiac arrest survivors.
6
In 2022, a protocol
was published, describing the development of a more sensitive
and specific PROM measure of cardiac arrest survivorship and
self-perceived health. An OHCA specific tool will contribute to future
registry research, and in developing follow-up plans for the patients.
26
A robust assessment of cardiac arrest survivors’ health will cap-
ture important health problems, identify vulnerable subgroups and
inform health care delivery. Health status can change over time fol-
lowing OHCA, and longitudinal studies that includes PROMs will
enhance understanding of the trajectory.
Conclusion
Compared to controls, OHCA survivors report poorer health as
assessed by four of the five EQ-5D-5L dimensions, EQ VAS scores,
and EQ index. The external validity of the PROMs data in NorCAR is
somewhat compromised by a higher percentage of non-favourable
OHCA event characteristics in non-respondents than in respondents.
However, the overall proportion of patients with these characteristics
is low, and we consider data to be adequate for the purpose of
reporting EQ-5D-5L scores for the overall OHCA population. PROMs
can give us information to better understand the experience of the
OHCA survivors, which could be useful in the planning of follow-up
care for these patients.
Fig. 2 – EQ-5D-5L response frequencies for survivors after out-of-hospital cardiac arrest (OHCA) and age- and sex-
matched controls from the Norwegian general population. Dimensions are a) mobility, b) self-care, c) usual
activities, d) pain/discomfort, and e) anxiety/depression. Panel f) is the EQ VAS for your health today. OHCA
survivors are represented with blue columns and the controls with white columns. EQ VAS scores are categorised
for purposes of presentation.
6RESUSCITATION PLUS 17 (2024) 100549
Role of funding source
Funding for this project was received from Laerdal Foundation (grant
ID: 2021-0054). The study and the paper were not influenced by this
funding.
CRediT authorship contribution statement
Kristin Alm-Kruse: Writing – review & editing, Writing – original
draft, Visualization, Project administration, Methodology, Investiga-
tion, Formal analysis, Data curation, Conceptualization. Gunhild
M. Gjerset: Writing – review & editing, Writing – original draft, Visu-
alization, Methodology, Formal analysis, Data curation, Conceptual-
ization. Ingvild B.M. Tjelmeland: Writing – review & editing, Writing
– original draft, Visualization, Project administration, Methodology,
Investigation, Formal analysis, Data curation, Conceptualization.
Cecilie B. Isern: Writing – review & editing, Writing – original draft,
Visualization, Methodology, Formal analysis. Jo Kramer-Johansen:
Writing – review & editing, Writing – original draft, Visualization,
Methodology, Funding acquisition, Formal analysis, Data curation,
Conceptualization. Andrew M. Garratt: Writing – review & editing,
Writing – original draft, Visualization, Methodology, Formal analysis,
Data curation, Conceptualization.
Fig. 3 – Box and whiskers diagram of the self-reported general health visual-analogue-scale (EQ VAS) and the
summary statistic EQ index from the EQ-5D-5L scores for survivors after out-of-hospital cardiac arrest (OHCA) and
age- and sex-matched controls from the Norwegian general population. EQ VAS ranges from 0 (worst possible) to
100 (best possible health). EQ index ranges from 0.59 to 1, where 1 is no problems and values below 0 are worse
than death. The OHCA survivors have blue, and the controls have white symbols. The box with horizontal line
represents 75-, 25- and 50- percentiles, respectively, and whiskers represent 5- and 95-percentiles. Outliers are
represented with circles and extreme outliers with stars.
RESUSCITATION PLUS 17 (2024) 100549 7
Declaration of competing interest
The authors declare that they have no known competing financial
interests or personal relationships that could have appeared to influ-
ence the work reported in this paper.
Appendix A. Supplementary material
Supplementary data to this article can be found online at https://doi.
org/10.1016/j.resplu.2023.100549.
Author details
a
Department of Research and Development, Division of Emergen-
cies and Critical Care, Oslo University Hospital, Oslo, Nor-
way
b
Faculty of Medicine, Institute of Clinical Medicine, University
of Oslo, Oslo, Norway
c
National Advisory Unit on Late Effects after
Cancer Treatment, Department of Oncology and Department of
Clinical Service, Division of Cancer Medicine, Oslo University
Hospital, Oslo, Norway
d
Division of Prehospital Services, Oslo
University Hospital, Oslo, Norway
e
Institute for Emergency Medicine,
University Hospital Schleswig-Holstein, Kiel, Germany
f
Oslo Sports
Trauma Research Centre, Department of Sports Medicine, Norwe-
gian School of Sport Sciences, Oslo, Norway
g
Division for Health
Services, Norwegian Institute of Public Health, Oslo, Norway
h
Health
Services Research Centre, Akershus University Hospital, Lørens-
kog, Norway
REFERENCES
1. Nolan JP, Berg RA, Andersen LW, et al. Cardiac Arrest and
Cardiopulmonary Resuscitation Outcome Reports: Update of the
Utstein Resuscitation Registry Template for In-Hospital Cardiac
Arrest: A Consensus Report From a Task Force of the International
Liaison Committee on Resuscitation (American Heart Association,
European Resuscitation Council, Australian and New Zealand
Council on Resuscitation, Heart and Stroke Foundation of Canada,
InterAmerican Heart Foundation, Resuscitation Council of Southern
Africa, Resuscitation Council of Asia). Circulation 2019;140:
e746–57. https://doi.org/10.1161/cir.0000000000000710.
2. Organization WH. Framework on integrated, people-centred health
services. WHO. Sixty-ninth world health assembly. Provisional
agenda item 16.1. https://apps.who.int/gb/ebwha/pdf_files/WHA69/
A69_39-en.pdf?ua=1&ua=1.
3. Perkins GD, Jacobs IG, Nadkarni VM, et al. Cardiac arrest and
cardiopulmonary resuscitation outcome reports: update of the Utstein
Resuscitation Registry Templates for Out-of-Hospital Cardiac Arrest:
a statement for healthcare professionals from a task force of the
International Liaison Committee on Resuscitation (American Heart
Association, European Resuscitation Council, Australian and New
Zealand Council on Resuscitation, Heart and Stroke Foundation of
Canada, InterAmerican Heart Foundation, Resuscitation Council of
Southern Africa, Resuscitation Council of Asia); and the American
Heart Association Emergency Cardiovascular Care Committee and
the Council on Cardiopulmonary, Critical Care, Perioperative and
Resuscitation. Circulation 2015;132:1286–300. https://doi.org/
10.1161/cir.0000000000000144.
4. Perkins GD, Graesner JT, Semeraro F, et al. European
Resuscitation Council Guidelines 2021: executive summary.
Resuscitation 2021;161:1–60. https://doi.org/10.1016/j.
resuscitation.2021.02.003.
5. Nolan JP, Sandroni C, Bottiger BW, et al. European Resuscitation
Council and European Society of Intensive Care Medicine Guidelines
2021: post-resuscitation care. Resuscitation 2021;161:220–69.
https://doi.org/10.1016/j.resuscitation.2021.02.012.
6. Haywood K, Whitehead L, Nadkarni VM, et al. COSCA (Core
Outcome Set for Cardiac Arrest) in adults: an advisory statement
from the International Liaison Committee on Resuscitation.
Resuscitation 2018;127:147–63. https://doi.org/10.1016/j.
resuscitation.2018.03.022.
7. Haywood KL, Pearson N, Morrison LJ, Castren M, Lilja G, Perkins
GD. Assessing health-related quality of life (HRQoL) in survivors of
out-of-hospital cardiac arrest: a systematic review of patient-reported
outcome measures. Resuscitation 2018;123:22–37. https://doi.org/
10.1016/j.resuscitation.2017.11.065.
8. Tjelmeland IBM, Masterson S, Herlitz J, et al. Description of
Emergency Medical Services, treatment of cardiac arrest patients
and cardiac arrest registries in Europe. Scand J Trauma Resusc
Emerg Med 2020;28(1):103. https://doi.org/10.1186/s13049-020-
00798-7.
9. Smith K, Andrew E, Lijovic M, Nehme Z, Bernard S. Quality of life
and functional outcomes 12 months after out-of-hospital cardiac
arrest. Circulation 2015;131:174–81. https://doi.org/
10.1161/circulationaha.114.011200.
10. Viktorisson A, Sunnerhagen KS, Po
¨der U, Herlitz J, Axelsson
AB.
Well-being among survivors of out-of-hospital cardiac arrest: a cross-
sectional retrospective study in Sweden. BMJ Open 2018;8. https://
doi.org/10.1136/bmjopen-2018-021729 e021729.
11. Israelsson J, Thylen I, Stromberg A, Bremer A, Arestedt K. Factors
associated with health-related quality of life among cardiac arrest
survivors treated with an implantable cardioverter-defibrillator.
Resuscitation 2018;132:78–84. https://doi.org/10.1016/j.
resuscitation.2018.09.002.
12. Wimmer H, Lundqvist C, S
ˇaltyt _
e Benth J, et al. Health-related quality
of life after out-of-hospital cardiac arrest - a five-year follow-up study.
Resuscitation 2021. https://doi.org/10.1016/j.
resuscitation.2021.01.036.
13. Tjelmeland IBM, Alm-Kruse K, Andersson LJ, et al. Cardiac arrest as
a reportable condition: a cohort study of the first 6 years of the
Norwegian out-of-hospital cardiac arrest registry. BMJ Open
2020;10:e038133.
14. Garratt AM, Hansen TM, Augestad LA, Rand K, Stavem K.
Norwegian population norms for the EQ-5D-5L: results from a
general population survey. Qual Life Res 2022;31:517–26. https://
doi.org/10.1007/s11136-021-02938-7.
15. Feng YS, Kohlmann T, Janssen MF, Buchholz I. Psychometric
properties of the EQ-5D-5L: a systematic review of the literature.
Qual Life Res Int J Qual Life Asp Treat Care Rehab 2021;30:647–73.
https://doi.org/10.1007/s11136-020-02688-y.
16. Garratt AM, Furunes H, Hellum C, et al. Evaluation of the EQ-5D-3L
and 5L versions in low back pain patients. Health Qual Life
Outcomes 2021;19(1):155. https://doi.org/10.1186/s12955-021-
01792-y.
17. Devlin NJ, Brooks R. EQ-5D and the EuroQol group: past, present
and future. Appl Health Econ Health Policy 2017;15:127–37. https://
doi.org/10.1007/s40258-017-0310-5.
18. Brooks RG, Rabin R, De Charro F, EuroQol BIOMED Research
Programme. The measurement and valuation of health status using
EQ-5D: a European perspective: evidence from the EuroQol
BIOMED Research Programme. Kluwer Academic Publishers; 2003:
xx, 303 p.
19. Lamu AN, Bjo
¨rkman L, Hamre HJ, Alræk T, Musial F, Robberstad B.
Validity and responsiveness of EQ-5D-5L and SF-6D in patients with
health complaints attributed to their amalgam fillings: a prospective
cohort study of patients undergoing amalgam removal. Health Qual
Life Outcomes. 2021;19:125. https://doi.org/10.1186/s12955-021-
01762-4.
8RESUSCITATION PLUS 17 (2024) 100549
20. Devlin N, Parkin D, Janssen B. Methods for Analysing and Reporting
EQ-5D Data. Methods for Analysing and Reporting EQ-5D Data.
Springer. Copyright 2020; 2020.
21. Teni FS, Rolfson O, Devlin N, Parkin D, Naucle
´r E, Burstro
¨mK.
Longitudinal study of patients’ health-related quality of life using EQ-
5D-3L in 11 Swedish National Quality Registers. BMJ Open 2022;12.
https://doi.org/10.1136/bmjopen-2020-048176.
22. Helse- og omsorgsdepartementet. Forskrift om innsamling og
behandling av helseopplysninger i Nasjonalt register over hjerte- og
karlidelser (Hjerte- og karregisterforskriften). In: Helse- og
omsorgsdepartementet, editor. Oslo: Helse- og
msorgsdepartementet,; 2011.
23. Alm-Kruse K, Tjelmeland I, Reiner A, Kva
˚le R, Kramer-Johansen J.
Use of healthcare services before and after out-of-hospital cardiac
arrest. Resuscitation 2023. https://doi.org/10.1016/j.
resuscitation.2023.109805.
24. Lawson A, Tan AC, Naylor J, Harris IA. Is retrospective assessment
of health-related quality of life valid? BMC Musculoskelet Disord
2020;21:415. https://doi.org/10.1186/s12891-020-03434-8.
25. Wimmer H, Benth J, Lundqvist C, et al. Changes in health status and
health related quality of life from six months to five years in out-of-
hospital cardiac arrest survivors - A NORCAST sub study.
Resuscitation 2022;181:182–9. https://doi.org/10.1016/j.
resuscitation.2022.08.019.
26. Haywood KL, Southern C, Tutton E, et al. An international
collaborative study to co-produce a patient-reported outcome
measure of cardiac arrest survivorship and health-related quality of
life (CASHQoL): a protocol for developing the long-form measure.
Resusc Plus 2022;11. https://doi.org/10.1016/j.resplu.2022.100288
100288.
27. Pedersen SS, Knudsen C, Dilling K, Sandgaard NCF, Johansen JB.
Living with an implantable cardioverter defibrillator: patients’
preferences and needs for information provision and care options.
Europace 2017;19:983–90. https://doi.org/10.1093/europace/
euw109.
28. Marks M, Grobet C, Audige
´L. Validity, responsiveness
and minimal important change of the EQ-5D-5L in patients
after rotator cuff repair, shoulder arthroplasty or thumb
carpometacarpal arthroplasty. Qual Life Res Int J Qual Life Asp Treat
Care Rehab 2021;30:2973–82. https://doi.org/10.1007/s11136-021-
02849-7.
29. McClure NS, Sayah FA, Ohinmaa A, Johnson JA. Minimally
Important Difference of the EQ-5D-5L Index Score in Adults with
Type 2 Diabetes. Value Health 2018;21:1090–7. https://doi.org/
10.1016/j.jval.2018.02.007.
30. McClure NS, Sayah FA, Xie F, Luo N, Johnson JA. Instrument-
defined estimates of the minimally important difference for EQ-5D-5L
index scores. Value Health 2017;20:644–50. https://doi.org/10.1016/
j.jval.2016.11.015.
31. Joelson A, Nerelius F, Sigmundsson FG, Karlsson J. The minimal
important change for the EQ VAS based on the SF-36 health
transition item: observations from 25772 spine surgery procedures.
Qual Life Res Int J Qual Life Asp Treat Care Rehab
2022;31:3459–66. https://doi.org/10.1007/s11136-022-03182-3.
32. Pickard AS, Neary MP, Cella D. Estimation of minimally important
differences in EQ-5D utility and VAS scores in cancer. Health Qual
Life Outcomes 2007;;5:70. https://doi.org/10.1186/1477-7525-5-70.
33. Tsai APY, Hur SA, Wong A, et al. Minimum important difference of
the EQ-5D-5L and EQ-VAS in fibrotic interstitial lung disease. Thorax
2021;76:37–43. https://doi.org/10.1136/thoraxjnl-2020-214944.
34. Terwee CB, Peipert JD, Chapman R, et al. Minimal important change
(MIC): a conceptual clarification and systematic review of MIC
estimates of PROMIS measures. Qual Life Res Int J Qual Life Asp
Treat Care Rehab 2021;30:2729–54. https://doi.org/10.1007/
s11136-021-02925-y.
35. Dja
¨rv T, Bremer A, Herlitz J, et al. Health-related quality of life after
surviving an out-of-hospital compared to an in-hospital cardiac
arrest: a Swedish population-based registry study. Resuscitation
2020;151:77–84. https://doi.org/10.1016/j.resuscitation.2020.04.002.
36. Andrew E, Mercier E, Nehme Z, Bernard S, Smith K. Long-term
functional recovery and health-related quality of life of elderly out-of-
hospital cardiac arrest survivors. Resuscitation 2018;126:118–24.
https://doi.org/10.1016/j.resuscitation.2018.03.017.
37. Stavem K, Augestad LA, Kristiansen IS, Rand K. General population
norms for the EQ-5D-3 L in Norway: comparison of postal and web
surveys. Health Qual Life Outcomes 2018;16:204. https://doi.org/
10.1186/s12955-018-1029-1.
38. Muehlhausen W, Doll H, Quadri N, et al. Equivalence of electronic
and paper administration of patient-reported outcome measures: a
systematic review and meta-analysis of studies conducted between
2007 and 2013. Health Qual Life Outcomes 2015;13:167. https://doi.
org/10.1186/s12955-015-0362-x.
39. Ørstavik RE, Jacobsen GW. Is community spirit a thing of the past?
Tidsskrift for den Norske laegeforening 2018;136. https://doi.org/
10.4045/tidsskr.16.0539.
40. Ebert JF, Huibers L, Christensen B, Christensen MB. Paper- or web-
based questionnaire invitations as a method for data collection:
cross-sectional comparative study of differences in response rate,
completeness of data, and financial cost. J Med Internet Res
2018;20:e24.
41. Blumenberg C, Barros AJD. Response rate differences between web
and alternative data collection methods for public health research: a
systematic review of the literature. Int J Public Health
2018;63:765–73. https://doi.org/10.1007/s00038-018-1108-4.
42. Bjertnaes O, Iversen HH, Skrivarhaug T. A randomized comparison
of three data collection models for the measurement of parent
experiences with diabetes outpatient care. BMC Med Res Method
2018;18:95. https://doi.org/10.1186/s12874-018-0557-z.
RESUSCITATION PLUS 17 (2024) 100549 9
