Post cardiac arrest care and follow-up in Sweden – a national web-survey

Despite the need for structured post CA care for survivors and family members, few
studies have described these aspects 24]–27]. Overall, this survey showed that guidelines are not available at many hospitals
in Sweden, and consist mainly of traditional cardiac rehabilitation with follow-up
visits at cardiac reception units. Resuscitation coordinators in general lack knowledge
about how post CA care is organized. Answers to the open-ended question confirm these
findings. This raises the question of whether the hospitals meet post CA care needs,
among survivors and family members, in order for health to be restored and improved
over time.

Since cardiac follow-up does not include all CA patients and ICU follow-ups seem to
be uncommon, there is no clear pathway for CA survivors and their family members.
According to answers from the open-ended question, differences could depend on diagnosis,
cause of CA and type of hospital ward. In addition, our results imply great variability
in care between hospitals. In contrast to national intentions, striving for equal
care 34], our findings showed that quality of post CA care and follow-up seems to depend on
where the patient lives. This is not unique to Sweden and corresponds to the results
of a Canadian study by Keenan, et al. 35]. In their study, regional differences in ICU care after CA were also described. However,
the results entail the importance of local, national and international guidelines.
Encouragingly, written information material with the aim to support patients’ and
family members’ recovery seemed to be implemented as an element of post CA care at
the majority of the Swedish hospitals, and therefore in some ways can help to create
uniformity. Further, processes that promote families’ ability to cope with the life-threatening
event might be strengthened by learning from the experiences of others 28].

As in previous investigations of post ICU care and follow-up 18], the content of the visits in our survey mainly included the present status of the
patients (e.g. assessing current physical function, daily activities and health).
The lack of routines on how to handle problems identified, shows low focus on rehabilitation
in order to support and promote health and recovery over time. A randomized controlled
follow-up intervention especially designed for CA survivors has been tested in the
Netherlands 36]. This 37] is one of few health-promoting interventions intended for CA survivors and their
caregivers, which have been described in detail. This individualized, semi-structured
psychosocial intervention, ‘Stand still…, and move on’, is designed for early detection of emotional and cognitive problems, and for providing
information and support. It also aims to promote self-management as well as an early
referral to specialized care if needed. The intervention consists of one to six consultations
conducted by specially trained nurses 36]. The recently published results showed that the intervention improved QoL and decreased
anxiety among CA survivors at one-year post CA. However, it did not improve outcome
for caregivers. These results are very likely to contribute to improvements in post
CA care and follow-up 25].

Less than half of the hospitals reported that they had as a routine to invite family
members to participate in post CA care. However, it remains unclear how and if concerns
among family members are detected. Maybe they are invited to participate in follow-up,
or maybe they are forgotten. Since mild cognitive dysfunction appears to be common
among OHCA survivors 4], 5], and cognitive dysfunction among survivors has been shown to be associated with strain
among family members 38], it is important for family members to be included in post CA care. In addition,
stress, anxiety and decreased QoL among relatives have been reported 23]. As previous dyad studies show that patients and spouses affect each other’s health
39], 40], survivors and their family members will likely affect each other in the same way.
There is also reason to assume that the function of the family is affected by, as
well as affects, health and QoL among both patients and family members 41]. Family members might play an important part in the post CA care. Therefore, nursing
should actively promote strengths and health among both survivors and their family
members 28].

A minority of the hospitals used PROMs to detect problems among survivors. After this
study was conducted, the Swedish registry for cardiopulmonary resuscitation began
including PROMs in the follow-up, for example, health-related quality of life among
survivors using questionnaires and telephone interviews. PROM data will contribute
to better knowledge of the life situation among survivors, since the number of patients
available for research will increase. This knowledge could constitute a starting point
for the testing of screening methods and health promoting interventions as well as
the creating of national guidelines. In addition, PROMs play a key role for person
centred care, by influencing the care based on patient specific information 42]. In a recently published editorial, Smith and Bernard 16] highlight the need for more research to determine what outcome measures accurately
describe obstacles important to patient- and family health after a CA event. They
argue that good measurements, with the ability to capture predictors for poor health,
could aim to target and evaluate interventions. Consensus has not been reached concerning
what assessments to use to evaluate outcome after a CA. However, one of the most descriptive
guidelines can be found in the recommendations of the American Heart Association from
2011 43]. In a recently published study of 249 OHCA survivors 38] it was concluded that questionnaires and telephone interviews to assess cognitive
function and QoL can be recommended for CA research.

In the present study, most of the follow-up visits took place within the first three
months after the CA. However, a few open-ended responses indicated that follow up
visits were sometimes based on patients’ needs. This might indicate a growing awareness
of health as multidimensional 28], making the patient perspective essential. Further, there is a lack of knowledge
and guidance about optimal timing and intervals for evaluating the patient’s QoL after
a CA. The UK NICE guidelines for follow-up after a general critical illness suggest
a structured pathway for assessments: at ICU stay (during the stay and before discharge),
at ward-based care (during and before discharge), and at a follow-up visit 2–3 months
after discharge 19]. A structured pathway for rehabilitation of present findings has further been suggested
by Jones 9]. However, these guidelines are not designed especially for a CA group and most of
the interventions still lack sufficient evidence. In addition, many survivors, especially
those suffering IHCA, may not be admitted to an ICU at all.

Nurses, in particular those working at cardiac- and intensive care reception units,
should be aware that CA patients and relatives could be at risk of not receiving optimal
post CA care. Therefore, they should pay special attention to individual needs and
possible health-problems. In order to improve post CA care and follow-up, future research
should focus on the needs of CA survivors and their family members and on the testing
of health promoting interventions. Such knowledge will be helpful for improving hospital
care and developing guidelines.

Limitations

Cross-sectional surveys with descriptive designs are beneficial approaches for health
care researchers, particularly in new area of inquiry. However, they have some drawbacks
that need to be considered 44]. The questionnaire was developed specifically for this study and had not undergone
any extensive validation. However, the tool development was guided by a well-used
conceptual framework about health care quality 31], 45]. Although the questions cover all three components, i.e. structure, process and outcome,
not all aspects of these were included. This choice was made to make the questionnaire
short and easy to complete. The open-ended question allowed respondents to provide
supplementary answers to the closed-ended questions, as well as to express other aspects
of post CA care. In addition, content validity was determined by a researcher with
extensive experience in instrument development and psychometrics. The response rate
was high, which indicated that the questions were easy to understand and complete.
This also indicated an interest for the study. In addition to a high response rate,
the respondents were well spread geographically and there were different types of
cities, and small and large hospitals. Despite the high response rate, the findings
should be interpreted and generalized with some caution.

Another limitation was sparse qualitative data from the open-ended question, reported
by 15 of the respondents. For this reason, qualitative data were deductively grouped
according to the six established topics, followed by inductive categorization and
abstraction of the data. With more extensive material, it would have been preferable
to start the analysis by coding the data. Despite this limitation, the qualitative
data contributed to a better understanding of the quantitative findings.

In this study, we sent the questionnaire to resuscitation coordinators, since they
were most likely to know the routines at the hospitals. However, in order to get more
comprehensive results, answers from other groups, e.g., cardiac rehabilitation nurses
or nurses responsible for post ICU care and follow-up, might also have been of interest.
Another weakness is that we cannot say anything about which hospitals completed the
questionnaire and which did not, since the answers were given anonymously. Still our
results imply the need for improvements in post CA care, e.g., by finding structured
pathways for referral and including other specialities, in order to increase the chances
of promoting all aspects of health and QoL among survivors and their families, especially
emotional and cognitive aspects.