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J Adv Nurs. 2024;80:3767–3780.
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3767wileyonlinelibrary.com/journal/jan
Received: 10 October 2023
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Revised: 12 December 2023
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Accepted: 30 December 2023
DOI: 10.1111/jan.16055
EMPIRICAL RESEARCH QUALITATIVE
Challenges and needs in cerebrovascular disease pathway: A
qualitative descriptive study from the patients' and healthcare
professionals' perspectives
Henna Härkönen1 | Kirsi Myllykangas1 | Julius Gomes2 | Milla Immonen3 |
Mikko Kärppä4,5 | Piia Hyvämäki1 | Miia Jansson1,6
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium,
provided the original work is properly cited.
© 2024 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.
1Research Unit of Health Sciences and
Technology (HST), University of Oulu/
Faculty of Medicine, Oulu, Finland
2Oulu Business School, Oulu, Finland
3VTT Technical Research Centre of
Finland, Oulu, Finland
4Neurocenter, Neurology, Oulu University
Hospital, Oulu, Finland
5Research Unit of Clinical Medicine,
Neurology, University of Oulu/Faculty of
Medicine, Oulu, Finland
6RMIT University, Melbourne, Victoria,
Australia
Correspondence
Henna Härkönen, Research Unit of Health
Sciences and Technology (HST) University
of Oulu/Faculty of Medicine, P.O. BOX
8000, FI- 90014 University of Oulu,
Finland.
Email: henna.harkonen@oulu.fi
Funding information
Business Finland
Abstract
Aim(s): To understand patients' and healthcare professionals' experiences to improve
care in and across different domains of the cerebrovascular disease pathway.
Design: A qualitative descriptive study.
Methods: Semi- structured in- person interviews were conducted among 22 patients
diagnosed with acute cerebrovascular disease and 26 healthcare professionals taking
care of them in a single tertiary- level hospital from August 2021 to March 2022. Data
were analysed using deductive and inductive content analysis. The consolidated crite-
ria for reporting qualitative research was used to ensure reliable reporting.
Results: Overall, 19 generic and 79 sub- categories describing perceived challenges
with 17 generic and 62 sub- categories describing perceived needs were identified
related to primary prevention, organization of stroke services, management of acute
stroke, secondary prevention, rehabilitation, evaluation of stroke outcome and quality
assessment, and life after stroke.
Conclusion: Several challenges and needs were identified in and across the different
domains of the cerebrovascular disease pathway. There is a requirement for adequate
resources, early initiation of treatment, early diagnostics and recanalization, dedicated
rehabilitation services, long- term counselling and support, and impact evaluation of
services to improve cerebrovascular disease care. Future research on caregivers', and
clinical leadership experiences in and across the cerebrovascular disease pathway is
needed to explore the provision of services.
Implications for the Profession and/or Patient Care: The results of this study can be
applied by organizations, managers and research for developing and improving ser-
vices in the cerebrovascular disease pathway.
Impact: This study identified several patient- related, organizational and logistical
needs and challenges, with suggestions for required actions, that can benefit the pro-
vision of effective, high- quality cerebrovascular disease care.
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1 | INTRODUCTION
Cerebrovascular diseases include different neurological dysfunc-
tions, such as transient ischemic attack and stroke, that can be
caused by infarction (i.e. ischemic stroke) or haemorrhage (Sacco
et al., 2013). Globally, cerebrovascular diseases cause a major
burden to public health. The average lifetime cost of stroke, de-
pending on the cause, is around 63,900–71,200 euros (Strilciuc
et al., 2021). In Europe alone, the socioeconomic costs of cere-
brovascular diseases have been around 45 billion euros in 2015
(Wilkins et al., 2017), with expectations of growth as the num-
ber of patients with cerebrovascular diseases are estimated to in-
crease by 27% by the year 2047 due to the aging population and
increased survival rates (Wafa et al., 2020). Globally, stroke is also
one of the leading causes of death and long- term disability (Feigin
et al., 2022), inflicting deficits in movement, cognitive and func-
tional disturbances, along with emotional and behavioural chal-
lenges (Virani et al., 2020) with patients requiring health services
for possibly long periods of time.
2 | BAC KGROU ND
During the last decades, the organization of acute cerebrovas-
cular disease services has evolved and improved significantly
from the prevention of secondary injury to management of acute
stroke. Strokes are largely preventable by a healthy lifestyle, as
about 90% of strokes are attributed to modifiable and manage-
able risk factors (e.g. environmental, socioeconomic, and educa-
tional) (Hankey, 2020). Although they are also highly recurrent,
with 25% of stroke patients suffering a second stroke within
5 years, this recurrence is amenable by risk- factor modification
(Singh et al., 2018). Therefore, along with the management of
acute stroke, there is a need to improve primary and secondary
prevention and rehabilitation and long- term support in life after
stroke (Norrving et al., 2018). The 2–5 years after the initial stroke
is a critical period for the patients both for health recovery and
potential stroke recurrence as, depending on the severity of the
stroke and individual attributes, daily functioning can still improve
(Gil- Salcedo et al., 2022).
However, the care continuum from primary prevention to life
after stroke at home currently varies in quality due to the lack of
comprehensive primary prevention (Owolabi et al., 2022) and long-
term post- stroke care programs (Boehme et al., 2021), individualized
secondary prevention, education to support cerebrovascular disease
awareness (Tulek et al., 2017) and a siloed organization of stroke se r-
vices in and across primary and secondary care (Aquino et al., 2020)
and rehabilitation (Chen et al., 2016). In addition, patients and their
caregivers have unmet needs related to secondary prevention, reha-
bilitation and life after stroke (Chen et al., 2016; Pindus et al., 2018;
Zawawi et al., 2020).
Clinical pathways have been used to perceive the steps in a
course of care with a criteria- based progression of actions and time-
frames to address clinical problems, procedures or a domain in care
of a population group (Lawal et al., 2016). Patient journey mapping
(Davies et al., 2023) can be used to further understand how the dif-
ferent health systems are navigated through, identifying challenges
and unmet needs, evaluating continuity of care, understanding the
comprehensiveness of care, and comparing patient experiences to
clinical practice guidelines or standards of care (Jansson et al., 2020).
Healthcare professionals usually see only the part of the domain of
care they are responsible for (Busetto et al., 2022), while patients go
through the whole pathway and can therefore identify problems in
and across their entire journey (Jansson et al., 2022). In that sense,
a pathway can include many patient journeys, with both viewpoints
complementing each other in the assessment and development of a
care continuum.
Previous studies have mainly focused on individual and sepa-
rate domains of cerebrovascular diseases care such as acute stroke
care (Busetto et al., 2022; Lachkhem et al., 2018), discharge (Chen
et al., 2021) and post- discharge primary care (Pindus et al., 2018).
The perceived challenges and needs in and across the entire cere-
brovascular disease pathway, however, are unknown. For that rea-
son, more qualitative research is needed to understand the context,
healthcare system, and clinical pathway to improve the various do-
mains of cerebrovascular disease care from the perspectives of the
patient and the healthcare professional.
3 | THE STUDY
3.1 | Aim(s), objective(s) and research question
The aim of the study was to understand patients' and healthcare
professionals' experiences to improve care in and across the cere-
brovascular disease pathway. The research question was: What kind
of perceived challenges and needs do patients and healthcare profes-
sionals have in the cerebrovascular disease pathway?
Reporting Method: We have adhered to relevant EQUATOR guidelines with the
COREQ reporting method.
Patient or Public Contribution: No patient or public involvement.
KEYWORDS
cerebrovascular disorders, healthcare personnel, patients, stroke
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HÄRKÖNEN et al.
4 | METHODS
4.1 | Design and theoretical framework
A qualitative descriptive phenomenological approach was employed
using semi- structured interviews and deductive and inductive anal-
ysis techniques to explore the experiences of patients with acute
cerebrovascular disease and the healthcare professionals providing
care for them (Polit & Beck, 2018).
4.2 | Study setting and recruitment
This study was conducted at a single tertiary- level hospital in
Finland. Convenience sampling was used to recruit patients and
healthcare professionals by a study nurse (RL). Patients over
18 years with diagnosed ischemic stroke and transient ischemic
attack (I63.0- 63.9, G45.0- G45.9, I60, I61.- 61.9) and able to give
their informed consent were included. Healthcare professionals
directly involved in cerebrovascular disease care were included,
excluding supportive services.
Finland is a high- income country having the required three
stroke un its pe r million inhab ita nts, with a ne ed fo r one more com-
prehensive stroke centre (Aguiar de Sousa et al., 2019). In Finland,
the case fatality of cerebrovascular disease has declined over the
past years due to advancements made in the public health and the
organization of stroke services (Puumalainen et al., 2016). In addi-
tion, there are clinical practice guidelines nationally available for
the management of ischemic stroke and transient ischemic attack
(Ischemic Stroke and TIA. Current Care Guidelines, 2016). Finland
also has a Patient Data Repository of the Kanta Services, which
is a national information system service for archiving electronic
patient data (What Are Kanta Services?—Professionals—Kanta.
Fi, 2023).
The hospital is in the geographically largest hospital district area
for specialized medical care in Finland, with long travelling distances
and five healthcare districts with a varying population, disease
prevalence and service structures (Finnish Institute of Health and
Welfare (THL), 2020). This area also has one of the highest prev-
alence of cerebrovascular disease in Finland (Map—Sotkanet.Fi
Statistics and Indicator Bank, 2019).
4.3 | Data collection
The data was collected between September 2021 and March
2022. Semi- structured interviews were conducted in Finnish using
separate topic guides designed for both healthcare professionals
and patients and based on a previous study (Jansson et al., 2020).
All the participants were interviewed once individually in a private
room at the hosp ital by an expe rienced study nurse (RL ). Th e inter-
views were recorded and transcribed verbatim by a professional
transcription ser vice. Additional field notes were not made, as the
study focused on thought patterns and sentences describing per-
ceived challenges or needs. The patient interviews lasted bet ween
19 and 72 min, and the healthcare professional interviews were
11–89 min long. Participants were recruited until data saturation
(Polit & Beck, 2018), which was ensured by the second author
(KM).
4.4 | Data analysis
The content of the interview transcripts was coded and cat-
egorized using NVivo qualitative data analysis software (QRR
International Pty Ltd., Version 1.6.1). A combination of deductive
and inductive content analysis was applied. The analysis was con-
ducted by the corresponding author (HH, Doctoral Researcher,
MSc) with verification of the process by the second (KM, Doctoral
Resea rch er, MSc) and las t auth or (MJ , PhD) and thr ough disc ussion
with the research team. The data was classified into open codes
basing the unit of analysis to a thought pattern (Kyngäs, 2019). Th e
different domains of cerebrovascular disease care were catego-
rized into seven main categories (incl. primary prevention, organi-
zation of stroke services, management of acute stroke, secondary
prevention, rehabilitation, evaluation of stroke outcome and qual-
ity assessment, and life after stroke) according to the European
Stroke Action Plan (Norrving et al., 2018), which acted as a de-
ductive analysis matrix (Kyngäs & Kaakinen, 2020). The identified
challenges and needs (generic categories) were then further de-
fined inductively using content- specific words. An example of the
categorization is presented in Table 1.
4.5 | Rigour and reflexivity
Evaluative frameworks were used to ensure the trustworthiness
of the study in terms of credibility, dependability, confirmability,
authenticity, and transferability (Lincoln & Guba, 1985 and Guba
& Lincoln 1994, as cited in Polit & Beck, 2018). To provide appro-
priate informants and sample size, the participants were selected
purposefully and recruited until data saturation, ensuring credibil-
ity. Dependability was ensured by verification and discussion of the
analysis and resulting findings among the research team. The corre-
sponding author had no prior connection to the participants and ac-
cess to only ID- numbered transcriptions, reducing bias. Transcripts
were examined several times to confirm that the findings accurately
represented the participants' views, establishing confirmability.
Authenticity was ensured using several quotations from different
participant s prese nting the con nection of results to the dat a. The re-
sults may be applicable to similar contexts with similar patients and
healthcare professionals. For the assessment of transferability, the
demographic characteristics are provided (Table 2). For more infor-
mation, please contact the corresponding author. To ensure reliable
reporting, the consolidated criteria (Tong et al., 20 07) for reporting
qualitative research (COREQ) have been used.
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4.6 | Ethical considerations
Good ethical conduct based on national guidelines was ensured
throughout the study process (Finnish National Board on Research
Integrity TENK, 2019). This study was reviewed and approved on
the 15th of March 2021 by the Ethics Committee of Northern
Ostrobothnia Hospital District (Decision No: 46/2021) and on the
17th of May by the Northern Ostrobothnia Hospital District Board
(Decision No: 30/2021). Participants were informed of the study and
their voluntar y participation with the possibility to withdraw at any
time for no reason and with no impact on their care (patients) or
employment (healthcare professionals). Participants gave a written
consent before the interviews. All research data, including inter-
view recordings and transcripts, were stored in digital password-
protected files accessible only by the research team. The anonymity
of the participants was protected by not stating or recording names
in the interviews and using participant- specific ID numbers for the
transcription and analysis phases.
5 | FINDINGS
5.1 | Characteristics of participants
The participants of this study included 22 patients and 26 health-
care professionals (Table 2). Most of the patients had recently ex-
perienced their first cerebrovascular disease (transient ischemic
attack or ischemic stroke), whereas six of them had been treated
for previous cerebrovascular signs. The healthcare professionals
were physicians or psychologists specialized in neurology or neu-
ropsychology, registered nurses, practical care nurses, and physi-
otherapists or speech therapists actively working in cerebrovascular
disease care.
5.2 | Primary prevention
The identified challenges related to the primary prevention of cer-
ebrovascular disease were inductively formed into three generic
categories: insufficient preventive care, lack of competence, and
lack of engagement. Insufficient preventive care was due to a lack
of organization of primary prevention services (e.g. risk screening,
services to support life- style change), and inadequate resources
(e.g. diagnostic imaging and laboratory services, healthcare staffing
shortages). Patients expressed the difficult access and availability of
primary care services, which could lead to withdrawal from follow-
up, as described by one patient interviewee:
…this frustrates people, so they may not then care to
try go anywhere.
(P15, patient)
Delayed initiation of treatment an d withdrawal from a follow- up would
then result in a negative impact on modifiable risk factors for stroke
(Data S1). The lack of patients' self- management (e.g. blood pres-
sure control, medication adherence) and monitoring data (e.g. blood
TABLE 1 Example of the categorization and quotations in the organization of stroke services.
Matrix category
Generic
category Subcategory Examples of quotations
Organization of
stroke services
Symptom- to-
hospital
delay
Identification of signs and
symptoms
“Maybe if it is not a weakness on either side, then it is not noticed. With
dizziness or nausea, one may not necessarily know to seek help so
easily.” (H8)
“In terms of the education of the population, there is the problem that
people do not identify the symptoms of cerebrovascular disease…”
(H2)
Urgency of the situation “People are still saying home and not leaving early enough to like be in
the timeframes for these acute treatments of ours.” (H10)
“So, it should be something that a caregiver knows what they are…
for example. Like if they do not know what the signs are… many
times they have not been guided (interviewees' acquaintances)
to treatment fast enough if they have had, for instance, a
cerebrovascular disturbance.” (P11)
Help- seeking “…the challenges are kind of like personal… like that I have not always
gone (to seek help).” (P13)
“…maybe the patients are considering too long to seek help and are
afraid to call the emergency number and seek help, meaning that,
yes, they hang on at home as long as they can.” (H4)
Inability to call for help “The person who gets sick, then you don't always know that they
maybe cannot call for help if the stroke is very severe.” (H5)
“It was quite scary because I woke up…at small hours, yes, and I live
alone. So, I woke up to the world spinning and my legs are not
working. I cannot walk…. So, with determination, I crawled to the
phone and dialled the emergency number.” (P9)
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HÄRKÖNEN et al.
pressure) also hindered preventive care, as demonstrated by one
interviewee:
Even if the risks were identified, do they (patients)
then adhere to care, such as blood pressure (control)?
Do they take the medications? Do they monitor it
(blood pressure)?
(H5, physician)
According to interviewees, patients do not engage in self-
management (e.g. risk- factor modification) due to a lack of self-
management competence (e.g. knowledge, skills, attitudes) and
low self- confidence. In addition, patients do not understand the
risk factors of cerebrovascular disease and the long- term conse-
quences of hypertension.
The identified needs related to primary prevention were induc-
tively formed in two generic categories: multichannel public health
education and service structure for primary prevention. According
to interviewees, there is a need to deliver reliable health informa-
tion (e.g. risk factors, cerebrovascular disease signs and symptoms,
self- monitoring, brain health and ergonomics, lifestyle) using pub-
lic health messaging (e.g. television, Web- based materials, social
media, and educational campaigns). In addition, there is a need for
a service structure involving opportunistic screening (e.g. inter-
views, surveys and laboratory tests) of those at increased risk on a
national level, and further systematic screening for risk factors on an
individual level to improve primary prevention in primary, occupa-
tional and school healthcare (Data S2). The service structure should
also promote early access to care, regular follow- ups, and support
self- management using a skilled workforce (e.g. specialists, nurses,
public health nurses, psychologists) along with strategies for their
retention.
5.3 | Organization of stroke services
The identified challenges related to the organization of stroke ser-
vices were inductively formed in five generic categories: symptom-
to- hospital delay, lack of competence, inadequate resources, lack of
decision support and insufficient data management. The symptom-
to- hospital delay was due to the non- identification of signs and
symptoms of acute cerebrovascular disease as well as misunder-
standing the urgency of the acute cerebrovascular disease, which
was especially described by several patient interviewees. This could
result to patients not seeking help in time or being unable to call
for help due to severity of the situation, as demonstrated by one
patient- interviewee:
Maybe at home one could be faster in calling for an
ambulance or something. I think that is where the
greatest mistake happens, at least with older people.
(P3, patient)
According to interviewees, pre- hospital identification and early
initiation of treatment were delayed due to healthcare profes-
sionals' lack of knowledge of urgent care criteria, skills to per-
form neurological assessment, and challenges to identify atypical
signs, postoperative complications, and other conditions (e.g.
disorders of vital functions, diseases, intoxication and delir-
ium) from acute cerebrovascular disease, as described by two
interviewees:
And then there is that, how many of our patients have
called the emergency number with slurring speech
and were told that you are just drunk?
(H7, registered nurse)
TABLE 2 Demographic characteristics of the interviewees.
Characteristic, n (%)
Patients
(n = 22)
Healthcare
professionals (n = 26)
Gender
Female 7 (32%) 21 (81%)
Male 15 (68%) 5 (19%)
Age
20–39 2 (9%) 14 (54%)
40–59 8 (36%) 12 (46%)
60–79 7 (32%) 0
≥80 5 (23%) 0
Highest academic degree
Primary education 8 (36%) 0
Vocational training 9 (41% 3 (12%)
Undergraduate degree 5 (23%) 10 (38%)
Graduate degree 013 (50%)
Working status
Student 1 (5%) N/A
Employee or
entrepreneur
9 (41%) N/A
Retired 12 (55%) N/A
Profession
Practical care nurses N/A 4 (15%)
Registered nurses N/A 9 (35%)
Physiotherapists or
speech therapists
N/A 3 (12%)
Physician or
psychologists
N/A 10 (38%)
Prior cerebrovascular symptoms
Yes 6 (27%) N/A
No 16 (73%) N/A
Abbreviations: N/A, Not applicable/available; Undergraduate,
bachelor's degree; Graduate degree, master's degree, licentiate,
doctoral degree.
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I was interviewed for probably 15- 20 minutes and
then said that the symptoms are not the type that you
can go by an ambulance… and then it was confirmed
by the doctor like two times by asking it somehow and
then we left for the hospital.
(P11, patient)
In addition, the healthcare professionals lacked competence to
provide comprehensive rehabilitation after acute cerebrovascular
disease with attention paid to patients' cognitive and functional
challenges along with challenges in assessing the patient's discharge
condition.
The lack of resources was related to equipment (e.g. telemetry,
audio- visual counselling materials), facilities for patient counsel-
ling, and bed capacity due to COVID and telemetry monitoring.
In addition, the lack of decision- support tools (e.g. clinical care
guidelines, information systems and validated tools and scales)
hindered neurological and status assessment, as described by one
interviewee:
If the patient has aphasia and cannot talk or anything,
then according to the Glasgow Coma Scale, it would
be kind of weak—the delivery of speech, even though
in the end, they cannot do anything about it. You can-
not put the situation back to the beginning and com-
pare because the NEWS follow- up marker is red all
the time that the patient is in terrible condition, even
though in the end, the patient has been stable and the
same for several weeks.
(H18, registered nurse)
According to interviewees, data management was insufficient due
to the lack of health data (e.g. allergies, medication, living conditions
and severity of disabilities), interorganizational health information ex-
change, and access to the Patient Data Repository of Kanta Services
prior to patient admission. For patients, this was shown as patient
transfer delays. In addition, the low quality of documentation (e.g.
inconsistent, inadequate, and duplicate documentation and manual
data entry) and a poor user interface design (e.g. complex layout, hi-
erarchy) hinder information retrieval, which was demonstrated by one
interviewee:
It is so that I am surfing through all the pages from
Kanta, and I am trying to listen to the patient, where
they have been and if that type of page can be found
and what is documented there. And there is the same
thing with these medical imaging systems and labora-
tory systems and all of those… so it takes quite a lot
of time…
(H11, physician)
The identified needs related to the organization of stroke ser-
vices were inductively formed in five generic categories: reducing
symptom- to- hospital delay, competence development, care coor-
dination, increasing data accessibility, and creating data manage-
ment tools. Acco rding to es pecially pati ent inter viewees, there is a
ne ed for dig ital first aid kits (e .g. deci sio n- s u ppor t tools and predic-
tion recurrence risk) and automated alert systems for early detec-
tion to reduce symptom- to- hospital delay. In addition, continuous
interprofessional education (e.g. on cerebrovascular disease care,
early rehabilitation and discharge criteria), organizational visits
and online learning platforms should be utilized to develop com-
petencies. New service models are also needed for caregivers (e.g.
remote hospital visits) and transient ischemic attack patients (e.g.
fast- track protocols, remote telemetry monitoring) to improve
care coordination, as described by one interviewee:
For high- risk atrial fibrillation patients, if you wanted
a little longer telemetry monitoring, it could be done
so that the patient did not have to stay in the hospital.
Sometimes we have those with suspected atrial fibril-
lation, but it is not caught in the first 24 hours, so you
can continue for two, three days…
(H13, physician)
Increasing data accessibility was related to health data (e.g. MyData,
personal health tracking), quality of data (e.g. structured documenta-
tion), and seamless health information exchange especially in inter-
organizational care transitions (e.g. vital recordings via wireless data
transfer). According to interviewees, communication and service plat-
forms (e.g. EHR programs, applications, digital care pathways) could
be utilized to support patient- caregiver- provider communication and
constructive collaboration between primary and secondary care. In
addition, data management tools (e.g. protocols, checklists, scoring
systems, data visualizations, alarms and reminders) could be created
to support triaging and clinical decision- making, as described by one
interviewee:
There would be a list like this, that these need to be
che cked by the end of the shift. Or the need for medi-
cation administration or similar would come up on the
display. Now it is really like, if you do not remember
to go and check something, then it will or might be
forgotten.
(H24, practical care nurse)
5.4 | Management of acute stroke
The identified challenges related to the management of acute stroke
were inductively formed in two generic categories: delayed stroke
assessment and insufficient recanalization therapy. Delays in stroke
assessment were due to the lack of human resources as well as labo-
ratory and diagnostic imaging. Insufficient recanalization therapy
was due to delays in onset- to- needle times (e.g. long distances in
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rural areas) and lack of reliable health data (e.g. anamnestic data) for
re- perfusion assessment. The cerebrovascular disease care system
was seen as inefficient due to the lack of accelerated assessments,
transportation plans, and earlier initiation time- dependent recanali-
zation therapies in the acute cerebrovascular disease pathway, as
demonstrated by one interviewee:
Sometimes it can take quite long for an ambulance to
arrive in those rural areas… It can take like an hour
before you get to the hospital
(P13, patient)
The identified needs for the management of acute stroke were in-
ductively formed to one generic category of providing diagnostic
support. According to interviewees, there is a need for mobile and
diagnostic solutions for early detection and differential diagno-
sis of cerebrovascular disease for early initiation of recanalization
therapy.
5.5 | Secondary prevention
The identified challenges related to secondary prevention were
inductively formed in two generic categories: inadequate patient
counselling and insufficient prevention care. The inadequate patient
counselling was due lack of time because the reduced length of the
hospital stay does not leave much time for patients to adjust to their
acute situations, causing an information overload, as demonstrated
by one interviewee:
And then when a patient comes with all kinds of
symptoms, it can the first time in a hospital. Then
there are many issues that come at the same time.
Then it is kind of useless to give all kinds of coun-
seling because the patient does not remember them
all.
(H22, practical care nurse)
Insufficient prevention care was due to the lack of organization of sec-
ondary prevention services, structured follow- up, resources (e.g. staff,
time), access to secondary prevention, and prevention measures. This
was demonstrated by one patient- interviewee:
If there is nothing like an actual agreed follow- up,
then you are a kind of left on your own, or you are
in the hands of the health center's emergency room.
(P1, patient)
The identified needs for secondary prevention were inductively
formed in two generic categories: service structure for secondary
prevention and self- management support. There is a need to monitor
patients' engagement in self- management (e.g. lifestyle changes, medi-
cation adherence) and health data to suppor t secondar y prevention. In
addition, there is a need for cerebrovascular disease coordinators and
clinics to assess, coordinate, and support integrated post- discharge
care during rehabilitation and secondary prevention, respectively, as
described by one interviewee:
I would set up these cerebrovascular disease patients'
own clinics with multi- professional collaboration in a
way that a physical therapist, an occupational thera-
pist, and if needed a speech therapist would assess
the situation beforehand and hand over the feedback
to the caring physician, who would decide on further
rehabilitation and, at the same time, on secondary
prevention care. And these would be physicians with
an orientation in this area and with one day a week
dedicated to this function.
(H2, physician)
According to interviewees, the patients' self- management competen-
cies could be supported with various methods, such as home- based
counselling or communicating via telephone and technological solutions
(e.g. digital care pathways). Supportive content for self- management
should also be easily available to cerebrovascular disease patients early
on and throughout the patient journey.
5.6 | Rehabilitation
The identified challenges related to rehabilitation were inductively
formed in two generic categories: Inadequate evaluation of rehabili-
tation needs and inadequate provision of rehabilitation. Inadequate
evaluation and provision of rehabilitation were related to cognition,
speech (early phase of recovery), and long- term assessments as well
as access to specialized (e.g. medical, neuro- psychological), public
and private rehabilitation services and recovery care due to lack of
resources. Patients were concerned for having enough time recu-
perate before discharge. According to the interviewees, especially
working- aged patients with mild or unclear cognitive symptoms have
lacked or even dropped out of follow- up, guidance and targeted re-
habilitation, as demonstrated by one interviewee:
Rehabilitation programs are, of course, directed to
those with clear noticeable cognitive problems… Like
many times, the patients in like this examination seem
that everything is moderately okay and the patient
themselves do not experience anything as they have
not yet returned to work, then maybe that is already
a challenge as they can truly appear later. So where,
who would follow up on them, or how would they get
to rehabilitation if they need it.
(H17, psychologist)
The identified needs for rehabilitation were inductively formed in
two generic categories: service structure for rehabilitation and
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utilization of rehabilitation options. There was a need for a service
structure that provides early and easy access to a seamless and
segmented rehabilitation process. In addition, there is a need for
multidisciplinary rehabilitation (e.g. neuropsychology, therapists),
dedicated rehabilitation units and comprehensive therapy proto-
cols (e.g. speech therapy, physiotherapy, occupational therapy and
extended assessment). In addition, different rehabilitation options
should be utilized such as music therapy, interprofessional home vis-
its, and remote home rehabilitation via videoconferencing and appli-
cations with multimedia content.
5.7 | Evaluation of stroke outcome and
quality assessment
The identified challenges related to evaluation of stroke outcome
and quality assessment were inductively formed in two generic cat-
egories: lack of quality measures and patient- reported undesirable
events. There was lack of quality measures due to legal restrictions
hindering data collection, lack of follow- up data on rehabilitation
outcomes, and joint registries to follow up on the rehabilitation pro-
cess. In addition, according to interviewees, the quality of services
varied extensively between regions.
Lack of patient satisfaction was related to patient expectations
and physical needs, length of hospital stays and lack of emotional
support (e.g. fear, anxiety, insecurity, neglect, ignorance), with dis-
trust towards of healthcare professionals' abilities. In addition, pa-
tients experienced that they did not receive information about their
condition, treatment and post- discharge care, as demonstrated by
the patient interviewees:
There was no information on where you are going
and when, and it was only said that at some point to
somewhere, and then there was nobody seen, heard
in an hour and a half… many times, the same people
walked by and nobody paid any attention, so you did
not know that you were brought to the right place.
(P19, patient)
The identified needs for stroke outcome and quality assessment were
inductively formed in three generic categories: creating a national
cerebrovascular disease care pathway, creating a national database,
and benchmarking. According to inter viewees, there is a need for a na-
tional cerebrovascular disease care pathway with unified regional care
pathways and protocols. In addition, a national database was needed
for sharing information about existing tools for rehabilitation and psy-
choeducation. The interviewees identified different types of quality
(e.g. access to primary prevention, treatment adherence, impact of
risk- factor modification to cerebrovascular disease incidents, door- to-
needle time, patient experiences) and patient- centred outcome mea-
sures (e.g. long- term cognitive, physical and social disability, quality of
life, working ability related factors, self- determination capability and
lifestyle changes) to be collected for benchmarking. In addition, there
is a need to integrate EHR into the cerebrovascular disease registry to
collect evaluation data from follow- up visits in both primary and sec-
ondary care. The need for quality measures was highlighted by one
interviewee:
More prolific in this healthcare is to study and aim at
the care being effective, not how many patients have
been treated or visits or treatment episodes… to re-
move everything that has no distinct effect, and from
there, get the resource for let's say to prevention and
rehabilitation that clearly have been studied to show
effect.
(H12, physician)
5.8 | Life after stroke care
The identified challenges related to life after stroke were induc-
tively formed in three generic categories: lack of health data, dif-
ficulties in functionality assessment and inadequate support for
self- management. Lack of health data was due to a lack of reliable
health data (e.g. blood pressure, blood glucose, pulse, weight, height)
because patients do not understand the value of self- gathered data.
Difficulties in functionality assessment were related to patients'
self- determination capacity, self- management competence, and
driving capability due to cerebrovascular disease- related disabilities
(including aphasia, cognitive and physical impairments), respectively.
According to interviewees, there is a lack of self- management
support for emotional needs, administrative matters, health literacy,
and adherence to treatment. Discharged patients are confused and
scared, not fully knowing what has happened and how to proceed
having to cope in life and manage their symptoms alone and lacking
the abilit y or guidance to seek information and handle administrative
matte rs (e.g. filing forms, using digi tal ser vices) due to age or ce reb ro-
vascular disease- related cognitive challenges. The consequences of a
lack of suppor t for adhe rence was demonstrated by one inter viewee:
We have these transient ischemic attack patients and
those with mild cerebrovascular disease… some come
back again, that something has gone wrong with pa-
tient counseling, or they have not adhered to their
treatment, not taken medication, and because of that
have a new acute cerebrovascular disease.
(H1, nurse)
The identified needs for life after stroke were inductively formed in
two categories: long- term support and caregiver support. Different
solutions are needed to suppor t self- management (e.g. risk fac tors and
conditions, self- measuring, healthy lifestyle, medications, laboratory
and imaging, decision- support) long- termly. In addition, adjustment
support is needed on how to adapt and cope with cerebrovascular
disease- related changes in functionality, life situation, and permanent
|
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HÄRKÖNEN et al.
challenges in everyday life and where to receive help and support ser-
vices. Also, there is a need for driving assessment methods, patient
education and peer- support by using remote services, as described by
one interviewee:
And there was individual (content) and then some
teamwork and I think that was good.
(P10, patient)
The need for caregiver support was expressed by many interviewees.
Coaching, peer support, and long- term guidance with communication
with healthcare professionals are needed for caregivers by utilizing
different solutions (e.g. digital platforms and pathways). Long- term
guidance should focus on cerebrovascular disease- related changes
to patients' personality, cognition, mental state, available support and
services, secondary prevention and caregivers' own well- being. This
was demonstrated by one interviewee:
Or how you can support the one who has fallen ill
or how to take… it is important for a caregiver how
you take care of your own resources… suddenly the
disease may get the entire family sick. It would be a
pathway like, with information told but also with a link
to which expert to contact, but also how to further
prevent these…
(H25, physiotherapist)
6 | DISCUSSION
This descriptive study identified 19 generic and 79 sub- categories
related to perceived challenges along with 17 generic and 62 sub-
categories related to perceived needs encompassing the entire cer-
ebrovascular disease pathway from both patients' and healthcare
professionals' perspectives, highlighting the understudied acute cer-
ebrovascular disease patient's perspective on care. Based on these
perspectives, suggestions for actions to improve care in and across
the different domains of cerebrovascular disease pathway were
formed (Figure 1).
Actions are required to support primary prevention. In accor-
dance with the previous literature (Norrving et al., 2018; Owolabi
et al., 2022), the need for population- based opportunistic screening
and systematic screening of individuals from childhood to late adult-
hood were identified to initiate early preventive services and engage
individuals in self- management to decrease the risk of cerebrovas-
cular disease. Patient especially valued self- management of risk
factors, with access and availability of primary services. In addition,
novel educational methods are needed to increase public awareness
of the risk- factor modification but also of the warning signs of cere-
brovascular disease. Investing in primary prevention is crucial to im-
prove outcomes (e.g. morbidity, mortality, disability) and reduce the
economic burden (Owolabi et al., 2022) by decreasing the incidence
and reoccurrence of acute cerebrovascular disease (Hankey, 2020;
Singh et al., 2018).
FIGURE 1 Actions to improve care in
and across the cerebrovascular disease
pathway.
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HÄRKÖNEN et al.
The organization of stroke services requires competent and
committed healthcare professionals working in multidisciplinary
teams (Herpich & Rincon, 2020; Norrving et al., 2018). However,
lack of knowledge and skills related to the core competence areas
of cerebrovascular disease care were identified, which is in line
with previous research (Jarva et al., 2021; Tulek et al., 2017). This
highlights the requirement of continuous education along with
decision- support tools (e.g. guidelines, scales, electronic health
record integrations) for the planning, provision and monitoring
of the care of cerebrovascular disease patients, as they can in-
crease the quality and safety of care (Cervero & Gaines, 2015;
Dunn Lopez et al., 2017; Hassan et al., 2021) and increase trust
in patients.
This study identified symptom- to- treatment delays due to pa-
tient factors (e.g. lack of knowledge and skills in cerebrovascular dis-
ease identification, digital first aid kits), organizational factors (e.g.
human resources, education, diagnostics capabilities) and logistical
factors (e.g. acute pathways in care systems) (Lachkhem et al., 2018).
In the previous literature (Herpich & Rincon, 2020), workflows and
organized systems of acute care with telemedicine and mobile stroke
units have reduced delays, but it also highlights the importance of
early recognition of cerebrovascular disease in the community by
individuals and professionals. In this study, especially the patients
described a lack of knowledge to seek help. The provision of emer-
gency support in the form of validated tools for patients, caregivers
and healthcare professionals for early recognition was identified.
This supports early diagnosis and early recanalization therapy in the
management of acute stroke in a dedicated stroke centre, which sig-
nificantly reduces morbidity and mortality (Herpich & Rincon, 2020).
In line with (Jansson et al., 2022), poor user interface design
and lack of health data hindered information retrieval. In addition,
insufficient health information exchange, poor quality of documen-
tation, usability, and functionality issues were identified, which are
concerning, as they can amplify human errors and risk patient safety
(Hyvämäki et al., 2022, 2023). Therefore, comprehensive data man-
agement is required by addressing the needs for data collection, in-
teroperability, and communication in healthcare systems and thus
secure coordination and patient safety across the care continuum
(Kierkegaard et al., 2014; Menachemi et al., 2018).
Providing access to equal and high- quality health services is a
global challenge in cerebrovascular disease care with the rising costs
and decreasing resources in healthcare (Dieleman et al., 2017). In
Finland, the service structures for the management of acute cere-
brovascular disease are nationally advisable (Ischemic Stroke and
TIA. Current Care Guidelines., 2016). Albeit this study identified
challenges and needs in the provision of equal access and high-
quality health services in rural areas with long distances, as in the
study by (Seabury et al., 2017). The lack of resources (e.g. staff, fa-
cilities, equipment, bed capacity) was seen as hindering this in sev-
eral domains of acute cerebrovascular disease care. Implementing
modifiable services with the inclusion of digital opportunities
could provide utility and cost reductions (Antonenko et al., 2021).
The implementation of methods to evaluate care (e.g. patient and
process- related outcomes) and national governance (e.g. cerebro-
vascular disease registries, databases, and national care pathways
and protocols) could improve the quality of care and comparability
of regional service provision. By including costing benchmarks for
the nationally similar service pathways, the efficient allocation and
balancing of resources could also be promoted (Strilciuc et al., 2021).
Previous studies have shown that transitioning from special-
ized tertiary level services to secondary care is challenging in the
cerebrovascular disease pathway due to a lack of communication,
discontinuity of post- discharge services, and a lack of long- term fol-
low- up (Aquino et al., 2020; Boehme et al., 2021; Kable et al., 2018).
In accordance with the study by (Chen et al., 2016), there was a lack
of comprehensive assessment and continuity of rehabilitation. For
instance, patients with mild cognitive symptoms might easily fall
from follow- up and rehabilitation, with patients concerned of too
early discharge. Actions are needed to develop a need- based reha-
bilitation and recovery process, with multimodal rehabilitation in
dedicated multidisciplinary units, as they can reduce stroke- related
disability (Platz, 2019).
Patients and healthcare professionals both identified the lack of
emotional support, timely availability of relevant health information,
and knowledge during post- discharge care and rehabilitation ser-
vices in patients, as highlighted in the studies by Pindus et al. (2018)
and Zawawi et al. (2020). Due to varying individual cognitive and
functional challenges in recovery, patients and their caregivers re-
quire long- term support with possibilities for peer support through-
out the patient journey, highlighting both the secondary prevention
and life after stroke domains. In line with Boehme et al. (2021) and
Lip et al. (2022), this study identified that interprofessional collabo-
ration is required in the form of cerebrovascular disease clinics and
coordinators to provide equal, highly specialized care to engage pa-
tients in self- management to improve recovery, reduce the recur-
rence of cerebrovascular disease, and increase quality of life. With
different service models and interventions available, it is important
to research and establish models best suited for long- term care and
support of cerebrovascular disease patients and their caregivers
(Norrving et al., 2018).
6.1 | Strengths and limitations of the work
This study has limitations that should be considered in the inter-
pretation of results. As the cerebrovascular disease patients in this
study were ischemic stroke and transient ischemic attack patients,
and healthcare professionals worked mainly in the acute, tertiary
hospital care of these types of cerebrovascular disease patients,
the results of this study may not be transferrable to all cerebrovas-
cular disease patients' care. Also, the patients were interviewed in
the acute phase of their care, limit their perceptions, in addition to
first- time cerebrovascular disease patients having not experienced
the pathway subjectively before. The experiences of patients and
healthcare professionals were still quite similar regardless of this.
The strength of this study is indeed the complementing combination
|
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HÄRKÖNEN et al.
of patient and healthcare professional experiences to gain a wider
perspective of needs and challenges in the cerebrovascular disease
pathway with results similar to studies specific to singular domains.
The European Stroke Action Plan also provided a valid deductive
framework for the analysis process, as it provides an assessment of
the current st ate of ser vices and a roadmap for future cerebrovas cu-
lar disease care in Europe.
6.2 | Recommendations for further research
This study explored experiences of patients and healthcare pro-
fessionals to improve care in and across different domains of the
cerebrovascular disease pathway. In future, perceived challenges
and needs across the cerebrovascular disease pathway should be
investigated also from caregivers and clinical leadership perspec-
tives. In line with previous literature (Boehme et al., 2021; Norrving
et al., 2018), the support for patients' secondary prevention and
life after stroke should be further explored with special attention
paid to the long- term experiences and needs of cerebrovascular
disease patients in different parts of their lifespan. Further studies
could elaborate the challenges highlighted in the different domains
of the pathway and identify systems and solutions to solve these
challenges such as data management issues, needs for knowledge,
support and guidance.
7 | CONCLUSION
Several challenges and needs were identified in and across the dif-
ferent domains of the cerebrovascular disease pathway. There is a
requirement for adequate resources, early initiation of treatment,
early diagnostics and recanalization, dedicated rehabilitation ser-
vices, long- term counselling and support, and impact evaluation
services. Continuity and quality of care can be assured with com-
prehensive data management and systematic national evaluation
and support for developing of services. Primary and secondary
prevention and long- term support services are especially needed to
increase awareness, engage patients in self- management and sup-
port caregivers to prevent the occurrence and recurrence of acute
cerebrovascular disease and promote health and well- being.
ACKNO WLE DGE MENTS
We are grateful to the patients and healthcare staff who agreed to
participate in this research project and all the people who contrib-
uted to this project.
FUNDING INFORMATION
This study was financially supported by Business Finland, for which
we are sincerely grateful.
CONFLICT OF INTEREST STATEMENT
The authors have no conflict of interest to declare.
DATA AVAILAB ILITY STATE MEN T
Research data are not shared.
ORCID
Henna Härkönen https://orcid.org/0000-0001-6819-9392
Kirsi Myllykangas https://orcid.org/0000-0001-5944-9564
Julius Gomes https://orcid.org/0000-0003-3960-4592
Milla Immonen https://orcid.org/0000-0002-1128-119X
Mikko Kärppä https://orcid.org/0009-0003-9193-5492
Piia Hyvämäki https://orcid.org/0000-0002-1416-6146
Miia Jansson https://orcid.org/0000-0001-5815-0325
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M. (2024). Challenges and needs in cerebrovascular disease
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