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BMC Neurology
Lessons learned forpandemic preparedness
intheneurodegenerative research andclinical
elds: anadvice report based onParkinson’s
disease asanexample
Marije J. Splinter1, Emily J. Henderson2,3, Yoav Ben‑Shlomo2, Sirwan K. L. Darweesh4, Pawel Sowa5,
Frank J. Wolters1,6, Premysl Velek1,7, Hannie J. E. M. Meijerink8, Paulus Bakx8, M. Arfan Ikram1,
Evelien I. T. de Schepper7, M. Kamran Ikram1,6 and Silvan Licher1,7*
Abstract
Background A sustainable pandemic preparedness strategy is essential to ensure equitable access to healthcare
for individuals with neurodegenerative diseases. Moreover, it is vital to provide clinicians and researchers in the neuro‑
degenerative disease fields with resources and infrastructure to ensure continuity of their work during a (health) crisis.
Methods We established an international collaboration between researchers, clinicians, and patient representatives
from the Netherlands, Poland, and the United Kingdom. We co‑created a pandemic preparedness plan primarily
informed by examples from those affected by or working in the field of Parkinson’s disease, with potential applica‑
tion to other neurodegenerative diseases or the general population. This plan builds upon insights and experiences
from four population‑based studies during the COVID‑19 pandemic. Between March and November 2023, we organ‑
ised two hybrid meetings in Bristol (United Kingdom) and Rotterdam (the Netherlands), and two online meetings.
Results Research recommendations included three core factors in questionnaire design during health crises: 1)
using existing, validated questions, 2) questionnaire adaptability and flexibility, and 3) testing within and outside
the research group. Additionally, we addressed burden of participation, and we advocated for robust data shar‑
ing practices, underlining the importance of regulatory measures extending beyond the COVID‑19 pandemic. We
also shared clinical perspectives, including strategies to mitigate social isolation; challenges in virtual versus in‑person
consultations; and systemic changes to recognise and prevent moral injury in healthcare professionals.
Conclusion In this pandemic preparedness plan, we provide research and clinical recommendations tailored
to the field of Parkinson’s disease, with broader relevance to other neurodegenerative diseases and the general
population. This establishes an essential framework for setting up new studies and safeguarding research and clinical
practices when a new pandemic or other (health) crisis emerges.
*Correspondence:
Silvan Licher
s.licher@erasmusmc.nl
Full list of author information is available at the end of the article
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Splinteretal. BMC Neurology (2024) 24:473
Keypoints
• A sustainable pandemic preparedness strategy is essential for equitable healthcare access and continuity of research
and clinical practice in the neurodegenerative disease fields.
• We established an international collaboration involving researchers, clinicians, and patient representatives
from the Netherlands, Poland, and the UK, to co‑create a pandemic preparedness plan, drawing upon their experi‑
ences in four population‑based studies during the COVID‑19 pandemic.
• Research recommendations included key factors in remote data collection, strategies to reduce the burden of par‑
ticipation, and considerations in terms of data sharing and confidentiality.
• Clinical strategies highlighted mitigating social isolation, challenges in virtual consultations, and preventing moral
injury in healthcare professionals.
Keywords COVID‑19, Pandemic preparedness, Neurodegenerative diseases, Cohort study, Healthcare utilisation
Graphical Abstract
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Splinteretal. BMC Neurology (2024) 24:473
Introduction
e COVID-19 pandemic has led to suboptimal care for
individuals at risk of or living with neurodegenerative
diseases [1, 2]. ere were notable declines in the inci-
dence of registered dementia and all-cause parkinsonism
diagnoses, as well as related hospital admissions, com-
pared to pre-pandemic levels [3–8]. Changes in health-
care-seeking behaviour may be underlying these declines,
resulting from limited access to healthcare due to defer-
ral of elective and non-urgent consultations [9–13].
Furthermore, the rapid implementation of telemedicine
throughout the entire healthcare system proved to be
challenging, especially in adapting to the needs of indi-
viduals with cognitive impairments or sensory issues [14,
15]. ese developments might have exacerbated pre-
existing inequalities in health outcomes, as the most vul-
nerable individuals were most affected, with a synergistic
interplay of age, socioeconomic status, and social depri-
vation [16, 17].
e expected seasonal recurrence of (new variants of)
COVID-19 and the potential emergence of other air-
borne infectious diseases underscore the need for a sus-
tainable healthcare preparedness strategy [18, 19]. is
is particularly essential to ensure equitable access to care
for individuals with chronic diseases. Moreover, it is vital
to provide clinicians and researchers in the field of neu-
rodegenerative diseases with resources and infrastruc-
ture to ensure continuity of their work during a pandemic
or other (inter)national (health) crisis.
To address this need, we established an international
collaboration consisting of experts with complemen-
tary backgrounds, including researchers with a clinical
background and those in the fields of epidemiology and
public health. Collectively, we constructed a pandemic
preparedness advice report through co-creation with
patients’ and caregivers’ representatives of the Dutch
Parkinson’s Association, with the aim of redefining les-
sons learned regarding healthcare provision, healthcare
utilisation, and research into strategies and practices
that could be applied during future pandemics. For sci-
entists, we provide recommendations on conducting
reliable research when study sites are closed due to pan-
demic-related countermeasures. For patients and clini-
cians, we present guidelines to safeguard the continuity
of care and individual wellbeing when routine healthcare
provision is suspended.
Methods
Context oftheadvice report: theCOVID‑19 pandemic
In December 2019, an outbreak of SARS-CoV-2 was
registered in the Chinese municipality of Wuhan. In
the following months, the respiratory virus had spread
mostly within China but also to 28 additional countries
[20]. In the European region, Italy was the first coun-
try to implement a nationwide quarantine, after which
other countries followed. Nearly all gatherings and
events were prohibited, international travel was either
cancelled or restricted, non-essential retail stores were
closed, and both educational and work environments
primarily operated online. ese countermeasures were
continuously evaluated and subsequently relaxed or
tightened based on infection and hospitalisation rates.
However, fundamental hygiene practices, such as hand
washing, wearing face masks in public, and avoiding in-
person contact when experiencing COVID-19 symp-
toms, remained in place [21]. As of December 2023, the
European region had reported more than 277 million
confirmed cases and 2.2 million deaths attributable to
COVID-19 [22].
Selection ofparticipants
PREP-ND is an international collaboration consisting of a
total of thirteen members: eleven with a research and/or
clinical background, along with two patient representa-
tives from the Netherlands, Poland, and the United King-
dom. All participants were invited via email.
For the recruitment of researchers and clinicians, we
employed purposeful sampling, which is a qualitative,
nonprobability sampling technique that involves identi-
fying individuals that are especially knowledgeable about
or experienced with the phenomenon of interest [23]. In
the context of this report, the selected participants have
extensive experience in collecting population-level and
clinical data in cohort studies and/or with providing care
during the COVID-19 pandemic, particularly within the
field of Parkinson’s disease and the general population.
eir academic backgrounds included epidemiology,
general practice, neurology, public health, sociology, and
statistics, ensuring an interdisciplinary perspective on
(health) crisis preparedness.
We recruited the patient representatives through snow-
ball sampling, a convenience sampling method [24].
ese representatives were enlisted from the established
network of one of the already involved participants, with
whom they had previously collaborated on other projects.
Development ofrecommendations
Over the course of twelve months, we organised two
hybrid meetings, one in Bristol (United Kingdom, 15
March 2023) and another in Rotterdam (e Nether-
lands, 26 June 2023), and two online meetings.
During the first two-hour hybrid meeting, attend-
ees prepared an overview of their experiences with
healthcare provision, access to healthcare, and/or
conducting research during the COVID-19 pandemic
according to a pre-specified topic list (Table1). e
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Splinteretal. BMC Neurology (2024) 24:473
aim of this meeting was to identify best practices and
lessons learned, which we could collectively transform
into recommendations for a future (health) crisis. We
shared and explored the experiences in a round-table
discussion, delving into the social, cultural and politi-
cal differences between our healthcare systems during
the pandemic. Attendees also had the opportunity to
propose and discuss additional topics that they consid-
ered particularly relevant. e meeting was recorded,
transcribed and summarised by one PREP-ND mem-
ber with a background in qualitative research meth-
ods. is summary distinguished between research and
clinical perspectives, classifying all discussed insights
and perspectives into candidate recommendations with
corresponding sub-themes [25].
In the second two-hour hybrid consensus meeting,
we reviewed these recommendations with group mem-
bers who were unable to attend the first meeting, main-
taining flexibility to revisit and refine (sub-) themes, in
line with recommendations by Braun and Clarke [25].
Employing an iterative approach, we agreed on the over-
all structure of the final advice report, which we drafted
over the consecutive months. We evaluated and revised
its content in the two remaining online meetings, ensur-
ing thorough review of the final report by all members.
COVID‑19 (sub‑)studies
e recommendations provided in this advice report are
based on PREP-ND members’ involvement in either the
following (cohort) studies, ranging from population-based
to clinical settings, or a patient association (Table2).
Results
e four meetings revealed the following recommenda-
tions with corresponding sub-themes for both the con-
tinuity of research and for the improvement of clinical
practice and individual wellbeing during a (health) crisis.
Recommendations tofacilitate thecontinuity ofresearch
duringaglobal (health) crisis
Theme 1: Remote data collection amongaected
populations
Nationwide lockdowns and other preventive measures
throughout the COVID-19 pandemic caused substantial
disruptions to in-person data collection. In response, the
researchers involved in PREP-ND established a COVID-
19 (sub-)study to ensure research continuity and to gain
insights into various aspects of COVID-19, including
risk factors, mental and physical health, and healthcare-
seeking behaviour and utilisation [13, 27, 28, 34]. is
was primarily done by distributing questionnaires that
Table 1 Topic list
Subject Attendee Questions
Impact of COVID‑19 Healthcare provider/researcher • How did the COVID‑19 pandemic impact your daily work as a health‑
care provider/researcher?
Patient representative • How did the COVID‑19 pandemic impact your daily life?
Challenges in providing/accessing healthcare Healthcare provider/researcher • Can you describe any particularly difficult or challenging situations
that you faced while providing care/conducting research dur‑
ing the COVID‑19 pandemic?
• Did you overcome these challenges, and how did you do that?
Patient representative • Can you describe any particularly difficult or challenging situations
that you faced while accessing care during the COVID‑19 pandemic?
• Did you overcome these challenges, and how did you do that?
Adaptation and response strategies Healthcare provider • What measures did you and/or your organisation take to ensure
that patients could continue to receive care during the COVID‑19
pandemic?
• What measures did you and/or your organisation take to ensure
that those who were unable to come to the hospital or clinic in‑person
could continue to receive care during the COVID‑19 pandemic?
Researcher • What measures did you and/or your organisation take to ensure
continuity of research during the COVID‑19 pandemic?
Patient representative • What measures did your healthcare provider take to ensure that you
could continue to receive care during the COVID‑19 pandemic?
• What measures did your healthcare provider take to ensure that those
who were unable to come to the hospital or clinic in‑person could
continue to receive care during the COVID‑19 pandemic?
Lessons learned Healthcare provider/
researcher/patient representa‑
tive
• Looking back on the past three years of COVID‑19, what lessons
have you learned about healthcare delivery and access to care dur‑
ing a health crisis?
• How will you apply these lessons in the future?
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Splinteretal. BMC Neurology (2024) 24:473
participants could complete from the safety of their
home environment. Study protocols of these question-
naires had to be created within a short timeframe due
to the need to adapt to the continuously evolving infec-
tion rates, leaving limited opportunities for evaluation
and adjustment of study design. Summarising the most
important lessons learned from this period, we recom-
mend focusing on three core factors in the design of
questionnaires during a pandemic:
Core factor 1: Use ofexisting, validated questions
ere is a need for a framework or standardised question-
naire that is specifically tailored to address the impact of a
pandemic on vulnerable individuals. Such questionnaires
should have the flexibility for adaptation while allow-
ing for cross-validation and comparison across (cohort)
studies. It should also contain suggestions for questions
about time-varying factors, such as mood or healthcare
utilisation. ese questionnaires save valuable time in the
process of study design, while still providing high-quality
and relevant data. Successful examples of existing, open-
access questionnaire databases are the European Social
Survey [35], the Joint Research Centre COVID-19 Survey
of the European Commission [36], and the International
Social Survey Program [37], based on which the question-
naires in the Bialystok PLUS study were developed [13].
Core factor 2: Adaptability andexibility ofquestionnaires
e applicability of an existing questionnaire should be
reviewed in light of any specific pandemic-related fac-
tors. It is essential to assess whether both the questions
and the response options align with the current situation,
or if any revisions are necessary. For example, it should
be evaluated whether response categories offer sufficient
variation in order to minimise the risk of misclassifica-
tion. Binary response options do not always adequately
capture the complexity of participants’ experiences. To
illustrate this notion, the following question that was
used by the COVID-19 sub-study within the Rotter-
dam Study to inquire about healthcare avoidance: “Did
you have symptoms for which you did not contact your
general practitioner or medical specialist because of the
COVID-19 pandemic” to which respondents could either
answer yes or no. However, those who answered ‘no’ were
not necessarily non-avoiders, as among them could also
have been individuals who did not experience any symp-
toms and, therefore, were not at risk of avoiding health-
care. Hence, the question should have incorporated
additional response options or included the possibility
for participants to provide a free-text comment (Table3).
e latter option ensures that the entire spectrum of
viewpoints is captured in the question. Nevertheless,
researchers should evaluate the feasibility of performing
additional data cleaning tasks that are associated with
Table 2 Referenced cohort studies and patient association
Study/association Description
The Rotterdam Study [26, 27] From April 2020 to December 2021, seven questionnaires were distributed to community‑dwelling participants
of the ongoing population‑based Rotterdam Study in the district Ommoord in Rotterdam, the Netherlands. These
questionnaires covered a range of topics, including COVID‑19‑related symptoms, socioeconomic factors, life‑
style, and healthcare utilisation. The frequency of the questionnaires was based on the COVID‑19 infection curves
in the Netherlands
PRIME‑XS [20] This single‑centre, cross‑sectional study began in September 2020 and involved individuals with parkinsonism
and their primary informal caregivers in the catchment area of Royal United Hospital Bath NHS Foundation Trust
in the United Kingdom. Participants were provided with a questionnaire that could be completed by the individuals
with parkinsonism themselves, their caregivers, or a research assistant over the phone. The survey included questions
on COVID‑19‑related symptoms, healthcare utilisation, sociodemographic factors, medication use, and PD‑specific
measures
PRIME‑NL [28, 29] This prospective, observational study is ongoing from January 2020 through December 2025 and includes individuals
diagnosed with Parkinson’s disease or atypical parkinsonism who are receiving treatment in one of the four com‑
munity hospitals that form the PRIME Parkinson care region of the Netherlands. The study aims to analyse variations
in care and their impact on perceived quality of life by collecting data from healthcare claims and annual question‑
naires completed by persons with parkinsonism, their caregivers, and healthcare providers
Bialystok PLUS [13, 30–32] The research project ‘Rise or fall? Short‑ and long‑term health and psychosocial trajectories of the COVID‑19 pandemic’
was embedded within the Bialystok PLUS cohort study. It examines the short‑ and long‑term health and psychosocial
trajectories in the general population during the COVID‑19 pandemic. It includes research centre visits by post‑
COVID‑19 individuals, a general population survey using a CAWI questionnaire, and the analysis of the impact
of the pandemic on mental health as part of the COH‑FIT project
The Parkinson’s Association [33] The Dutch Parkinson’s Association represents individuals with Parkinson’s disease or parkinsonism, and their loved
ones. This association organises meetings and courses, provides up‑to‑date and objective information, and is a critical
advocate in political and media settings. It also safeguards quality of care and ensures the voice of those involved
with Parkinson’s disease or parkinsonism is heard in scientific research. Both patient representatives involved in PREP‑
ND were affiliated with this association
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Splinteretal. BMC Neurology (2024) 24:473
free-text responses [38]. Furthermore, it is important to
consider the order in which responses are presented, tak-
ing into account the risk of acquiescence. is bias arises
when the first response options that are listed are typi-
cally affirmative or the most socially acceptable, poten-
tially leading to a perception that these are the preferred
choices [39].
Core factor 3: Testing thequestionnaire withinandoutside
oftheresearch group
Questionnaires developed during the COVID-19 pan-
demic mainly reflected the perspective of the research
group itself, as the rapid development of the virus neces-
sitated quick establishment of new research initiatives,
limiting the ability to incorporate a broader range of per-
spectives. However, this approach may not accurately
capture the experiences of the target population. To miti-
gate potential bias, we recommend establishing a perma-
nent patient or participant panel that plays a pivotal role
in both study design and data collection. is becomes
imperative in cases where existing questionnaires are not
fully applicable to a specific health crisis, necessitating
adjustments or the introduction of new questions.
Prior to distributing the questionnaire, an obvious yet
often overlooked step during the acute phase of a pan-
demic relates to the rigorous testing of the questionnaire
by both this patient/participant panel and the research
group. e primary responsibility of the research group
is to evaluate the structure and flow of the questionnaire,
particularly for questionnaires that contain skip ques-
tions. is is vital to provide a seamless experience for
participants and to prevent them from being directed to
sections they are not supposed to complete. e patient/
participant panel, on the other hand, should review the
content of the questionnaire to ensure it encompasses a
wide range of common perspectives, experiences and
whether all answer options are captured sufficiently.
Partly based on the target audience, the research group
and patient/participant panel should decide on the dis-
tribution format of the survey, whether on paper, digi-
tally, or both. Although paper questionnaires are typically
more costly and have a higher data cleaning burden,
a combination of both paper and digital methods is
assumed to enhance response rates and improve gen-
eralisability, as this approach enables inclusion of indi-
viduals without computer access or with limited digital
skills [40]. It can also be considered to include a question
Table 3 Example question
Former version Recommended version
1. Did you have symptoms for which you did not contact your
GP or medical specialist because of the COVID‑19 pandemic?
• No
• Yes
1. Did you have symptoms for which you did not contact your GP or medical specialist
since (date)?
• I did not have any symptoms (continue to question 5)
• I had symptoms, but I contacted my GP or medical specialist for them (continue
to question 4)
• I had symptoms for which I did not contact my GP or medical specialist (continue
to question 2)
2. Which symptoms did you have since (date) for which you did not contact your GP
or medical specialist?
• List with pre‑specified symptoms, and a free‑text option
3. What was the most important reason for not contacting your GP or medical special‑
ist?
• Fear of becoming infected with COVID‑19
• Fear of burdening my healthcare provider
• I did not expect to get access to care (for example, I thought there would not be
a hospital bed for me)
• Financial reasons
• Other… (free‑text)
4. Did your symptoms, to your own insight, require direct medical attention?
• None of my symptoms required direct medical attention
• At least one of my symptoms required direct medical attention, and I also received
that
• At least one of my symptoms required direct medical attention, but I did not (directly)
receive that. I experienced this once or twice
• At least one of my symptoms required direct medical attention, but I did not (directly)
receive that. I experienced this 3, 4 or 5 times
• At least one of my symptoms required direct medical attention, but I did not (directly)
receive that. I experienced this 6 or more times
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Splinteretal. BMC Neurology (2024) 24:473
about the participant’s preferred format for follow-up
questionnaires.
Theme 2: Burden ofparticipation
It is suggested that questionnaire length and cogni-
tive load can increase the burden of participation in
survey research [41]. ese factors may result in lower
response rates and reduced questionnaire completion.
For this reason, researchers often decide to refrain from
distributing overly lengthy questionnaires. While being
mindful of questionnaire length, we recommend consid-
ering additional ways to minimise response burden and
enhance response rates, for example by providing assis-
tance in completing the questionnaire. is method was
exemplified within the PRIME-XS study, which involved
a vulnerable population of individuals with parkinson-
ism and primary informal caregivers of individuals with
parkinsonism. ose who did not respond to the initial
invitation letter received one or two telephone calls from
the study team, which served the purpose of answering
questions, inquiring about the need for support in partic-
ipation, identifying potential language barriers, or assess-
ing the capacity of the individual to provide informed
consent [34]. In cases where individuals were unable to
consent, a close friend or relative was allowed to act as
a personal consultee. Moreover, participants were not
obliged to complete the questionnaire in one sitting, but
had the flexibility to spread it over several days, allow-
ing for a more accommodating, participant-centred
approach [34]. e key principle underlying these efforts
was to convey genuine appreciation for participants’
involvement, emphasising their freedom to withdraw
their participation at any time for any reason. In this way,
vulnerable individuals were not immediately excluded
from participation but received additional assistance to
enable their engagement.
Theme 3: Data sharing andcondentiality
Research during the COVID-19 pandemic generated
a large amount of available data, but also created chal-
lenges in effectively connecting multiple data sources for
long-term use. e urgency of the crisis necessitated an
override of the usual protocols, facilitated largely due to
temporary regulatory measures, yet this approach fell
short of establishing a lasting framework for integrating
data sources. Regulatory measures are needed beyond
the duration of the pandemic, which carefully balance
privacy regulations with the benefit of health research for
public health. Informed consent forms that accommodate
for data sharing, and universal templates for data sharing
agreements may further enhance rapid, joint research
efforts during pandemics. Moreover, an established and
continuously-funded research data sharing platform is
needed, where researchers can securely upload their data
to a repository that already has all requisite permissions
in place [42]. ese efforts hinge on involvement of gov-
ernmental agencies and implementation of supporting,
permanent legislation. A successful initiative is the UK
Longitudinal Linkage Collaboration, which combines
data from major interdisciplinary and pan-UK Longitu-
dinal Population Studies (LPS) with COVID-19-related
records. All data is first processed by the original study
and the National Health Service (NHS) to remove identi-
fiers such as name and address. en, the data is stored
and analysed in a secure research computer, from which
no data can be removed. is setup facilitates pooled
analyses within a functionally anonymous Trusted
Research Environment (TRE), regulated under the Digi-
tal Economy Act[43]. Examples of data suitable for these
research environments are the Microdata from Statistics
Netherlands, comprising linkable, anonymised data that
can be accessed through a secure environment known
as the Remote Access (RA) environment. Similarly, the
Dutch National Institute for Public Health and the Envi-
ronment (RIVM) collected individual-level data during
the COVID-19 pandemic such as vaccination status and
COVID-19 testing information.
Recommendations toimprove clinical practice
andindividual wellbeing duringaglobal (health) crisis
Theme 1: Social isolation andstress amongaected
individuals
Being largely confined to the home or usual residence
during the COVID-19 pandemic was detrimental for
both physical and mental health of individuals with neu-
rodegenerative diseases [44]. Environmental changes
during the pandemic affected their cognitive, behav-
ioural, and psychological wellbeing [45, 46]. For instance,
individuals with Parkinson’s disease and their caregivers
shared that the lack of regular exercise and social inter-
action resulted in elevated feelings of stress. In-person
movement groups that used to take place during the
week were cancelled, depriving these individuals of the
opportunity to undertake physical activity within settings
such as gyms or swimming pools. is was particularly
challenging for those without adequate space or equip-
ment in their home environment to exercise. Moreover,
the lack of social engagement led to increased feelings
of isolation. Patient representatives noted that group
exercise can offer a substantial motivational boost that
is challenging to replicate when exercising alone. ere-
fore, we propose carefully balancing the harms of social
isolation with the health risks posed by the crisis. In-per-
son meetings for affected individuals with a low risk of
severe infection may be facilitated, provided that appro-
priate protective measures are in place. Individuals who
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Splinteretal. BMC Neurology (2024) 24:473
are classified as high-risk should be targeted for online
support groups as a safer alternative, which was put into
practice by the clinicians affiliated with the PRIME-XS
study. ese support groups encompassed online patient
gatherings, virtual sessions led by a physiotherapist, and
employment of social workers to assist those struggling
with social isolation. ese meetings could also serve as
information platforms, providing regular updates and
recommendations to affected individuals about pan-
demic-related factors, such as infection prevention and
potential treatment options. Collaboration with disease
charities, which have extensive patient networks, is cru-
cial in this approach.
Theme 2: Virtual versusin‑person consultations
Preserving patient confidentiality presents a challenge in
virtual healthcare provision. For instance, conducting pri-
vate conversations is more feasible when patients reside
in larger homes with multiple rooms compared to those
in smaller shared apartments. Yet, evaluating patients in
their own environment during virtual home visits also
offers unique advantages. It could provide insights into
their gait and activities of daily living that might not be as
apparent in a clinical setting, enabling healthcare provid-
ers to make decisions such as repositioning furniture to
prevent freezing among individuals with parkinsonism.
In the implementation of telemedicine, it is essential to
prioritise the support of individuals who may encounter
difficulty in advocating for themselves, considering not
just their physical health but also their social circum-
stances, such as stigma or lack of privacy. ese individu-
als might not feel secure expressing themselves via phone
or video calls. Moreover, within the European Union,
between one-third and nearly half of the population has
low health literacy and almost half lack basic digital skills
[47, 48]. To have basic digital skills, individuals must
know how to do at least one activity associated with each
of the following domains: information and data literacy,
communication and collaboration, digital content crea-
tion, safety, and problem-solving [47]. erefore, when
deciding who should be targeted with digital consulta-
tions, it is vital to account for this digital divide and its
impact on different patient groups. Yet, we should refrain
from labelling patients as digitally challenged solely based
on factors such as their educational attainment, occupa-
tion, or ethnic background, as this may contribute to stig-
matisation of these groups and unfairly defining them as
unskilled or incapable. Instead, the decision to schedule a
virtual or in-person consultation should be made in care-
ful collaboration with the patient, taking into account
their complex care needs, such as the presence of somatic
and/or language barriers that could hinder virtual com-
munication, as well as personal preferences [14].
During a pandemic, a risk stratification could serve as
an initial step in this decision, however, a comprehensive
understanding of risk necessitates the convergence of
various domains, such as environmental factors (aimed
at minimising the risk of cross-contamination), patient-
specific factors (focused on ensuring patient safety), and
healthcare professional factors (regarding their safety and
capacity). For individuals with or at risk of neurodegener-
ative diseases, this multifaceted approach should extend
beyond physical symptoms to encompass neuropsychiat-
ric symptoms as well. Affected individuals who strongly
prefer in-person consultations despite risk factors should
have their preferences carefully considered, but insitu-
ations where safety dictates otherwise, physicians may
need to overrule these preferences in order to safeguard
both healthcare providers and other patients. In such
cases, home visits may represent a viable compromise.
Theme 3: Moral injury inhealthcare professionals
e concept of moral injury has mainly been acknowl-
edged within the field of military psychiatry [49]. How-
ever, it has become increasingly recognised as a potential
consequence of having delivered healthcare during the
COVID-19 pandemic. is condition is characterised
by a profound psychological trauma resulting from situ-
ations that challenge an individual’s deeply-held moral
convictions. It manifests as emotions like guilt, shame,
anger, and a sense of alienation from one’s personal iden-
tity. Distinguishing moral injury from other related con-
ditions such as moral stress, burnout, and posttraumatic
stress disorder (PTSD) is essential for understanding and
addressing the unique challenges that healthcare pro-
fessionals face [50]. Unlike moral stress, moral injury is
a persistent and enduring condition that emerged from
prolonged exposure to moral conflict. However, moral
stress can evolve into moral injury if left unaddressed. In
contrast to PTSD, moral injury does not feature symp-
toms related to fear, and is not contingent upon direct
personal harm or threat.
e COVID-19 pandemic has brought attention to
the risk of moral injury among healthcare profession-
als. Providing care during the pandemic was a complex
experience for them: many felt a sense of moral conflict
regarding the patients they generally treated, but were no
longer able to see in-person. Simultaneously, they felt a
sense of urgency and duty in delivering the acute care of
patients with COVID-19. Moreover, they were concerned
with safeguarding their own well-being and the health
of those in their personal lives. Other examples of moral
injury include the necessity to limit patients’ in-person
interactions and separating them from their relatives, as
well as feeling unable to provide the level of care that they
believed their patients deserved [51].
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 9 of 11
Splinteretal. BMC Neurology (2024) 24:473
To prevent or address moral injury, systemic changes
are imperative. is begins with healthcare organisations
recognising the importance of preventing or reducing
moral injury, similar to how burnout reduction is priori-
tised at institutions like the Mayo Clinic, NHS Lothian/
Scotland, and Stanford University [52]. Subsequently,
development of infrastructural support systems is essen-
tial to facilitate psychological well-being to buffer and
mitigate the risk of moral injury in times of crises. is
includes evidence-based training programs aimed at rec-
ognising and addressing moral injury, ensuring access to
mental health support and other counselling services,
and fostering a workplace culture that promotes open
communication and peer support [50, 53]. Additionally,
in anticipation of potential future health crises resem-
bling the COVID-19 pandemic, educational institutions
training healthcare professionals should integrate moral
injury awareness and resilience-building techniques into
their curricula to better equip them for the moral chal-
lenges they may face in their careers.
Summary andconclusions
For this advice report, we brought together a group of
experts to develop recommendations for the continuity
of research and healthcare in the field of neurodegen-
erative diseases during a global (health) crisis. Research
recommendations included key factors in remote data
collection; strategies to reduce the burden of participa-
tion; and considerations in terms of data sharing and
confidentiality. From a clinical perspective, we empha-
sised the importance of mitigating social isolation and
stress among affected individuals; we shared guidelines
in the use of virtual and in-person consultations; and we
stressed the need to recognise and address moral injury
in healthcare professionals.
e major strength of this report is the collaboration
among a diverse group of contributors, bringing together
scientific, clinical, and patient perspectives. Yet, as we
emphasised earlier, each (health) crisis may require spe-
cific adaptations of research and clinical practices to
effectively protect vulnerable populations. e patient
representatives, researchers, and clinicians involved in
this advice report were mainly experienced in the field
of Parkinson’s disease. As such, the clinical recommen-
dations in this report may not fully address the needs of
individuals with other neurodegenerative diseases, such
as dementia, where cognitive impairment introduces
unique challenges that were not the primary focus of
this report. erefore, future studies should expand to
include patients (or their representatives), researchers
and clinicians from a wider range of neurodegenerative
conditions.
is report will be useful to researchers, clinicians, and
policymakers to enhance preparedness for future (health)
crises. It is of particular relevance to the field of Parkinson’s
disease, including affected individuals, healthcare profession-
als, and associated research fields. Importantly, this report
and existing literature underscore the need to proactively
establish pandemic preparedness now, rather than adopting
a passive approach until such crises arise [18, 54–56]. ese
preparedness frameworks should be interdisciplinary and
intersectional in scope, extending beyond identifying and
monitoring disease outbreaks, and fostering collaboration
across the entire scientific spectrum along with patient and
public involvement [16, 54, 57–59]. is approach facilitates
the development of a resilient and responsive healthcare sys-
tem that is capable of shielding vulnerable populations from
widening healthcare disparities during future crises.
Authors’ contributions
MJS, EJH, YBS, SKLD, PS, FJW, PV, HJEMM, PB, MAI, EITS, MKI, and SL attended
the group meetings and actively contributed to the content of this report.
MJS drafted the manuscript, which was subsequently reviewed and revised by
EJH, YBS, SKLD, PS, FJW, PV, HJEMM, PB, MAI, EITS, MKI, and SL.
Funding
This work was funded by the EU Joint Programme – Neurodegenerative Disease
Research (JPND) and the Netherlands Organisation for Health Research and
Development (ZonMw, grant numbers: 10510062120001 and 10430372310006).
Data availability
No datasets were generated or analysed during the current study.
Declarations
Ethics approval and consent to participate
The Rotterdam Study has been approved by the Medical Ethics Committee of
the Erasmus MC (registration number MEC 02.1015) and by the Dutch Ministry
of Health, Welfare, and Sport (Population Screening Act WBO, license number
1071272–159521‑PG). PRIME‑XS was approved by the London—Brighton & Sus‑
sex Research Ethics Committee (REC reference 20/LO/0890). PRIME‑NL has been
reviewed by the ethics committee of the Radboud University Nijmegen Medical
Centre on the basis of the Dutch Code of conduct for health research, the Dutch
Code of conduct for responsible use, the Dutch Personal Data Protection Act and
the Medical Treatment Agreement Act. The ethics committee has passed a posi‑
tive judgment on the study. The Bialystok PLUS Study was conducted according
to the guidelines of the Declaration of Helsinki, and approved by the Bioethical
Committee of Medical University of Bialystok, protocol code: APK.002.346.2020.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Author details
1 Department of Epidemiology, Erasmus University Medical Centre, Rotterdam,
The Netherlands. 2 Department of Population Health Sciences, Bristol Medical
School, University of Bristol, Bristol, UK. 3 Royal United Hospital Bath NHS Foun‑
dation Trust, Bath, UK. 4 Depar tment of Neurology, Radboud University Medical
Centre, Nijmegen, The Netherlands. 5 Depar tment of Population Medicine
and Lifestyle Diseases Prevention, Medical University of Bialystok, Bialystok,
Poland. 6 Department of Neurology, Erasmus University Medical Centre, Rot‑
terdam, The Netherlands. 7 Department of General Practice, Erasmus University
Medical Centre, Rotterdam, The Netherlands. 8 Parkinson Vereniging, Bunnik,
The Netherlands.
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 10 of 11
Splinteretal. BMC Neurology (2024) 24:473
Received: 1 July 2024 Accepted: 22 November 2024
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