Abstract
Background and objectives
Solid organ transplant candidates and recipients are a highly vulnerable population for brain disorders variably alongside their transplant history. This population would greatly benefit from brain health programs. In order to set up brain health multidimensional plans targeting patients affected with peripheral organ disease, including solid organ transplant candidates and recipients, we explored their view on brain health.
Methods
This study employed a cross-sectional survey study with descriptive quantitative analyses to review the answers received through a pencil and paper survey conducted in a single surgical center.
Results
A little over half of our respondents, above all women, reported always or often thinking about their brain health. Just over half of our patients exercise regularly and perform cognitively stimulating activities, with this figure being even lower for older patients and men. There is low public awareness and health literacy on neurology and brain diseases. We have found full recognition that peripheral organ functioning, above all heart, may have an impact on brain health. Lack of time, lack of information on what to do, and lack of motivation emerged as main barriers to enforcing lifestyle changes. Most of our respondents were willing to undergo a cognitive screening test and receive educational information on brain health.
Conclusions
Our survey provided insights on brain health topic previously unexplored among patients affected by non-neurological disorders. The gathered results will be used to implement multidomain interventional brain health plans for transplant candidates and recipients.
Supplementary Information
The online version contains supplementary material available at https://doi.org/10.1186/s12883-026-05164-1.
Keywords: Peripheral organ dysfunction, Brain health, Cognition, Lifestyle determinants, Solid organ transplant
Introduction
The complex functioning of the nervous system is fully integrated into the body’s periphery through bidirectional crosstalk with implications for brain health and disease [1]. Consistent with epidemiological and translational studies confirming such brain-body correlations [2], patients with end-stage vital organ disease, encompassing solid organ transplant (SOT) candidates, can have neurological impairment as a consequence of the main extracranial disease [1, 3], with a broad range of neurological signs and symptoms, also concerning cognition [4, 5]. Evidence suggests that adults with end-stage organ diseases and cognitive impairment are less likely to be referred for transplant evaluation, experience longer waiting times, and are less likely to be placed on transplant waiting lists compared to patients without cognitive impairment [6–8] since some studies report that cognitive impairment negatively impacts allograft survival and overall mortality [9–11]. After transplant, despite the restoration of peripheral organ function, SOT recipients remain highly vulnerable to perioperative neurological complications [12]. Among patients receiving solid organ transplants (SOT), approximately one-third will develop neurological complications [13], divided into complications common to all types of allografts, mainly related to immunosuppressant drugs, and complications relatively specific to a particular type of organ transplantation (e.g., central pontine myelinolysis in liver transplant) [12]. Neurological symptoms, as headache, insomnia and tremors, were among the most frequently reported immunosuppressant side effects by transplant recipients [14]. Other complications may include delirium, encephalopathy, cerebrovascular events, peripheral neuropathy, and cognitive dysfunction, potentially affecting functional autonomy, treatment adherence, and quality of life [3, 12]. Taken together, these observations suggest that transplant candidates and recipients represent a population at increased risk of impaired brain health across the entire transplant trajectory.
Over the last few years, the increasing burden of neurological disorders has been recognized as an urgent public health priority [15]. In May 2022, the World Health Organization (WHO) published a strategic roadmap to reduce the widespread impact of age-related neurological diseases called the Intersectoral Global Action Plan for Epilepsy and Other Neurological Disorders (IGAP), which underscores the necessity to improve brain health [16], defined as “a state in which every individual can realize their own abilities and optimize their cognitive, emotional, psychological and behavioural functioning to cope with life situations” [Brain Health. World Health Organization (WHO). https://www.who.int/health-topics/brain-health]. The World Federation of Neurology (WFN) and the American Academy of Neurology (AAN) acknowledge that it is the responsibility of neurology to identify patients highly vulnerable to brain disease who can benefit from brain health programmes [17–19]. Since patients affected by a peripheral organ disease and transplant recipients may experience neurological impairment over the course of their medical and/or surgical care, they can be recognized as a high-risk population for brain disorders. However, because they fall outside the traditional neurology subspecialties or are handled by the transplant team, this critical vulnerability to complex neurological complications may escape the neurologists’ attention [20]. Now that risk reduction guidelines and lifestyle interventions are becoming increasingly important, it is crucial to identify who is at highest risk of brain impairment and may be targeted for an intervention strategy [21].
Maintaining a healthy brain before and after SOT is important to guarantee appropriate compliance with the highly demanding peri-transplant and lifelong healthcare strongly recommended by the transplant team, especially considering the scarcity of organ availability [22]. Therefore, the transplant setting can become a perfect context for brain health programmes designed on the basis of information gathered on the target populations’ perceptions of brain health. Studies exploring brain health awareness have found that people from the general public are typically less aware of brain health than other health issues, as well as being less aware of the detrimental role of systemic diseases such as cardiovascular disease and diabetes on the brain. On the other hand, knowledge of disease risk has been reported as one of the main motivating factors for behavioural change [23].
Like other surveys performed on a larger community scale [24], we investigated how our specific population of patients perceived the importance of maintaining a healthy brain. The primary objective of this study was to explore how patients affected by extracranial diseases and candidates or recipients of SOT understand and perceive the concept of brain health. Secondary objectives were to investigate: (1) patients’ awareness of the relationship between neurological impairment and systemic medical disorders; (2) lifestyle habits potentially relevant to brain health; (3) perceived facilitators and barriers to lifestyle change; (4) willingness to undergo cognitive screening and receive educational information on brain health.
Because the concept of brain health is complex and not widely used outside the medical field, understanding how patients interpret this concept is a crucial preliminary step before implementing prevention programs. For this reason, rather than providing a predefined explanation, our survey intentionally explored patients’ spontaneous perceptions of brain health and its determinants. This approach allowed us to identify possible misconceptions or partial interpretations of the concept within a vulnerable clinical population.
Methods
Following the model of the largest brain health survey (Global Brain Health Survey) launched by the Lifebrain consortium in 2019 [24, 25], we reproduced a similar interview among patients attending an outpatient clinic at a solid organ transplant (SOT) centre. We chose this survey as a model because of the wide public impact registered after its launch, with the goal of obtaining comparable results. The survey was included in a Brain Health brochure providing general information regarding risk reduction strategies to preserve brain health and lower the risk of age-related cognitive impairment. No specific information on neurological complications in the transplant field was provided. Patients were invited to take the brochure home as an educational tool and to take a few minutes to answer the included survey during the waiting time before outpatient consultations or in the time frame between visits. Patients, both transplant candidates/recipients or surgical patients other than transplant, attending the outpatient clinic during the study period were consecutively invited to participate in the survey while waiting for their scheduled consultation. Participation was voluntary and no exclusion criteria were applied, except for inability to understand the questionnaire. They were assisted by volunteers from a regional liver transplant patient association (ASTraFE-Sicilia, https://www.astrafe.it/).
The initiative was launched on 22 July 2024 during World Brain Day, which is dedicated to promoting Brain Health and Prevention. The campaign was advertised on the institution’s social media channels as well as on posters placed at the hospital’s main entrance. The Brain Health brochures were made available until December 2024. All completed questionnaires were anonymous and posted by patients in glass boxes at various locations in our outpatient clinic. No one, including the researchers, were able to associate patients’ responses with their identity. The initiative, including anonymous data collection, was approved by the Institutional Research Review Board (IRRB/26/24). The procedure was compliant with the local rules on patient data protection and privacy e no specific informed consent was required.
Survey structure
The questionnaire was adapted from the Global Brain Health Survey developed by the Lifebrain consortium, with additional questions specifically designed for the transplant population by the research team. The survey included 13 multiple-choice questions addressing brain health perceptions and introductory questions on demographics (gender, age) and clinical status (transplant candidate, transplant recipient, other). Questions 1–5, 8–10 and 12–13 were developed using as a reference the previously cited qualitative interview developed by the Lifebrain research group targeting an international general community [24, 25]. Some original questions (6,7,11) were added to explore SOT candidate and recipient awareness of the influence of a peripheral organ disease on brain functioning and, in the case of an affirmative answer, which organ/s has/have a greater impact; we also investigated whether cognitive training together with a healthy lifestyle is deemed relevant during the transplant journey (Appendix 1). Most answers were structured using a 5 point Likert scale to allow respondents to express agreement, disagreement, or neutrality; for a few questions, respondents had to choose among a list of possibilities or give a binary yes/no answer. Participants were asked about “brain health” without providing a formal definition. This choice was intentional, as the aim of the survey was to explore patients’ spontaneous understanding of the concept rather than their interpretation of a predefined definition. The main outcome of interest was patients’ perception and spontaneous understanding of the concept of brain health. Additional exploratory outcomes included lifestyle behaviours, perceived barriers to lifestyle changes, and willingness to engage in preventive strategies such as cognitive screening or educational initiatives.
Target population
Eligible participants included adult patients attending the outpatient clinic of the SOT centre. The target population included 3 patient groups: (a) SOT candidates; (b) SOT recipients; and (c) others, encompassing candidates for traditional or minimally invasive heart surgery or interventional cardiology procedures (mainly transcatheter aortic valve implantation), heart failure patients with left ventricular assist device implanted as destination therapy, and oncology patients who were candidates for medical or surgical treatments (thoracic and abdominal surgeries). The last group was chosen as control group to emphasize eventual unique characteristics on brain health perception of transplant candidates and recipients.
Statistical analysis
Qualitative variables were described by percentages and frequency distributions, while quantitative variables were expressed as means ± standard deviations (SD) or medians and interquartile ranges. Data distribution of quantitative variables was assessed using the Kolmogorov–Smirnov test. Box plots and bar plots were used to graphically represent the distribution of the data (Appendix S1). The chi-squared test was used to assess the association between categorical variables. Questions with more than 2 answers were reduced to only 2 categories to facilitate results interpretation and to avoid sparse contingency tables (the highest score 1–2 as a surrogate for the strongest association; 3–5 as a surrogate for the weakest association). P-values < 0.05 were considered statistically significant. Given the exploratory nature of the study, no correction for multiple comparisons was applied. All statistical analyses were performed using R version 4.4.1 (The R Society, Auckland, New Zealand) and Microsoft Excel 2013 (Microsoft, Redmond, WA, USA).
Results
We collected 381 questionnaires, with a completion rate of 94.2%.
Respondent demographics
The mean age was 56.06 years (SD 15.15), males were the predominant gender (53.3%), and patients were divided according to clinical status as follows: 12.2% transplant candidates, 32.5% transplant recipients, and 55.2% others (more details are reported in Fig. 1).
Fig. 1.

Demographics and clinical status of the brain health survey respondents. Most of our survey participants were male; they were mostly middle-aged adults (mean age 56 yo); 44.7% of the gathered answers were from patients belonging to the solid organ transplant group, either as transplant candidates or recipients. Absolute numbers and percentages are reported
Brain health perceptions and determinants
A little more than half of our respondents (55%) reported always or often thinking about their brain health. Substance abuse was perceived as the predominant factor associated with brain health (90% of our patients rated the association as very strong or strong), followed by diet (81.4%), physical fitness (82.2%), social and recreational activities (80.4%), genetic background (77.3%), and environment (76%). Socio-demographic determinants such as education, occupation, and income were rated higher (very strong/strong) less frequently (66.8%, 56.3%, and 43.2%, respectively) consistent with the literature [26]. Surprisingly, sleep habits, as a factor influencing brain health, only received strong and very strong ratings in 66.4% of the questionnaires (Fig. 2). Exploring the stage of life when it is important to take care of brain health, almost half of our respondents (45.6%) rated prenatal life as having a moderate, weak or no association. When asked to choose from a range of neurological and psychiatric disorders, participants identified mental disorders more often than structural brain diseases as pathological conditions associated with brain health (Fig. 3). Furthermore, if on the one hand there is poor awareness concerning the influence of systemic medical disorders, such as diabetes, hypertension and arthritis, on brain health (Fig. 3), on the other hand, we found full recognition that peripheral organ functioning may have an impact on brain health (81.1% of our respondents recognized this association). For people who answered affirmatively to the question exploring their awareness of an existing association between peripheral organs and the brain, a further question asked them to mark the peripheral organs influencing brain health from the heart, lungs, pancreas, kidneys, and liver (Fig. 4). 86.9% of our respondents were aware that a healthy lifestyle, together with cognitive training, are very important/important to preserve brain health both before and after SOT.
Fig. 2.

Brain health determinants perceived by patients affected with a peripheral organ disease. The bar chart shows that substance use (smoking, alcohol, drugs) is seen as the most important factor influencing brain health, followed by diet, physical fitness, social and recreational activities, genetic background, environment, and having goals in life (the reported order is according to the frequency of the very strong and strong association as answered by our respondents). Social determinants, including education, job type and income, are still less recognized as non-traditional risk factors influencing brain functioning outcomes. The graph was obtained by considering percentages of people who rated the associations as very strong or strong
Fig. 3.

Diseases affecting brain health according to the survey participants. The bar chart on the left represents the frequencies of reported associations between systemic medical diseases and brain health: only a minority of patients think that systemic medical disorders have an impact on brain health. 56.4%, 44.3%, 35.1% and 13.9%, respectively, recognized an association between cancer, diabetes, hypertension and arthritis and brain health. The bar chart on the right side shows how, except for Alzheimer’s disease and other dementia (74.28%), people tend to associate psychiatric diseases (depressive disorder 76.38%; substance addiction 63.7%; schizophrenia 63.5%; anxiety 59.3%; bipolar disorder 57.4%) more often with brain health than well-known, frequent neurological disorders (stroke 57.7%, Parkinson’s disease 54.5%, migraine 35.4%)
Fig. 4.

Peripheral organs influencing brain health according to the survey participants. The heart (chosen by 61.15% of respondents) is the organ most associated with brain functioning, followed by the lungs (35.9%), liver (34.3%), kidneys (27.3%), and pancreas (23.8%)
Lifestyle habits related to brain health and facilitators and barriers to change
A picture of the lifestyle habits our respondents always or often followed is reported in Fig. 5. Worthy of greater consideration are all those healthier lifestyle determinants that most people followed only sometimes, seldom or never: performing cognitive training or brain stimulating activities (56.3%), physical exercise (65.38%), and relaxing activities (75.5%). Looking at all the lifestyle habits our respondents would be willing to do more of, the top activities are eating healthier (81.7%), exercising more (72.7%), improving sleep habits (72.7%), avoiding alcohol (70.7%), socializing more (67%), avoiding smoking (66.2%), doing more relaxing activities (63.7%) and attending cultural initiatives more often (56.4%). Only 40.1% stated that they were likely to perform brain stimulating activities. Looking at barriers to lifestyle changes, the top five answers were: lack of time (45.4%), lack of information on what to do (33.8%), lack of motivation (28.3%), followed by giving up activities you enjoy or taking up activities you dislike (both 27%) (a complete list of barriers is reported in Fig. 6). We are pleased that 78.6% of our respondents would be open to undergoing a simple test (such as a quick cognitive screening) to measure brain health; similarly, 76.7% of our patients would be open to receiving educational information about brain health. Therefore, when respondents were asked whether they would be willing to adopt healthier lifestyle behaviours, a large proportion reported positive intentions. However, this finding should be interpreted with caution, as survey questions addressing desirable health behaviours may be influenced by social desirability bias. Therefore, these responses should be considered as an indication of attitudes rather than a reliable measure of future behavioural change.
Fig. 5.

Lifestyle determinants of brain health followed by the survey participants. The percentages of patients that reported following certain lifestyle determinants always or often in their daily lives: helmet wearing 77.1%, healthy eating 76.7%, keeping up with/taking care of health 72.5%, socializing 67.9%, sleeping enough 63.3%, cognitive training 43.7%, physical exercise 34.6%, performing relaxing activities 24.47%, taking nutraceuticals 18.12%, smoking 12.5%, and drinking alcohol 8.59%
Fig. 6.

Barriers to following a healthier lifestyle according to our target population. Exploring barriers to making changes in patients’ lives with the goal of preserving brain health: lack of time and lack of information on what to do were reported most frequently as obstacles
For the next stage, we performed a supplementary analysis stratifying patients according to gender (male/female), age (divided into two ranges: <65 yo and ≥ 65 yo) and clinical status (transplant candidate, transplant recipient and other). Age- and sex-stratified analyses revealed several significant differences. Older participants were less likely to recognize education, sleep, prenatal life, and childhood as factors relevant to brain health, and were less willing to engage in cognitively stimulating activities. Women reported thinking about brain health more often, showed greater engagement in cognitively stimulating activities, and more strongly recognized the role of physical exercise. According to clinical status, having cancer was recognized as a determinant of brain health more often by transplant recipients. Non-transplant candidates/recipients did not recognize the heart as an organ supporting brain health, despite the heart being the organ most often linked with brain functioning [1]. Additional statistically significant differences according to age, sex, and clinical status are reported in Appendix 2.
Discussion
A healthy brain needs a supportive environment maintained by healthy peripheral organs to function optimally and to confer resilience to age-related neurodegenerative diseases. Conversely, when a peripheral organ disease occurs, it may impact on brain functioning [2], with a higher probability that a neurological complication occurs during the end-stage of the vital organ disease, when the patient may be eligible for solid organ transplant. When a neurological complication overlaps with a peripheral or systemic disorder and causes cognitive impairment [27], this influences decisions regarding the management of vital organ failure disease, potentially reducing the chance of being waitlisted for an organ transplant [28]. For this reason, it could be of crucial importance to implement brain health programmes also for waitlisted SOT candidates, who should be involved in proactive preventive measures, which should be maintained even after they become SOT recipients. A healthy brain is known to enhance graft function [29, 30] and outside the transplant field, brain health implementation strategies have been proposed within the anaesthesiology setting for older surgical patients to reduce perioperative delirium and postoperative cognitive impairment [31].
This survey explored brain health awareness among patients affected by severe extracranial diseases, including SOT candidates and recipients. The main findings of the study are threefold. First, although more than half of respondents reported thinking about brain health, awareness of the relationship between systemic diseases and brain health was generally limited. Second, lifestyle behaviours known to support brain health, such as physical exercise and cognitively stimulating activities, were reported by only a minority of participants, particularly among older individuals and men. Third, despite these gaps in awareness and behaviour, most respondents expressed willingness to undergo cognitive screening and to receive educational information on brain health.
The results gathered from our survey should be considered as a preliminary step towards the development of personalized brain health programmes in non-neurological settings for critically ill medical or surgical patients who are recognized as highly vulnerable populations for brain impairment. Our survey reproduces analogous results to the Lifebrain project [24] regarding the low recognition of social factors (education, job and income) as brain health determinants, above all in older patients (≥ 65 yo) and women. Another similarity is the poor awareness that brain health matters from the earliest stages of human life. Sleep quality is rated as an important factor for good brain functioning by younger patients, although the risk of insomnia increases with ageing [32]. It is evident that just over half of our patients exercise regularly and perform cognitively stimulating activities, with this figure being even lower for older patients and men. In contrast, physical exercise is reported as being important by women, who show greater cognitive gains from exercise efficacy [33]. Physical exercise at any age appears to be helpful for cognition through multiple positive effects on brain plasticity and volume, and reduced neuroinflammation [34]. Physical activity recommendations for older adults (≥ 65 yo) or adults aged 50 to 64 with clinically significant chronic conditions and/or functional limitations have been published by the American College of Sports Medicine and the American Heart Association [35]. Recommendations on implementing prehabilitation in the care of SOT candidates, though considered a frail population, have also been released by the European Society of Organ Transplantation (ESOT). The time spent on the transplant waiting list provides a window of opportunity to enhance the physical fitness and psychological wellbeing of such patients through multi-domain programmes, including physical activity, diet and psychosocial interventions [36]. High cognitive stimulation, unfortunately not frequently pursued by our respondents, is recognized as a strategy that increases cognitive reserve [34]. Given that our survey participants are a young adult population, finding strategies to make their work compatible with their critically ill or transplanted status would be beneficial. Indeed, exposure to cognitive stimulation at work reduces the risk of dementia better than the small, short-term cognitive effects of computerized cognitive training interventions [34]. Therefore, identifying new long-term interventions for cognitive training, above all for retired people, is a research priority. However, cost considerations should be given due attention since expensive initiatives were reported as barriers mainly by our male respondents.
When our survey participants had to choose among different neurological and psychiatric disorders, they recognized mental illness more often than structural brain disease as a pathological condition associated with brain health. Depression, in particular, had the highest scores and, in its reactive form, is often associated with chronic illness [37]. Migraine and stroke, two of the most frequent neurological disorders around the globe [38], were recognized as brain diseases by only 35.43% and 57.74% of our middle-aged and older adult respondents, respectively. This suggests that there is low public awareness and health literacy on neurology and brain diseases; hence, global educational initiatives are very much needed.
On the one hand, we have confirmed what we already know from the literature about the poor awareness, mainly among women, of the role of systemic diseases in impacting brain functioning [23, 24]. On the other hand, we have found full recognition that peripheral organ functioning may have an impact on brain health, this association being confirmed by more than 80% of the survey respondents. Nevertheless, the nature of this association, specifically whether it pertains to extracranial disease and reactive mental disorders, remains ambiguous. While there is a discrete perception that the heart may influence the brain, this association is not perceived for any other organ, except in a minority of patients. Yet risk perception of brain impairment while suffering from any other medical disease is a key factor for health behaviour changes [39].
As healthcare professionals, we should think about the barriers to making good lifestyle choices listed by our respondents, above all lack of time, lack of information on what to do and lack of motivation. Cognitive impairment that is common throughout the transplant journey and with a known impact on transplant outcomes [4] may benefit from brain health educational campaigns and programs. Brain health services for high risk individuals to develop a cognitive impairment have been already theorize for the general community [40]. One pillar of those services will be a risk reduction of cognitive impairment with multi-domain interventions, mainly structured nutritional, cognitive and physical training strategies with evidence of cognitive benefits [41], though never in the transplant field. Setting up neurology preventive programmes, also in non-primary neurology settings where patients are followed up for extracranial disease but extremely vulnerable for brain impairment, could help to optimize patients’ time as well as develop educational tools and intensify prevention campaigns with the objective of elucidating the methods by which individuals can preserve a healthy brain and which can enhance people’s motivation.
Most of our respondents were willing to undergo a cognitive screening test and to receive educational information on brain health. Since cognitive impairment is highly prevalent among transplant candidates, current guidelines underscore the importance of pre-transplant cognitive assessment [4], though it is not standardized, as well as preoperative cognitive screening tools in the surgery setting for older patients [42]. Given the exploratory and cross-sectional nature of the present study, our findings should primarily be interpreted as hypothesis-generating and aimed at informing future research and educational initiatives in transplant populations.
We recognize that our work has a main limitation in the way we structured a few questions, leading to a large distribution of answers across the five possibilities, which were sometimes not easily understood by patients. This may explain why there is no correspondence, as would be expected, between the lifestyle choices reported in question 9 and the daily activities reported in question 8. Another limitation of the survey is that the concept of brain health was not accompanied by a simplified definition for participants. As a result, respondents may have interpreted the term differently, potentially focusing on mental health or psychiatric symptoms rather than the broader neurological and systemic perspective adopted in the scientific literature. One more limitation of the survey could be having missed the education degree of our respondents as well as their socioeconomic status, since those variables can influence health literacy and are well known brain health determinants [43]. We also recognize that the group we chose as control group (any other patient different than transplant candidates and recipients) is highly heterogenous and not matched to the to the primary target groups and this could limit any differences emerged between groups. This survey can certainly be considered a useful instrument to give a picture of peripheral organ disease patients’ perceptions of brain health in general and the influence of the main extracranial diseases on brain resilience, which is still weak. We now have an idea about patients’ lifestyle choices, their willingness to make changes and their perceived barriers to lifestyle choices. It is the healthcare professional’s responsibility to think of solutions to overcome perceived barriers to taking part in brain health programmes, such as lack of time, motivation and information on what to do. However, even in non-neurological hospital settings, people are willing to learn more about brain health and to undergo screening procedures. This is a positive note for an interdisciplinary connection between neurology and transplant, or even general medical and surgical fields.
Conclusions
This study provides preliminary evidence that patients affected by severe extracranial diseases, including transplant candidates and recipients, show a partial understanding of the concept of brain health. While many respondents recognize the importance of maintaining brain health, awareness of its systemic determinants and adoption of protective lifestyle behaviours remain limited. These findings highlight the need for targeted educational initiatives and multidisciplinary brain health programs within transplant and other non-neurological clinical settings, although their effectiveness and potential cognitive benefits in transplant populations still require further investigation. Improving patients’ understanding of brain health may represent an important step toward integrating neurological prevention strategies into the management of complex medical conditions. A stronger connection between neurology and other specialities is desirable, building a necessary interdisciplinary field when not already implemented in hospitals.
Supplementary Information
Acknowledgements
Acknowledgments: UPMC Communication team (Francesca Valagussa, Alessandra Sansone, Serena Pizzo, Aurelio Lo Verde) for the Brain Health brochure production and initiative dissemination; Salvatore Camiolo, President of patients’ association ASTRAFE Sicilia (https://www.astrafe.it/) and all its volunteers for their help inviting patients to take part in the survey. We also wish to acknowledge UPMC Language Services for revising this manuscript.
Abbreviations
- SOT
Solid organ transplant
- WHO
World health organization
- IGAP
Intersectoral global action plan for epilepsy and other neurological disorders
- WFN
World federation of neurology
- AAN
American academy of neurology
- IRRB
Institutional research review board
- SD
Standard deviations
- ESOT
European society of organ transplantation
Authors’ contributions
all authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Vincenzina Lo Re, Emanuele Lo Gerfo, Vitale Miceli, Valentina Agnese and Diego Bellavia. The first draft of the manuscript was written by Vincenzina Lo Re and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
Funding
this work was supported by a grant of the Italian Ministry of Health, Fondi 5 × 1000, year 2020 and Ricerca corrente-Linea 2.
Data availability
the raw data supporting the findings of this study are available from the corresponding author upon reasonable request and with permission from IRCCS ISMETT.
Declarations
Ethics approval and consent to participate
the study was approved by the Institutional Research Review Board with the approval number IRRB/26/24. The local Ethics Committee (ISMETT Ethics Committee) has been informed about the conduction of this anonymized survey study. According to local and international rules, for this anonymous and volunteer survey, no specific consent form was required from participants [art. 110-bis del Codice Privacy e commi 2, lett. J; 4 dell’art. 9 del Regolamento UE 2016/679].
Consent for publication
all authors approved the manuscript and gave their consent for submission and publication.
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Contributor Information
Vincenzina Lo Re, Email: vlore@ismett.edu.
Vitale Miceli, Email: vmiceli@ismett.edu.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
the raw data supporting the findings of this study are available from the corresponding author upon reasonable request and with permission from IRCCS ISMETT.
