Perception of Polish patients with cancer of the ethical and legal issues related to biobank research.

BACKGROUND: Although biobanks have become fundamental to many research centers and contribute to medical development, they generate many ethical and legal issues that may discourage patients from donating. MATERIALS AND METHODS: To understand patients' perception of ethical and legal issues related to biobanks we conducted a survey among 548 Polish patients with cancer. RESULTS: While 93.1% of patients with cancer declared themselves willing to donate biospecimens left over after a medical procedure to a biobank, most opted for one-time consent or study-specific consent, blanket consent being less frequently preferred. Many patients believed that future use of previously collected tissues require second contact. Most patients preferred pseudonymization over anonymization of the data, and supported donors' right to withdraw informed consent at any given moment. Finally, while personal health information was the most expected form of compensation for donation, most patients suggested that all parties, including the biobank concerned, the sponsors of the research, and the donors, should own the rights to cancer tissues donated and profit from the biobank research. Patients' opinions on the ethical and legal issues related to biobank research were associated with age, sex, religiosity, education level, and place of residence. CONCLUSIONS: Since biobanks generate ethical and legal issues related to informed consent, data protection and storage, as well as the sharing of biosamples, tissue ownership, and profit sharing, that may discourage patients from donation, when asking a patient for a donation, healthcare professionals should communicate in a donor-centered manner and address patients' ethical and moral concerns related to donation and offer resources to help manage these concerns.

Attitudes of oncology patients' towards biospecimen donation for biobank research.

BACKGROUND: Since the biological material that remains after diagnostic and therapeutic procedures plays crucial role in biobank research, this study aims to explore cancer patients' views on the donation of biospecimens for research purposes. METHODS: 548 oncology patients from two hospitals with oncology treatment units in Poznan, Poland, completed an anonymous, self-administered pen-and-paper questionnaire. RESULTS: Although only 43.4% of patients had heard of biobanks, 93.1% declared themselves willing to donate. 71.1% of patients believed that doctors should ask patients to donate, and 60.9% that this should be done before the medical procedure. While 65% of patients were willing to donate any type of tissue that remained after a medical procedure, blood, saliva and hair were indicated most frequently. 40.5% of patients would donate their entire body after death and 21% would refuse. Patients' support for biobanks was mainly driven by the desire to support science, help advance cancer research and altruism. Some respondents expected health information or medical treatment. The most common barriers for donation were physical distance, repeated examinations, concerns over the privacy and confidentiality of data and the commercial or unethical use of samples. Patients' attitudes toward biobank donation seemed to be associated with age, education level, declared religiousness, a family history of genetically determined diseases and whether they were a blood donor. CONCLUSIONS: Although cancer patients' lack of biobank awareness had no effect on their affirmative attitudes towards biobank research, there is a need to further increase patients' support and overcome possible barriers that might hinder their willingness to donate.

Trust and Support for Cancer Research Biobanks: Insights from Cancer Patients in Poland.

BACKGROUND Biobanks are legally regulated entities that acquire, store, prepare, preserve, test, analyze, and distribute defined biological material and related information and data from human sources. This study aimed to evaluate trust, support and willingness to donate personal data and tissue samples for biobanking from cancer patients attending oncology departments in Poznan, Poland. MATERIAL AND METHODS This study utilized data from questionnaire-based survey conducted from February to June 2023 among 548 patients from 2 Poznan hospitals equipped with oncology treatment units. The survey employed convenience sampling. Statistical analysis was carried out using JASP 0.18.3 and PQStat1.8.6., with significance levels set at 0.05. Descriptive statistics and logistic regression were utilized to present the results. RESULTS 92.2% of cancer patients supported the establishment of cancer research biobank in Poland, and 93.1% declared the willingness to share their cancer tissues for research purposes. Patients' willingness to donate was associated with biomedical research conducted by biobanks and types of biobank institutions. Most patients were willing to donate for research on cancer, genetic and autoimmune diseases or dementia, but were reluctant to participate in research on sexual identity, intelligence, aggression and for-profit research. Patients were willing to donate to biobanks managed by medical universities, public institutions, clinical hospitals and national biobanks but not to foreign and private biobanks. CONCLUSIONS Although patients' support for cancer biobank is high it is not unconditional as their willingness to participate in cancer-related research is associated with types of biomedical research conducted by biobanks and different types of biobank institutions.

Beyond the sine wave: unveiling climate-driven baseline mortality cycles.

The relationship between temperature and mortality is well-established, with higher mortality rates occurring in moderate climates during winter. Studies on COVID-19 and influenza-related excess deaths often assume a sine-like wave pattern for baseline mortality. This study aims to assess the accuracy of this approximation in capturing the observed mortality pattern and explore its linkage with climate. Weekly mortality data from European regions (2000-2019) were modeled using the seasonal-trend decomposition procedure based on Loess. Cycles were grouped into clusters, and underlying trends were extracted using principal component analysis. Generalized linear models assuming a sine-like pattern were used to test predictive value. Cluster analysis divided the regional cycles approximately into continental and temperate climate regions, further subdivided into oceanic and Mediterranean. While the continental region exhibited a sine-like mortality pattern, it displayed modest deviations that compounded further south. The period of elevated winter mortality became shorter but more intense, while decreased summer mortality became more pronounced yet delayed. This study improves weekly estimations of excess mortality models by providing enhanced baselines. The deviation from the sine-like approximation mirrors the idealized outbreak pattern from epidemiological models with sharper surges and more gradual declines. The results point to winter infections, impacted by acquired immunity and weather conditions, as the primary drivers of fluctuations in mortality. In warmer regions, there is an apparent shift toward a lower number of overall infections within a compressed time span.

Vitamin Status in Patients with Phenylketonuria: A Systematic Review and Meta-Analysis.

The published data on the vitamin status of patients with phenylketonuria (PKU) is contradictory; therefore, this systematic review and meta-analysis evaluated the vitamin status of PKU patients. A comprehensive search of multiple databases (PubMed, Web of Sciences, Cochrane, and Scopus) was finished in March 2024. The included studies compared vitamin levels between individuals diagnosed with early-treated PKU and healthy controls while excluding pregnant and lactating women, untreated PKU or hyperphenylalaninemia cases, control groups receiving vitamin supplementation, PKU patients receiving tetrahydrobiopterin or pegvaliase, and conference abstracts. The risk of bias in the included studies was assessed by the Newcastle-Ottawa scale. The effect sizes were expressed as standardised mean differences. The calculation of effect sizes with 95% CI using fixed-effects models and random-effects models was performed. A p-value < 0.05 was considered statistically significant. The study protocol was registered in the PROSPERO database (CRD42024519589). Out of the initially identified 11,086 articles, 24 met the criteria. The total number of participants comprised 770 individuals with PKU and 2387 healthy controls. The meta-analyses of cross-sectional and case-control studies were conducted for vitamin B12, D, A, E, B6 and folate levels. PKU patients demonstrated significantly higher folate levels (random-effects model, SMD: 1.378, 95% CI: 0.436, 2.320, p = 0.004) and 1,25-dihydroxyvitamin D concentrations (random-effects model, SMD: 2.059, 95% CI: 0.250, 3.868, p = 0.026) compared to the controls. There were no significant differences in vitamin A, E, B6, B12 or 25-dihydroxyvitamin D levels. The main limitations of the evidence include a limited number of studies and their heterogeneity and variability in patients' compliance. Our findings suggest that individuals with PKU under nutritional guidance can achieve a vitamin status comparable to that of healthy subjects. Our study provides valuable insights into the nutritional status of PKU patients, but further research is required to confirm these findings and explore additional factors influencing vitamin status in PKU.

When Biobanks Meet Religion: Association Between Religiosity and Attitudes of Polish Medical Students Toward Biobanking of Human Biological Material for Research Purposes.

While biobanking is expanding globally, the empirical evidence concerning the impact of religion on future healthcare professionals' awareness and willingness to donate biospecimens for biobank research is lacking. To understand how medical students' religious beliefs can fuel their questions regarding how biospecimens would be stored, cared for, and used, we conducted a survey among 1500 medical students at Poznan University of Medical Sciences. Our findings suggest that, while both religious and nonreligious students supported the idea of biobanking of human biological material and were willing to donate for research purposes, nonreligious students felt more positive toward biobanking, supported the idea of establishing biobanks in Poland more often, and were more eager to donate most types of tissues and to participate in biobank research. Religious beliefs were also associated with medical students' perception of benefits and risks resulting from biobanking, perceived trust toward various biobank institutions, and preferred type of consent.

Emotional experiences of family caregivers of children with Dravet syndrome.

BACKGROUND: Since the psychosocial implications of Dravet syndrome (DS) are much more serious and far-reaching than in other types of epilepsy, caring for a DS child seriously affects the entire family. This study describes the emotional experiences of family caregivers of DS children and evaluates the way caregiving affects their perceived quality of life. METHODS: An anonymous, self-administered online questionnaire was sent to family caregivers of DS children through the online patient advocacy organization the Association for People with Severe Refractory Epilepsy DRAVET.PL. It focussed on the psychosocial impact of caregiving for DS children, the perceived burden of caregiving, caregivers' emotional experiences and feelings related to caregiving, and the impact of DS on the perceived quality of life. RESULTS: Caregivers stressed that caring for a DS child is associated with a significant psychosocial and emotional burden that affects the entire family. Although most caregivers reported that it was the child's health problems and behavioral and psychological disorders that were the most challenging aspects of caregiving, they were also burdened by the lack of emotional support. As caregivers were profoundly engaged in caregiving, they experienced a variety of distressing emotions, including feelings of helplessness, anxiety and fear, anticipated grief, depression, and impulsivity. Many caregivers also reported that their children's disease disrupted their relationships with their spouses, family, and healthy children. As caregivers reported experiencing role overload, physical fatigue, and mental exhaustion, they stressed the extent to which caregiving for DS children impaired their quality of life, their social and professional life, and was a source of financial burden. CONCLUSIONS: As this study identified specific burden domains affecting DS caregivers' well-being family carers often need special attention, support, and help. To alleviate the humanistic burden of DS carers a bio-psychosocial approach focusing on physical, mental, and psychosocial interventions should include both DS children and their caregivers.

To donate or not to donate? Future healthcare professionals' opinions on biobanking of human biological material for research purposes.

BACKGROUND: Over the last few decades biobanks have been recognised as institutions that may revolutionise biomedical research and the development of personalised medicine. Poland, however, still lacks clear regulations regarding the running of biobanks and the conducting of biomedical research. While the awareness of the general public regarding biobanks is low, healthcare professions and medical students also lack basic knowledge regarding biobanks, and such ignorance may affect their support for biobanks. METHODS: This study is aimed at assessing the knowledge and attitudes of future healthcare professionals towards the donation of human biological material for research purposes and is based on a sample of 865 Polish medical students at Poznan University of Medical Sciences. RESULTS: This research has shown that the awareness of medical students' regarding biobanks is low. It has also shown that while the majority of future healthcare professionals enrolled in this study supported the idea of biobank research and declared themselves willing to donate, still many students felt ambivalent about the biobanking of human biological material for research purposes and expressed concerns over biobanking research. While the primarily motivation to participate in biobank research was the desire to help advance science and to develop innovative therapies, the most common reason for a refusal was the fear that the government, insurance companies or employers, might have access to the samples. Concerns over unethical use of samples and data safety were also prevalent. More than half of students opted for a study-specific model of consent and only a few opted for broad consent. CONCLUSIONS: This research suggests that a lack of knowledge about biobanks, their role and activities may affect medical students' support for biobanks and their active participation in the collection and management of biospecimens for research purposes. Since in the future medical, nursing and pharmacy students will be involved in the collection, storage, testing and analysis of biospecimens from their patients, medical students in all professional fields should be trained regarding the concept, purposes and operational procedures of biobanks, as well as the ethical, legal and social implications of biobank research.

Attitudes of Polish physicians, nurses and pharmacists towards the ethical and legal aspects of the conscience clause.

BACKGROUND: While healthcare professionals' right to invoke the conscience clause has been recognised as a fundamental human right, it continues to provoke a heated debate in Polish society. Although public discourse is filled with ethical and legal considerations on the conscience clause, much less is known about the attitudes of healthcare professionals regarding that matter. The aim of this study was therefore to describe the attitudes of Polish physicians, nurses and pharmacists towards the ethical and legal aspects of the conscience clause. METHODS: We analysed a group of three hundred healthcare professionals: physicians, nurses and pharmacists in Poznan, Poland, using a standard questionnaire comprising of 29 questions about various ethical and legal aspects of the conscience clause and participants' personal experiences with the conscience clause. The study was conducted between January and March 2020. RESULTS: This research shows that although most Polish healthcare workers support the right to invoke the conscience clause they differ significantly in their opinions on to whom and to what medical procedures the conscience clause should apply to. It also demonstrated that while the conscience clause is rarely invoked in Poland, most healthcare professionals declare that the current legal regulations in that sphere are unclear and inaccurate. CONCLUSIONS: While there is an urgent need to raise the awareness regarding the conscience clause among medical students and healthcare professionals and educate them about such issues, it is even more important to improve the legal system in regard to the CC so that it protects both HCPs' right to the CC and safeguards patients' rights to medical services.

Teleconsultations Quality During the COVID-19 Pandemic in Poland in the Opinions of Generation Z Adults.

Introduction: The aim of the study was to collect and evaluate the opinions of representatives of Generation Z on their satisfaction with medical teleconsultation services during the COVID-19 pandemic in Poland. Methods: An online survey was conducted from April to June 2021. We received replies from 424 students. The research tools used comprised a validated Doctor-Patient Communication (DPC) questionnaire, the Telehealth Satisfaction Scale (TeSS), and a self-authored questionnaire. Results: About 60% of the respondents rated communication with a doctor during the remote visit as medium, with a DPC score value in the intermediate range (36-50). Only 7.5% of students rated DPC as high (DPC score over 50). Also, satisfaction with telemedicine measured by the modified Telehealth Satisfaction Scale was assessed as intermediate by 61.3% of respondents. DPC and satisfaction with telemedicine services are better assessed by students living in large cities and those who used paid telemedicine services. Conclusions: The need to improve the quality of DPC has been observed. Also, the functioning of telemedicine platforms, with the possibility of using images in teleconsultations would be welcome, with the concomitant leveling out of the disproportions in the quality of telemedicine services and DPC between urban and rural areas, as well as between commercial and noncommercial services. This could improve the service delivery process and, consequently, be beneficial for the competitiveness of telemedicine, which will be based on medical rather than organizational aspects.

Does Religion Influence the Motivations of Future Healthcare Professionals to Volunteer During the COVID-19 Pandemic in Poland? An Exploratory Study.

This study was designed to determine the relation between religion and the motivations of future healthcare professionals to volunteer during the COVID-19 outbreak in Poland. Data were collected from 417 healthcare students via an online questionnaire. The results indicated that although students' religiosity was not a significant predictor of volunteering during the pandemic, it played a key role in determining their motivations to join the fight against COVID-19. There was a significant positive relationship between students' religiosity and their eagerness to commit for the sake of the community rather than for personal or egoistic motives.

Fecal Fat Concentration and Excretion in the First 2 Years of Life: a Cross-Sectional Study.

OBJECTIVES: Data on pancreatic exocrine secretion in the youngest children are scarce. The aim of the study was to determine the range of normal values for fecal fat concentration (FFC) and fecal fat excretion (FFE) in infants and toddlers up to 2 years of age. METHODS: A total of 160 subjects aged 1 to 24 months (8 groups of 20: aged 1-3, 4-6 months, etc) were included in the study. In all children, FFC (%) and FFE (g/day) were assessed in 3-day stool collection. RESULTS: FFC correlated with age (r = -0.50, P < 0.0001). Of infants aged 1 to 3 months 65% had FFC higher than the <5% norm proposed for older children. The values of 90th/95th FFC percentile ranged from 9.7/13.0% at 1 month to 3.1/3.2% at 24 months. FFE did not differ between age groups. It was, however, higher than 4 and 3 g/day in 7.5% and 15.0% infants, respectively. The first detailed nomogram for the assessment of FFC and FFE in children aged 1 to 24 months was created. CONCLUSIONS: Healthy infants may have higher FFC and FFE than older children. We provide reference values, which should allow for both precise and facile FFC and FFE interpretation in clinical practice.

Ultra-rare ultra-care: Assessing the impact of caring for children with ultra rare diseases.

BACKGROUND: We sought to assesses the impact of caring for children with ultra rare diseases (URDs) on family carers and to analyse the way these experiences differ among the caregivers of children diagnosed through prenatal or newborn screening, and those with symptom-based diagnosis. METHODS: A total of 200 caregivers of 219 URDs children completed an on-line survey regarding the challenges and experiences of caregivers of URDs children. RESULTS: The majority of URD caregivers felt burdened by their children's health problems, emotional and behavioural changes. 46.5% reported feelings of care overload, 43% coped poorly with the stress, and many experienced a variety of feelings of distress towards the role of caregiver. While most caregivers struggled with the diagnostic odyssey and were dissatisfied with the healthcare services for URD children, caregivers of children diagnosed through prenatal or newborn screening were significantly less burdened than the parents of children with symptom-based diagnoses. CONCLUSION: Although caregivers of URDs children experience physical and emotional strain, they are often neglected by the healthcare system. A bio-psychosocial approach to URDs should therefore also include family caregivers' physical and psychosocial needs. Apart from financial and emotional support, enhancing access to genetic testing and newborn screening should be prioritised.

Invisible patients in rare diseases: parental experiences with the healthcare and social services for children with rare diseases. A mixed method study.

This study explores the experiences of Polish caregivers of children with rare disease (CRD) with health care and social services for CRD. A mixed-methods approach was employed, using an open-ended questionnaire with a convenience sample. Quantitative data presented through descriptive statistics, were complemented by thematic analysis applied to qualitative responses. Responses from 925 caregivers of 1002 children with CRD revealed that the duration of the diagnostic journey varied, spanning from 0 to 18 years, with an average time of 1.7 years. Similarly, the average number of physicians consulted before receiving the correct diagnosis was 4.8. The Internet was basic source of information about children's disease. Although caregivers were to some extent satisfied with the quality of health care for CRD, they complained at the accessibility of health care and social services, physicians' ignorance regarding RDs, the lack of co-ordinated care and financial and psychological support. To break the cycle of the diagnostic and therapeutic odyssey that may aggravate the condition of CRD, cause parental stress and financial burden there is a need to change our view on CRD from cure to family-oriented care. Multifaceted challenges and needs of CRD families should be prioritized.

Evaluating the challenges and needs of parents caring for children with Williams syndrome: A preliminary study from Poland.

BACKGROUND: Although physical, cognitive and behavioural manifestations of Williams syndrome (WS) affect every dimension of caregivers lives, no studies on the parental experiences of caring for a WS child have to date been carried out in Poland. METHODS: In order to identify the challenges and needs of Polish carers of WS children a survey was conducted with 32 family caregivers who were supported by the Polish Williams Syndrome Association. RESULTS: While caregivers were mostly challenged by their WS child's behaviours, health problems and mood swings, many parents experienced fatigue, intimacy problems with the partner and deterioration of mental health. They were also burdened by the lack of time for themselves and work restrictions resulting from caregiving responsibilities. Even though parents positively assessed quality of medical care for WS children, still many expressed their dissatisfaction both with the way the healthcare system for WS children works in Poland and complained about the doctors' lack of knowledge about WS, access to specialist care and lack of support from government and social institutions. Although many parents stressed positive impact of rising WS child, more than half experienced role captivity or role overload and felt not being understood by others. They also experienced variety of distressing emotions, including impatience, emotional lability, helplessness, anxiety and depression. CONCLUSIONS: Although many WS parents stressed the affirmative aspect of raising WS child this research shows that the burden of caring for such a child goes far beyond clinical aspects and seriously affects every aspect of parents' lives, including their mental health, daily lives, family, their professional and social lives. Because apart from the daily challenges related to caring for a WS child, parents' dealings with the healthcare system and support services represent major problems there is a the need for a bio-psychosocial approach to WS that should include not only WS children, but also their caregivers. WHAT THIS PAPER ADDS?: 1. It analyses the challenges and needs of parents caring for children with Williams syndrome; 2. It provides evidence that the impact of caring for WS children goes far beyond clinical aspects and seriously affects every aspect of parents' lives, including their mental health, daily lives, family, their professional and social lives; 3. It also shows that, apart from the daily challenges related to caring for a WS child, parents' dealings with the healthcare system and support services represent major problems. 4. Thereby, it highlights the importance of incorporating a bio-psychosocial approach to WS that should include not only WS children, but also their caregivers.

Investigating Beliefs in Anti-Vax Conspiracy Theories among Medical Students.

While the doctors' role in immunization is essential, their lack of knowledge or vaccine hesitancy may affect their ability to communicate effectively and educate patients about vaccination, vaccine hesitancy, and vaccine conspiracy theories. This, in turn, may hinder health policy aimed at fighting infectious diseases. Vaccine hesitancy is prevalent not only among the general population but also among healthcare workers; thus, this study is aimed at assessing future doctors' attitudes towards anti-vax conspiracy theories. A total of 441 medical students at Poznan University of Medical Sciences completed a web-based survey designed to explore their attitudes toward the six most prevalent anti-vaccine conspiracy theories. The survey showed that although over 97% of future doctors support vaccinations as an effective form of fighting infectious diseases, and 80% did not believe in any anti-vax conspiracy theory, a significant fraction of 20% of medical students either believed in at least one such theory or were unsure. It has also shown that male and younger students who had not received a flu vaccination and defined themselves as politically right-wing or conservative and religious were more likely to believe in anti-vax conspiracy theories. Our data suggest that, in order to overcome medical students' ambivalent attitudes towards anti-vax conspiracy theories, they should receive more education about the importance of vaccination in preventing disease and about effective ways to combat vaccine hesitancy and anti-vax conspiracy theories.

Exploring the paradoxical nature of cold temperature mortality in Europe.

While low winter temperatures are associated with increased mortality, this phenomenon has been suggested to be most severe in regions with seemingly mild winters. The study aimed to establish a temperature-based formula that could elucidate the previously ambiguous regional differences in vulnerability to low temperature. European weekly mortality data (2000-2019) were matched with meteorological data to determine for each region vulnerability to temperature decrease and the optimal temperature with lowest mortality. Regression models were developed to generalize and explain these findings considering regional temperature characteristics. Optimal temperature could be predicted based on local average summer temperature (R2 = 85.6%). Regional vulnerability to temperature decrease could be explained by combination of winter and summer temperatures (R2 = 86.1%). Regions with warm winters and cold summers showed the highest vulnerability to decrease of temperature during winter. Contrary to theories about economic disparities Eastern Europe exhibited resistance comparable to Scandinavia. The southern edges of Europe demonstrated serious low temperature vulnerability to decreased temperatures, even if temperature was relatively high around 20 °C. This suggests that the observed connection primarily reflects the modulation of the length of respiratory virus infection seasons by climate conditions, counterbalanced by varying levels of acquired immunity and the presence of heatwaves eliminating the most frail individuals. Thus, relatively low vulnerability and a flat mortality cycle in countries with harsh climates paradoxically imply the presence of threats throughout the whole year.

Do biobanks need pharmacists? Support of pharmacy students to biobanking of human biological material for pharmaceutical research and development.

Objectives: This study aimed to assess the biobank awareness among Polish pharmacy students and how it affects their support for biobank research. Methods: A survey among 366 pharmacy students enrolled at two Polish medical universities: the Poznan University of Medical Sciences and Medical University of Lublin was conducted. Results: Although most pharmacy students felt positivity about biobanking and expressed the willingness to donate their biospecimens for biomedical research, their awareness on research biobanks was low. Their willingness to participate was driven by the desire to benefit society, help advance science and develop new therapies. While students supported donation for most types of research, biobanks run by medical universities were the highest trusted research institutions. The primary factors associated with student's willingness to participate were religiosity and place of study. Notably, nonreligious students and those studying in Poznan exhibited more favourable attitudes toward donating for research and expressed greater support for the establishment of research biobanks in Poland. Conclusion: Since biobank awareness among future pharmacists is inadequate incorporating biobank competency domains into education and training of pharmacists is required.

Support for Research Biobanks Among Medical Students in the Republic of Kazakhstan.

Background: Over the past few years, several biobanks have been organized in the Republic of Kazakhstan (RoK). As research biobanks are becoming an increasingly important tool for precision medicine, they require competent biobankers who will help disseminate the idea of biobanking throughout the society and support donation for research purposes. This study aimed to assess the support for research biobanks among medical students (MSs) in Kazakhstan. Methods: This research includes data from an anonymous, self-administered online questionnaire regarding MSs' support for research biobanks in the RoK. Results: Only 212 (31.3%) MSs have heard of biobanks and 466 (68.7%) have not. Students who were biobank-aware held more positive views regarding biobanks, were more likely to support the idea of establishing a research biobank in Kazakhstan, and expressed a greater willingness to donate their biological material for research purposes. Students' awareness of biobanks was also associated with the respondents' motivations to donate. Students who were familiar with biobanks tended to be motivated by altruistic reasons more often, and those unfamiliar with biobanks tended to indicate selfish motives. Students' attitudes toward donation to various types of research and biobanks were influenced by their awareness of biobanks, any family history of genetic disease, experience of chronic disease, declared religiousness, hospitalization history, blood donor status, and year of study. Conclusion: Since MSs' awareness of research biobanks is low, there is an urgent need for biobank education in Kazakhstan.

Caring for Children with Dravet Syndrome: Exploring the Daily Challenges of Family Caregivers.

While Polish studies focus on the symptoms, causes and treatment of people suffering from Dravet syndrome (DS), much less is known about the situation of the family caregivers of DS children. This study was designed to explore the experiences, daily challenges and needs related to caring for DS children. An anonymous self-administered online questionnaire was developed. The survey was completed by 75 family caregivers affiliated with the Association for People with Severe Refractory Epilepsy DRAVET.PL on Facebook. Most caregivers felt burdened by their children's reduced mobility (57.3%), mood swings (57.3%), lack of access to rehabilitation and medicine (56%) and healthcare expenses (50.7%). Caregivers also complained of a lack of time to themselves (76%) and work restrictions resulting from caregiving (72%). They consequently reported experiencing fatigue (84%), a deterioration of mental health (60%) and intimacy problems with their spouse/partner (53.4%). An important source of strain was a prolonged diagnostic odyssey and the constant struggle over the healthcare services for DS children. Since DS caregivers' problems and needs are often overlooked, they may be described as the forgotten people in DS. Healthcare professionals should be educated about the challenges related to caring for DS child, psycho-social status and coping resources of DS caregivers, and should focus on identification, monitoring and supporting caregivers' physical and mental well-being and needs.