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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Parental experiences and needs of caring for a child with 22q11.2 deletion syndrome.

BACKGROUND: For a variety of reasons, raising a child with 22q11.2DS has significant psychosocial and financial repercussions for the family caregivers. Our aim was to identify and explain the expectations and concerns of Polish parents of 22q11.2DS children. An online survey was developed consisting of four sections: demographics, emotions experienced by caregivers while performing their duties, attitudes of the respondents about providing care, and finally different aspects of the caregivers' life satisfaction. The study was conducted with the support of the Polish 22q11 Association. RESULTS: Forty-four caregivers of Polish origin completed the survey, all but one of whom were mothers. Thirty-four per cent (n = 15/44) declared full-time employment. According to 73% (n = 32/44) of those surveyed, the child's disease has not harmed their relationship with the partner. In spite of the fact that the median diagnosis time was 1.9 years (ranging from 0 to 12 years), the caregivers indicated that they had contacted on average 3.9 doctors before obtaining the right diagnosis (range 1-17). The Internet was the main source of information and knowledge about their child's disease for 93% of respondents (n = 41/44), while for 54% (n = 24/44) it was the association for people with 22q11DS. Only 26% rated as very good or good the support for caregivers offered by the central and local government or its agendas. The physicians' knowledge about 22q11DS was positively rated by 14% of respondents (n = 6/44). The most frequently chosen source of support for 66% of respondents (n = 29/44) turned out to be their families, and for 34% - a Facebook support group (n = 15/44). Asked how often they rated their quality of life (QoL) highly, none of our respondents chose the option "always", although 64% (28/44) gave the answer "often". CONCLUSION: Our study is the first one in Poland to develop an online survey specifically for use with caregivers of paediatric patients with 22q11.2DS. Our respondents revealed that caring for 22q11.2 children entails a burden that extends far beyond clinical facets and has a significant impact on every dimension of the caregivers' lives, including their mental health, everyday activities, families, professional career and social lives. At the same time, caregivers are de facto left alone with the bureaucracy of the healthcare system.

The Association Between Religion and Healthcare Professionals' Attitudes Towards the Conscience Clause. A Preliminary Study From Poland.

Objectives: This study was designed to determine the relationship between religion and healthcare practitioners' attitudes towards conscience clauses in Poland. Methods: We developed a survey assessing impact of religion on attitudes healthcare professionals towards the conscience clause. These questions were explored using a sample of 300 Polish healthcare professionals. Results: The results indicate that religiosity was a significant predictor of acceptance of conscience clauses. It also influenced healthcare practitioners' opinions on medical professionals that should be granted the right to conscience clauses and medical services that may be denied on moral grounds. There was also a significant relationship between healthcare practitioners' religiosity and their eagerness to use conscience clauses in a situation of moral conflict. Finally, religious healthcare practitioners were more concerned about the personal consequences of using this right in a medical environment. Conclusion: This study shows that at the same time, both religious and non-religious healthcare professionals believed that the Polish regulations regarding conscience clause are unclear and inaccurate, therefore leading to misinterpretation and abuse regulation of law.

From respiratory diseases to nervous system disorders: Unraveling the certified causes of influenza-associated deaths in Poland from 2000 to 2019.

Background: This study aims to accurately estimate influenza-associated deaths in Poland and their certified cause of death, due to significant discrepancies between official numbers and expected impact. Methods: Excess influenza-associated mortality in Poland from 2000 to 2019 was calculated using Seasonal-Trend Decomposition Procedure based on LOESS (STL), which can detect non-linear trends and non-sinusoidal cycles. Excess mortality was then used as an explanatory variable in a model predicting monthly fluctuations of officially recorded causes of death from 2010 to 2019. Results: A total of 142,000 conservative estimates of influenza-associated deaths were identified, representing 1.86% of overall mortality. Only 0.61% of influenza-associated deaths were officially recorded as influenza. Nearly half of certified influenza deaths were attributed to the seasonal baseline mortality, potentially doubling estimated impact based solely on influenza peaks. Influenza-associated deaths were frequently recorded as respiratory diseases (24.36%), with majority attributed to underlying conditions such as cardiovascular diseases (45.31%), cancer (9.06%), or diabetes (2.66%). Influenza-associated deaths were more commonly certified as nervous system diseases (1.84%) or mental disorders (1.04%), rather than influenza itself. There was a noticeable impact of influenza on secondary infections, such as meningococcal and gastrointestinal infections. Conclusion: These findings highlight the importance of improved estimation for informing public health policy decisions.

Cluster Donation: How Future Healthcare Professionals Bound Certain Types of Tissues and Biomedical Research and How It Affects Their Willingness to Donate.

Although biomedical research requires cooperation with a large number of donors, its success also depends on the input of healthcare professionals who play a crucial role in promoting biomedical research and influencing an individual's decision to donate one's biospecimens that are left over after a medical procedure. This work was aimed at investigating the correlation between medical and healthcare students' willingness to donate a biospecimen, the type of tissues to be donated, and the type of biomedical research to be conducted. A population survey among medical and healthcare students enrolled at the Poznan University of Medical Sciences was conducted on their attitudes toward the donation of human biological material for research purposes. A total of 1500 students responded and completed the survey. The questionnaire used multiple-choice closed-ended questions designed to explore medical and healthcare students' preferences for sharing particular types of tissues and donating to a particular type of biomedical research. It asked three questions: 1. Which type of tissue would people be willing to donate for research purposes? 2. Which organs would they be willing to donate after death? 3. What type of research would they be willing to donate to? While future healthcare professionals' beliefs regarding certain types of tissues and research can influence their willingness to donate for research purposes, many students tend to think about the body and biomedical research in terms of clusters. Consequently, their willingness to donate certain tissues for a particular type of research can affect their decision to donate other tissues. Our data suggest that cluster thinking with regard to donation can be a predictor of people's readiness to participate in the collection and management of biospecimens.

To vaccinate or to isolate? Establishing which intervention leads to measurable mortality reduction during the COVID-19 Delta wave in Poland.

Background: During the Delta variant COVID-19 wave in Poland there were serious regional differences in vaccination rates and discrepancies in the enforcement of pandemic preventive measures, which allowed us to assess the relative effectiveness of the policies implemented. Methods: Creating a model that would predict mortality based on vaccination rates among the most vulnerable groups and the timing of the wave peak enabled us to calculate to what extent flattening the curve reduced mortality. Subsequently, a model was created to assess which preventive measures delayed the peak of infection waves. Combining those two models allowed us to estimate the relative effectiveness of those measures. Results: Flattening the infection curve worked: according to our model, each week of postponing the peak of the wave reduced excess deaths by 1.79%. Saving a single life during the Delta wave required one of the following: either the vaccination of 57 high-risk people, or 1,258 low-risk people to build herd immunity, or the isolation of 334 infected individuals for a cumulative period of 10.1 years, or finally quarantining 782 contacts for a cumulative period of 19.3 years. Conclusions: Except for the most disciplined societies, vaccination of high-risk individuals followed by vaccinating low-risk groups should have been the top priority instead of relying on isolation and quarantine measures which can incur disproportionately higher social costs. Our study demonstrates that even in a country with uniform policies, implementation outcomes varied, highlighting the importance of fine-tuning policies to regional specificity.

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.

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.