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Background: Interprofessional collaboration is an important part of palliative care. Effective communication and information exchange is essential for a high quality of care. The aim of this study was to test the effectiveness of a new tool for exchanging information between professionals in palliative care on primary healthcare level. Methods: With suggestions from the experts regarding palliative care needs in an interprofessional team from the Delphi study and community nurses from the field, we developed a paper version of the tool. The paper version was tested in a pilot phase, and subsequently, we conducted ten semi-structured interviews with the users of the new tool to test its feasibility and usability. The data were analyzed using qualitative content analysis, leading to improvement and development of the digital version of the new tool. Results: After completing the pilot phase of the research, we identified the following four categories: a systematic tool for more consistent treatment and better communication during the patient’s visit; training and empowerment; quality, safety and digitalization; these categories were later included in the final version of the digital communication tool. Conclusion: Effective palliative care requires a good exchange of information and communication between all care professionals who work with the patient. Effective communication contributes to making patients and their relatives feel safe in their home environment and allows patients to stay in their homes even as their disease progresses. The systematical new tool was assessed as useful to improve interdisciplinary cooperation and prepared in a digital version. Further research after the long-term use of the developed digital tool in everyday work might confirm its sustaining importance. Version of record

Hintergrund: Die Covid-19-Pandemie hat insbesondere AllgemeinmedizinerInnen vor große Herausforderungen gestellt. Im Hinblick auf die zunehmende Feminisierung der (Allgemein-) Medizin erscheint eine genauere Betrachtung der geschlechtsspezifischen Unterschiede bei der Bewältigung der Pandemie [zum vollständigen Text gelangen Sie über die oben angegebene URL]

The second International Last Aid Conference Online was held on 30th October 2020 with 174 participants from 18 countries. The main topics of the conference were the social impact of palliative care, public palliative care education (PPCE) and experiences with Last Aid Courses from different countries. Invited lectures and submitted abstracts on these topics highlighted the need for PPCE. The experiences with Last Aid Courses for both adults and children, as well as the Online Last Aid courses that were developed during the COVID-19 pandemic were presented. This conference report provides an overview of the topics and the content of the presentations. The second International Last Aid Conference Online was held on 30th October 2020 with 174 participants from 18 countries. The main topics of the conference were the social impact of palliative care, public palliative care education (PPCE) and experiences with Last Aid Courses from different countries. Invited lectures and submitted abstracts on these topics highlighted the need for PPCE. The experiences with Last Aid Courses for both adults and children, as well as the Online Last Aid courses that were developed during the COVID-19 pandemic were presented. This conference report provides an overview of the topics and the content of the presentations.

The Last Aid Course can be seen as the educational basis of compassionate communities. Research has to be an integral part of the Last Aid project. The scientific evaluation of Last Aid started at the same time as the implementation of the first pilot courses in Germany, Norway and Denmark. To ensure the quality of Last Aid Courses and to improve the curriculum and contents of the course scientific evaluation of the views of citizens, Last Aid Course instructors, educators and researchers are of outmost importance. Several pilot studies and papers on Last aid have already been published. The Last Aid Research Group Europe (LARGE) has been established in 2019 in order to coordinate international cooperation and research on Last Aid. Results of the LARGE meeting before the conference will be presented.Future aims for research projects should include the evaluation of the effects of Last Aid Courses on citizens preparedness and willingness to participate in end-of-life care and the possible contribution of the courses to increase the number of home deaths. Another interesting topic for the instructors and researcher should also be the need of the multicultural community and the needs of the minority groups in the last part of the life. It is important to know the preferences and expectation if we would like to fulfil it and upgrade our courses.Topics to discuss:1. Tools for evaluations of the LAST AID curse (questionnaire)2. How to meet needs of the minority groups?3. How to address cultural diversity in our program?

Background/aims: The European Palliative Care Academy (EUPCA) introduced a European Leadership Course, funded by the Robert Bosch Foundation. Since 2013 three groups of leaders, 59 participants, from different professions and several European countries have been educated. Within the EUPCA strategy was the formation of an alumni network. The aim of our project was to establish an official EUPCA Alumni Network as a meeting platform to discuss leadership issues and to serve as a European palliative care think tank.Methods: A group of leaders, from varying backgrounds, professions and countries, from the European Palliative Care Academy met in September 2018 in order to discuss the formation of a EUPCA Alumni Network. After a meeting within this group a steering committee was formed and meetings with the EUPCA steering committee and the Bosch foundation were held during the EAPC congress in May 2019. All EUPCA alumni were invited to join the network.Results: The initiative led to the formation of a EUPCA Alumni Network. The EUPCA alumni steering committee has 7 members from different European countries and professional backgrounds. The first EUPCA alumni think tank meeting will be held March 11-13th 2020 in Valeta, Malta. To date 21 of the 59 participants have already registered to participate. The alumnis’ wishes for the network are: 1. further education and exchange regarding leadership issues; 2. collaboration in international project implementation, delivery and research; 3.advocacy and policy making. The EAPC taskforce Last Aid and the Last Aid Research Group Europe (LARGE) have been initiated by EUPCA alumni.Conclusion: The EUPCA Alumni Network has been established and will hopefully serve further cooperation and education of European Palliative Care Leaders from all over Europe. Additionally ongoing projects, run by the alumni members, may influence the future practice of Palliative Care. One Example is the Last Aid Research Group Europe (LARGE). Results from the Malta Conference will be presented.

Background/aims: Many people want to die at home, yet in westerncountries many die in institutions like hospitals and nursing homes. Thedeveloped Last Aid project helps to educate citizens about the basics ofpalliative care and care for dying people. More than 15.000 citizens havealready participated at the Last Aid courses and more than 1500 trainershave been trained across various European countries such as Denmark,Germany, Switzerland, Germany, Lithuania, Austria, Scotland, Estonia andSlovenia. The second step of the international research group, is to assessthe effectiveness of the program.Methods: After literature research and semi-structured interviews wewill develop and validate a questionnaire for assessing the effectivenessof the program. The developed questionnaire will be utilised in the secondphase of the international project.Results: As a result of an intensive community-based intervention programraising awareness of palliative care 15.000 citizens and 1500 trainershave been educated. Assessing the effectiveness of the program isthe second phase of the Last Aid project. For this purpose, we willdevelop a culturally sensitive questionnaire and use the questionnaire toevaluate and refine the program in the future.Conclusions: A community-based program for raising awareness aboutpalliative care could be effective. Through a developed and validatedevaluation and iterative adaptions of the program based on the needs ofthe community we could see a more effective and efficient method ofsocial education. Future research will be carried out in cooperation withthe Last Aid Research Group Europe (LARGE).

Introduction: Family history (FH) is an important part of the patients' medical history during preventive management at model family medicine practices (MFMP). It currently includes a one (or two) generational inquiry, predominately in terms of cardiovascular diseases, arterial hypertension, and diabetes, but not of other diseases with a probable genetic aetiology. Beside family history, no application-based algorithm is available to determine the risk level for specific chronic diseases in Slovenia. Methods: A web application-based algorithm aimed at determining the risk level for selected monogenic and polygenic diseases will be developed. The data will be collected in MFMP; approximately 40 overall with a sample including healthy preventive examination attendees (approximately 1,000). Demographic data, a threegenerational FH, a medical history of acquired and congenital risk factors for the selected diseases, and other important clinical factors will be documented. Results: The results will be validated by a clinical genetic approach based on family pedigrees and the nextgeneration genetic sequencing method. After the risk of genetic diseases in the Slovenian population has been determined, clinical pathways for acting according to the assessed risk level will be prepared. Conclusion: By means of a public health tool providing an assessment of family predisposition, a contribution to the effective identification of people at increased risk of the selected monogenic and polygenic diseases is expected, lessening a significant public health burden.

Objectives: Health-related quality of life (HRQoL) measures a patient's subjective experience of his or her health status. We aimed to show how the presence of chronic diseases and satisfaction with family physicians (FPs) were associated with the HRQoL of a Roma population. Methods: A cross-sectional study was carried out in May 2011 on a representative sample of 650 Roma living in Prekmurje, Slovenia. The EQ-5D questionnaire was used for measuring the HRQoL of the Roma. Demographical data, 12 groups of diseases diagnosed in the last 12 months and satisfaction with FPs were included in the questionnaire. Results: The response rate was 88.3% (574), of which 56.4% were female, and the average age of the participants had a mean value of 40.2+-12.7 years. The presence of cardiovascular problems with risk factors for them or presence of musculoskeletal disorders were strongly associated with the presence of pain (Cramer's V = 0.40 and 0.46 respectively). There was a strong association between the presence of mental disorders and anxiety and depression (Cramer's V = 0.58). The average satisfaction with the family physician was 3.9 (mean+-1.10) on a five-point Likert scale. There was no significant association between HRQoL and satisfaction with the family physician. Conclusions: Roma with chronic mental health problems had the lowest HRQoL in the Roma population. More attention should be paid to this subgroup of Roma in family medicine, and interventions should be provided. High satisfaction with their FPs is not associated with the observed quality of life variables. Uvod: Z zdravjem povezana kakovost življenja (HRQoL) je odraz pacientove subjektivne ocene lastnega zdravstvenega stanja. V naši raziskavi smo skušali ugotoviti, kakšen je vpliv nekaterih kroničnih bolezni in zadovoljstva z izbranim zdravnikom na HRQoL med romskim prebivalstvom. Metode: Maja 2011 smo izvedli presečno raziskavo v reprezentativnem vzorcu 650 pomurskih Romov. HRQoL smo merili z vprašalnikom EQ-5D vključili smo še demografske podatke, zadovoljstvo z izbranim družinskim zdravnikom in 12 bolezenskih stanj, ki so bila diagnosticirana v zadnjih 12 mesecih. Rezultati: Odzivnost je bila 88,3-odstotna (574), 56,4 % je bilo žensk in povprečna starost sodelujočih je bila 40,2 +/- 12,7 leta. Nizek HRQoL v skupini s srčno-žilnimi boleznimi z dejavniki tveganja zanje in kostnomišičnimi boleznimi je bil močno povezan s prisotnostjo bolečine (Cramer z V = 0,40 in 0,46). V skupini z duševnimi težavami pa je bila močna povezava nizkega HRQoL s prisotnimi znaki anksioznosti in depresije (Cramer z V = 0,58). Povprečno zadovoljstvo z zdravnikom družinske medicine je bilo 3,9 (mediana +/- 1,10) na pettočkovni Likertovi lestvici. Ni bilo statistične povezave med HRQoL in zadovoljstvom z zdravnikom družinske medicine. Zaključki: Romi s prisotnostjo duševnih težav imajo najnižji HRQoL v romskem prebivalstvu. Več pozornosti bi v družinski medicini morali posvetiti tej podskupini Romov. Zadovoljstvo z zdravnikom družinske medicine ni povezano z opazovanimi spremenljivkami kakovosti življenja.

Introduction: When the Roma fell ill in the past, they used herbal home remedies to treat diseases. If the remedy failed to cure the illness, they called the local healer. Today, most Roma visit physicians. This study investigates health beliefs and practices held by the Roma people in Slovenia and their response to febrile illnesses. Methods: Field interviews using a semi-structured questionnaire were conducted in the vicinity of Kočevje. Sociodemographic data were gathered and recorded manually, and the interviews were tape recorded. Qualitative analysis was performed by three researchers. Special attention was paid to data validation. Results: The majority of Roma are not acquainted with thermometers and therefore do not use them. About onethird of the interviewees knew what the normal body temperature should be. Only 15% of the Roma population take their body temperature when they are feeling unwell. One-half visit their physicians. More than half of the population take paracetamol or aspirin when they feel feverish. More often, they resort to tea and emphasize the healing effect of sweating. Conclusion: The Roma beliefs and practices regarding health and fever are instructive and show how impoverished a narrow biomedical approach can be. Failure to use technical devices, such as thermometers, and lack of familiarity with the numerical values defining the border between normal and elevated body temperature, nonetheless do not mean that the Roma take inappropriate measuresin response to illness. Illnesses (including fever) can also be recognized without these tools and can be appropriately responded to by drinking teas, using compresses, and taking fever-reducing medications. Uvod: V preteklosti so Romi za zdravljenje uporabljali domače zeliščne pripravke. Kadar ta zdravila niso bila učinkovita, so poklicali lokalnega zdravilca. Danes večina Romov obišče zdravnika. V prispevku ugotavljamo, kakšno je prepričanje in ravnanje slovenskih Romov v zvezi z zdravjem in kako ukrepajo pri vročinskih stanjih. Metode: V okolici Kočevja smo na terenu izvedli intervjuje na osnovi polstrukturiranih vprašalnikov. Zbrane sociodemografske podatke smo ročno zapisovali, pogovore pa smo posneli. Kvalitativno analizo podatkov so izvedli trije raziskovalci. Posebno pozornost smo namenili validaciji podatkov. Rezultati: Večina Romov ne pozna termometra in ga zato tudi ne uporablja. Približno ena tretjina vprašanih je vedela, kakšna naj bi bila normalna telesna temperatura. Ob slabem počutju si le 15 odstotkov romskega prebivalstva meri telesno temperaturo. Polovica jih obišče zdravnika. Več kot polovica romskih prebivalcev vzame paracetamol ali aspirin, kadar ima vročino. Pogosteje se zatečejo k pitju čaja in poudarjajo zdravilne učinke potenja. Zaključek: Prepričanja in ravnanje Romov v zvezi z zdravjem in povišano telesno temperaturo so poučna in nam kažejo, kako osiromašen je lahko ozko usmerjeni biomedicinski pristop. Dejstvo, da Romi ne uporabljajo tehničnih pripomočkov, npr. termometra, in ne poznajo številčne vrednosti, ki loči med normalno in povišano telesno temperaturo, še ne pomeni, da ob bolezni ravnajo neustrezno. Bolezenska stanja, tudi povišano telesno temperaturo, lahko prepoznamo tudi brez teh orodij in se jim ustrezno postavimo po robu s pitjem čaja, z uporabo obkladkov in z jemanjem zdravil proti vročini.

Introduction: Slovenia has a high level of alcohol consumption. Comparisons of the alcohol consumption habits of the Roma and non-Roma population have yielded conflicting results. The aim of this research was to compare alcohol consumption habits between Roma and non-Roma in a sample population in Northeastern Slovenia. Methods: We conducted a cross-sectional study in which we included 100 representatives of Roma and 100 representatives of non-Roma population, aged 18 to 65 years. The questionnaire used included demographic data (gender, age, marital status, education, and employment) and the AUDIT (Alcohol Use Disorders Identification Test) questionnaire. Two logistic regression models (teetotallers/drinkers and non-hazardous drinkers/other drinkers) were used for the comparison of drinking habits. Results: Roma scored lower on overall AUDIT score (4.51) than non-Roma (4.56). Roma and non-Roma differ significantly regarding teetotallers (39.0 % vs. 16.0 %) and non-hazardous drinkers (38.0 % vs. 64.0 %). Ethnicity was identified to have a statistically significant impact on the studied drinking behaviour: teetotallers (p < 0.001) and non-hazardous drinkers (p = 0.015). Discussion and conclusion: Our aim was to look at the differences between the two groups rather than obtain representative data on the population. Our research also casts a doubt on whether the AUDIT questionnaire is suitable for measuring alcohol abuse. Uvod: Visoka stopnja uživanja alkohola je posebej značilna za severovzhodni del naše države. Študije, kjer so glede pitja alkohola primerjali romsko in neromsko populacijo, navajajo nasprotujoča si dejstva. Cilj raziskave je bila primerjava navad pitja alkohola med Romi in Neromi na vzorcu prebivalcev severovzhodne Slovenije. Metode: Opravljena je bila presečna raziskava, ki je vključevala 100 predstavnikov Romov in 100 predstavnikov Neromov, starih od 18 do 65 let. Uporabljeni vprašalnik je vključeval demografske podatke (spol, starost, zakonski stan, stopnja izobrazbe in zaposlitev) in podatke vprašalnika AUDIT (Alcohol Use Disorders Identification Test). Za primerjavo pivskih navad sta bila uporabljena dva logistična regresijska modela (abstinenti/pivci in manj tvegani/ostali pivci). Rezultati: Z vprašalnikom AUDIT je bilo za Rome ugotovljeno nižje povprečno število točk (4,51) kot za Nerome (4,56). Skupini se bistveno razlikujeta po številu abstinentov (Romi: 39,0 %, Neromi: 16,0 %) in manj tveganih pivcev (Romi: 38,0 %, Neromi: 64,0 %). Na pivsko vedenje ima etnična pripadnost statistično značilen vpliv, kar velja tako za abstinente (p < 0,001) kot tudi za manj tvegane pivce (p = 0,015). Diskusija in zaključek: Namen raziskave ni bilo zbiranje reprezentativnih podatkov o prebivalstvu, ampak ugotavljanje razlik med obravnavanima skupin

Namen: Pilotni projekt SASTIPE je nastal na podlagi opažanja raziskovalcev, da se Romi niso udeleževali programov promicije zdravega življenja v lokalni skupnosti. Naraščajoče breme kroničnih obolenj in zavedanje Romov o pomenu zdravega načina življenja je botrovalo razvoju programa promocije zdravega življenjskega sloga za romsko skupnost, ki je bil izveden v romskih naseljih. Metode: Program se je izvajal v 9 romskih naseljih od decembra do marca 2013. Za pripravo delavnic na temo sladkorne bolezni, KOPB, zdrave prehrane in visokega krvnega tlaka ter urgence smo uporabljali specifičen material, ki smo ga pripravili skupaj z Romi. Podatke smo zbirali s pomočjo prilagojenega in validiranega EUROPREV I n EuroQUoL vprašalnika pred in po intervenciji. Rezultate, dobljene po intervenciji, smo primerjali s kontrolno skupino v kateri ni bilo nobenih aktivnosti, in so nam služili za oceno učinkovitosti programa. Stopnja odzivnosti je bila v kontrolni skupini 74 % in v interventni 53 %. Rezultat: Interventni program je prispeval k statistično značilnemu povečanju znanja o nekaterih opazovanih medicinskih parametrih v interventni skupini (p < 0.001). Zaznali smo tudi spremembe v zavedanju o pomenu zdravega življenjskega sloga. Statistično več Romov iz interventnih naselij je začelo razmišljati o spremembi kadilskih navad (p < 0.001). Zaključek: Dokazali smo, da je v sodelovanju s ciljno skupino možno razviti uspešen interventni program. Dosegli smo izboljšanje znanja, več Romov se je ob koncu intervencije v interventni skupini zavedalo pomena zdravega življenjskega sloga in potrebne spremembe kadilskih navad. Za oceno dolgoročnih sprememb življenjskega sloga so potrebne nadaljnje raziskave in dolgotrajnejše opazovanje.