Background: In Sweden the primary reason for heart transplants is severe heart failure. Heart transplants are performed both at Sahlgrenska University hospital and at Skånes University hospital. Patient undergoing several extensive investigations before he or she will be considered for the waiting list. Primary factor for receiving a heart is first of all the patient who is in the greatest need of a new heart and the patient most suited to receive the donated heart. Previous studies show that patients feel the waiting time to be unpredictable. Aim: To describe patients’ experiences of the time before a heart transplant. Method: Qualitative content analysis was used as the analysis method and seven blogs were applied. Results: Life is seen from a new and different perspective. A common factor for patients with heart failure was the physical limitation they felt. Life stopped for a while, and a waiting to regain “life” grew strong. Family and nursing staff was thought to play an important role. To maintain a positive attitude was thought to be a criterion to manage the anticipations. Conclusion: A patient waiting for a heart transplant experiences a change in their life world. To allow proper care it is important that the nurse recognizes this change and acknowledge it.

Bakgrund: För många svårt sjuka patienter med organsvikt är organtransplantation deras enda chans till ett bättre och längre liv. Till följd av stora förändringar och framsteg har transplantationen utvecklats, men bristen på organ är global och beror på allmänhetens inställning. Förlorad kontroll är den mest centrala upplevelsen och upplevelsen av oförutsägbarhet och osäkerhet under väntetiden. Lagar och författningar som styr organdonation och organtransplantation ser olika ut i världen. Sverige har en samtyckeslag som betyder att personen är positivt inställd till donation, men närstående har vetorätt och kan motsätta sig ingreppet. Syfte: Syftet var att beskriva patienters upplevelse av att vänta på organtransplantation. Metod: En litteraturstudie med induktiv ansats som omfattas av tolv artiklar varav en kvantitativ. Databaserna Cinahl Complete och PubMed användes. Genom hela gransknings- och analysprocessen användes Polit och Becks niostegsmodell. Resultat: Fyra kategorier framkom: ”fysiska symtom”, ”den psykiska upplevelsen av att vänta”, ”copingstrategier” och ”sociala begränsningar”. Diskussion: Två huvudfynd framkom; det första beskriver fysiska symtom som genererar sociala begräsningar och det andra beskriver hur patienterna utvecklar copingstrategier, för att hantera den psykiska upplevelsen av att vänta. Dessa diskuteras med stöd från annan forskning och Antonovskys förhållningssätt KASAM.

The New Zealand health system is two-tiered with elective treatments are performed by both publicly funded state hospitals and by private hospitals. Publicly funded operations are rationed using a prioritisation system which was introduced in 1998 to curtail expanding waiting lists for elective surgery. One of the aims of the new booking system was to generate national tools for prioritising patients in order to improve the equality of access to public elective surgery throughout New Zealand. However, priority scoring systems were not implemented in a consistent manner and access to elective surgery remains very unequal. Despite large media attention and a high public profile, waiting times have attracted little research in medical geography or within the wider social sciences community. The subject has been partly reserved for public health commentators within the medical field, who have found that variation in waiting times has much to do with the referral practices of physicians, the management of waiting lists by District Health Board (DHB) staff and the amount of private practice that occurs within each district. Most notably several studies have identified that in areas associated with high private admissions, patients tend to suffer higher waiting times for the same procedures in the public hospital system. This study examines the performance of the New Zealand Booking System (NZBS) during the years 2004 to 2007 to assess the equitable delivery of publicly funded elective surgery procedures. Waiting times (NBRS) and admissions (NMDS) datasets were sourced from the New Zealand Health and Information Service (NZHIS) of The Ministry of Health. Mean and Median waiting times were compared spatially between each of New Zealand’s 21 DHBs, compared with Australian waiting times and then broken down into five common medical specialties. Waiting times were then analysed by ethnicity, level of material deprivation and other individual factors using data from the 2006 New Zealand Census. Finally, rates of admissions were calculated for the public and private hospital sectors during the study period. These were used to correlate waiting times results with the amount of private practice in each DHB. ACC cases were extracted from the dataset to avoid bias in waiting times as much of this work is contracted out to the private sector and not subject to lengthy waiting times for treatment. A number of medical specialists and hospital administrators were interviewed to discuss results, explain prioritisation tools and management practices. Results showed large variations in the median waiting times of New Zealand DHBs. A north south gradient is observed in which southern DHBs suffer longer waits for care. Vastly better results were observed for Australian public hospitals than those seen in New Zealand. For waiting times as determined by individual factors, Maori and Pacific Island patients and those from lower socio-economic backgrounds suffered longer waiting times nationwide although, in certain DHBs inequalities for access to elective surgery were exacerbated. However, ethnic differences were more pronounced than socio-economic variations. Admissions results showed significant positive correlations between the amount of private practice and the waiting times experienced in each DHB which are supported by previous research. Feedback from interviews confirmed inconsistency in the use of scoring tools, manipulation occurring on behalf of the DHB management to achieve performance goals set by the Ministry of Health and provided some further explanation of the other quantitative results. Access to elective surgery is determined partly by location of residence, ethnicity, deprivation and where hospital resources are located but most importantly by the willingness to pay for treatment within the private hospital sector and the ability to manipulate the public prioritisation system.

Introduktion/Bakgrund: Transplantation är en livräddande behandling som erbjuds när ingen annan behandling leder till förbättrat tillstånd. Organbristen är idag större än utbudet som finns för organ. Väntelistan för att få ett nytt organ är lång och som konsekvens av detta kan individer avlida innan transplantation. Det finns levande och avlidna donatorer, där levande donatorer behöver öka i antal för att utveckla möjligheten till fler organtransplantationer. Det är angeläget att sjuksköterskan tillgodoser andliga, existentiella, sociala och psykiska behov i lika stor utsträckning som fysiska behov avseende omvårdnadsinterventioner. Syfte: Undersöka hur individer beskriver väntan på en organtransplantation. Metod: Litteraturstudien har framställts genom Polit och Beck’s (2017) nio steg och är systematiskt utformad genom datainsamling från databaserna Cinahl, PubMed och PsycINFO. Resultatet inkluderar elva vetenskapliga artiklar, varav nio kvalitativa och två kvantitativa studier. Resultat: I litteraturstudien identifierades fyra kategorier; en evig kamp, brist på frihet, det okända och livet med andra som beskriver väntan. Slutsats: Litteraturstudiens resultat beskriver upplevelser av både negativ och positiv karaktär. Begränsningar i livet är främst vad som påverkar välbefinnandet hos individer och bidrar även till psykologiska utmaningar. Väntetiden är en individuell upplevelse där information och stöttning från sjuksköterskan är angeläget för att förebygga ohälsa.

Background: Organ transplantation is an established form of treatment applied worldwide, which saves many lives. There is however, an imbalance between supply and demand for organs, which means that the patients on the waiting list for organs often have to stay there for a long time. In worst case, they die before a suitable organ is found. Patients waiting for vital organs are therefore in a very exposed situation and this causes many feelings. Aim: The aim of the study was to describe patients´ experiences while waiting for vital organs. Method: A literature based study analysing twelve qualitative studies, that based onpatient interviews describe the patients' experiences while waiting for vital organs. Results: The result showed that patients felt bound, both physically and mentally. They experienced anxiety and stress during the long wait for an organ but had also hope forrecovery and wished to be able to return to a normal life. Information and support were an important part of getting through the wait. Two themes appeared during the analysis; To hope and to understand, the mixed emotions and To be bound and to be in need. Conclusion: All patients' experiences were individual, although there are many similarities in how they experienced waiting for vital organs, especially regarding emotions. Hope was a prerequisite for patients while waiting for a vital organ, as it servesas a driving force to hold out during their uncertain life situation.

Bakgrund: Organtransplantation är en rutinmässig behandling i vården. Ett underskott på organ gör väntetiden lång, vilket leder till långa väntetider och medför oro och rädsla. När en människa placeras på väntelistan är en organtransplantation den sista utvägen eftersom organet är så pass skadat. Syfte: Syftet var att belysa patientens upplevelse av väntan på en organtransplantation. Metod: Studien är en litteraturstudie med induktiv ansats där åtta artiklar ligger till grund för resultatet. Datan analyserades och delades in i kategorier och subkategorier med utgångspunkt från syftet. Resultat: Tre huvudkategorier med tillhörande subkategorier framkom; Känslor till följd av väntandet på en organtransplantation, Behovet av stöd och information och Ett begränsat liv. Patienter som väntar på en organtransplantation upplevde osäkerhet och oro för döden blandat med hopp inför framtiden. Denna osäkerhet kunde kännas större vid upplevd brist på information från vården. Begränsningen i vardagen upplevdes svår och då blev stödet från sjuksköterskor och anhöriga viktigare, tillsammans med att skapa strategier för att hålla hoppet uppe. Konklusion: Litteraturstudien visar att upplevelsen av väntan på en transplantation är liknande runt om i världen. Det finns ett behov av information och stöd från sjuksköterskan då detta skapar mer trygghet. Det är av vikt för sjuksköterskan att ha en förståelse för denna patientgrupp. / Background: Organ transplantation is a routine treatment in modern healthcare. Due to lack of organs in relation to the need, waiting is increased which causes anxiety and fear for patients. When a person is placed on the waiting list, an organ transplant is the last resort since the organ is highly damaged. Aim: The aim was to illustrate the patient’s experience of waiting for an organ transplant. Method: This study is a literature study and have an inductive approach and is based on eight articles. The data was analyzed and categorized in regard to the aim. Results: The result reports three categories and associated subcategories; Feelings about waiting for an organ transplant, The need for support and information and A limited life. Patients experience uncertainty and anxiety during the waiting time and a fear of death alongside hope. The uncertainty grew with lack of information from care givers. Limitations of daily life perceived tough hence the nursing and family support became paramount, all together creating strategies to inspire hope. Conclusion: The literature study shows that the waiting experience for a transplant is similar around the world. There is a need for information and support from nurses, therefore, the nursing sympathy, information and knowledge is essential in creating a safe environment.

Hensikt: Hensikten med undersøkelsen var å beskrive, og å oppnå større forståelse for, hvordan ventelistepasienter ved Klinikk for ortopedi og revmatologi og pasientrepresentanter fra Brukerutvalget ved St. Olavs Hospital i Trondheim oppfattet ventetiden og kontakten med sykehuset i påvente av undersøkelse og behandling. Kunnskapen skal brukes til å forbedre informasjonen til og kommunikasjonen med ventelistepasientene. Metode: Datainnsamling ble gjort ved 24 individuelle intervju med pasienter fra ventelistene og et gruppeintervju med pasienter i en offisiell rolle som medlemmer av sykehusets Brukerutvalg. Analysen av intervjuene ble gjort med fenomenografisk tilnærming. Resultat: To sammenhengende hovedtema fremkom, der tema om Daglig liv som ventelistepasient dominerte over tema om Informasjon og kommunikasjon i ventetiden. De to tema ble belyst med seks hovedkategorier med til sammen 20 underkategorier som viste at ventelistepasientene opplevde en hverdag med mye smerter og hindringer i forhold til tidligere funksjonsnivå. De var lite opptatt av generell informasjon og hvordan den skriftlige informasjonen så ut. Den informasjon de hadde fått ble oppfattet som grei nok, men inneholdt ikke de opplysninger de hadde behov for. Det viktige var å få personlig, lett forståelig og forklarende informasjon av legen ved den polikliniske undersøkelsen der de eventuelt ble søkt til innleggelse og operasjon; på et tidlig tidspunkt i ventetiden få en konkret operasjonsdato å forholde seg til; få målrettet informasjon om hvordan de kunne forberede seg på operasjonen og tilrettlegge for seg selv etter operasjonen; at det var noen å komme i kontakt med hvis de ønsket det. I tillegg til samsvarende oppfatninger med ventelistepasientene var deltakerne fra Brukerutvalget mer opptatt av og kritisk til informasjonens innhold og form enn pasientene i de 24 individuelle intervjuene. Konklusjon: Pasientene ønsket kontroll over livet i ventetiden ved å få konkret og personlig informasjon om operasjonsdato, hensiktsmessige forberedelser, hva og hvordan i forhold til operasjon og rekonvalesens. Først når dette var oppfylt kunne de vise en begrenset interesse for informasjonens utforming / Aim: The aim of the study was to describe and achieve a greater understanding of how patients on the waiting list for surgery at the Department of Orthopaedic Surgery and Rheumatology and the group of patient representatives (Brukerutvalget) at St. Olav’s University Hospital in Trondheim experienced the waiting time and the contact with the hospital. The knowledge shall be used to improve the information to and the communication with patients on waiting list. Method: The data collection was done through 24 individual interviews with patients on waiting lists and one group interview with four of the patients having an official role as members of the hospital’s group of user representatives. The analysis of the interviews was done by a phenomenographic approach. Results: Two related main subjects appeared of which the subject of the daily life as a waiting list patient dominated over the subject of the information and communication received during the waiting time. These two subjects were illustrated by six main categories and 20 subcategories which showed that the waiting list patients experienced a daily life with much pain and hindrances compared to their earlier level of functionality. They were to a small degree interested in any general information and how the general information was presented. The information they had received was conceived as satisfactory, but did not contain the information they needed. The important thing was to get personal, easy to understand and well explained information from the doctor during the visit at the outpatient clinic, when they were eventually sought referred to the hospital for admission and operation, to get a fixed time for the operation early in the waiting time, to get systematic information about how to prepare for the operation and how to organize themselves after the operation, and finally that there should be a person to contact if they needed to. In addition to perceptions common with the waitinglist patients the participants from the group of user representatives were more concerned with and critical to the contents and presentation of the information than the patients from the 24 individual interviews. Conclutions: Personal and relevant information was needed to cope with the daily life. Not till the patients knew about a fixed time for the operation, appropriate preparations, the surgery and convalescence they could show a limited interest for the shaping of the information / <p>ISBN 978-91-85721-15-3</p>

Introdução: As doenças respiratórias ocupacionais constituem um grave problema de saúde pública na realidade brasileira. A silicose é a pneumoconiose mais prevalente, considerada a principal causa de invalidez entre as doenças respiratórias ocupacionais e pode desenvolver uma forma grave de pneumopatia fibrosante levando a insuficiência respiratória crônica onde apenas o transplante pulmonar é a terapia capaz de re-estabelecer a qualidade de vida e assim prolongar a sobrevida destes indivíduos. Objetivo: Fazer uma revisão sistemalizada da literatura sobre o tema “transplante pulmonar” e “silicose” e “sobrevida”, além de avaliar o resultado do transplante pulmonar realizado em pacientes com silicose em estágio terminal, comparando as alterações de função pulmonar entre aqueles submetidos à cirurgia com aqueles que não foram operados, além de detectar os fatores prognósticos que podem influenciar a sobrevida dos pacientes submetidos a este procedimento. Métodos: Após uma busca sistematizada na literatura sobre o tema, 40 artigos foram analisados, sendo que 13 destes descorriam sobre o tema, e cinco tratavam exclusivamente de transplante de pulmão em silicose avançada. Posteriormente, foram retrospectivamente estudados os prontuários de 26 pacientes listados para tranplante pulmonar por silicose pulmonar em estágio terminal, no período entre janeiro de 1989 até junho de 2015 pelo grupo de Transplante Pulmonar da Santa Casa de Porto Alegre – RS. As características epidemiológicas, as medidas de função pulmonar analisadas através de espirometria, teste de caminhada de 6 minutos, teste de difusão do monóxido de carbono, medidas de pressões da artéria pulmonar, foram comparadas entre os grupos transplante versus não transplante. As variáveis categóricas são apresentadas em números absolutos e/ou porcentagem. O pequeno número da amostra não foi suficiente para garantir a normalidade e os dados foram analisados através dos testes não paramétricos do qui-quadrado (x2), teste de Mann Whitnney e teste de Friedman. Para as análises pareadas, foi utilizado o teste de Wilcoxon. Para amostra menor que 5, o teste de exato de Fisher. As variáveis analisadas em relação aos eventos relacionados com mortalidade, foram estudadas através da correlação de Spearman. O sobrevida até o desfecho, estabelecida através da curva de Kaplan-Mayer. Foram assumidos valores de p < 0,005 como os de significância estatística. Resultados: Todos eram homens, com idade de 45,4 + 11 anos, sendo o extrativismo mineral responsável por 44,0% das ocupações. O padrão restritivo observado em 65,4 % dos casos onde 82,3% destes tinham CVF < 40,0% do previsto (CVF de 27,07 + 16,0%) com DLCO 39 + 6,2%, demostrando limitação funcional importante, marcada por uma distância percorrida no TC6M muito curta, 267,4 + 104,5 metros com dessaturação de 10,7 + 5,4%. A história de tabagismo foi observada em 46,2% e de tuberculose em 34,6%. A sobrevida global dos pacientes listados foi de 693,5 (46 – 5.250) dias, todavia no subgrupo dos pacientes transplantados foi de 1.226 (60 – 5.250) dias contra 288 (46 – 1.333) dias nos não transplantados (p= 0,002). A sobrevida após o transplante foi 889 (3 – 5.176) dias, sendo de 85,7% no 1o mês, 69% no 1o ano, 44,0% em três anos e 25,0% em cinco. Apenas o tempo de isquemia foi significamente maior no grupo que faleceu (p= 0,042), entretanto, na análise multivariada, pôde-se perceber que o tempo de isquemia (p= 000, Ro= - 0,842), o tempo de ventilação mecânica (p= 0,045, Ro= - 0,507) e o tempo de permanência dos drenos (p= 0,025, Ro= - 0,558), tiveram impacto negativo sobre a sobrevida. Conclusão: Embora ainda não sejam claros os critérios de indicação de transplante em silicose avançada, observamos que os pacientes mais emagrecidos e possivelmente desnutridos, assim como aqueles com pior função pulmonar, tendem a morrer mais precocemente sem o procedimento. Por outro lado, no grupo de pacientes operados, um tempo de isquemia prolongado, o sangramento transoperatório (desde o ato cirúrgico até a retirada dos drenos) visto através da permanência dos drenos de tórax e a duraçao da ventilação mecânica invasiva, estiveram relacionados com óbito. Ainda que esta série seja a maior encontrada de transplante pulmonar por silicose realizada em um único centro, um número maior de pacientes deve ser estudado e acompanhados para que estas e outras questões possam ser elucidadas. / Background: Occupational respiratory diseases are a serious public health problem in Brazil. Silicosis is the most prevalent pneumoconiosis, considered the leading cause of disability among occupational respiratory diseases. It may develop a severe form of lung fibrosis, leading to chronic respiratory failure, where only therapy that can re-establish the quality of life, and thus prolong the survival of these individuals is lung transplantation. Purpose: To evaluate the outcome of lung transplantation performed in patients with silicosis in terminal stage, comparing the changes in lung function among those undergoing surgery with those who did not undergo surgery, and detect prognostic factors that may influence the survival of patients undergoing this procedure. Methods: We performed a systematic literature review for key words “lung transplantation”, “silicosis”, “survival”, and found 40 articles, wherin 13 adressed this specific theme, and only five exclusivelly to lung transplantation due advanced (end-stage) silicosis. Then, we retrospectively studied the medical records of 26 patients listed for lung tranplante by pulmonary silicosis in terminal stage, in the period from January 1989 to June 2015 by the Lung Transplant group of Santa Casa de Porto Alegre - RS. Epidemiological characteristics, lung function measurements analyzed by spirometry, 6-minute walk test, carbon monoxide diffusion test, pressure measurements of the pulmonary artery, were compared between the transplant versus not transplantation groups. Categorical variables expressed as absolute numbers and/or percentage. The small sample size was not sufficient to ensure the normality, and data were analyzed using non-parametric tests of the chi-square (x2), Mann Whitnney, test and Friedman test. For paired analysis, the Wilcoxon test was used. Sample less than 5, Fisher's exact test was used. The variables analyzed related to mortality were studied by Spearman correlation. The survival rate until the outcome, established by Kaplan- Mayer curve. Values os p <0.005 assumed as statistical significance. Results: All were men, aged 45.4 + 11 years, the mineral extraction accounted for 44.0% of occupation. The restrictive pattern observed in 65.4% of cases where 82.3% of them had FVC <40.0% of predicted (FVC 27.1+ 16,0%) with DLCO 39 + 6.2%, showing significant functional limitation, marked by a very short distance in the 6MWT, 267.4 + 104.5 meters with desaturation 10.7 + 5.4%. A history of smoking was observed in 46.2% and tuberculosis in 34.6%. The overall survival of patients was found 693.5 (46 - 5,250) days, however the subgroup of transplant patients was 1.226 (60 - 5,250) against 288 days (46 - 1,333) in the non-transplanted days (p = 0.002). The survival after transplantation was 889 (3 - 5.176) days, and 85.7% were alive at the first month, 69.0% at 1st year, 44.0% at three years, and 25.0% at five. Only the ischemic time was significantly higher in patients who died (p = 0.042), however, in the multivariate analysis, it was possible to realize that the ischemic time (p = 000, rs = - 0.842), the duration of mechanical ventilation ( p = 0.045, rs = - 0.507) and the drains length of stay (p = 0.025, rs = - 0.558), had a negative impact on survival. Conclusion: Although advanced silicosis in transplant indication criteria are still unclear, we found that the most emaciated and possibly malnourished patients, and those with poor lung function, tend to die earlier without the procedure. On the other hand, those that were operated, a prolonged ischemic time, intraoperative bleeding (from the surgery to the removal of drains) seen through the permanence of thoracic drains, and the duration of mechanical ventilation, were related to death. Although this series is the largest found related to lung transplantation due end stage silicosis performed at a single center, a larger number of patients should be studied and monitored for these and other questions can be clarified.

Organtransplantation är för vissa svårt sjuka individer den enda möjliga behandlingen till ett fortsatt liv. För dessa individer är väntan på organtransplantation av lever, hjärta eller lunga ofta en oviss väntan på en livsviktig operation. Denna väntan innebär en förändring och begränsning i individens vardag och påverkar inte bara individen själv utan även närstående. Detta är en upplevelse få personer kan föreställa sig. Syftet är att beskriva upplevelsen hos vuxna individer som väntar på transplantation av livsviktiga organ; lever, hjärta och lunga. Denna litteraturstudie bygger på nio kvalitativa vetenskapliga artiklar som har sökts fram av författarna i väsentliga referensdatabaser. Data analyserades enligt Axelssons (2012) modell för litteraturstudier. Studien resulterade i sex teman samt sex subteman. Resultatet visar hur individer i behov av organtransplantation upplever väntan på operation, samt vad sjuksköterskans roll har betytt i omvårdnaden. En upplevelse av ovisshet och maktlöshet var framträdande, men även hopp och glädje. Hos sjuksköterskan och övrig vårdpersonal önskas och behövs en förståelse för vad individer som väntar på organtransplantation upplever och genomgår. Detta för att i mötet kunna ge bästa möjliga stöd och omvårdnad. Sjuksköterskans information till individerna som väntar på organtransplantation samt dess närstående visade sig vara betydelsefull. Likaså visar studien hur och varför sjuksköterskans stöd under väntan på organtransplantation var av vikt för dessa individers upplevelser. / Program: Sjuksköterskeutbildning

At California State University San Bernardino, students can ordinarily register online and join waiting lists when a course is full. However, the system does not support waiting lists when a course has associated laboratory sections. This project addresses this problem.