Academic literature on the topic 'Swedish palliative register'

Background: The complexity of end-of-life care, represented by a large number of units caring for dying patients, different types of organizations and difficulties in identification and prognostication, signifies the importance of finding ways to measure the quality of end-of-life care. Aim: To establish, test and manage a national quality register for end-of-life care. Design: Two questionnaires were developed with an attempt to retrospectively identify important aspects of the care delivered during the last week in life. An internet-based IT platform was created, enabling the physician and/or nurse responsible for the care during the last week in life to register answers online. Setting: Units caring for dying people, such as hospital wards, home care units, palliative in-patient care units and nursing facilities. Results: The register received status as a National Quality Register in 2006. More than 30,000 deaths in nursing facilities, hospital wards, palliative in-patient units and private homes were registered during 2010, representing 34% of all deaths in Sweden and 58% of the cancer deaths. Conclusions: We have shown that it is feasible to establish a national quality register in end-of-life care and collect data through a web-based system. Ongoing data analyses will show in what way this initiative can lead to improved quality of life for patients and their families. There is an ongoing process internationally to define relevant outcome measures for quality of care at the end-of-life in different care settings; the registry has a potentially important role in this development.

ABSTRACTObjective:Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes.Method:Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics.Results:The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place.Significance of results:There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.

Background Our knowledge of the outcome of patients with relapsed/refractory diffuse large B-cell lymphoma (R/R DLBCL) in the rituximab era is mostly derived from randomised controlled trials or specialized center cohorts presenting selected patient materials. With new targeted therapies being evaluated in the relapsed/refractory setting such as CART therapy, there is a need for a better understanding of the expected survival in real-world cohorts of R/R DLBCL and the likelihood of patients being selected for established intensive treatment schedules and consolidation with autologous stem cell transplantation (ASCT). Here we investigated timing of relapse, treatment intensity and outcome among patients with R/R DLBCL in a nationwide population-based cohort. Methods Patients with R/R DLBCL (N=713) were identified among all patients with a first incident DLBCL diagnosed 2007-2014 recorded in the Swedish Lymphoma Register and treated with primary anthracycline-based immunochemotherapy (N=3528), with follow-up until December 31st 2018. The register holds information about clinical characteristics at diagnosis, primary treatment, treatment response and relapse. Data regarding treatment response and relapse was validated through medical chart review in the entire cohort and information about second-line treatment and ASCT was collected. Timing of progression/relapse was categorized by time interval in months from diagnosis (0-12, 12-24, 24+). Treatment intensity was categorized in four groups: intensive chemotherapy (e.g., DHAP, ICE, GDP) with intent of ASCT, remission-inducing chemotherapy (e.g., GemOx, IME, Benda), palliative therapy (oral chemotherapy, radiotherapy) and no active antitumoral treatment (e.g., steroids, best supportive care). Second-line treatments could have been given with or without immunotherapy. Overall survival probabilities were estimated in the entire cohort and by age >/≤ 70 years using the Kaplan-Meier method. Results In the study population of 713 patients (59% men), median age at relapse was 71 years (range 18 to 95) and 61% had stage IV disease. Most patients relapsed within 12 months (N=428, 60%) whereas 135 patients (19%) relapsed 12-24 months from diagnosis and 148 patients (21%) after 24 months. In patients ≤70 years of age, intensive chemotherapy with intent of ASCT was started in 206 out of 354 patients (58%) and 124 (35%) subsequently received a consolidative ASCT. Remission-inducing chemotherapy was given to 95 patients (27%), 22 (6%) received palliative treatment directly and 31 (9%) were deemed unfit for any active treatment. Among patients >70 years at relapse, 63 patients started intensive chemotherapy (18%) and 4 (1%) were eventually transplanted, whereas another 127 (35%) received remission-inducing chemotherapy, 92 (26%) palliative therapy directly and 77 (21%) no active therapy. Overall survival in the entire cohort was 26% at 2 years (Figure 1A). Timing of relapse strongly correlated with survival, primarily among patients <70 years of age (2-year OS was 21% for 0-<12, 38% for 12-24 and 77% for 24+) (Figure 1B). By treatment intensity, outcomes also varied more among young patients in favor of the intensive chemotherapy with intent of ASCT (with 39% 2-year OS). Among young patients, timing of relapse correlated with the possibility to give consolidative ASCT (23% in early relapse vs >50% in relapse 12 months or after). Among patients >70 years, outcomes were strikingly poor in all treatment intensity groups (2-year OS 23% or lower). Conclusion In the population-based setting, less than 60% of patients with R/R DLBCL ≤70 years at relapse could go on to receive curative intent second-line treatment and only about one third were consolidated with ASCT (even fewer among those with early relapse). Among patients >70 years, outcomes were very poor and second-line treatment intensity seemed to have little impact on outcome, although there were a few longer-term survivors in all treatment groups. More efficient and less toxic therapies are urgently needed for R/R DLBCL at all ages. Figure 1 A-C Overall survival of patients with relapsed/refractory diffuse large B-cell lymphoma in Sweden 2007-2014 (N=713) in the entire cohort (1A), by age >/≤ 70 years and timing of relapse (0-<12, 12-24, 24+ months of diagnosis) (1B) and by age >/≤ 70 years and treatment intensity categorized in 4 groups (1C). Disclosures Ekstroem Smedby: Janssen Cilag: Honoraria, Other: Grant funding, Research Funding; Celgene: Honoraria, Other: Grant funding, Research Funding; Takeda: Honoraria, Other: Grant funding, Research Funding. Ekberg:Swedish Cancer Society: Other: This project was partly funded by the Swedish Cancer Society; Janssen Pharmaceuticals: Other: This project was partly funded through a private-public collaboration between KI and Janssen pharmaceuticals.. Eloranta:Karolinska Institutet: Other: coordinator for a public-private real world evidence; Janssen Pharmaceuticals.: Other: project coordinator for a public-private real world evidence. Enblad:Kite/Gilead: Membership on an entity's Board of Directors or advisory committees. Jerkeman:Janssen: Honoraria, Research Funding; Gilead: Honoraria, Research Funding; Acerta: Honoraria, Research Funding; Celgene: Honoraria, Research Funding; Roche: Honoraria, Research Funding. Andersson:Gilead: Research Funding; Gilead, Janssen and Roche: Consultancy; Abbvie and Janssen: Membership on an entity's Board of Directors or advisory committees. Harrysson:Swedish Cancer Society: Other: This project was partly funded by the Swedish Cancer Society.; Janssen pharmaceuticals: Other: This project was partly funded through a private-public collaboration between KI and Janssen pharmaceuticals..

Contact with the next of kin to a deceased person by a Nurse, may help the grieving family to gain closure as many family members feel a need to express their emotional grief. According to the WHOs definition of Palliative care supportive conversation and practical support is a necessity and an important part of the palliative care. Ruland and Moores Peaceful End-of-Life Theory has been used as a theory and an important part is to pay attention to how the relatives are feeling, for example symptoms of grief and anxiety and to answer their questions. The purpose of the study was to describe if geographical location, place of death, medical diagnosis and age affect if bereavement support is offered by the Health care to the next of kin within palliative care. Method: Retrospective time line to discover and examine how conversational support was offered. A quantitive method was chosen to enable the data to be analyzed statistically. To collect data the Swedish Palliative Register where used. Results: Larger numbers of the smaller municipalities proved to be better at offering conversational support in comparison to larger municipalities. Most offers for conversational support was in the case of cancer diagnosis, regardless of age. Families that lived in small municipalities where the patient was being treated for cancer 0-4 years with access to specialized palliative care proved to hold the greatest possibility of conversational support. Implication: There is a continuing need for further research in bereavement support and with a qualitative interview study of district nurses there is an ability to capture the factors that affect when bereavement support is not offered to all relatives.
Ett efterlevandesamtal mellan de anhöriga och distriktssköterskan en tid efter dödsfallet kan hjälpa familjen att få ett avslut och många anhöriga önskar att få tala om sin sorg efter sin bortgångna närstående. Enligt WHO:s definition är samtalsstöd och praktiskt stöd en nödvändighet och en viktig del av den palliativa vården. Ruland och Moores teori Peaceful End-of-Life Theory skriver att en viktig del i teorin är att uppmärksamma anhörigas mående, till exempel symtom på sorg och oro samt besvara deras frågor. Syftet med studien var att beskriva om geografisk plats, dödsplats, diagnos och ålder påverkar erbjudandet från hälso-sjukvården om efterlevnadssamtal till anhöriga inom palliativ vård. Metod: Kvantitativ retrospektiv metod har valts för att kunna undersöka bakåt i tiden hur efterlevandesamtal har erbjudits, kvantitativ  metod valdes för att det insamlade materialet skulle kunna analyseras. Data samlades in via Svenska Palliativregistret. Resultat: Några av de mindre kommunerna var oftast  bättre på att erbjuda efterlevandesamtal än större kommuner. Den diagnos som gav flest erbjudna efterlevandesamtal var cancerdiagnos oavsett ålder. Störst möjlighet för närstående att erbjudas efterlevandesamtal har de där den avlidne var mellan 0-4 år, vårdades för cancersjukdom och bodde i en liten kommun med tillgång till specialiserad palliativ vård. Det behövs mer forskning om efterlevandesamtal och genom en kvalitativ intervjustudie av distriktssköterskor finns möjligheten att fånga upp deras uppfattning om vad som påverkar att efterlevandesamtal inte erbjuds till alla närstående.

Bakgrund: Trycksår är en lokal skada av huden. Skadan ligger ovanför ett benutskott och orsakas av tryck eller en kombination av tryck skjuvning eller friktion. Smärta från trycksåret är ett vanligt förekommande problem som påverkar livskvaliteten negativt. Syfte: Syftet med studien var att undersöka förekomsten av trycksår i livets slutskede samt att se om personer med smärta och trycksår är smärtskattade med VAS/NRS. Syftet var även att se om det fanns något samband mellan trycksår och smärta. Metod: Metoden som använts var en retrospektiv deskriptiv undersökning med kvantitativ ansats. Insamling av data skedde via frågor tagna ur dödsfallsenkäten. Uppgifterna togs ur Svenska palliativregistret samt via journalgranskning. Resultat: Förekomsten av trycksår under 2008-2010 var mellan 29 - 33 %. Under perioden dog 95 (30 %) personer med trycksår, 83 % av dessa trycksår var kategori 1 eller 2 sår. Av de som avled med trycksår upplevde 78 % smärta sista veckan i livet, 59 % hade smärtskattats med VAS/NRS där det visade sig att 69 % skattade över 3 på VAS/NRS skalan. Medianen på VAS/NRS var 6. Inget signifikant samband mellan trycksår och smärta påvisades. Slutsats: Personal som vårdar personer i livets slutskede bör ha en god kunskap om hur, var­för och när trycksår uppkommer mot slutet av livet och även ha ökad kunskap om kroppens smärtmekanismer samt vilken symtomlindring som fungerar. Nyckelord: god död, palliativvård, cancer, Svenska palliativregistret.
Background: Pressure ulcers are a local damage of the skin. The damage is above a bony prominence caused by pressure or a combination of pressure shear and friction. Pain from the pressure ulcer is a common problem that affects quality of life negatively. Aim: The aim of this study was to investigate the incidence of pressure ulcers in palliative care and to see if people with pain and pressure ulcers are pain assessed by VAS/NRS. The aim was also to see if there was any correlation between pressure ulcers and pain. Method: The method used was a retrospective descriptive study with quantitative approach. Data collection was done through questions taken from the Swedish death inquiry. The data were taken from the Swedish palliative register and through journal review. Results: The incidence of pressure ulcers during 2008-2010 was between 29 – 33 %. During the period died 95 (30%) with pressure ulcers, 83% of these pressure ulcers were category 1 or 2 wounds. Of those who died with pressure ulcers 78 % experienced pain last week of life, 59 % had pain assessed by VAS/NRS that showed that 69% estimated above 3 on the VAS/NRS scale. The median on VAS/NRS was 6. No significant correlation between pressure ulcers and pain were found. Conclusion: Staff who care for people in end of life care should have a good knowledge of how, why and when pressure ulcers occur towards the end of life, they should also have greater knowledge of the body's pain mechanisms and pain relief that works. Keywords: Good death, palliative care, cancer, Swedish palliative register.

Bakgrund: Palliativ vård syftar bland annat till att lindra lidande och symtom som smärta och ångest. För att kunna bedöma, utvärdera samt lindra symtomen behövs smärtskattningsinstument användas. Att lindra dessa symtom främjar livskvaliteten hos patienter i en palliativ fas. Genom det Svenska palliativregistret finns möjlighet att sammanställa och utvärdera information som kan främja forskning och därmed bidra till ett minskat lidande. Syfte: Syftet är att undersöka förekomst av smärta och smärtlindring i livets slutskede samt se i vilken utsträckning validerade instrument används. Syftet är också att undersöka om det finns någon skillnad mellan smärta och olika bakgrundsvariabler. Metod: Denna studie är en deskriptiv studie av kvantitativ design och är utformad med hjälp av retrospektiv registerdata. Datan insamlades genom det Svenska palliativregistrets dödsfallsenkät. 1435 patienter inkluderades som hade vårdats på olika palliativa vårdformer inom Uppsala och Enköping.   Resultat: Resultatet visar att smärtskattningsinstrument används i en bristande utsträckning inom den palliativa vården, då endast 56 % utav de som hade smärta också smärtskattades. När det gäller smärtlindring så blev 69 % utav patienterna helt och 30 % delvis smärtlindrade. Vid analysen utav samband mellan smärtlindring och vissa dödsplatser så visade resultatet att det fanns en signifikant skillnad. Samma resultat framkom även gällande analysen utav samband mellan vissa grundsjukdomar och upplevelsen utav smärta. Upplevelsen utav smärta samtidigt som upplevd ångest visade sig ha ett samband. Slutsats: Detta område är relativt outforskat, vilket gör att mer forskning behövs. Resultatet från denna studie kan användas som ett underlag för framtida forskning.
Background: Palliative care is intended to alleviate suffering such as pain and anxiety. By using pain measurements instruments these symptoms can be assessed, evaluated and alleviated. The patients life quality is promoted by alleviating these symptoms. Through the Swedish Register of palliative care there is a possibility to compile and evaluate information that can promote research and thereby contribute to a reduced suffering. Aim: The aim is to investigate the presence of pain and pain treatment in end of life care and also to learn in which extent validated pain measurements instruments are used. The aim is also to investigate whether there is a difference between pain and different background variables. Method: This is a descriptive study of a quantitative design and is shaped with retrospective registry data. The data was collected through the Swedish register of palliative cares’ death questionnaire. 1435 patients were included who had been cared in different forms of palliative care in Uppsala and Enköping. Result: The result shows that pain measurement instruments are used in a lacking extent in palliative care, where 56 % of those who experienced pain were pain estimated. When it comes to pain estimation this study shows that 69 % of the patients were completely relieved of their pain and 30 % were partly relieved. The analysis of the connection between pain treatment and some death places showed that there is a significant difference. The same result also appeared in the analyze of the connection between some background diseases and the experience of pain. The experience of pain was shown to have a connection with the experience of anxiety. Conclusion: This area is relatively unexplored, which means more research is required. The results of this study could be used as a basis for future research.

Syfte: Syftet med studien är att studera i hur stor omfattning patienter är omgivna av andra i dödsögonblicket i palliativ vård och undersöka om det finns formulerade omvårdnadsmål i patienters IVP gällande vården i livets slutskede. Metod: Studien är kvantitativ retrospektiv med deskriptiv och analytisk design. I studien ingår samtliga cancerpatienter (n= 316), som vårdats och dött på en vårdavdelning och ASIH (avancerad sjukvård i hemmet) i Stockholm samt registrerats i Svenska palliativregistret (n=295). Resultat: Studien visade att i åldersgrupperna 75-84 år och 85 eller äldre var det fler som dog utan någon närvarande vid dödsögonblicket än i övriga åldersgrupper. Patienter dör utan att någon närvarande vid dödsögonblicket i ungefär lika stor omfattning i urvalet som på övriga palliativa enheter i Sverige. Resultatet visade att 62 % av de granskade journalerna hade omvårdnadsmål dokumenterade i IVP. Konklusion: Studien visar att närvaron vid dödsögonblicket sjunker när åldern stiger och att patienter dör utan någon närvarande vid dödsögonblicket i samma omfattning i urvalet som på övriga palliativa enheter i Sverige. Studien klarlägger även bristen på omvårdnadsmål i patienters IVP, vilket belyser ett förbättringsområde för att säkerställa kvaliteten på vården av patienter i livets slutskede.
Aims: The aim was to study the extent to which patients were surrounded by others at the time of death in palliative care and examine whether there were individual care plans, (IVP) in the patients nursing documentation regarding End-of-Life Care. Method: The study is quantitative retrospective with descriptive and analytical design. And includes all cancer patients (n = 316) who received care and died on a palliative care unit ward and ASIH (advanced medical care at home) in Stockholm and was registered in the Swedish palliative registry (n = 295). Results: In the age groups 75-84 years and 85 years or older, patients are more likely to die without someone present than in the other age groups. Patients are dying without anyone present in the same extent as in other palliative care units around Sweden. Only 62% of the sample had nursing goals documented in the patients IVP. Conclusion: The study illustrates that patients are surrounded by others in the same extent as in other palliative care units around Sweden. The study clarifies the lack of nursing goals in patients IVP, which highlights an area for improvement to ensure the quality in the End-of-Life care.