Bakgrund: Antalet patienter i behov av njurtransplantation per år är cirka 400-500, varav endast cirka 350 kommer att bli transplanterade. Bristen på organ är tydligt framträdande. I väntan på transplantation behöver patienten dialysbehandling, vilket ofta upplevs vara tidskrävande och utmattande. Sjuksköterskor bör ha kunskap om patienters upplevelser i samband med väntan på transplantation för att kunna utvecklas i sin roll som sjuksköterska och få en djupare förståelse för deras situation. Syfte: Syftet var att beskriva kroniskt njursjuka patienters upplevelser av att leva med dialysbehandling och väntan på transplantation. Metod: Studien är en litteratursammanställning av tio kvalitativa och kvantitativa vetenskapliga artiklar inom området, vilka har granskats, analyserats och sammanställts. Resultat: I resultatet framkom flera olika upplevelser, så som längtan efter frihet, utmattning, höga förväntningar, frustration och rädsla inför framtiden i samband med dialysbehandlingen och väntan på transplantationen. Slutsats: Kroniskt njursjuka patienters upplever sin situation som psykiskt, fysiskt och socialt påfrestande. En av sjuksköterskans viktigaste uppgifter i samband med bemötandet av patienter under dialysbehandling är att vara tillgänglig. Med en tillgänglig och öppen inställning till patienterna blir sjuksköterskan mer mottaglig för patienternas individuella behov. / Background: The number in need of kidney transplants per year is approximately 400-500, of which only about 350 will be transplanted. The shortage of organs is clearly prominent. In anticipation of the transplant patient needs dialysis, which is perceived to be time consuming and exhausting. Nurses should have knowledge of patients' experiences in connection with awaiting transplantation to be able to evolve in her role as a nurse and get a deeper understanding of the patients’ situation. Aim: The aim of this study was to describe patients’ experiences of living with chronic kidney failure with dialysis and awaiting transplantation. Method: The study is a literature compilation of ten qualitative and quantitative scientific articles in the field. The articles have been reviewed, analyzed and compiled. Results: The results revealed several different experiences, such as yearning for freedom, fatigue, high expectations, frustration and fear for the future in connection with the dialysis treatment and awaiting transplantation. Conclusion: Chronic kidney disease patients perceive their situation as mentally, physically and socially stressful. One of the nurse's most important tasks in connection with the treatment of patients in dialysis is to be available. With an accessible and open approach to the patient in general, a nurse becomes more responsive to patient's individual needs.

SAMMANFATTNING Syftet med föreliggande studie var att undersöka dialyssjuksköterskors upplevelse i mötet med en patient som vill avsluta, eller som inte är kapabel att uttrycka sig kring, sin livsuppehållande dialysbehandling. En deskriptiv intervjustudie med kvalitativ ansats utfördes på två dialysmottagningar i Mellansverige. Innehållsanalys av intervjuerna genomfördes vilket gav fem huvudkategorier; sjuksköterskors upplevelse av bristfällig kommunikation och samarbete med läkare, sjuksköterskors upplevelse av läkares svårigheter att diskutera avslutande av dialysbehandling, sjuksköterskors upplevelse av att vårda patienter som inte är kapabla att uttrycka sig kring sin dialysbehandling, sjuksköterskors upplevelse av att vårda patienter som säger, eller på något annat sätt uttrycker, att de vill avsluta sin dialysbehandling och sjuksköterskors upplevelse av stöd och samtal i vården kring patienter som vill avsluta sin dialysbehandling. Huvudresultatet visar att dialyssjuksköterskor upplever många etiska dilemman i mötet med denna patientgrupp. Mötet med en patient som säger, eller på något annat sätt uttrycker att de vill avsluta behandlingen upplevdes positivt, dock upplevdes innebörden av uttrycken ibland vara svåra att tolka. Sjuksköterskorna upplevde det många gånger frustrerande att vårda en patient som inte är kapabel att uttrycka sin vilja om fortsatt eller avslutande dialysbehandling. Slutsatsen var att ytterligare forskning inom detta område är nödvändig för att rutiner och riktlinjer skall kunna utformas. / ABSTRACT The aim of the study was to investigate the dialysis nurses' experience of meeting with a patient who wants to end, or a patient who is not able to express itself about, its life-sustaining dialysis treatment. A descriptive interview study with qualitative approach was used on two dialysis centers in central Sweden. Content analysis of the interviews were conducted which resulted in five main categories: nurses' experience of poor communication and cooperation with physicians, nurses' experience of physician's difficulty to discuss the closure of the dialysis treatment, nurses' experience of caring for patients who are unable to express themselves about their dialysis treatment, nurses' experience of caring for patients saying, or otherwise expressing, that they want to end their dialysis treatment and nurses' experience of support and conversations in health care, around patients who want to end their dialysis treatment. The main result shows that dialysis nurses experience many ethical dilemmas facing these patients. The meeting with a patient saying, or otherwise expressing, that they want to end their dialysis treatment was perceived positively, however, could the meaning of the expression sometimes be difficult to interpret. The nurses, often times, felt frustrating to care for a patient who is unable to express themselves about their dialysis treatment. The conclusion was that further research in this area is necessary so that procedures and guidelines can be designed.

Using Ontario health administrative data, we identified 12,143 adults with chronic kidney disease (CKD) who received outpatient nephrology care prior to start of renal replacement therapy (RRT) in order to study the effect of care-related factors in predicting late start of predialysis care (PDC, defined as first outpatient nephrology visit <6 months prior to RRT start) and to explore covariates which further quantify the PDC received. Lack of an usual provider of primary care (OR 0.76; 95%CI 0.66, 0.87) predicted late start of PDC. In addition to late start of PDC, number of nephrology visits (OR 0.97 per visit; 95% CI 0.96, 0.98), and having seen a nephrologist in only 1 or 2 of the 6 months prior to RRT start (OR 1.33; 95%CI 1.18, 1.51), were also independent predictors of one-year mortality, suggesting that other measures of PDC are needed to better characterize the care received.

Using Ontario health administrative data, we identified 12,143 adults with chronic kidney disease (CKD) who received outpatient nephrology care prior to start of renal replacement therapy (RRT) in order to study the effect of care-related factors in predicting late start of predialysis care (PDC, defined as first outpatient nephrology visit <6 months prior to RRT start) and to explore covariates which further quantify the PDC received. Lack of an usual provider of primary care (OR 0.76; 95%CI 0.66, 0.87) predicted late start of PDC. In addition to late start of PDC, number of nephrology visits (OR 0.97 per visit; 95% CI 0.96, 0.98), and having seen a nephrologist in only 1 or 2 of the 6 months prior to RRT start (OR 1.33; 95%CI 1.18, 1.51), were also independent predictors of one-year mortality, suggesting that other measures of PDC are needed to better characterize the care received.

Sleep problems affect a considerable number (49-86%) of patients undergoing peritoneal dialysis (PD) treatment. Insomnia i.e. difficulties to initiate and/or maintain sleep or too early wakening, combined with daytime symptoms, seems to be the dominating problem. Despite these facts there is a lack of research in PD-patients, especially studies with objective data on the sleep-wake cycle and evaluation of sleep promoting non-pharmacological  interventions. The overall aim of this thesis was to describe sleep problems from different perspectives, and how these problems affect daily life and health in patients treated with PD at home. The aim was also to evaluate an individualised non-pharmacological intervention for improvement of sleep quality outcomes. Four studies were conducted during eight years, starting in 2002. Patients from six hospitals in the south-east of Sweden were invited to participate. In addition, data from a reference group with Coronary Artery Disease and a population group were used for comparisons with PD-patients in one of the studies. Data was collected by self-reported questionnaires, actigraphy registrations and interviews. Sleep was evaluated in a 17-week single-case study with an intervention focusing on sleep hygiene advice. Data from a total of 700 sleep-wake cycles was collected in the patients’ homes. The main findings clearly demonstrated that PD-patients have seriously fragmented sleep compared to the CAD- and population group, and that the PD-patients have a high prevalence of insomnia. The sleep was mainly disturbed by pruritus and Restless Legs Syndrome (RLS). Daytime impairments and a frequent napping behaviour were detected. The prevalence of fatigue was also reported to be extremely high. The patients described that an ever-present tiredness and poor sleep had consequences in their everyday life both physically, mentally, socially and existentially. The nurse-led intervention demonstrated that individual, non-pharmacological sleep interventions can improve sleep and daytime activities in PD-patients. This thesis elucidates that deteriorated sleep with serious fragmentation leads to a variety of daytime impairments and fatigue. By adopting “renal supportive care” in clinical work a more elaborate assessment and individualised non-pharmacological treatment of sleep problems may improve sleep quality and activity in frail patients undergoing peritoneal dialysis at home.

Antalet personer med kronisk njursvikt ökar i Sverige, orsakat av att diabetesnefropati ökar, som en följd av att allt fler får diabetes mellitus typ 2. Peritonealdialys är en behandling för personer med kronisk njursvikt och kan skötas i hemmet. Syftet med studien är att beskriva hur peritonealdialys inverkar på dagligt liv bland personer med kronisk njursvikt. Studien genomfördes som en allmän litteraturstudie och vetenskapliga artiklar har sökts via elektroniska databaser och manuella sökningar. Femton artiklar granskades och analyserades med hjälp av innehållsanalys. Resultatet visade fyra kategorier som utgjordes av oberoende, delaktighet, förändring av välbefinnande och ny medvetenhet om kroppen. De olika kategorierna beskrev peritonealdialysens inverkan på personernas dagliga liv. Genom delaktighet i behandlingen får personen ett oberoende i dagligt liv. Förekomst av fatigue, oro och förändrad kroppsuppfattning kan inverka på personens livskvalitet. Behandling med peritonealdialys har inverkan både på den enskilde personen och på familjen. En beskrivning av peritonealdialysens inverkan på dagligt liv, kan förbereda distriktssköterskan i mötet och omvårdnaden av personer med peritonealdialysbehandling. / The number of persons with chronic renal failure is increasing in Sweden, caused by an increasing number of diabetes nephropathia, as a result of a larger number of diabetes mellitus type 2. Peritoneal dialysis is a treatment for persons with chronic renal failure and can be performed at home. The aim of the study is to describe the influence of peritoneal dialysis in the daily life of persons with chronic renal failure. The study was implemented as a general literature study and scientific articles have been acquired via electronic databases and manual searches. Fifteen articles were reviewed and analysed through content analysis. The results showed four categories consisting of independence, participation, change in well-being and new awareness of the body. The different categories described influence of peritoneal dialysis in daily life. By means of participation in the treatment the person gets independence in daily life. The existence of fatigue, anxiety and change of body image can influence a person’s quality of life. Treatment with peritoneal dialysis can influence both the individual and the family. A description of influence of peritoneal dialysis in daily life can prepare the district nurse in the meeting and nurturance of persons with peritoneal dialysis.

In Taiwan, the nephritis, nephrotic syndrome and chronic renal failure are occupied the eighth of compatriot's ten major causes of the death; Due to medical improvement in recent years, end stage renal disease with long term hemodialysis patients were increasing day by day, the dialysis cost also go up year by year. According to the statesment of Bureau of National Health Insurance, the whole Taiwan dialysis patients were about 50,000 persons, expensed 28,100 million dollars in one year , each dialysis patient expense 600,000 dollars every year on average, it is the first of clinical expenses . In recent years, the dialysis suppliers get involved in the business of the dialysis clinics, they already were not only the large international factory for selling dialysis material, but also get involved in dialysis clinics about dealing , buying and combining resources, so the dialysis clinics form the two kinds of different manageable type :dialysis supplier and independent operator. This research was cross- sectional study and divided dialysis clinics into dialysis supplier and independent operator, the study choose the different kinds of dialysis clinic patients as samples from Kaohsiung and Pingtung area and carry on the interview of questionnaire by the bedside. Through analyzing the patient¡¦s idiosyncrasy, affect patients in choosing health care providers, patient's satisfaction, life quality, life impact after kidney disease and paying medical care quality indicator of dialysis clinics (average serum albumin with the whole people's clinic of health insurance, dialysis efficiency equally to life), probe into the difference between two kinds of different manageable type of dialysis clinics. The descriptive statistical analysis, explored factor analysis, dependent sample analysis of variance, independent sample analysis of variance and Pearson product-moment correlation analysis, etc. method were employed as statistical analysis. The result of study found, the top five expected satisfaction level of hemodialysis patient were avablility to the peritoneum dialysis service, avablility to consultation of kidney transplantation , medicine safe to value , nutritionist for diets consultation , the availability of nephrology specialists , the expected satisfaction level relatively lean to the professional service , but patient satisfaction relatively lean to the hardware service actually. The whole satisfaction of independent operator in the operation service , professional service , extra service , public relations , geographical position are all superior to dialysis suppliers. The dialysis supplier was superior to the independent operator only in the hardware service. Through this research, hope to make the officer in dialysis center, realize the demand of patients,and offer better service as improving direction in medical quality.

The development of hemodialysis clinics in Taiwan has been rapid for about 17 years. In early days, many patients with no health insurance had to get hemodialysis at their own expense. Therefore, they often suffered pulmonary edema caused by breathing difficulties, and quickly rushed into medical centers and then stayed almost all night in the emergency of dialysis. Dialysis clinics were not very popular in communities at that time. Dialysis payment firstly was paid by civil servant insurance then Labor Insurance came second; followed by Agricultural Insurance, and eventually developed into the National Health Insurance. Among them, those dialysis patients are actually the primary beneficiaries. The National Health Insurance gives rise to a large number of community-based dialysis clinics to set up massively. The free competition creates a high-quality dialysis environment. The Japanese people are impressed by both the hardware and software of dialysis clinics. Japan dialysis payment is about 3.75 times of Taiwan. In recent years, the financial deterioration of health care benefits caused a decline in the value of pay- points! And the discussion about health insurance rates is not rationally debated by our society .As a result, the survival of dialysis clinics is really becoming a serious issue. The Taiwanese hemodialysis clinics are still able to provide high-quality dialysis services to the community. Such a successful experience in the Chinese region will surely set a practical example for China, which is in its rapid economic development and has a gradual increase in health insurance coverage now. Besides, the difficulty that faces China is the long serious shortage of basic dialysis medical supplies! So we hope to bring our experience in Taiwan to China dialysis clinics for the future planning in primary health care in the operation and management of dialysis. This research has done the literature review, expert interviews, and service pathway system. According to the three key elements, we analyze and find that Taiwan's experience in China is based on the critical success factors from expert opinions and clinics operation core. This study summarizes and organizes in the paper the following points: 1.service pathway system 2. hemodialysis clinics in communities 3. hemodialysis clinics resource management 4. safety planning and implementation in health care 5. education and training for the medical care personnel 6.cooperate communicate and develop with other organizations to improve management pattern continuously 7. The support from China government health organs

Most patients diagnosed with End Stage Renal Disease (ESRD) undergo hemodialysis. Traditional hemodialysis treatment requires patients spending three to five hours every other day while yielding the high waste level accumulated between treatments. These limitations in the current technology have spurred the development of a portable renal replacement system. The portable system will not only free the patients from visiting the clinic but also allow more frequent treatment that will lead to lower average waste level. To realize a portable system, the size and weight of hemodialysis system components should be reduced. This work analyzes the working principle of the pump and proposes a DC-motor and cam driven finger pump design. In addition, an analytical pump model is created for the optimization of the pump design. In vitro experiment conducted using the pump measured Creatinine levels over time, and the results validitate the design for the portable renal replacement system. The proposed pump design is smaller than 188 cm³ and consumes less than 4W while providing a flow rate of more than 100ml/min (the optimum flow rate for a portable system) for both blood and dialysate flows. The smallest pump of a portable renal replacement system in the literature uses check valves, which considerably increase the overall manufacturing cost and possibility of clogging. Compared to that pump, the proposed pump design achieved reduction in size by 40% and savings in energy consumption by 65% with the removal of valves. This simple and reliable design substantially enables development of a portable renal replacement system.

Involving patients in medical decisions by acknowledging patients personal values and individual preferences has become an important goal of providing ethical medical care. Despite a general movement towards a model of shared decision-making, many patients do not fully meet their preferred role in practice. The decision whether or not to accept a kidney once it is offered to a patient awaiting transplant has historically been made predominantly by the transplant surgeon with little involvement from the patient. Because dialysis can provide long-term renal replacement, declining a kidney is a viable option. Patient changes over time and inherent heterogeneity of donor kidneys make this an authentic decision requiring careful analysis of costs and benefits from the patient perspective. The purpose of this study is to improve our understanding of how patients and transplant surgeons prioritize different factors when deciding whether or not to accept a kidney that has become available, in order to empower patients to become more involved in the decision-making process. Phase I: We developed a comprehensive list of factors that patients might consider important through qualitative interviews with patients, and deliberation with a transplant surgeon (SK) and a transplant nephrologists (RF). Phase II: We quantified the relative importance of each factor for patients on the transplant list and for transplant surgeons with a computerized survey using Maximum Differences Scaling. We developed relative importance scores using Heirarchical Bayes analysis, and tested for associations between patient characteristics and relative importance scores using Spearmans correlation coefficient and the Mann Whitney U test for continuous and categorical variables respectively. Of the factors evaluated, patients placed the greatest value on Kidney quality, How closely matched you are to the kidney, and How strongly your surgeon feels you should accept the kidney. Relative importance of different factors did not change based on patient demographic characteristics. Patients who are on the waiting list longer give less importance to kidney quality (standard beta estimate -0.23, p value 0.03) and more importance to How difficult it is for you to be matched to a donor (ie whether or not you are sensitized) (standard beta estimate 0.28, p value 0.01). Surgeons placed the greatest value on Kidney quality, How difficult it is for the patient to be matched to a kidney (ie whether or not the patient is sensitized), and The age of the donor. This pilot study suggests a role for standardized education tools to help empower patients to be involved in this difficult decision. Development of decision aids can be guided by the results of this project.