Chronic kidney disease (CKD) is frequently described as a chronic illness. It is also a life-threatening illness, although this is rarely discussed. When people with CKD face declining kidney function, they need technological assistance to extend life. Many people receiving treatment will also die within 5 years. The experience of living with CKD is often difficult to articulate, and little is known about the aspects of this illness that are often ineffable, difficult to discuss, or beyond words. The purpose of this dissertation is to present four papers in which I investigate the concept of the unsayable and illuminate how this concept may be helpful in exploring individuals’ stories of living with CKD. Located in social constructionism, this narrative research explores the unsayable aspects of experience for people living with CKD as portrayed through their stories and symbols. In the first paper, I present a concept analysis of the unsayable and I define the unsayable as that which is not expressed yet alluded to through language and may be conscious or unconscious. Although the unsayable is intertwined with language, it also transcends articulation. In the second paper, I offer a qualitative meta-synthesis and I show how people with kidney failure have experienced restricted freedom that brings about distant connection, dependent autonomy, abnormal normalcy, and uncertain hope. In the third paper, I present a narrative inquiry using secondary analysis of 46 interviews conducted over 3 years with 14 people living with CKD. Narrative expressions of the unsayable include the following: living with death, embodied experiences that were difficult to language, that which was unthinkable, unknowable mystery, and that which was untold / unheard. Lastly, I offer a narrative visual analysis of symbols that represent living with CKD for 13 participants. Descriptive themes of the symbols include hopes and inspirations, reflections on “who I am,” and confrontations of illness. Participants’ expressions through symbols are described through stories of memories, emotions, and poetic devices. Consideration of the unsayable may offer insights for nurses who work to support individuals and promote quality of life for those living with this chronic and life-threatening illness. / Graduate

Mesenchymal stromal cells (MSC) are bone marrow-derived, non-hematopoietic progenitors that are amenable to genetic engineering, making them attractive delivery vehicles for therapeutic proteins. However, limited transplanted cell survival compromises the efficacy of MSC-based gene therapy. We hypothesized that co-implantation of insulin-like growth factor-1 (IGF-I)-overexpressing MSC (MSC-IGF) would improve MSC-based therapy of anemia by providing paracrine support to erythropoietin (EPO)-secreting MSC (MSC-EPO). Murine MSC were found to express the IGF-I receptor and be responsive to IGF-I stimulation. IGF-I also improved MSC survival in vitro. MSC were admixed in a bovine collagen matrix and implanted by subcutaneous injection in a murine model of chronic renal failure. Mice receiving MSC-EPO co-implanted with MSC-IGF experienced a greater and significantly sustained elevation in hematocrit compared to controls; heart function was also improved. Co-implantation of MSC-IGF therefore represents a promising new strategy for enhancing implanted cell survival, and improving cell-based gene therapy of renal anemia.

Diss. (sammanfattning) Stockholm : Karol. inst., 2006. / Härtill 4 uppsatser.

Diss. (sammanfattning) Stockholm : Karolinska institutet, 2006. / Härtill 6 uppsatser. På omslag felaktigt: Fat mass, adipokines and clinical complications of chronic kidney disease.

Thesis (Ph. D.)--University of Virginia, 2007. / Title from title page. Includes bibliographical references. Also available online through Digital Dissertations.

Background. The incidence of starting renal replacement therapy (RRT) among young people (< 20 years of age) in 2013 in Scotland was 7.7 per million (age-related) population. Little knowledge exists about cardiovascular risk factors (CVRFs), long-term survival and cardiovascular disease (CVD) outcomes in patients who initiated RRT in childhood. The main source of routine data for these patients is available from the European Society of Paediatric Nephrology/European Renal Association- European Dialysis and Transplant Association (ESPN/ERA-EDTA) registry. In Scotland nationally comprehensive data on patients receiving RRT is available from the Scottish Renal Registry (SRR). Aim and objectives. The overall aim of the thesis is to review relevant literature and conduct retrospective cohort studies describing CVRF prevalence, all-cause mortality and incidence of CVD outcomes in patients who initiated RRT in childhood. ESPN/ERA-EDTA registry data were used to describe the prevalence of anaemia, hypertension, dyslipidaemia and BMI categories and their association with all-cause and CV mortality. SRR data were used to describe all-cause mortality and CVD incidence and their association with age at start of RRT, sex, primary renal disease (PRD), type of RRT and period of start of RRT. Methods. Systematic searches were performed to identify relevant literature. For the ESPN/ERA-EDTA analyses patients who started RRT between 0 and 20 years of age and who had CVRF data were included. Patients were followed from date of first CVRF measurement until the earliest of death, loss to follow-up, reaching 20 years of age or the end of follow-up (December 31st 2012). Cox proportional hazard models were used to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for mortality, comparing patients with and without each CVRF. For the SRR analyses, patients who started RRT under 18 years of age in the period from 1963 to 2013 were included in the analyses. To describe CVD incidence the SRR data were linked to national registers for death and CVD hospital admissions available from 1981 onwards. These analyses, therefore, included patients who started RRT between 1981 and 2013 with follow-up until first CVD event after start of RRT, end of follow-up period or censoring at death. Cox proportional hazard models were used to examine the association of age at initiation of RRT, sex, PRD, type of RRT and period of initiation of RRT with all-cause mortality and CVD incidence. Results. The systematic reviews revealed a gap in current knowledge about CVD incidence and the association of CVRFs with CVD outcomes in patients who initiated RRT in childhood. In total, 7,845 patients were included in the ESPN/ERA-EDTA registry analysis. The mean age of the patients was 9.5 (SE 0.06) years, 58.9% were male, and the most common PRD was congenital anomalies of kidney and urinary tract (CAKUT). The prevalence of dyslipidaemia, hypertension, anaemia overweight/obesity and underweight was 87.5%, 79.3%, 36.0%, 29.9% and 4.3%, respectively. During median follow-up of 3.7 (IQR 1.7-6.8) years 357 patients died. HRs for anaemia were 2.19 (95% CI 1.64-2.93) and 2.55 (95% CI 1.27-5.12) for all-cause and CVD mortality, respectively. The HR for all-cause mortality for underweight was 1.81 (95% CI 1.30-2.53). No other studied CVRFs were statistically significantly associated with all-cause and CVD mortality. In total, 479 patients were included in the SRR analyses of all-cause mortality. The most common PRD was CAKUT and 55.3% of patients were male. During a median follow-up of 18.3 (IQR 8.7-27.0 years) years 126 patients died. Twenty-year survival among patients initiated RRT in childhood was 77.6% (95% CI 73.8-81.3). Age at start of RRT, PRD and type of RRT were significantly associated with all-cause mortality. HR for all-cause mortality for patients who started RRT under 2 years of age was 2.50 (95% CI 1.19-5.25) compared to patients who started RRT at 12 to 18 years old. HR for all-cause mortality for patients with PRD other than CAKUT or glomerulonephritis (GN) was 1.58 (95% CI 1.05-2.39) compared to patients with CAKUT. HRs for all-cause mortality for patients who only received either HD or PD during follow-up were 19.4 (95% CI 10.4-36.4 and 19.5 (9.65-39.7), respectively, compared to patients who received a renal transplant. In total, 381 patients were included in the SRR analyses of CVD incidence. During a median of 12.9 (IQR 5.6-21.5) years of follow-up after initiation of RRT 134 patients (35.2%) developed CVD. The overall crude CVD incidence was 2.6 (95% CI 2.2-3.0) per 100 person-years. HRs for CVD were 1.69 (95% CI 1.05-2.74) for males compared to females, 1.72 (95% CI 1.02-2.91) for PRD other than CAKUT or GN compared to CAKUT and 8.38 (95% CI 3.31-21.23) and 7.30 (95% CI 2.30-23.16) for patients who only received either HD or PD during follow-up, respectively, compared to patients who received a renal transplant. Conclusions. This thesis has contributed to knowledge about CVRF prevalence, longer-term survival and CVD outcomes in patients who initiated RRT in childhood by identifying high prevalence of CVRFs and that CVD is a common complication. This study did not investigate whether anaemia, hypertension, dyslipidaemia and obesity are associated with a higher risk of developing CVD after start of RRT. Future research is needed to study whether treatment of anaemia, hypertension, dyslipidaemia and controlling body weight will reduce the risk of CVD and mortality in patients who initiated RRT in childhood.

Submitted by Erika Demachki (erikademachki@gmail.com) on 2015-05-25T10:54:06Z No. of bitstreams: 2 Tese - Jacqueline Andréia Bernardes Leão Cordeiro - 2014.pdf: 2265003 bytes, checksum: a4c8887b282a064630ad20a55ee1cc33 (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) / Approved for entry into archive by Erika Demachki (erikademachki@gmail.com) on 2015-05-25T10:55:40Z (GMT) No. of bitstreams: 2 Tese - Jacqueline Andréia Bernardes Leão Cordeiro - 2014.pdf: 2265003 bytes, checksum: a4c8887b282a064630ad20a55ee1cc33 (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) / Made available in DSpace on 2015-05-25T10:55:40Z (GMT). No. of bitstreams: 2 Tese - Jacqueline Andréia Bernardes Leão Cordeiro - 2014.pdf: 2265003 bytes, checksum: a4c8887b282a064630ad20a55ee1cc33 (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) Previous issue date: 2014-12-19 / Fundação de Amparo à Pesquisa do Estado de Goiás - FAPEG / Chronic kidney disease is considered a worldwide public health problem because of the high mortality rates and the physical, social and emotional limitations that interfere significantly in quality of life. The evaluation of the quality of life of chronic kidney disease carrier has demonstrated commitment to many aspects of life of these individuals and it was directed mainly to patients on dialysis. The number of referrals for pre - dialysis monitoring, resulting from complications due to comorbidities such as hypertension and diabetes mellitus is growing, and it requires that the focus of assistance is not only early diagnosis and treatment of disease, but also, aspects related to subjectivity, the perceptions of individuals in relation to their well - being and quality of life (QOL). At present there is no specific instrument to assess QOL of individuals in pre- dialysis treatment. This study aimed to analyze the factors associated with QOL related to the health of the chronic kidney disease carrier in pre- dialysis treatment. An analytical cross-sectional study was developed in three nephrology clinics of large hospitals in the city of Goiânia/Goiás, with 130 patients in stage IV and V of chronic kidney disease. Data collection was done through the application of socio - demographic - clinical - laboratory questionnaire and the specific QOL instrument for kidney disease, KDQOL -SF. A total of 57.7% of patients were male and the group average age was approximately 64 years old. Most patients were classified as stage 4 (69.2%) and some had no schooling (54.6 %). Among the comorbidities detected hypertension was more prevalent, followed by diabetes mellitus and 28.5% of patients had hemoglobin levels lower than expected. The dimensions of quality of life "the professional role" (25.38) and "the physical function" (28.08) showed lower values while "the stimulus by the clinic staff" (88.37) and "the cognitive function" (86.00) had the highest average. QOL is more compromised in women and in patients with five or more children who do not work and have no income, who are obese, hypertensive and show alterations especially in urea and creatinine. It was shown that QOL is influenced by chronic kidney disease, especially when there is change in laboratory parameters which control may extend the start of dialysis therapy or even minimize possible organic misfits. The KDQOL -SF was adequate to evaluate the QOL of individuals in pre- dialysis treatment. The gaps shown by the assessment of QOL in this study showed the importance of care to the kidney patient in the pre- dialysis phase, requiring more effective attention to the subjective demands. This could be achieved if the individual is taught to manage his condition, and it is essential a multidisciplinary monitoring to consider the level of patient understanding, so he can transform the information provided in benefits for his own health. / A doença renal crônica é considerada problema mundial de saúde pública em razão das elevadas taxas de mortalidade e das limitações físicas, sociais e emocionais que interferem de modo significativo na qualidade de vida das pessoas. A avaliação da qualidade de vida do portador de doença renal crônica tem demonstrado comprometimento em vários aspectos da vida desses indivíduos, tendo sido direcionada principalmente a pacientes em tratamento dialítico. O número de pessoas encaminhadas para acompanhamento pré-dialítico, resultante de complicações advindas de comorbidades como a hipertensão arterial e o diabetes mellitus é crescente, e impõe que o foco da assistência não seja mais somente o diagnóstico precoce e tratamento da doença, mas também, aspectos pertinentes à subjetividade, às percepções dos indivíduos em relação ao seu bem-estar e à sua qualidade de vida (QV). Na atualidade não existe instrumento específico que avalie a QV dos indivíduos em tratamento pré-dialítico. Objetivou-se analisar os fatores associados à QV relacionada à saúde do portador de doença renal crônica em tratamento pré-dialítico. Foi desenvolvido um estudo transversal analítico em três ambulatórios de nefrologia de hospitais de grande porte da cidade de Goiânia/Goiás, com 130 pacientes em estágios IV e V da doença renal crônica. A coleta de dados foi feita por meio da aplicação de questionário sócio-demográfico-clínico-laboratorial e do instrumento de QV específico para a doença renal, KDQOL-SF. O total de 57,7% dos pacientes era homem e a média da idade do grupo foi de, aproximadamente, 64 anos. A maioria dos pacientes foi classificada no estágio 4 (69,2%) e não tinha instrução escolar (54,6%). Dentre as comorbidades detectadas a hipertensão foi mais prevalente, seguida do diabetes mellitus e, 28,5% dos pacientes apresentaram níveis de hemoglobina abaixo do esperado. As dimensões da qualidade de vida “papel profissional” (25,38) e “função física” (28,08) apresentaram menores valores, enquanto que “estímulo por parte da equipe do ambulatório” (88,37) e “função cognitiva” (86,00) obtiveram as maiores médias. A QV está mais comprometida nas mulheres, e naqueles pacientes com cinco ou mais filhos, que não trabalham e não têm renda, obesos, hipertensos e que apresentam alterações, especialmente, de ureia e creatinina. Foi evidenciado que a QV é influenciada pela doença renal crônica, principalmente, quando há alteração dos parâmetros laboratoriais, cujo controle pode prorrogar o início da terapia dialítica ou mesmo minimizar possíveis desajustes orgânicos. O KDQOL-SF mostrou-se adequado para avaliação da QV dos indivíduos em tratamento pré-dialítico. As lacunas evidenciadas pela avaliação da QV nesse estudo apontaram a importância do cuidado ao renal na fase pré-dialítica, necessitando de atenção mais efetiva para as demandas subjetivas. Isso poderá ser alcançado se o indivíduo for ensinado a gerenciar sua doença, sendo fundamental acompanhamento multiprofissional que considere o nível de entendimento do paciente, para que ele consiga transformar as informações fornecidas em benefícios para sua saúde.

Nos últimos anos, em função dos resultados negativos do HEMO Study e da elevada mortalidade na população dialítica, observou-se crescente interesse nosregimes de hemodiálise diária. A dose de diálise persiste como um dos elementos fundamentais na adequação do tratamento dialítico. Comparamos as doses de diálise em hemodiálise diária (90 minutos, 6 vezes / semana), com as doses em hemodiálise convencional (240 minutos, 3 vezes / semana), através da quantificação direta da diálise, do modelo de cinética de uréia e pelo Standard Kt/V de Gotch. A comparação foi feita para diferentes solutos (uréia, creatinina, fósforo, ácido úrico e ß2-microglobulina) e diferentes taxas de ultrafiltração / The recent efforts to improve dialysis outcome and the negative results from the HEMO Study have created great interest on alternative hemodialysis (HD) regimens. Dialysis dose persist fundamental to HD adequacy. However, parameters of adequacy have not been validated to Daily HD. We compared the dialysis dose of daily, high efficiency and flux HD (90 minutes, 6 times a week) with Conventional high flux HD (240 minutes, 3 times a week) by direct dialysis quantification, urea kinetics model and Gotch's stdKt/V. The comparison was made with urea, creatinine, phosphate, uric acid and ß2-microglobulin. We, also, analyzed the effect of different ultrafiltration rates on solute removal on Daily HD

INTRODUÇÃO: A avaliação da QV tem se destacado de modo crescente em pesquisas clínicas de pacientes com insuficiência renal crônica terminal (IRCT), sendo o SF-36 um dos instrumentos mais utilizados nesta população. O objetivo deste estudo foi avaliar e comparar a QV nos pacientes com IRCT que estavam em tratamento dialítico de DPA e HD utilizando o SF-36 e avaliar se parâmetros sociais, demográficos, econômicos, clínicos e de adequação em diálise interferem na QV desses grupos. MÉTODOS: este estudo transversal, prospectivo e observacional, foi realizado em uma unidade de diálise satélite no município de São Paulo, em dezembro de 2003. Foram incluídos no estudo os pacientes de DPA ou HD, com tempo na terapia maior que 90 dias, idade entre 18 e 75 anos, com domínio da língua portuguesa e que concordaram em responder o instrumento para avaliação da QV. Participaram 22 pacientes de DPA e 79 de HD. Através do prontuário médico, foram coletados dados demográficos, sociais, econômicos, informações clínicas e exames laboratoriais. A QV foi avaliada apenas uma vez durante entrevista com a pesquisadora. Os valores obtidos na QV foram cruzados com as demais variáveis para verificar se havia interação significativa. RESULTADOS: Os grupos foram muito semelhantes entre si na maioria das variáveis analisadas. Na HD observou-se tempo maior de tratamento (p=0.002) e níveis de albumina sérica mais elevados que DPA (p<0,001). Em DPA, mais pacientes possuíam seguro saúde privado (p=0,018). A avaliação da QV é semelhante em quase todos os domínios do SF-36, a única diferença significativa ocorreu no Aspecto Físico, onde HD teve um escore maior que DPA (p=0,007). Não ocorreu nenhuma interação significativa entre este domínio e as demais variáveis analisadas que justificasse a diferença encontrada. CONCLUSÃO: A QV foi muito semelhante entre as duas modalidades de diálise. O grupo de HD apresentou melhor resultado em relação ao Aspecto Físico, sendo que este fato parece depender unicamente do método dialítico / The evaluation of health-related Quality of Life (Qol) is fundamental when searching for better treatment in end-stage renal disease (ESRD). The SF-36 is the most used questionnaire for this population. The purpose of this study was evaluated and compared the Qol in ESRD patients during either automatic peritoneal dialysis (APD) or hemodialysis (HD) treatment using the SF-36. METHODS: this is a prospective, cross-sectional and observational study, performed in a single dialysis facility in the city of São Paulo. Patients, with an age between 18 and 75 years, should be for more than 90 days in therapy and besides showing fluency in Portuguese language should be able to understand the questionnaire. Twenty-two APD and 79 HD patients were enrolled. The social, demographics, economics, clinical and laboratories information were colleted from the electronic data base. The Qol was assessed once an interview with one of the authors. The scores of SF-36 was correlated with the others variables to verify possible interactions. RESULTS: Both groups were very similar in most of the analyzed variables. Time in therapy was longer (p=0.002) and serum albumin level was higher (p<0,001) for the HD group than APD. In APD group more patients had private health insurance (p=0,018). The scores of SF-36 were similar in the various dimensions of the Qol questionnaire. The mean score for Physical Functioning was higher in HD than in APD (p=0,007). No significant interactions between the SF-36 dimensions and the others variables explained this difference. CONCLUSION: The Qol was very similar between these two dialysis modalities. The HD group showed better scores in Physical Functioning and this seemed to depend on the type of dialysis modality only

Made available in DSpace on 2014-08-20T13:49:45Z (GMT). No. of bitstreams: 1 Dissertacao Juliane.pdf: 1854057 bytes, checksum: 9ff54f2cb7361a7c201e50bc62d1305b (MD5) Previous issue date: 2012-10-26 / The care to users of renal replacement therapies involves a mobilization of skills that transcend the technical instituted knowledge because it imposes numerous restrictions on users. From the perspective of the individual from the rural context hemodialysis also means having to face geographical and cultural distance from health care. The study aimed to understand the meaning of hemodialysis treatment from the perspective of individuals from the rural context. This is a study of exploratory and descriptive qualitative approach. It corresponds to a subproject of research coordinated by Prof. Dr. Eda Schwartz, who received support from CNPq as Senior Fellow of the project "The daily life of rural families in the presence of chronic kidney disease: understanding based on Grounded Theory." The study was conducted in nephrology service of a teaching hospital and in their homes. Participants were three individuals, and four interviews with each were conducted, two on nephrology service and two in the homes of individuals, these ones recorded and later transcribed verbatim. The subjects agreed to participate in the study by signing the consent form. The research project was approved by the Ethics Committee under the number 1096/2011 and the Division of Continuing Education of the institution in which users were undergoing treatment. For data analysis we used the categorization of Grounded Theory described by Charmaz. As Theoretical Perspective we used Symbolic Interactionism. Study participants were three men, natives of Pelotas, Herval and Canguçu, aged 55 and 73 years of and schooling with the incomplete elementary school, two were married and had children and one was single. The conceptual categories were: being employed in the context of the field, sensing something wrong, moving to the city, allowing for new interactions, venturing transplant, or pretending not to do hemodialysis, holding a piece of land and seeing life through different eyes. The categories found were in agreement with other studies also hemodialysis patients, however the values formed in the interaction of these individuals from the perspective of the rural context remitted to better cope with the disease. Thus the land was the symbol that appeared in the speeches having more significance to character formation and conformed well as what remained of interaction with everyday life before the need for dialysis. The findings of this study have the potential to encourage health professionals, especially nurses, to improve their care practice. Since relevant issues as adherence to treatment is a reflection of the perspective of individuals about the disease and treatment, and those influenced by the contexts in which they arise. / O cuidado ao usuário de terapias renais substitutivas envolve uma mobilização de habilidades que transcende o saber técnico instituído, pois esses impõem inúmeras restrições aos usuários. Na perspectiva do indivíduo proveniente do contexto rural realizar hemodiálise significa também ter de o distanciamento geográfico e cultural da assistência a saúde. O estudo objetivou compreender o significado do tratamento de hemodiálise sob a perspectiva dos indivíduos provenientes do contexto rural. Trata-se de um estudo de abordagem qualitativa exploratória e descritiva, é uma dissertação de mestrado. Corresponde a um subprojeto da pesquisa coordenado pela Profª Dra. Eda Schwartz, que recebeu apoio do CNPq como Bolsista Sênior do projeto O cotidiano das famílias rurais na presença da doença renal crônica: compreensão baseada na Teoria Fundamentada em Dados . O estudo foi realizado no serviço de nefrologia de um hospital de ensino e no domicílio dos sujeitos. Participaram do estudo três indivíduos, sendo realizadas quatro entrevistas com cada um, duas no serviço de nefrologia e duas no domicílio dos indivíduos, sendo essas gravadas e posteriormente transcritas na íntegra. Os indivíduos aceitaram a participação no estudo mediante a assinatura do Termo Consentimento Livre Esclarecido. O projeto de pesquisa foi aprovado pelo Comitê de Ética com parecer sob o número 1096/2011 e pelo Setor de Educação Continuada da instituição em que os usuários realizavam tratamento. Para a análise dos dados utilizou-se a categorização da Teoria Fundamentada nos Dados descrita por Charmaz. Como Perspectiva Teórica empregou-se o Interacionismo Simbólico. Os participantes do estudo foram três homens, naturais de Pelotas, Herval e Canguçu, com idades entre 55 e 73 anos, com a escolaridade de ensino fundamental incompleto, dois eram casados e tinham filhos e um era solteiro. As categorias conceituais encontradas foram: sendo trabalhador no contexto do campo, sentindo uma coisa mal, mudando-se para a cidade, permitindo-se novas interações, aventurando-se no transplante, fazendo de conta que nem faz hemodiálise, mantendo um pedacinho de terra e vendo a vida com outros olhos. As categorias encontradas estavam de acordo com outros estudos realizados também com pacientes em hemodiálise, porém os valores formados na interação desses indivíduos na perspectiva do contexto rural os remeteram a um melhor enfrentamento da doença. Assim, a terra foi o símbolo que mais apareceu nos discursos tendo um significado de formação de caráter e conformou-se também como o que restou da interação com o cotidiano antes da necessidade da hemodiálise. Os achados do presente estudo tem o potencial para incentivar os profissionais da saúde, principalmente os enfermeiros, a melhorarem sua prática assistencial. Já que questões relevantes como a adesão ao tratamento são reflexo da perspectiva dos indivíduos sobre a doença e tratamento, sendo essas influenciadas pelos contextos de onde provêm.