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1.
JPEN J Parenter Enteral Nutr ; 48(2): 184-191, 2024 02.
Artigo em Inglês | MEDLINE | ID: mdl-38035855

RESUMO

BACKGROUND: There is inequal access to treatment and scarce evidence on how the disease burden in chronic intestinal failure (CIF) compares to other chronic nonmalignant types of organ failure. Therefore, we compared the health-related quality of life (HRQOL) of people with CIF with that of people with end-stage kidney disease (ESKD) receiving hemodialysis (HD). These groups were selected for comparison as they have similar treatment characteristics. We hypothesized that people treated with HD and people with CIF had similarly poor HRQOL. METHODS: HRQOL was evaluated and compared in a cross-sectional study of adult people with CIF and people with ESKD HD at a tertiary hospital in Denmark, using the Short-Form 36 (SF-36). RESULTS: One hundred forty-one people with CIF and 131 people with ESKD receiving HD were included in the analysis. Both groups reported low scores (<50) for HRQOL on general health, vitality, and role limitation-physical. People with ESKD receiving HD had significantly lower scores than people with CIF regarding physical functioning, general health, and vitality when adjusted for sex and age. No significant difference was found for any other SF-36 domain. CONCLUSION: HRQOL was similarly and significantly reduced in people with CIF and in people with ESKD receiving HD. People with ESKD receiving HD had significantly poorer HRQOL than people with CIF in some aspects of physical and mental health. Access to home parenteral support treatment varies among countries that typically provide HD, suggesting an inequality in healthcare based on the type of organ failure.


Assuntos
Enteropatias , Insuficiência Intestinal , Falência Renal Crônica , Adulto , Humanos , Qualidade de Vida/psicologia , Estudos Transversais , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Diálise Renal/psicologia , Doença Crônica , Enteropatias/complicações , Enteropatias/terapia
2.
PLoS One ; 17(11): e0277241, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36327348

RESUMO

Renal cachexia is an important consideration in the person-centred care that is needed in end-stage renal disease (ESRD). However, given that clinical guidelines relating to renal cachexia are largely absent, this is an unmet care need. To inform guidelines and future renal service planning, there is an urgency to understand individuals' experiences of renal cachexia and the interrelated experiences of the carers in their lives. We report here the protocol for an interpretative phenomenological study which will explore this lived experience. A purposive sampling strategy will recruit individuals living with ESRD who have cachexia and their carers. A maximum of 30 participants (15 per group) dependent on saturation will be recruited across two nephrology directorates, within two healthcare trusts in the United Kingdom. Individuals with renal cachexia undergoing haemodialysis will be recruited via clinical gatekeepers and their carers will subsequently be invited to participate in the study. Participants will be offered the opportunity to have a face-to-face, virtual or telephone interview. Interviews will be audio-recorded, transcribed verbatim and analysed using interpretative phenomenological analysis. NVivo, will be used for data management. Ethical approval for this study was granted by the Office for Research Ethics Committees Northern Ireland (REC Reference: 22/NI/0107). Scientific evidence tends to focus on measurable psychological, social and quality of life outcomes but there is limited research providing in-depth meaning and understanding of the views of individuals with renal disease who are experiencing renal cachexia. This information is urgently needed to better prepare healthcare providers and in turn support individuals with ESRD and their carers. This study will help healthcare providers understand what challenges individuals with ESRD, and their carers face in relation to cachexia and aims to inform future clinical practice guidelines and develop supportive interventions which recognise and respond to the needs of this population.


Assuntos
Cuidadores , Falência Renal Crônica , Humanos , Cuidadores/psicologia , Caquexia/etiologia , Caquexia/epidemiologia , Qualidade de Vida/psicologia , Falência Renal Crônica/complicações , Falência Renal Crônica/psicologia , Diálise Renal/psicologia , Pesquisa Qualitativa
3.
Nephrology (Carlton) ; 27(10): 834-844, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36122909

RESUMO

BACKGROUND: Phosphate binders cause high pill burden for dialysis patients, complicate medication regimens, and have unpleasant taste and large size which may affect patients' quality of life. This study explores the association between phosphate binder pill burden and health-related quality of life (HRQoL) in dialysis patients. METHODS: We conducted a cross-sectional multi-centre cohort study in 21 Dutch dialysis centres. Phosphate binder pill burden was extracted from electronic patient records. Primary outcome was HRQoL measured with the Short Form 12 physical and mental component summary scores (PCS and MCS). Secondary endpoints were severity of gastro-intestinal symptoms, itching, dry mouth, and mental health symptoms, measured with the Dialysis Symptom Index. RESULTS: Of 388 included patients, aged 62 ± 16 years, 77% underwent haemodialysis. PCS scores were comparable for patients with and without phosphate binders. Patients using 1-3 pills reported lower scores for decreased appetite (ß -0.5; 95%CI -0.9 to -0.2), implying better appetite, than patients without phosphate binders. Patients using 4-6 pills also reported lower scores for decreased appetite (ß -0.5; 95%CI -0.8 to -0.1) and for itching (ß -0.5; 95%CI -0.9 to -0.1). Patients using >6 pills reported lower MCS (ß -2.9; 95%CI -6.2-0.4) and higher scores for feeling nervous (ß 0.6; 95%CI 0.1-1.1) and feeling sad (ß 0.4; 95%CI 0.0-0.9). CONCLUSION: Phosphate binder pill burden is not associated with physical quality of life. A higher pill burden is associated with better appetite and less itching. Patients using >6 pills per day report lower mental quality of life and felt nervous and sad more often.


Assuntos
Hemodiálise no Domicílio , Falência Renal Crônica , Estudos de Coortes , Estudos Transversais , Humanos , Falência Renal Crônica/diagnóstico , Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Fosfatos , Estudos Prospectivos , Prurido , Qualidade de Vida/psicologia , Diálise Renal/efeitos adversos , Diálise Renal/psicologia
4.
Complement Ther Clin Pract ; 49: 101647, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-35932699

RESUMO

AIMS: This randomized controlled study was conducted to investigate the physiological and psychological effects of pet therapy in hemodialysis patients. BACKGROUND: Pet therapy has both physiological and psychological effects on individuals with chronic diseases. However, to the best of our knowledge, no studies have examined the physiological and psychological effects of pet treatment in hemodialysis patients worldwide. DESIGN: A randomized controlled study. METHODS: The study was completed with 18 robotic cats, 18 Betta fish, and 18 control group patients. The data were collected at XXX State Hospital between May and September 2021 using data collection tools. Robotic pet treatment was applied to the robotic cat group for 20 min a week for two months during hemodialysis. The Betta fish group was allowed to keep Betta fish at home for two months, and they were followed for another two months. The data were evaluated in the Statistical Package for Social Sciences 23.0 package program. The study was registered on Clinical Trials (NCT05339711). RESULTS: During robotic cat therapy, patients' loneliness and dialysis symptoms decreased, and happiness and treatment adherence to the end-stage renal disease (ESRD) increased; In the post-test follow-up, in the first measurement, the treatment adherence to the ESRD decreased, the loneliness and dialysis symptoms increased, the happiness did not change; In the second measurement of the post-test, happiness, and treatment adherence to ESRD decreased, loneliness and dialysis symptoms increased. During Betta fish therapy, patients' body mass index, happiness, and treatment adherence to ESRD increased, loneliness and dialysis symptoms decreased; in the first measurement, and loneliness, dialysis symptoms, body mass index, and treatment adherence to the ESRD increased; In the second measurement, loneliness, dialysis symptoms increased, body mass index and happiness decreased. CONCLUSIONS: The study revealed that Robotic cat and Betta fish therapies had positive physiological and psychological effects in hemodialysis patients, and these effects were different from each other.


Assuntos
Falência Renal Crônica , Procedimentos Cirúrgicos Robóticos , Humanos , Diálise Renal , Falência Renal Crônica/terapia , Falência Renal Crônica/diagnóstico , Falência Renal Crônica/psicologia , Projetos de Pesquisa , Felicidade
5.
BMJ ; 376: e068769, 2022 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-35232772

RESUMO

OBJECTIVES: To investigate the survival benefit of transplantation versus dialysis for waitlisted kidney failure patients with a priori stratification. DESIGN: Systematic review and meta-analysis. DATA SOURCES: Online databases MEDLINE, Ovid Embase, Web of Science, Cochrane Collection, and ClinicalTrials.gov were searched between database inception and 1 March 2021. INCLUSION CRITERIA: All comparative studies that assessed all cause mortality for transplantation versus dialysis in patients with kidney failure waitlisted for transplant surgery were included. Two independent reviewers extracted the data and assessed the risk of bias of included studies. Meta-analysis was done using the DerSimonian-Laird random effects model, with heterogeneity investigated by subgroup analyses, sensitivity analyses, and meta-regression. RESULTS: The search identified 48 observational studies with no randomised controlled trials (n=1 245 850 patients). In total, 92% (n=44/48) of studies reported a long term (at least one year) survival benefit associated with transplantation compared with dialysis. However, 11 of those studies identified stratums in which transplantation offered no statistically significant benefit over remaining on dialysis. In 18 studies suitable for meta-analysis, kidney transplantation showed a survival benefit (hazard ratio 0.45, 95% confidence interval 0.39 to 0.54; P<0.001), with significant heterogeneity even after subgroup/sensitivity analyses or meta-regression analysis. CONCLUSION: Kidney transplantation remains the superior treatment modality for most patients with kidney failure to reduce all cause mortality, but some subgroups may lack a survival benefit. Given the continued scarcity of donor organs, further evidence is needed to better inform decision making for patients with kidney failure. STUDY REGISTRATION: PROSPERO CRD42021247247.


Assuntos
Falência Renal Crônica/terapia , Transplante de Rim , Listas de Espera , Humanos , Falência Renal Crônica/mortalidade , Falência Renal Crônica/psicologia , Estudos Observacionais como Assunto , Diálise Renal , Análise de Sobrevida
6.
Workplace Health Saf ; 70(5): 251-258, 2022 May.
Artigo em Inglês | MEDLINE | ID: mdl-35112607

RESUMO

BACKGROUND: Immigrants often work in jobs that are known as dirty, demanding, and dangerous. Globally, the agricultural occupations have been associated with the emergence of chronic kidney disease of unknown etiology (CKDu) primarily in outdoor worker populations. The disease has also been reported in immigrants in the United States who work in agricultural occupations, but little research has been done outside of agricultural workers to determine whether immigrants who work other occupations are at risk for developing CKDu. METHODS: This study assessed the self-reported occupational histories of undocumented immigrants receiving frequent, emergent-only dialysis in Atlanta, GA. We assessed demographics, employment status, and work history, using the Grady Dialysis Questionnaire and the Occupational/Environmental Health History Form. RESULTS: Fifty undocumented immigrants receiving frequent, emergent-only hemodialysis were recruited for this study. The average age was 49.5 years (SD ± 11.5), and the majority (52%) were female and originated from Mexico (66%). A majority (74%) reported having worked in the past 5 years and 28% reported currently working. A total of 68 unique jobs were reported. In decreasing order of frequency, our sample worked in occupations with documented renal toxicant exposures, such as applying pesticides in landscaping, heat exposure in agriculture, construction, landscaping, and dry cleaning, and lead paint fumes in construction. DISCUSSION: Occupational histories provide a greater understanding of the exposures and working conditions of those receiving frequent, emergent-only hemodialysis. This exploratory study suggests that further research is needed to investigate and assess whether renal toxicants are associated with occupations with high numbers of undocumented workers. APPLICATION TO PRACTICE: A detailed and thorough occupational history should be conducted from those receiving frequent, emergent-only hemodialysis. Developing continuing education for nursing and medical staff in dialysis centers on taking an occupational history, mandatory State reporting requirements, and hazard communication training for workers should be considered. Collaborations between occupational health professionals, public health authorities, employers, dialysis providers, and clinicians who see undocumented workers is required to understand and develop appropriate prevention measures for this population.


Assuntos
Falência Renal Crônica , Exposição Ocupacional , Imigrantes Indocumentados , Feminino , Georgia , Temperatura Alta , Humanos , Falência Renal Crônica/epidemiologia , Falência Renal Crônica/psicologia , Masculino , Pessoa de Meia-Idade , Exposição Ocupacional/efeitos adversos , Diálise Renal , Imigrantes Indocumentados/psicologia , Estados Unidos
8.
Rev. inf. cient ; 100(3): e3458, 2021. tab, graf
Artigo em Espanhol | LILACS, CUMED | ID: biblio-1289642

RESUMO

RESUMEN Introducción: La insuficiencia renal crónica terminal constituye uno de los problemas de salud más complejos por las afectaciones que provoca a la calidad de vida de los pacientes y por las dificultades que entraña la adherencia del paciente al tratamiento. Objetivo: Identificar la relación entre la calidad de vida percibida y la adherencia al tratamiento de los pacientes portadores de insuficiencia renal crónica terminal que reciben hemodiálisis. Método: Estudio de tipo correlacional realizado en el servicio de Hemodiálisis del Hospital General Docente "Juan B. Viñas González" de Palma Soriano, Santiago de Cuba. Del universo de 32 pacientes se trabajó con la población constituida por 16 pacientes que cumplieron con los criterios de inclusión/exclusión. Las técnicas utilizadas fueron: cuestionario de calidad de vida de la OMS, revisión de documentos, entrevistas y la observación. Se realizó análisis estadístico descriptivo (análisis de frecuencias) y se aplicó el método no paramétrico de correlación de Spearman. Resultados: Más de la mitad (56,25 %) de la población reflejó una calidad de vida percibida regular, el 25 % buena y el 18,75 % mala. La dimensión de salud física se mostró dentro de las más afectadas, observándose una valoración negativa con respecto a la enfermedad, pues más del 85 % de los encuestados la consideró como grave o muy grave. Se apreciaron afectaciones al sueño, donde más del 60 % de los pacientes se sintió insatisfecho con este aspecto. Los síntomas de la enfermedad son valorados, por la mayoría (81,25 %) como severos o muy severos. Conclusiones: Los pacientes poseen adherencia media al tratamiento y una calidad de vida percibida regular, y existe correlación fuerte y directa entre la adherencia al tratamiento y la calidad de vida percibida.


ABSTRACT Introduction: The end-stage chronic renal disease, due to how it affects the patient´s quality of life and the difficulties involved in the adherence of patient to treatment, is one of the most complex health problems. Objective: To identify the relationship between perceived quality of life and adherence to treatment in patients with end-stage chronic renal disease receiving hemodialysis. Method: A correlative study was conducted in the hemodialysis service room at the Hospital General Docente "Juan B. Viñas González" in Palma Soriano, Santiago de Cuba. The universe studied included 32 patients and 16 (met inclusion/exclusion criteria) were selected to work with. The techniques used were: World Health Organization quality of life questionnaire, document review, interviews and observation. A descriptive statistical analysis was performed (frequency analysis) and the nonparametric method applied was the Spearman's correlation coefficient using the SPSS 19.0 data processing program. Results: More than half of the population (56.25%) reported a fair quality of life, good (25%), and bad (18.75%). The physical health dimension was one of the most affected and it was found a negative assess of the disease in which more than 85% of those polled considered it as serious or very serious. Some sleep disorders was found and more than 60% of patients were unsatisfied related this issue. Most of the patients (81.25%) characterized the disease symptoms as severe or very severe. Conclusions: Patients studied had an adherence to treatment in a medium level and a perceived fair quality of life. There is also a correlation between the patient adherences to treatment and perceived quality of life.


RESUMO Introdução: A insuficiência renal crônica terminal constitui um dos problemas de saúde mais complexos pelos efeitos que causa na qualidade de vida dos pacientes e pelas dificuldades que a adesão do paciente ao tratamento acarreta. Objetivo: Identificar a relação entre a percepção de qualidade de vida e a adesão ao tratamento em pacientes com doença renal terminal em hemodiálise. Método: Estudo do tipo correlacional realizado no serviço de Hemodiálise do Hospital Geral de Ensino "Juan B. Viñas González" em Palma Soriano, Santiago de Cuba. Do universo de 32 pacientes, trabalhamos com a população composta por 16 pacientes que atenderam aos critérios de inclusão / exclusão. As técnicas utilizadas foram: questionário de qualidade de vida da Organização Mundial da Saúde, revisão documental, entrevistas e observação. Foi realizada análise estatística descritiva (análise de frequência) e aplicado o método não paramétrico. Resultados: Mais da metade (56,25%) da população apresentou percepção de qualidade de vida regular, 25% boa e 18,75% ruim. A dimensão saúde física esteve entre as mais afetadas, com avaliação negativa em relação à doença, uma vez que mais de 85% dos inquiridos a consideraram grave ou muito grave. Além disso, foram notados distúrbios do sono, onde mais de 60% dos pacientes se sentiram insatisfeitos com esse aspecto. Os sintomas da doença são avaliados, pela maioria (81,25%), como graves ou muito graves. Conclusões: Os pacientes apresentam média de adesão ao tratamento e percepção de qualidade de vida regular, havendo forte e direta correlação entre adesão ao tratamento e percepção de qualidade de vida.


Assuntos
Humanos , Masculino , Feminino , Adulto , Qualidade de Vida , Diálise Renal/métodos , Cooperação e Adesão ao Tratamento , Falência Renal Crônica/psicologia , Falência Renal Crônica/tratamento farmacológico , Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Indicadores de Qualidade de Vida
9.
BMC Nephrol ; 22(1): 157, 2021 04 28.
Artigo em Inglês | MEDLINE | ID: mdl-33910523

RESUMO

OBJECTIVE: Patients undergoing haemodialysis may experience troubling symptoms such as fatigue, anxiety, depression and sleep quality, which may affect their quality of life. The main objective of this study is to determine the prevalence of fatigue, anxiety, depression and sleep quality among patients receiving haemodialysis during the coronavirus disease 2019 (COVID-19) pandemic, and to explore the contributing predictors. METHODS: A cross-sectional and descriptive correlational design using Qualtrics software was performed. Data were collected using the Functional Assessment of Cancer Therapy-Fatigue (FACT-F), the Hospital Anxiety and Depression Scale (HADS) and the Pittsburgh Sleep Quality Index (PSQI). Logistic regression analyses were used to explore the predictors that were associated with fatigue, anxiety, depression and sleep quality. RESULTS: Of the 123 patients undergoing haemodialysis who participated, 53.7% (n = 66) reported fatigue, 43.9% (n = 54) reported anxiety, 33.3% (n = 41) reported depression and 56.9% (n = 70) reported poor sleep. Fatigue, anxiety and sleep quality (P < .05) were significantly associated with being female, and whether family members or relatives were suspected or confirmed with COVID-19. Logistic regression showed that being within the age group 31-40, having a secondary education level, anxiety, depression and sleep quality were the main predictors affecting the fatigue group. CONCLUSION: Fatigue, anxiety, depression and sleep quality are significant problems for patients receiving haemodialysis during the COVID-19 pandemic. Appropriate interventions to monitor and reduce fatigue, psychological problems and sleep quality amongst these patients are needed. This can help to strengthen preparations for responding to possible future outbreaks or pandemics of infectious diseases for patients receiving haemodialysis.


Assuntos
Ansiedade/epidemiologia , COVID-19 , Depressão/epidemiologia , Fadiga/epidemiologia , Falência Renal Crônica/terapia , Sono , Adolescente , Adulto , Fatores Etários , Escolaridade , Família , Feminino , Humanos , Falência Renal Crônica/fisiopatologia , Falência Renal Crônica/psicologia , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Omã/epidemiologia , Diálise Renal , Fatores de Risco , SARS-CoV-2 , Inquéritos e Questionários , Adulto Jovem
10.
BMC Nephrol ; 22(1): 129, 2021 04 13.
Artigo em Inglês | MEDLINE | ID: mdl-33849488

RESUMO

BACKGROUND: The burden of chronic kidney disease in Africa is three to four times higher compared to high-income countries and the cost of treatment is beyond the reach of most affected persons. The best treatment for end stage renal disease is kidney transplantation which is not available in most African countries. As kidney transplantation surgery is emerging in Ghana, this study assessed factors which could influence the willingness of patients with chronic kidney disease to accept it as a mode of treatment. METHODS: This cross-sectional survey was carried out among patients with chronic kidney disease in Korle-Bu Teaching Hospital. A consecutive sampling method was used to recruit consenting patients. A structured questionnaire and standardized research instruments were used to obtain information on demographic, socio-economic characteristics, knowledge about transplantation, perception of transplantation, religiosity and spirituality. Logistic regression model was used to assess the determinants of willingness to accept a kidney transplant. RESULTS: 342 CKD patients participated in the study of which 56.7% (n = 194) were male. The mean age of the participants was 50.24 ± 17.08 years. The proportion of participants who were willing to accept a kidney transplant was 67.3% (95%CI: 62.0-72.2%). The factors which influenced participants' willingness to accept this treatment included; willingness to attend a class on kidney transplantation (p < 0.016), willingness to donate a kidney if they had the chance (p < 0.005), perception that a living person could donate a kidney (p < 0.001) and perceived improvement in quality of life after transplantation (p < 0.005). The barriers for accepting kidney transplantation were anticipated complications of transplant surgery and financial constraints. CONCLUSION: More than two-thirds of CKD patients were willing to accept a kidney transplant and this is influenced by multiple factors. Government health agencies must consider full or partial coverage of kidney transplantation through the existing national health insurance scheme. Further, efficient educational programmes are required to improve both patients' and physicians' knowledge on the importance of kidney transplantation in the management of end stage renal disease in Ghana.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Falência Renal Crônica/cirurgia , Transplante de Rim , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Efeitos Psicossociais da Doença , Feminino , Gana , Custos de Cuidados de Saúde , Inquéritos Epidemiológicos , Humanos , Falência Renal Crônica/psicologia , Transplante de Rim/efeitos adversos , Transplante de Rim/economia , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Complicações Pós-Operatórias , Qualidade de Vida , Obtenção de Tecidos e Órgãos , Adulto Jovem
11.
Medicine (Baltimore) ; 100(5): e24275, 2021 Feb 05.
Artigo em Inglês | MEDLINE | ID: mdl-33592871

RESUMO

ABSTRACT: To investigate serum level of high mobility group box protein-1 (HMGB1) and prognosis of patients with end-stage renal disease (ESRD) on hemodialysis (HD) and peritoneal dialysis (PD).This prospective cohort observational study included a total of 253 ESRD patients who came to our hospital for HD or PD from February 2013 to February 2015. Enzyme linked immunosorbent assay (ELISA) method was used to detect the serum level of HMGB1, interleukin (IL-6), IL-8, and tumor necrosis factor-alpha (TNF-α). The kidney disease quality of life short form (KDQOL-SF) and kidney disease targeted area (KDTA) was applied for evaluating the quality of life. Kaplan-Meier (K-M) curve was performed for survival time.Serum level of HMGB1 in patients on HD was higher than PD. HMGB1 levels were gradually decreased with the treatment of HD or PD. Furthermore, HMGB1 was positively correlated with IL-6 and TNF-α. Moreover, patients with higher HMGB1 had more complications than patients with lower HMGB1, but there was no difference for the survival rate. In addition, the quality of life was associated with different dialysis methods.The serum level of HMGB1 and prognosis of ESRD patients was associated with different dialysis methods.


Assuntos
Proteína HMGB1/sangue , Falência Renal Crônica , Diálise Peritoneal , Qualidade de Vida , Diálise Renal , China/epidemiologia , Correlação de Dados , Feminino , Humanos , Interleucina-6/sangue , Estimativa de Kaplan-Meier , Falência Renal Crônica/sangue , Falência Renal Crônica/mortalidade , Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Masculino , Pessoa de Meia-Idade , Diálise Peritoneal/métodos , Diálise Peritoneal/estatística & dados numéricos , Prognóstico , Estudos Prospectivos , Diálise Renal/métodos , Diálise Renal/estatística & dados numéricos , Fator de Necrose Tumoral alfa/sangue
12.
Dig Dis Sci ; 66(12): 4072-4089, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-33433811

RESUMO

People with end-stage liver disease on the liver transplant waiting list have high symptom burden, which can successfully be addressed by specialist palliative care. Potential tensions with the perceived curative nature of liver transplant make delivering specialist palliative care challenging. This systematic review seeks to establish what is known on the impact of specialist palliative care for patients on liver transplant waiting lists, healthcare professionals' perspectives of providing specialist palliative care for this population, and uptake of advance care planning (ACP). Medline, Embase, and CINAHL were searched to May 5, 2020. Qualitative and quantitative findings were grouped together according to main relevant themes. Eight studies of mixed quality and mainly quantitative, were identified. Findings suggest early palliative care intervention improve patients' symptoms and prompt ACP conversations, but patients on the waiting list receive limited palliative care input. Liver physicians' lack of clarity on referral criteria and liver transplant patients' concerns of being abandoned, were reasons for reluctance to refer to specialist palliative care. They felt referral to specialist palliative care is appropriate only for patients receiving hospice or end of life care. Uptake and understanding of ACP and goals of care designation by patients is poor. This review found evidence of benefit of specialist palliative care for patients on liver transplant waiting lists, but found in a limited understanding of their role. Evidence is limited to studies from North America. Future research is needed to understand better how palliative care could be provided into this clinical environment.


Assuntos
Planejamento Antecipado de Cuidados , Falência Renal Crônica/terapia , Transplante de Fígado , Cuidados Paliativos , Listas de Espera , Humanos , Falência Renal Crônica/diagnóstico , Falência Renal Crônica/fisiopatologia , Falência Renal Crônica/psicologia , Padrões de Prática Médica
13.
BMC Nephrol ; 21(1): 515, 2020 11 26.
Artigo em Inglês | MEDLINE | ID: mdl-33243163

RESUMO

BACKGROUND: End-stage renal disease (ESRD) patients are at a substantially higher risk for developing cognitive impairment compared with the healthy population. Dialysis is an essential way to maintain the life of ESRD patients. Based on previous research, there isn't an uncontested result whether cognition was improved or worsened during dialysis. METHODS: To explore the impact of dialysis treatment on cognitive performance, we recruited healthy controls (HCs), predialysis ESRD patients (predialysis group), and maintenance hemodialysis ESRD patients (HD group). All ESRD patients performed six blood biochemistry tests (hemoglobin, urea, cystatin C, Na+, K+, and parathyroid hormone). Neuropsychological tests were used to measure cognitive function. By using diffusion tensor imaging and graph-theory approaches, the topological organization of the whole-brain structural network was investigated. Generalized linear models (GLMs) were performed to investigate blood biochemistry predictors of the neuropsychological tests and the results of graph analyses in the HD group and predialysis group. RESULTS: Neuropsychological analysis showed the HD group exhibited better cognitive function than the predialysis group, but both were worse than HCs. Whole-brain graph analyses revealed that increased global efficiency and normalized shortest path length remained in the predialysis group and HD group than the HCs. Besides, a lower normalized clustering coefficient was found in the predialysis group relative to the HCs and HD group. For the GLM analysis, only the Cystatin C level was significantly associated with the average fiber length of rich club connections in the predialysis group. CONCLUSIONS: Our study revealed that dialysis had a limited effect on cognitive improvement.


Assuntos
Cognição , Disfunção Cognitiva/etiologia , Falência Renal Crônica/psicologia , Vias Neurais/anatomia & histologia , Diálise Renal , Análise Química do Sangue , Encéfalo/anatomia & histologia , Encéfalo/diagnóstico por imagem , Encéfalo/fisiologia , Estudos de Casos e Controles , Conectoma , Cistatina C/sangue , Imagem de Tensor de Difusão , Voluntários Saudáveis , Humanos , Falência Renal Crônica/terapia , Modelos Lineares , Memória , Vias Neurais/diagnóstico por imagem , Testes Neuropsicológicos
14.
BMC Palliat Care ; 19(1): 133, 2020 Aug 20.
Artigo em Inglês | MEDLINE | ID: mdl-32819349

RESUMO

BACKGROUND: Palliative care is increasingly becoming an accepted treatment choice for many individuals diagnosed with end-stage kidney disease (ESKD). Yet, its utilisation is non-existent in many lower- and middle-income countries (LMICs). This study explored the perceptions of individuals with ESKD and their informal caregivers on palliative care as a treatment option for the disease in Ghana. METHODS: This was a phenomenological study, with an in-depth analysis of data collected from nine individuals with ESKD and six informal caregivers through individual, face-to-face semi-structured interviews. The study was conducted in two renal centres within the Kumasi metropolis, Ghana among individuals with ESKD seeking care from both renal centres and their informal caregivers. RESULTS: Three main themes were derived from this study - motivation for initiating haemodialysis, facing realities of haemodialysis, and considering palliative care. Participants felt that haemodialysis (HD) was not meeting their health expectations and demonstrated a general willingness to utilise palliative care if it would reduce suffering. CONCLUSIONS: This study has shown that individuals with ESKD or their informal caregivers would consider palliative care services, if available. It paves the way for discussions about palliative care for ESKD to begin across renal centres within Ghana and other similar settings. Exploring perspectives of clinicians in such settings could inform strategies on how to implement palliative care for ESKD management in such settings.


Assuntos
Falência Renal Crônica/complicações , Assistência ao Paciente/psicologia , Percepção , Adolescente , Adulto , Idoso , Feminino , Gana , Humanos , Falência Renal Crônica/psicologia , Masculino , Pessoa de Meia-Idade , Motivação , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Assistência ao Paciente/métodos , Pesquisa Qualitativa
15.
Patient Educ Couns ; 103(9): 1774-1779, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32418680

RESUMO

OBJECTIVE: To determine the effect of nutrition education program on hemodialysis patients' quality of life (QoL) and serum electrolytes levels. METHODS: This study was a randomized controlled trial in which 94 eligible hemodialysis patients were randomly assigned to intervention (n = 48) and control (n = 46) groups. In the intervention group, the patients were trained in healthy nutrition for four weeks. After two months, samples of both groups completed the Kidney Disease Quality of Life Instrument (KDQOL) and Na, K, P, Ca and Mg levels were also measured and compared. RESULTS: There were no significant differences in QoL scores and electrolytes between the two groups before intervention (p > 0.05). After intervention the QoL scores in the intervention group were significantly higher than in the control group (p < 0.05). However, after intervention the levels of Na, K, P and Mg in the intervention group were significantly lower than in the control group (p < 0.05). Calcium level was not significantly different between the two groups after intervention (p = 0.16). CONCLUSION: The results showed that e-learning is effective in improving the QoL and serum electrolytes of hemodialysis patients. PRACTICE IMPLICATIONS: This paper could serve as support for clinical healthcare professionals to improve patient knowledge and QoL through virtual education methods.


Assuntos
Educação em Saúde/métodos , Conhecimentos, Atitudes e Prática em Saúde , Falência Renal Crônica/terapia , Aprendizagem , Estado Nutricional , Educação de Pacientes como Assunto/métodos , Qualidade de Vida , Adulto , Idoso , Eletrólitos/análise , Feminino , Humanos , Irã (Geográfico) , Falência Renal Crônica/diagnóstico , Falência Renal Crônica/psicologia , Masculino , Pessoa de Meia-Idade , Avaliação Nutricional , Terapia Nutricional , Avaliação de Resultados da Assistência ao Paciente , Diálise Renal/efeitos adversos , Método Simples-Cego , Inquéritos e Questionários , Fatores de Tempo , Resultado do Tratamento
16.
Braz. J. Psychiatry (São Paulo, 1999, Impr.) ; 42(2): 195-200, Mar.-Apr. 2020. tab
Artigo em Inglês | LILACS | ID: biblio-1089251

RESUMO

Objective: Depression is highly prevalent in hemodialysis patients, but few studies have evaluated older hemodialysis patients. The aim of this study was to evaluate the prevalence of depression, its associated factors and its impact on quality of life in an older population on hemodialysis. Methods: This was a cross-sectional study including 173 hemodialysis patients aged 60 years or older in Recife, Brazil. Depression was evaluated using the Mini-International Neuropsychiatric Interview when depressive symptoms (according to the 5-item Geriatric Depression Scale) were present. Quality of life was assessed with the Control, Autonomy, Self-realization and Pleasure Questionnaire (CASP-16). Data were also collected on sociodemographic, laboratory (albumin, parathormone, hemoglobin, and phosphorus) and dialysis (dialysis vintage, vascular access and hemodialysis adequacy) characteristics. Results: Depression was present in 22.5% of the sample. Depressed patients presented low CASP-16 quality of life scores (31.6 vs. 24.2, p < 0.001), twice the odds of albumin levels < 3.8 g/dL (OR 2.36; 95%CI 1.10-5.07; p = 0.027) and higher parathormone levels (OR 1.06; 95%CI 1.00-1.13; p = 0.05). Conclusion: Older hemodialysis patients have a high prevalence of depression. Depressed patients presented poor quality of life, lower serum albumin and higher parathormone levels. Teams dealing with older hemodialysis patients should include depression and quality of life assessments in care protocols.


Assuntos
Humanos , Feminino , Idoso , Qualidade de Vida/psicologia , Diálise Renal/psicologia , Depressão/psicologia , Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Fatores Socioeconômicos , Brasil , Estudos Transversais , Inquéritos e Questionários
17.
Int Urol Nephrol ; 52(4): 765-773, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-32125588

RESUMO

PURPOSE: The 1-year mortality rate of patients with end-stage renal disease (ESRD) on renal replacement therapy (RRT) is 20-25% comparable to many cancers. Studies have shown that cancer patients commonly overestimate their likelihood of survival relative to their physicians. It is unclear if this translates into other terminal illnesses. METHODS: Adult and elderly patients with ESRD on RRT without cognitive defect were interviewed to evaluate their prognostic estimates at 1 and 5 years. Past medical history and demographic data was abstracted from their medical charts. Each patient's proper nephrologist was then interviewed regarding his proper prognostic estimate for this patient. Both the patient and the nephrologist's estimates were compared and a difference of greater than 20% was defined as the threshold for prognostic concordance. RESULTS: 77% of patients were found to be in prognostic discordance with their nephrologists. This group was older, had more comorbidities, a lower albumin level and a poorer prognosis. The majority of patients were in disagreement with their nephrologists regarding whether a discussion about prognosis had taken place. The choice of end of life care for 55% of patients was focused on relieving pain and discomfort. CONCLUSION: Communication of prognosis and discussions related to life expectancy and end of life care are lacking in the routine care of ESRD patients. ESRD patients therefore tend to overestimate their prognosis which might lead to overutilization of invasive procedures with increased acute healthcare costs as well as a delay in instigation of palliative or hospice measures.


Assuntos
Comunicação , Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Expectativa de Vida , Nefrologistas , Assistência Terminal , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Comorbidade , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Prognóstico , Terapia de Substituição Renal , Inquéritos e Questionários , Adulto Jovem
18.
J Am Soc Nephrol ; 31(4): 855-864, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-32132197

RESUMO

BACKGROUND: Neurocognitive testing shows that cognitive impairment is common among patients receiving maintenance hemodialysis. Identification of a well performing screening test for cognitive impairment might allow for broader assessment in dialysis facilities and thus optimal delivery of education and medical management. METHODS: From 2015 to 2018, in a cohort of 150 patients on hemodialysis, we performed a set of comprehensive neurocognitive tests that included the cognitive domains of memory, attention, and executive function to classify whether participants had normal cognitive function versus mild, moderate, or severe cognitive impairment. Using area-under-the-curve (AUC) analysis, we then examined the predictive ability of the Mini Mental State Examination, the Modified Mini Mental State Examination, the Montreal Cognitive Assessment, the Trail Making Test Part B, the Mini-Cog test, and the Digit Symbol Substitution Test, determining each test's performance for identifying severe cognitive impairment. RESULTS: Mean age was 64 years; 61% were men, 39% were black, and 94% had at least a high-school education. Of the 150 participants, 21% had normal cognitive function, 17% had mild cognitive impairment, 33% had moderate impairment, and 29% had severe impairment. The Montreal Cognitive Assessment had the highest overall predictive ability for severe cognitive impairment (AUC, 0.81); a score of ≤21 had a sensitivity of 86% and specificity of 55% for severe impairment, with a negative predictive value of 91%. The Trails B and Digit Symbol tests also performed reasonably well (AUCs, 0.73 and 0.78, respectively). The other tests had lower predictive performances. CONCLUSIONS: The Montreal Cognitive Assessment, a widely available and brief cognitive screening tool, showed high sensitivity and moderate specificity in detecting severe cognitive impairment in patients on maintenance hemodialysis.


Assuntos
Disfunção Cognitiva/diagnóstico , Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Testes de Estado Mental e Demência , Diálise Renal , Idoso , Estudos de Coortes , Escolaridade , Feminino , Humanos , Masculino , Programas de Rastreamento , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Curva ROC , Índice de Gravidade de Doença
19.
Artigo em Inglês | MEDLINE | ID: mdl-32026760

RESUMO

End Stage Renal Disease (ESRD) is a life-limiting condition for which hospice and palliative care are not routinely provided to patients and families. While the ESRD mortality rate is close to 25%, patients on dialysis are half as likely to receive hospice services than patients with other life-limiting diagnoses. Nephrologists and dialysis social workers receive little training to effectively lead patients with ESRD and their families through the stages of dying and the completion of advance care planning. The lack of professional training, a need for greater commitment to advanced care planning from dialysis corporations, and reimbursement problems for hospice care, all contribute to low rates of hospice use within the ESRD population. An ESRD advance care training program for social workers is described that was developed as a part of a larger research project designed to increase advance care planning and referrals for hospice for those with ESRD. The goals were to help social workers become better advocates for patients and families, appreciate cultural, spiritual, racial and ethnic differences, and understand the ethical and legal issues in advance care planning. The challenges that emerged included high staff turnover and a paucity of corporate commitment to training.


Assuntos
Planejamento Antecipado de Cuidados/estatística & dados numéricos , Falência Renal Crônica/enfermagem , Cuidados Paliativos/psicologia , Assistentes Sociais/psicologia , Atitude Frente a Morte , Humanos , Falência Renal Crônica/psicologia , Participação do Paciente , Qualidade de Vida/psicologia
20.
J Vasc Access ; 21(2): 230-236, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31464539

RESUMO

OBJECTIVES: To determine the vascular access modalities used for hemodialysis, the reasons for choosing them, and determinants of satisfaction with vascular access among patients with end-stage renal disease. METHODS: The American Association of Kidney Patients Center for Patient Research and Education used the American Association of Kidney Patients patient engagement database to identify eligible adult hemodialysis patients. Participants completed an online survey consisting of 34 demographic, medical history, and hemodialysis history questions to determine which vascular access modalities were preferred and the reasons for these preferences. RESULTS: Among 150 respondents (mean age 54 years, 53% females), hemodialysis was most frequently initiated with central venous catheter (64%) while the most common currently used vascular access was arteriovenous fistula (66%). Most (86%) patients previously received an arteriovenous fistula, among whom 77% currently used the arteriovenous fistula for vascular access. Older patients and males were more likely to initiate hemodialysis with an arteriovenous fistula. The factors most frequently reported as important in influencing the selection of vascular access modality included infection risk (87%), physician recommendation (84%), vascular access durability (78%), risk of complications involving surgery (76%), and impact on daily activities (73%); these factors were influenced by patient age, sex, and race. Satisfaction with current vascular access was 90% with arteriovenous fistula, 79% with arteriovenous graft, and 67% with central venous catheter. CONCLUSION: Most end-stage renal disease patients continue to initiate hemodialysis with central venous catheter despite being associated with the lowest satisfaction rates. While arteriovenous fistula was associated with the highest satisfaction rate, there are significant barriers to adoption that vary based on patient demographics and perception of procedure invasiveness.


Assuntos
Derivação Arteriovenosa Cirúrgica , Implante de Prótese Vascular , Cateterismo Venoso Central , Conhecimentos, Atitudes e Prática em Saúde , Falência Renal Crônica/terapia , Preferência do Paciente , Diálise Renal , Adulto , Idoso , Derivação Arteriovenosa Cirúrgica/efeitos adversos , Implante de Prótese Vascular/efeitos adversos , Cateterismo Venoso Central/efeitos adversos , Tomada de Decisão Clínica , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Falência Renal Crônica/diagnóstico , Falência Renal Crônica/psicologia , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , Diálise Renal/efeitos adversos , Fatores de Risco
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