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1.
BMC Nephrol ; 25(1): 188, 2024 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-38831308

RESUMO

BACKGROUND: Long-term enzyme replacement therapy (ERT) may improve prognosis in the patients with Fabry disease (FD), however, detail psychosocial burden has not been focused on long life expectancy. We experienced a male case of FD under ERT, he was placed on hemodialysis and presented rapidly progressive cognitive function. CASE PRESENTATION: A 51-year-old male patient with FD has been receiving ERT from age of 38 years. Hemodialysis was initiated at the age of 47 years. The patient experienced several attacks of cerebral infarction, and brain images demonstrated wide-spread asymptomatic ischemic lesions. His behavior became problematic at the age of 51 years. He often exhibited restlessness during hemodialysis sessions and failure to communicate effectively. The patient experienced impairment of attention and executive function, topographical disorientation, and amnesia. Consequently, it was necessary for medical staff and family members to monitor his behavior for safe extracorporeal circulation and daily life activities. Annual standardized neuropsychiatric testing revealed worsening of cognitive performance. CONCLUSIONS: Despite treating with long-term ERT, it is necessary to determine the psychosocial burden derived from the progression of cognitive impairment in patients with FD undergoing hemodialysis.


Assuntos
Disfunção Cognitiva , Terapia de Reposição de Enzimas , Doença de Fabry , Diálise Renal , Humanos , Masculino , Doença de Fabry/psicologia , Doença de Fabry/complicações , Diálise Renal/psicologia , Pessoa de Meia-Idade , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/psicologia , Progressão da Doença , Efeitos Psicossociais da Doença
2.
PLoS One ; 19(5): e0302525, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38722989

RESUMO

BACKGROUND: Patients with end stage kidney disease (ESKD) receiving haemodialysis experience multiple symptoms, which can present physical and emotional challenges for both patients and their informal caregivers. Caregivers can experience anxiety, depression, and social isolation negatively impacting their overall wellbeing and resulting in caregiver burden. The needs of this group of caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. AIM: The aim of this study Is to explore the unmet needs and experiences of caregivers of patients with ESKD receiving haemodialysis, and to determine the components of a supportive intervention. DESIGN: A qualitative study using semi-structured interviews (n = 24) with informal caregivers. An interpretive qualitative framework was employed to generate a rich understanding of the unmet needs and experiences of caregivers. Data was analysed using thematic analysis. Interviews were transcribed verbatim and data management was assisted through NVIVO version 11. SETTING/PARTICIPANTS: Twenty-four informal caregivers were purposively recruited from two haemodialysis settings within Northern Ireland. RESULTS: Three themes were identified: (1) The negative impact of distress, anxiety, and isolation on caregivers due to their caregiving responsibilities (2) Inadequate information and knowledge about the complexities of renal care (3) The benefits of spiritual beliefs, stress management and peer support in relieving the caregiving burden. CONCLUSIONS: Caregivers of patients with ESKD receiving haemodialysis are at increased risk of physical and psychological distress and burden arising from their caregiving role. The unpredictable nature of ESKD and haemodialysis treatment negatively impacts the caregiver experience and adds to the challenges of the role. The information needs of caregivers are not always adequately met and they subsequently lack appropriate knowledge, skills, and guidance to assist them in their caregiving role. Supportive interventions are essential for caregivers to enhance their capability to deliver effective care and improve their quality of life.


Assuntos
Cuidadores , Falência Renal Crônica , Pesquisa Qualitativa , Diálise Renal , Humanos , Cuidadores/psicologia , Diálise Renal/psicologia , Masculino , Feminino , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Falência Renal Crônica/enfermagem , Pessoa de Meia-Idade , Idoso , Adulto , Ansiedade/psicologia , Apoio Social , Qualidade de Vida , Depressão/psicologia , Estresse Psicológico , Necessidades e Demandas de Serviços de Saúde
3.
Actas Esp Psiquiatr ; 52(2): 122-129, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38622009

RESUMO

BACKGROUND: Hemodialysis patients usually suffer from anxiety due to physical and social factors, which belongs to a kind of psychological disorder, easily contributing to the decrease of patients' adherence to the treatment, and seriously affecting the patients' health status and quality of life. Solution-focused group counseling (SFGC) is a kind of psychotherapy proven to improve emotional problems in many fields. Still, the application of this therapy is rare in medical situations. This retrospective study aims to analyze the application of SFGC and probe into the effects on mental states in hemodialysis patients with anxiety. METHODS: From January 2022 to February 2023, 212 patients with hemodialysis and anxiety admitted to our hospital were selected, and 9 patients who did not meet the inclusion criteria were excluded. Finally, 203 patients were included in this retrospective study. According to different clinical management methods, 102 patients receiving routine management were classified as the control group (CG), and 101 patients receiving SFGC on the basis of routine management were included in the observation group (OG). The scores of the self-perceived burden scale (SPBS), medical coping modes questionnaire (MCMQ), and self-rating anxiety scale (SAS) of the two groups were collected. The data collected were calculated and processed by software SPSS 26.0, and the effects of different managements on the mental states of patients with hemodialysis and anxiety were compared. RESULTS: After management, the scores of SPBS in both groups were lower than those before management, and the score in OG was significantly lower than the CG (p < 0.001). After management, the confrontation scores increased, the avoidance and resignation scores decreased in the MCMQ of the two groups, and the scores in the OG changed significantly (p < 0.001). The SAS scores of the two groups after management were significantly lower than those before management, and the OG score was significantly lower than the CG (p < 0.001). CONCLUSION: SFGC has a positive effect on the mental states of patients with hemodialysis and anxiety, which is worthy of further clinical study.


Assuntos
Ansiedade , Qualidade de Vida , Humanos , Estudos Retrospectivos , Ansiedade/terapia , Aconselhamento , Diálise Renal/psicologia
4.
Am J Kidney Dis ; 83(6): 739-749, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38218454

RESUMO

RATIONALE & OBJECTIVE: People with low socioeconomic status are disproportionately affected by kidney failure, and their adverse outcomes may stem from unmet health-related social needs. This study explored hemodialysis patient perspectives on health-related social needs and recommendations for intervention. STUDY DESIGN: Qualitative study using semistructured interviews. SETTINGS & PARTICIPANTS: Thirty-two people with low socioeconomic status receiving hemodialysis at 3 hemodialysis facilities in Austin, Texas. ANALYTICAL APPROACH: Interviews were analyzed for themes and subthemes using the constant comparative method. RESULTS: Seven themes and 21 subthemes (in parentheses) were identified: (1) kidney failure was unexpected (never thought it would happen to me; do not understand dialysis); (2) providers fail patients (doctors did not act; doctors do not care); (3) dialysis is detrimental (life is not the same; dialysis is all you do; dialysis causes emotional distress; dialysis makes you feel sick); (4) powerlessness (dependent on others; cannot do anything about my situation); (5) financial resource strain (dialysis makes you poor and keeps you poor; disability checks are not enough; food programs exist but are inconsistent; eat whatever food is available; not enough affordable housing; unstable housing affects health and well-being); (6) motivation to keep going (faith, support system, will to live); and (7) interventions should promote self-efficacy (navigation of community resources, support groups). LIMITATIONS: Limited quantitative data such as on dialysis vintage, and limited geographic representation. CONCLUSIONS: Dialysis exacerbates financial resource strain, and health-related social needs exacerbate dialysis-related stress. The participants made recommendations to address social needs with an emphasis on increasing support and community resources for this population. PLAIN-LANGUAGE SUMMARY: People receiving dialysis often experience health-related social needs, such as food and housing needs, but little is known about how these impact patients' health and well-being or how to best address them. We interviewed people receiving dialysis about how health-related social needs affect them and what they think dialysis facilities can do to help them address those needs. The participants reported that they often lose their independence after starting dialysis and health-related social needs are common, exacerbate their stress and emotional distress, and reduce their sense of well-being. Dialysis facilities may be able to enhance the experience of these patients by facilitating connections with local resources and providing opportunities for patients to support one another.


Assuntos
Pesquisa Qualitativa , Diálise Renal , Humanos , Masculino , Feminino , Diálise Renal/psicologia , Pessoa de Meia-Idade , Idoso , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Adulto , Necessidades e Demandas de Serviços de Saúde , Avaliação das Necessidades , Texas , Entrevistas como Assunto
5.
Saudi J Kidney Dis Transpl ; 34(6): 642-654, 2023 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-38725213

RESUMO

Hemodialysis (HD) and peritoneal dialysis (PD) treatments impact the economic burden and psychological distress faced by end-stage kidney disease (ESKD) patients and their caregivers. This review aimed to discuss the concept of an economic burden and the economic burden of different treatment options, and to highlight research gaps regarding the scarcity of previous studies relating economic burden to psychological well-being. We searched five electronic databases for papers published in 2010-2020. Papers focusing on measures of the economic burden from the government's perspective and diseases other than ESKD were excluded. Out of the 6635 publications identified, 10 publications were included. Three categories of economic burden were identified, namely, direct medical costs, direct non-medical costs, and indirect costs. Direct medical costs required the highest expenditure, whereas the lowest economic burden was for indirect costs. HD patients incurred a higher economic burden than PD patients. Most of the studies were carried out in Asia. The results of the research suggest that the economic burden may affect patients and caregivers, but it is unclear whether the economic burden affects the psychological well-being of the patients and caregivers. Very few studies have assessed the relationship between economic burden and psychological well-being, and further research is needed to gain further insight into the relationship between these two variables.


Assuntos
Cuidadores , Efeitos Psicossociais da Doença , Custos de Cuidados de Saúde , Falência Renal Crônica , Humanos , Falência Renal Crônica/economia , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Cuidadores/psicologia , Cuidadores/economia , Diálise Renal/economia , Diálise Renal/psicologia , Diálise Peritoneal/economia , Diálise Peritoneal/psicologia , Sobrecarga do Cuidador/economia , Sobrecarga do Cuidador/psicologia
6.
Artigo em Inglês | MEDLINE | ID: mdl-36430108

RESUMO

Chronic kidney disease (CKD) is a serious public health problem that, in recent decades, has taken on significant dimensions with serious effects on the quality of life (QoL) of patients. The purpose of this cross-sectional study is to evaluate the QoL of a sample of hemodialysis patients in Greece and the possible correlations with socio-economic and anthropometric factors, as well as with adherence to the Mediterranean Diet (MD). During September-November 2019, one-hundred and five (n = 105) patients with end-stage CKD (63.4 ± 13.09 years of age) who were regularly monitored in five public and private hemodialysis units in the region of Attica, completed a demographic questionnaire, the MedDietScore questionnaire, and the KDQOL-SF questionnaire. Females presented worse QoL than males (p < 0.05), and older patients presented worse QoL than younger patients (p < 0.01). Patients of higher educational status presented better QoL scores than those of lower educational status (p < 0.01), while those with low financial status presented lower QoL scores than patients of middle and high financial status (p < 0.01). Obese patients had lower QoL scores than overweight patients (p < 0.05), and overweight males scored higher than normal weight males (p < 0.05). Age was negatively correlated to the total and most of the scales of QoL (p < 0.01). A majority of the patients (90.5%) showed a moderate adherence to MD, although "work status" was the only QoL scale that was correlated to MD. Age, educational status and financial status accounted for 28.1% of the variance in the KDQOL-SF total score. Hemodialysis patients need support in various levels, such as social, financial and educational, as well as nutritional counseling to adopt a balanced diet and maintain a healthy weight, in order to achieve a better quality of life.


Assuntos
Qualidade de Vida , Insuficiência Renal Crônica , Masculino , Feminino , Humanos , Qualidade de Vida/psicologia , Estudos Transversais , Sobrepeso , Grécia/epidemiologia , Diálise Renal/psicologia , Insuficiência Renal Crônica/epidemiologia , Insuficiência Renal Crônica/terapia , Escolaridade
7.
Med Care ; 60(3): 240-247, 2022 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-34974490

RESUMO

BACKGROUND: Renal dialysis is a lifesaving but demanding therapy, requiring 3 weekly treatments of multiple-hour durations. Though travel times and quality of care vary across facilities, the extent to which patients are willing and able to engage in weighing tradeoffs is not known. Since 2015, Medicare has summarized and reported quality data for dialysis facilities using a star rating system. We estimate choice models to assess the relative roles of travel distance and quality of care in explaining patient choice of facility. RESEARCH DESIGN: Using national data on 2 million patient-years from 7198 dialysis facilities and 4-star rating releases, we estimated travel distance to patients' closest facilities, incremental travel distance to the next closest facility with a higher star rating, and the difference in ratings between these 2 facilities. We fit mixed effects logistic regression models predicting whether patients dialyzed at their closest facilities. RESULTS: Median travel distance was 4 times that in rural (10.9 miles) versus urban areas (2.6 miles). Higher differences in rating [odds ratios (OR): 0.56; 95% confidence interval (CI): 0.50-0.62] and greater area deprivation (OR: 0.50; 95% CI: 0.48-0.53) were associated with lower odds of attending one's closest facility. Stratified models were also fit based on urbanicity. For rural patients, excess travel was associated with higher odds of attending the closer facility (per 10 miles; OR: 1.05; 95% CI: 1.04-1.06). Star rating differences were associated with lower odds of receiving care from the closest facility among urban (OR: 0.57; 95% CI: 0.51-0.63) and rural patients (OR: 0.18; 95% CI: 0.08-0.44). CONCLUSIONS: Most dialysis patients have higher rated facilities located not much further than their closest facility, suggesting many patients could evaluate tradeoffs between distance and quality of care in where they receive dialysis. Our results show that such tradeoffs likely occur. Therefore, quality ratings such as the Dialysis Facility Compare (DFC) Star Rating may provide actionable information to patients and caregivers. However, we were not able to assess whether these associations reflect a causal effect of the Star Ratings on patient choice, as the Star Ratings served only as a marker of quality of care.


Assuntos
Acessibilidade aos Serviços de Saúde/tendências , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Qualidade da Assistência à Saúde , Diálise Renal/psicologia , Viagem/psicologia , Comportamento de Escolha , Etnicidade/psicologia , Etnicidade/estatística & dados numéricos , Geografia , Humanos , Medicare , Razão de Chances , Grupos Raciais/psicologia , Grupos Raciais/estatística & dados numéricos , Diálise Renal/normas , População Rural/estatística & dados numéricos , Estados Unidos , População Urbana/estatística & dados numéricos
8.
Semin Dial ; 35(6): 504-510, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-34726291

RESUMO

INTRODUCTION: Cognitive impairment and depression are common mental health problems in chronic kidney disease (CKD) patients with maintenance hemodialysis (MHD). Previous studies have proven that cognitive impairment and depression were risk factors for poor prognosis in MHD patients. However, the related factors of cognitive function and the association between cognitive impairment and depression in MHD patients are still unclear. The purpose of this study is to explore the related factors affecting the cognitive function of MHD patients and evaluate the relationship between cognitive function and depression in MHD patients. METHODS: This single-center, cross-sectional study enrolled 160 MHD patients. Cognitive function and depressive symptoms were measured using Montreal Cognitive Assessment (MoCA) and Patient Health Questionnaire-9 (PHQ-9), respectively. RESULTS: Cognitive impairment was detected in 58.1% of 160 MHD patients. Multivariate linear regression analysis showed that age, level of education and homocysteine (HCY) were independent influencing factors of MoCA scores and the scores of attention and abstract thinking were independently correlated with PHQ-9 score after adjusting for confounding factors CONCLUSIONS: These findings indicated that age, level of education and HCY were independently associated with cognitive function, and attention and abstract thinking could independently affect depressive symptoms in MHD patients.


Assuntos
Disfunção Cognitiva , Insuficiência Renal Crônica , Humanos , Diálise Renal/efeitos adversos , Diálise Renal/psicologia , Depressão/diagnóstico , Depressão/etiologia , Estudos Transversais , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/etiologia , Insuficiência Renal Crônica/complicações , Insuficiência Renal Crônica/terapia
9.
Acta Paul. Enferm. (Online) ; 35: eAPE039008234, 2022. tab
Artigo em Português | LILACS, BDENF - Enfermagem | ID: biblio-1374046

RESUMO

Resumo Objetivo Analisar a experiência do estigma em narrativas sobre o adoecimento crônico de homens em tratamento hemodialítico. Métodos Estudo qualitativo desenvolvido com 24 homens em Unidade de Hemodiálise em cidade localizada na região nordeste do Brasil. Os dados foram extraídos de entrevistas individuais em profundidade, submetidas à análise metodológica do Discurso do Sujeito Coletivo e interpretados à luz da teoria do estigma. Resultados As narrativas indicam as marcas da doença, quando estranham o próprio corpo e se percebem diferentes. Evidencia componentes do estigma a exemplo do descrédito, perda do status, afastamento e aplicação de rótulos. Também percebem as consequências da estigmatização, adotam medidas de autopreservação e ressaltam a importância do cuidado recebido de enfermeiras para seu enfrentamento. Conclusão A estigmatização cria barreiras para a sociabilidade, acesso a bens e serviços de saúde e seguridade social, e repercute sobre a imagem corporal, adaptação e enfrentamento do adoecimento crônico.


Resumen Objetivo Analizar la experiencia del estigma en narrativas sobre la dolencia crónica de hombres en tratamiento hemodialítico. Métodos Estudio cualitativo desarrollado con 24 hombres en Unidad de Hemodiálisis en una ciudad ubicada en la región nordeste de Brasil. Los datos se obtuvieron mediante entrevistas individuales en profundidad, sometidas al análisis metodológico del Discurso del Sujeto Colectivo e interpretados a la luz de la teoría del estigma. Resultados Las narrativas indican las marcas de la enfermedad, al extrañar el propio cuerpo y se perciben distintos. Evidencia componentes del estigma como ejemplo del descrédito, pérdida del estatus, alejamiento y atribución de clasificaciones. De la misma forma perciben las consecuencias de la estigmatización, adoptan medidas de autopreservación y destacan la importancia del cuidado recibido de las enfermeras para el enfrentamiento. Conclusión La estigmatización crea barreras para la sociabilidad, acceso a bienes y servicios de salud y seguridad social y tiene y repercute sobre la imagen corporal, adaptación y enfrentamiento de la enfermedad crónica.


Abstract Objective To analyze the experience of stigma in narratives about the chronic illness of men on hemodialysis. Method Qualitative study conducted with 24 men in a Hemodialysis Unit in a city located in the Northeast region of Brazil. Data were extracted with in-depth individual interviews, which were analyzed according to the Discourse of the Collective Subject and interpreted under the light of stigma theory. Results The narratives indicate the marks of the disease, when men are placed at odds with their own bodies and perceive themselves as different. The results show components of stigma such as discredit, loss of status, estrangement and labeling. The men also perceive the consequences of stigmatization, adopt self-preservation measures and emphasize the importance of the care received from nurses to face this reality. Conclusion Stigma creates barriers to socialization, access to health and social security and affects body image, adaptation and coping with chronic illness.


Assuntos
Humanos , Masculino , Adulto , Pessoa de Meia-Idade , Diálise Renal/psicologia , Insuficiência Renal Crônica/psicologia , Insuficiência Renal Crônica/terapia , Estigma Social , Entrevistas como Assunto , Pesquisa Qualitativa , Saúde do Homem , Frustração , Fatores Sociais
10.
Nutrients ; 13(7)2021 Jul 03.
Artigo em Inglês | MEDLINE | ID: mdl-34371809

RESUMO

People receiving haemodialysis have considerable and complex dietary and healthcare needs, including co-morbidities. A recent New Zealand study has shown that few patients on haemodialysis are able to meet nutritional requirements for haemodialysis. This study aims to describe the perspectives and experiences of dietary management among patients on haemodialysis in New Zealand. This exploratory qualitative study used in-depth semi-structured interviews. Purposive sampling was used to recruit participants from different ethnic groups. Forty interviews were conducted, audio-recorded and transcribed verbatim. An inductive approach was taken using thematic analysis. Forty participants were interviewed. Participants spoke of major disruption to their lives as a result of their chronic kidney disease and being on haemodialysis, including loss of employment, financial challenges, loss of independence, social isolation and increased reliance on extended family. Most had received adequate dietary information, although some felt that more culturally appropriate support would have enabled a healthier diet. These findings show that further support to make the recommended dietary changes while on haemodialysis should focus on socio-cultural factors, in addition to the information already provided.


Assuntos
Dieta/psicologia , Terapia Nutricional/psicologia , Diálise Renal/psicologia , Insuficiência Renal Crônica/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Efeitos Psicossociais da Doença , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Nova Zelândia , Pesquisa Qualitativa , Qualidade de Vida , Insuficiência Renal Crônica/terapia
11.
BMC Nephrol ; 22(1): 280, 2021 08 16.
Artigo em Inglês | MEDLINE | ID: mdl-34399714

RESUMO

BACKGROUND: End-Stage Kidney Disease, the most severe form of chronic kidney disease, is fatal if not treated by renal replacement therapy. Thus, patients with End-Stage Kidney Disease depend on hemodialysis as a lifesaving treatment for the remainder of their lives. However, the health-related quality of life (HRQOL) of patients on hemodialysis is much more underappreciated in resource limited countries. METHODS: A hospital based cross-sectional study was conducted in Addis Ababa, Ethiopia, from August 01 to October 31, 2019. All patients who were on hemodialysis in five randomly selected public and private hospitals (n = 125) were included in the study. Data were administered by trained nurses by using a standardized Kidney Disease Quality of Life questionnaire. Clinical data were extracted from the patients' medical charts. HRQOL was categorized as low, if the overall mean score was ≤ 50, or as high, if the overall mean score was > 50. Factors associated with lower HRQOL were identified by multi-variable binary logistic regression analysis and expressed by adjusted odds ratio (aOR) and its respective 95 % confidence interval. RESULTS: The mean age of the study participants (n = 125) was 50.33 years (± 15.07) and more than two-thirds (68.8 %) of the participants were males. The mean score of HRQOL was 49.08 ± 11.09, with 48.0 % (95 % CI: 42.2 - 54.5 %) of them had lower HRQOL. Unemployed patients (aOR = 2.40, 95 % CI: 1.10-5.90) and patients who had hemodialysis 2 times per week (aOR = 1.71, 95 % CI: 1.07-3.83) had lower HRQOL. Elderly patients had higher odds of having lower mean score on the burden of kidney disease (aOR = 2.07; 95 % CI 1.18-4.13) as compared to the younger patients. CONCLUSIONS: Nearly half of the patients with ESKD on hemodialysis had lower overall HRQOL which is associated with their unemployment status and frequency of hemodialysis per week. Elderly patients had lower mean score of burden of kidney disease. Therefore, quality of life of patients with chronic dialysis should be given special attention during the patients' care. Measures should be taken by the government to ensure accessibility and affordability of the hemodialysis services in the country.


Assuntos
Falência Renal Crônica , Qualidade de Vida , Diálise Renal , Fatores Etários , Efeitos Psicossociais da Doença , Estudos Transversais , Etiópia/epidemiologia , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Falência Renal Crônica/epidemiologia , Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Masculino , Pessoa de Meia-Idade , Diálise Renal/métodos , Diálise Renal/psicologia , Inquéritos e Questionários , Desemprego/estatística & dados numéricos
12.
PLoS One ; 16(7): e0253966, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34283851

RESUMO

BACKGROUND: Compared to in-centre, home hemodialysis is associated with superior outcomes. The impact on patient experience and clinical outcomes of consistently providing the choice and training to undertake hemodialysis-related treatment tasks in the in-centre setting is unknown. METHODS: A stepped-wedge cluster randomised trial in 12 UK renal centres recruited prevalent in-centre hemodialysis patients with sites randomised into early and late participation in a 12-month breakthrough series collaborative that included data collection, learning events, Plan-Study-Do-Act cycles, and teleconferences repeated every 6 weeks, underpinned by a faculty, co-production, materials and a nursing course. The primary outcome was the proportion of patients undertaking five or more hemodialysis-related tasks or home hemodialysis. Secondary outcomes included independent hemodialysis, quality of life, symptoms, patient activation and hospitalisation. ISRCTN Registration Number 93999549. RESULTS: 586 hemodialysis patients were recruited. The proportion performing 5 or more tasks or home hemodialysis increased from 45.6% to 52.3% (205 to 244/449, difference 6.2%, 95% CI 1.4 to 11%), however after analysis by step the adjusted odds ratio for the intervention was 1.63 (95% CI 0.94 to 2.81, P = 0.08). 28.3% of patients doing less than 5 tasks at baseline performed 5 or more at the end of the study (69/244, 95% CI 22.2-34.3%, adjusted odds ratio 3.71, 95% CI 1.66-8.31). Independent or home hemodialysis increased from 7.5% to 11.6% (32 to 49/423, difference 4.0%, 95% CI 1.0-7.0), but the remaining secondary endpoints were unaffected. CONCLUSIONS: Our intervention did not increase dialysis related tasks being performed by a prevalent population of centre based patients, but there was an increase in home hemodialysis as well as an increase in tasks among patients who were doing fewer than 5 at baseline. Further studies are required that examine interventions to engage people who dialyse at centres in their own care.


Assuntos
Participação do Paciente/psicologia , Diálise Renal/normas , Adulto , Idoso , Idoso de 80 Anos ou mais , Análise Custo-Benefício , Feminino , Hospitalização , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Diálise Renal/psicologia , Inquéritos e Questionários
14.
Am J Kidney Dis ; 78(4): 489-500.e1, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33872688

RESUMO

RATIONALE & OBJECTIVE: Individuals faced with decisions regarding kidney replacement therapy options need information on how dialysis treatments might affect daily activities and quality of life, and what factors might influence the evolution over time of the impact of dialysis on daily activities and quality of life. STUDY DESIGN: Observational cohort study. SETTING & PARTICIPANTS: 7,771 hemodialysis (HD) and peritoneal dialysis (PD) participants from 6 countries participating in the Peritoneal and Dialysis Outcomes and Practice Patterns Studies (PDOPPS/DOPPS). PREDICTORS: Patient-reported functional status (based on daily living activities), country, demographic and clinical characteristics, and comorbidities. OUTCOME: Employment status and patient-reported outcomes (PROs) including Kidney Disease Quality of Life (KDQOL) instrument physical and mental component summary scores (PCS, MCS), kidney disease burden score, and depression symptoms (Center for Epidemiologic Studies Depression Scale [CES-D] score > 10). ANALYTICAL APPROACH: Linear regression (PCS, MCS, kidney disease burden score), logistic regression (depression symptoms), adjusted for predictors plus 12 additional comorbidities. RESULTS: In both dialysis modalities, patients in Japan had the highest PCS and employment (55% for HD and 68% for PD), whereas those in the United States had the highest MCS score, lowest kidney disease burden, and lowest employment (20% in HD and 42% in PD). After covariate adjustment, the association of age, sex, dialysis vintage, diabetes, and functional status with PROs was similar in both modalities, with women having lower PCS and kidney disease burden scores. Lower functional status (score <11) was strongly associated with lower PCS and MCS scores, a much greater burden of kidney disease, and greater likelihood of depression symptoms (CES-D, >10). The median change in KDQOL-based PROs was negligible over 1 year in participants who completed at least 2 annual questionnaires. LIMITATIONS: Selection bias due to incomplete survey responses. Generalizability was limited to the dialysis populations of the included countries. CONCLUSIONS: Variation exists in quality of life, burden of kidney disease, and depression across countries but did not appreciably change over time. Functional status remained one of the strongest predictors of all PROs. Routine assessment of functional status may provide valuable insights for patients and providers in anticipating outcomes and support needs for patients receiving either PD or HD.


Assuntos
Efeitos Psicossociais da Doença , Emprego/psicologia , Diálise Peritoneal/psicologia , Qualidade de Vida/psicologia , Diálise Renal/psicologia , Insuficiência Renal Crônica/psicologia , Idoso , Estudos de Coortes , Estudos Transversais , Emprego/tendências , Feminino , Humanos , Internacionalidade , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Diálise Peritoneal/tendências , Estudos Prospectivos , Diálise Renal/tendências , Insuficiência Renal Crônica/terapia
15.
J Ren Care ; 47(2): 113-122, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33040486

RESUMO

BACKGROUND: Illness perceptions refer to cognitive appraisals that help patients understand and make sense of their condition. Although their importance in health behaviour and outcomes has been evidenced, less is known about cultural influences on mental representations of kidney failure amongst patients receiving haemodialysis in different settings. OBJECTIVE: To explore the illness perceptions of Turkish patients receiving haemodialysis in North Cyprus (Turkish Cypriots). DESIGN: A qualitative study involving individual semistructured interviews. PARTICIPANTS: Fourteen patients receiving haemodialysis, recruited from three state hospitals in North Cyprus. APPROACH: All interviews were conducted in Turkish, audio-recorded, and transcribed verbatim. They were analysed inductively in the original language using reflexive thematic analysis. Once the analysis was completed, it was translated into English. Quality assurance was integral to the research process to retain semantic equivalence. FINDINGS: Three themes were developed. "Illness appraisal" highlighted a lack of factual knowledge about kidney failure and how this is related to attempts at sense-making, whilst retaining hope for the future. "Life-changing effects" centred around the negative consequences of haemodialysis across multiple domains (e.g., emotional and physical). "Active coping strategies" focused on mechanisms that patients adopt to manage the burden of haemodialysis, particularly approaches that are culturally rooted. CONCLUSION: There is a need for better communication to address the lack of individual patient knowledge about kidney failure. Haemodialysis is described as a burdensome treatment though existing coping mechanisms suggest that psycho-spiritual interventions may be advantageous to aid adjustment for Turkish Cypriots receiving haemodialysis.


Assuntos
Pacientes/psicologia , Percepção , Diálise Renal/psicologia , Efeitos Psicossociais da Doença , Chipre , Humanos , Pesquisa Qualitativa , Qualidade de Vida/psicologia , Diálise Renal/métodos , Diálise Renal/normas
16.
Blood Purif ; 50(3): 319-327, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33113536

RESUMO

BACKGROUND: Since the outbreak of COVID-19 in December 2019, it has spread rapidly and widely, bringing great psychological pressure to the public. In order to prevent the epidemic, traffic lockdown was required in many areas of China, which led to inconvenience of treatment for dialysis patients. This study was conducted to explore the psychological distress and the psychological demand induced by CO-VID-19 in the patients undergoing dialysis and compare the difference between hemodialysis (HD) and peritoneal dialysis (PD) patients during the traffic lockdown period. METHODS: Questionnaires were given to the dialysis patients in the West China Hospital of Sichuan University. The Impact of Event Scale (IES) was used to investigate the patients' trauma-related distress in response to COVID-19. RESULTS: 232 eligible respondents were enrolled in this cross-section study, consisting of 156 PD patients and 76 HD patients. The median IES score for all the enrolled patients was 8.00 (2.00-19.00), which belonged to the subclinical dimension of post-traumatic stress symptoms (PTSS). HD patients had a significant higher IES score than PD patients (11.50 vs. 8.00) (p < 0.05). HD patients already got more psychological support from the medical staff. According to IES scores, 22.4% HD patients and 13.4% PD patients were classified as having moderate or severe PTSS, which need psychological support (p < 0.05). But more patients of both groups considered psychological support was necessary (HD: 50%, PD: 45.5%) (p > 0.05). In the multivariate regression analysis, we found that dialysis vintage, the impact of COVID-19 on the severity of illness and daily life, and confidence in overcoming the disease contributed to IES score (p < 0.05). CONCLUSIONS: HD patients had more severe trauma-related stress symptoms than PD patients. When major public healthy events occurred, careful psychological estimate and sufficient psychological support should be provided to the dialysis patients, especially to the HD patients.


Assuntos
COVID-19/psicologia , Falência Renal Crônica/terapia , Angústia Psicológica , Sistemas de Apoio Psicossocial , Quarentena/psicologia , Diálise Renal/psicologia , SARS-CoV-2 , Transtornos de Estresse Pós-Traumáticos/etiologia , Atividades Cotidianas , Adulto , COVID-19/prevenção & controle , Estudos Transversais , Feminino , Necessidades e Demandas de Serviços de Saúde , Hemodiálise no Domicílio/psicologia , Humanos , Falência Renal Crônica/complicações , Falência Renal Crônica/psicologia , Masculino , Pessoa de Meia-Idade , Diálise Peritoneal/psicologia , Relações Profissional-Paciente , Qualidade de Vida , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Inquéritos e Questionários , Centros de Atenção Terciária/estatística & dados numéricos , Índices de Gravidade do Trauma , Adulto Jovem
17.
BMC Nephrol ; 21(1): 472, 2020 11 10.
Artigo em Inglês | MEDLINE | ID: mdl-33172416

RESUMO

BACKGROUND: The caregivers of children on peritoneal dialysis face heavy care burdens and may have a high risk of depression. This study aimed to describe the prevalence and severity of depression and identify its related demographic and socioeconomic factors in the caregivers of children on peritoneal dialysis in China. METHODS: A multicenter cross-sectional study was conducted in four pediatric dialysis centers in four tertiary children's hospitals in mainland China. Primary caregivers of children with end-stage kidney disease and currently on peritoneal dialysis were screened and recruited from December 2018 to July 2019. A self-developed questionnaire and the Self-Rating Depression Scale (SDS) were administered to the participants by a trained nurse in each center. The chi-square test or Fisher's exact test, one-way ANOVA, and the Mann-Whitney U test were used to compare the prevalence of depressive symptoms by demographic features. A multivariate logistic regression analysis was used to identify factors related to depressive symptoms in caregivers of children on peritoneal dialysis. RESULTS: One hundred twenty-one caregivers were included in the data analysis. The mean age of the caregivers was 40.1 ± 8.1 years. More than 75% of the participants were female, married, and unemployed. The overall prevalence of depressive symptoms was 59%. In total, 46 (38%), 20 (17%) and 5 (4%) caregivers reported mild, moderate, and severe depressive symptoms, respectively. In the univariate analysis, caregivers with an average household income per month under 4000 RMB and caregivers of children undergoing laparoscopic surgery had a higher prevalence of depressive symptoms. Characteristics such as treatment center, duration on PD, PD modalities, and history of peritonitis episodes showed no difference in terms of the prevalence of depressive symptoms. The multivariate logistic regression analysis demonstrated that an average household income per month under 4000 RMB was the associated factor for caregivers' depressive symptoms. CONCLUSIONS: The caregivers of children on peritoneal dialysis in mainland China were socially vulnerable and experienced depression. Those who had a higher average household income were less vulnerable to depression.


Assuntos
Cuidadores/psicologia , Depressão/epidemiologia , Pais/psicologia , Diálise Renal , Adolescente , Adulto , Criança , China/epidemiologia , Estudos Transversais , Feminino , Humanos , Renda , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Prevalência , Diálise Renal/economia , Diálise Renal/psicologia , Fatores Socioeconômicos
18.
Qual Life Res ; 29(10): 2705-2714, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32654053

RESUMO

BACKGROUND: Patients with kidney failure have multifaced clinical needs. Continuous quality improvement (CQI) programs initiated by large healthcare provider networks bear the promise of improving guideline adherence and improving patient-centered outcome, including health-related quality of life (HRQOL). We aimed at evaluating the association between key performance indicators (KPI) adopted for our CQI and HRQOL in a large network of dialysis providers. METHODS: We conducted a survey study in 39 centers belonging to the Portuguese Fresenius Medical Care (FME) network, in September 2017. For each participant, we retrospectively extracted clinical information during the 6-month period preceding survey administration. We used this information to calculate KPI as defined by the FME-CQI policy. Those KPI were selected in the FME-CQI policy as modifiable intermediate endpoints for which previous evidence suggested a causal relationship with patients' morbidity and mortality. HRQOL was assessed by the Kidney Disease Quality of Life Short Form 36 (KDQOL-36) questionnaire. RESULTS: Among 4691 eligible patients who were invited to participate in the survey, 2263 (48.2%) answered the self-administered survey. Based on KPI standards, patients had 1.5 (± 1.2) off-target clinical parameters on average. KDQOL-36 score were generally higher than those observed in European reference population. We found a significant linear association between KPI parameters and HRQOL. This pattern was robust to adjustment for satisfaction scores. CONCLUSIONS: Our data demonstrated a graded, monotonic, dose-response relationship between the number of off-target KPIs and HRQOL. Such relationship was not mediated by patients' satisfaction and may be attributed to amelioration of disease-specific symptoms and functional capacity.


Assuntos
Setor de Assistência à Saúde/normas , Qualidade de Vida/psicologia , Diálise Renal/métodos , Idoso , Feminino , Humanos , Estudos Longitudinais , Masculino , Portugal , Diálise Renal/psicologia , Estudos Retrospectivos , Inquéritos e Questionários
19.
Medicine (Baltimore) ; 99(20): e20202, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-32443343

RESUMO

AIM: Maintenance hemodialysis (MHD) frequency is associated with survival and complication rates. Achieving the optimal balance between healthcare, quality of life (QOL), and medical costs is challenging. We compared complications, inflammatory status, nutritional status, and QOL between patients with different MHD frequencies. MATERIAL AND METHODS: This was a multicenter randomized trial of patients treated between May 2011 and August 2017 at 3 tertiary hospitals in Wenzhou. Patients were grouped according to their treatment schedule over 1 year: twice-weekly or 3-times-weekly. Complications, biochemistry parameters, and QOL (KDQOL-SFTM 1.3 scale) were assessed. RESULTS: One hundred forty patients were included aged 29 to 68 years (mean age, 50.9 ±â€Š4.3 years). There were no significant differences in infection, heart failure, or cerebral hemorrhage complications between the 2 groups (P = .664). Pre-dialysis hemoglobin, high-sensitivity C-reactive protein, serum albumin, total cholesterol, triglyceride, calcium, phosphate, parathyroid hormone, and ejection fraction were similar in both groups (P > .05). After 1 year of MHD, both groups exhibited significant improvements in these parameters (all P < .05) with no significant differences between groups. Serum creatinine, blood urea nitrogen (BUN), and weekly standard hemodialysis treatment adequacy did not improve after treatment (all P > .05), although a difference in BUN was observed between the 2 groups (P < .001). QOL was superior in the twice-weekly group than in the 3-times-weekly group (all P < .05), except for social support, which was slightly better in the 3-times-weekly group than in the twice-weekly group. CONCLUSIONS: Twice- and 3-times-weekly MHD resulted in comparable inflammatory and nutritional clinical outcomes and adverse events. QOL was better for the twice-weekly schedule. Even for patients with economic constraints, twice- or 3-times-weekly MHD should be selected with caution after consideration of BUN levels at baseline.


Assuntos
Falência Renal Crônica/terapia , Diálise Renal/efeitos adversos , Diálise Renal/tendências , Nitrogênio da Ureia Sanguínea , Proteína C-Reativa/análise , Cálcio/sangue , Hemorragia Cerebral/epidemiologia , China/epidemiologia , Colesterol/sangue , Creatinina/sangue , Feminino , Insuficiência Cardíaca/epidemiologia , Hemoglobinas/análise , Humanos , Infecções/epidemiologia , Inflamação/epidemiologia , Masculino , Pessoa de Meia-Idade , Estado Nutricional/fisiologia , Hormônio Paratireóideo/sangue , Fosfatos/sangue , Qualidade de Vida/psicologia , Diálise Renal/economia , Diálise Renal/psicologia , Albumina Sérica , Volume Sistólico/fisiologia , Triglicerídeos/sangue
20.
Am J Kidney Dis ; 76(3): 407-416, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32199710

RESUMO

Patient experience is an integral aspect of the care we deliver to our dialysis patients. Standardized evaluation of patient experience with in-center hemodialysis started in the United States in 2012 with the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH CAHPS) survey. Over time there have been a few changes to this survey, how it is administered, and how it fits within the Centers for Medicare & Medicaid Services End-Stage Renal Disease Quality Incentive Program. Although the importance of this survey has been growing, knowledge of this survey among nephrologists has lagged. We provide a review of the survey development and how its use has evolved since 2012. We discuss in detail research done on this survey to date, including survey psychometric evaluation. We highlight gaps in our knowledge that need further research and end with general recommendations to improve patient experience within hemodialysis facilities, which we believe is a worthy goal for all members of the dialysis team.


Assuntos
Unidades Hospitalares de Hemodiálise , Melhoria de Qualidade , Diálise Renal , Atitude do Pessoal de Saúde , Cuidadores/psicologia , Comunicação , Pesquisas sobre Atenção à Saúde/métodos , Pesquisas sobre Atenção à Saúde/tendências , Unidades Hospitalares de Hemodiálise/economia , Humanos , Equipe de Assistência ao Paciente , Educação de Pacientes como Assunto , Satisfação do Paciente/estatística & dados numéricos , Postura , Relações Profissional-Paciente , Psicometria , Reembolso de Incentivo , Diálise Renal/economia , Diálise Renal/psicologia , Habilidades Sociais , Resultado do Tratamento , Estados Unidos
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