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1.
Arch. esp. urol. (Ed. impr.) ; 77(1): 49-56, 28 jan. 2024. tab
Artigo em Inglês | IBECS | ID: ibc-230498

RESUMO

Objective: This study aims to explore the effect of the solution-focused approach on the insight and psychological emotion of patients with nephrotic syndrome (NS). Methods: The clinical data of 185 Qingdao Municipal Hospital patients with NS from December 2020 to December 2022 were selected for retrospective analysis. According to different nursing modes, the patients were divided into the control group (CG, conventional nursing, n = 90) and the study group (SG, conventional nursing + solution-focused approach, n = 95). The Hospital Anxiety and Depression Scale (HADS) was used to assess the anxiety and depression levels of the patients, and the insight and treatment attitudes questionnaire (ITAQ) was adopted to evaluate their insight. The short form-36 health survey (SF-36) was used to evaluate the patients’ quality of life. The relationship of patients’ anxiety and depression levels with their insight was analysed. Results: No statistical difference in the gender, age, body mass index, education level, disease types, hypertension, hyperlipidaemia, oedema, monthly family per capita income and residence indicators of the patients in the two groups (p > 0.05) was found. The SG had distinctly lower HADS-A and HADS-D scores and a significantly higher ITAQ score than the CG after intervention (p < 0.001). After intervention, the physiological function, physiological role, vitality, social function, physical pain, general health, emotional role and mental health scores of the SG were overtly higher than those of the CG (p < 0.05). Results of the Pearson analysis show that the anxiety and depression scores are negatively correlated with the insight scores (r = –0.265, –0.255; All p < 0.001). Conclusions: The application of the solution-focused approach to NS patients can improve their insight and anxiety and depression levels with certain clinical application value, providing more directions for the follow-up treatment of NS (AU)


Assuntos
Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Síndrome Nefrótica/psicologia , Ansiedade/psicologia , Depressão/psicologia , Estudos Retrospectivos
2.
Arch Esp Urol ; 76(4): 283-289, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37455527

RESUMO

OBJECTIVE: This study aimed to explore the influencing factors of quality of life (QOL) and establish a prediction model in patients with primary nephrotic syndrome (PNS). METHODS: A single-centre retrospective study was conducted on 245 patients with PNS admitted to Zibo Central Hospital from August 2020 to August 2022. According to the 36-Item Short-Form Health Survey (SF-36) for QOL evaluation, the patients were divided into the good QOL group (the total score ≥50 points) and poor QOL group (the total score <50 points). Univariate analysis was conducted by collecting clinical data from patients, and multiple logistic regression analysis was carried out on single factors with statistically significant differences to construct a clinical prediction model. The diagnostic efficacy of the prediction model was evaluated using the receiver operating characteristic (ROC) curve. RESULTS: A total of 245 questionnaires were distributed, and 243 valid questionnaires were recovered, in which 143 cases had good QOL, with an average score of (71.86 ± 10.83) points, and 100 cases had poor QOL, with an average score of (40.03 ± 5.95) points. Statistical differences were observed in age, education level, monthly family average income, payment methods of medical expenses, albumin, 24-hour urinary protein quantification (24 h UPro) and serum uric acid (SUA) in both groups (p < 0.05), whereas no statistical difference was found in gender, body mass index (BMI) and marital status (p > 0.05). The multiple logistic regression analysis showed that age (X1), monthly family average income (X2), payment methods of medical expenses (X3), albumin (X4), 24 h UPro (X5) and SUA (X6) were risk factors for the QOL of patients with PNS, with Y = -12.105 + 0.130X1 + 0.457X2 + 0.448X3 + -0.161X4 + 0.823X5 + 0.025X6 as the regression prediction model. The results of ROC curve showed that the area under the curve (AUC) was 0.987 with standard error of 0.005 (p < 0.001), and 95% CI was 0.976-0.998. CONCLUSIONS: Age, monthly family average income, payment methods of medical expenses, albumin, 24 h UPro and SUA are risk factors that affect the QOL of patients with PNS, and the construction of prediction model has good evaluation value and can provide a reference for clinical practice.


Assuntos
Síndrome Nefrótica , Qualidade de Vida , Síndrome Nefrótica/psicologia , Humanos , Estudos Retrospectivos , Regras de Decisão Clínica , Ácido Úrico/sangue
3.
Singapore Med J ; 64(9): 557-562, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-34600452

RESUMO

Introduction: The study was performed to determine the psychological problems in children with idiopathic nephrotic syndrome (INS) while they were on steroid therapy, as compared to healthy children. Methods: This prospective cohort study was conducted in a paediatric clinic of a tertiary hospital. Parents of the participants in the INS group and control group (comprising children without chronic illness) completed questionnaires using the Child Behavioural Checklist (CBCL). The CBCL measures a range of age-specific emotional and psychological problems, including internalising and externalising domains. Analyses of the CBCL scores between groups were done using Mann-Whitney U test. Results: A total of 140 children were recruited with an equal number in the INS and control groups. There was a significant difference in the mean total CBCL scores between the INS group and the control group, specifically in the withdrawal, somatic, anxious and aggressiveness subdomains. Similar findings were demonstrated in correlation between total psychological problems and corticosteroid dosage. In the INS group, steroid dose and cushingoid features were found to have a significant positive association with internalising psychological problems. Conclusion: Children with INS on corticosteroid treatment showed an increase in internalising and externalising scores, as compared to healthy children.


Assuntos
Transtornos do Comportamento Infantil , Glucocorticoides , Síndrome Nefrótica , Comportamento Problema , Criança , Humanos , Transtornos do Comportamento Infantil/induzido quimicamente , Transtornos do Comportamento Infantil/etnologia , Transtornos do Comportamento Infantil/psicologia , Síndrome Nefrótica/tratamento farmacológico , Síndrome Nefrótica/etnologia , Síndrome Nefrótica/psicologia , Comportamento Problema/psicologia , Estudos Prospectivos , População do Sudeste Asiático , Glucocorticoides/efeitos adversos , Glucocorticoides/uso terapêutico
4.
Singapore medical journal ; : 557-562, 2023.
Artigo em Inglês | WPRIM (Pacífico Ocidental) | ID: wpr-1007296

RESUMO

INTRODUCTION@#The study was performed to determine the psychological problems in children with idiopathic nephrotic syndrome (INS) while they were on steroid therapy, as compared to healthy children.@*METHODS@#This prospective cohort study was conducted in a paediatric clinic of a tertiary hospital. Parents of the participants in the INS group and control group (comprising children without chronic illness) completed questionnaires using the Child Behavioural Checklist (CBCL). The CBCL measures a range of age-specific emotional and psychological problems, including internalising and externalising domains. Analyses of the CBCL scores between groups were done using Mann-Whitney U test.@*RESULTS@#A total of 140 children were recruited with an equal number in the INS and control groups. There was a significant difference in the mean total CBCL scores between the INS group and the control group, specifically in the withdrawal, somatic, anxious and aggressiveness subdomains. Similar findings were demonstrated in correlation between total psychological problems and corticosteroid dosage. In the INS group, steroid dose and cushingoid features were found to have a significant positive association with internalising psychological problems.@*CONCLUSION@#Children with INS on corticosteroid treatment showed an increase in internalising and externalising scores, as compared to healthy children.


Assuntos
Criança , Humanos , Transtornos do Comportamento Infantil/psicologia , Síndrome Nefrótica/psicologia , Comportamento Problema/psicologia , Estudos Prospectivos , População do Sudeste Asiático , Glucocorticoides/uso terapêutico
5.
Health Qual Life Outcomes ; 19(1): 144, 2021 May 12.
Artigo em Inglês | MEDLINE | ID: mdl-33980318

RESUMO

INTRODUCTION: Most of the studies reporting the negative impact of idiopathic nephrotic syndrome on health-related quality of life in children and adolescents were conducted with generic quality-of-life instruments rather than disease-specific instruments. The consistency of these studies' findings using these generic instruments is not well established. AIM: This systematic review aims to determine the reliability of current generic quality-of-life instruments in assessing health-related quality of life among children and adolescents with idiopathic nephrotic syndrome. METHODS: We searched the PubMed, MEDLINE, EMBASE, and Google Scholar databases for articles published between 2000 and 2020, using appropriate descriptors. We included primary studies that met the eligibility criteria, independently screened their titles and abstracts, and removed all duplicates during the study-selection process. We resolved disagreements until a consensus was reached on study selection. We independently retrieved relevant data, including the generic quality-of-life instruments and the subjects' and controls' aggregate health-related quality of life scores, using a preconceived data-extraction form. RESULTS: Ten original articles were selected for qualitative and quantitative analyses. Some of the studies reported the following significant findings. The mean health-related quality of life scores for children with prevalent and incident nephrotic syndrome were 68.6 (range, 52.6-84.6) and 73.7 (range, 55.9-91.5), respectively. Children with idiopathic nephrotic syndrome and their controls with other chronic diseases had median scores of 65 (interquartile range, 59-68.75) and 62.2 (interquartile range, 58.05-65.78). Patients on oral immunosuppressive drug and intravenous rituximab reportedly had median scores of 76.2 and 72.6 and mean scores of 71.4 (range, 55.4-87.4) and 61.6 (range, 42.1-81.1) respectively for quality-of-life assessment on the 'school functioning domain.' CONCLUSIONS: The health-related quality of life scores in patients with idiopathic nephrotic syndrome are consistently low. Lower scores occur in prolonged disease duration and severe clinical phenotypes, whereas the scores are higher than the scores obtained in other chronic diseases. These consistent findings underscore the reliability of the current generic instruments in assessing health-related quality of life in patients with idiopathic nephrotic syndrome.


Assuntos
Síndrome Nefrótica/psicologia , Psicometria/normas , Qualidade de Vida/psicologia , Adolescente , Criança , Feminino , Humanos , Masculino , Reprodutibilidade dos Testes
6.
BMC Nephrol ; 21(1): 509, 2020 11 25.
Artigo em Inglês | MEDLINE | ID: mdl-33238900

RESUMO

BACKGROUND: Parents' adaptation affects the health outcomes of children with chronic kidney diseases (CKD). Identifying factors that affect parents' adaptation is necessary to understand their adaptation status. This study aims to explore factors related to the adaptation of parents who have children with CKD. METHODS: This was a qualitative study with a content analysis approach. Seventeen parents of children with CKD were selected by using purposive sampling. The leading researcher performed semi-structured, in-depth, face-to-face interviews to collect data. Conventional content analysis was used to analyze data. RESULTS: Two main categories extracted from the data were "adaptation facilitators" and "adaptation barriers." Adaptation facilitators were supported by three sub-categories: "social support", "family capability" and "spiritual beliefs". Four sub-categories of "adaptation barriers" were revealed as: "family-related barriers," "mental stress by others," "the chronic nature of the disease," and "unfavorable treatment conditions." CONCLUSIONS: Identifying the factors influencing parental adaptation helps the medical staff to make the necessary interventions to support the parents. According to this study, increasing parent access to the required information, supporting them financially and emotionally, and helping them identify support resources can facilitate their adaptation to their child's chronic illness. Also, identifying and eliminating adaptation barriers can help parents deal better with their child's chronic disease.


Assuntos
Adaptação Psicológica , Pais/psicologia , Insuficiência Renal Crônica/psicologia , Estresse Psicológico , Criança , Feminino , Humanos , Irã (Geográfico) , Masculino , Síndrome Nefrótica/psicologia , Relações Profissional-Família , Pesquisa Qualitativa , Insuficiência Renal Crônica/terapia , Apoio Social
7.
Qual Life Res ; 29(8): 2185-2196, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32016684

RESUMO

PURPOSE: This research aimed to evaluate Quality of life (QoL) in Egyptian children with idiopathic Nephrotic syndrome (INS) in comparison to healthy children and children with chronic non-renal illnesses. METHODS: In this questionnaire-based study, 300 children were included, 100 with INS and 2 matched control groups: healthy group, and chronic non-renal illness group. QoL was assessed using the Pediatric Quality of Life Inventory (PedsQL™ 4.0 Generic Core Scales) and the Generic Children's QoL Measure (GCQ). RESULTS: All mean scores of PedsQL domains in INS group were significantly higher than chronic non-renal illness group and significantly lower than the healthy control group (p = < 0.001) for all and similar results reported also regarding GCQ scores in INS compared to diseased (p = 0.02) and healthy controls (p = 0.006). Steroid-resistant NS group had lowest scores in all domains (p = < 0.001) compared to other clinical phenotypes of NS group. The long duration of illness, higher number of relapses, high cumulative steroid dose, and high number of medications used were associated with lower PedsQL and GCQ scores (p < 0.001 for all) CONCLUSION: This is the first study to asses QoL in Egyptian children with INS and correlates QoL scores to clinical phenotypes and complications of the disease. Egyptian children with INS need strenuous efforts from pediatricians and psychiatrists to improve QoL. Both PedsQL™ 4.0 scale and GCQ are simple, convenient, and can be used in daily clinical practice to asses QoL in children with NS.


Assuntos
Nível de Saúde , Síndrome Nefrótica/psicologia , Qualidade de Vida/psicologia , Adolescente , Estudos de Casos e Controles , Criança , Estudos Transversais , Egito , Feminino , Humanos , Masculino , Inquéritos e Questionários
9.
J Ren Care ; 46(1): 45-51, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31746128

RESUMO

BACKGROUND: Little is known about health and wellbeing among patients with nephrotic syndrome (NS), despite it being a serious condition in patients with renal failure. In order to promote health, it is important that both healthcare professionals and patients are aware of the signs and symptoms of the disease. OBJECTIVES: The aim was to explore patients' experience of suffering from nephrotic syndrome. DESIGN: An inductive, qualitative method. PARTICIPANTS: Ten adult patients with either newly diagnosed or a relapse of NS treated in a University hospital, south of Sweden from February 2016 to February 2019. MEASUREMENTS: Data were collected using open-ended interviews and analysed by means of Lindseth and Norberg's phenomenological-hermeneutical method. RESULTS: Suffering from NS meant being a stranger in an unfamiliar world of symptoms, signs and medical treatment without professional guidance or piloting, illustrated by four themes: Feeling ill and well at the same time, Being passively adherent, Being in uncertainty, and Trying to comprehend and cope. IMPLICATIONS FOR PRACTICE: The result provides an in-depth understanding of the illness experience among patients with NS and constitutes a foundation for clinical guidelines on treatment, follow-up and health promotion. CONCLUSION: Patients with NS end up in a state of ambiguity due to a profound knowledge deficit that causes uncertainty and a lack of self-management. The experienced lack of professional self-management support is partly compensated for by social support from relatives, enabling those with NS to manage everyday life in a reasonable way.


Assuntos
Adaptação Psicológica , Síndrome Nefrótica/complicações , Conforto do Paciente/normas , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Síndrome Nefrótica/psicologia , Conforto do Paciente/métodos , Conforto do Paciente/estatística & dados numéricos , Pesquisa Qualitativa , Suécia
10.
BMJ ; 365: l1800, 2019 05 23.
Artigo em Inglês | MEDLINE | ID: mdl-31335316

RESUMO

OBJECTIVE: To determine whether extending initial prednisolone treatment from eight to 16 weeks in children with idiopathic steroid sensitive nephrotic syndrome improves the pattern of disease relapse. DESIGN: Double blind, parallel group, phase III randomised placebo controlled trial, including a cost effectiveness analysis. SETTING: 125 UK National Health Service district general hospitals and tertiary paediatric nephrology centres. PARTICIPANTS: 237 children aged 1-14 years with a first episode of steroid sensitive nephrotic syndrome. INTERVENTIONS: Children were randomised to receive an extended 16 week course of prednisolone (total dose 3150 mg/m2) or a standard eight week course of prednisolone (total dose 2240 mg/m2). The drug was supplied as 5 mg tablets alongside matching placebo so that participants in both groups received the same number of tablets at any time point in the study. A minimisation algorithm ensured balanced treatment allocation by ethnicity (South Asian, white, or other) and age (5 years or less, 6 years or more). MAIN OUTCOME MEASURES: The primary outcome measure was time to first relapse over a minimum follow-up of 24 months. Secondary outcome measures were relapse rate, incidence of frequently relapsing nephrotic syndrome and steroid dependent nephrotic syndrome, use of alternative immunosuppressive treatment, rates of adverse events, behavioural change using the Achenbach child behaviour checklist, quality adjusted life years, and cost effectiveness from a healthcare perspective. Analysis was by intention to treat. RESULTS: No significant difference was found in time to first relapse (hazard ratio 0.87, 95% confidence interval 0.65 to 1.17, log rank P=0.28) or in the incidence of frequently relapsing nephrotic syndrome (extended course 60/114 (53%) v standard course 55/109 (50%), P=0.75), steroid dependent nephrotic syndrome (48/114 (42%) v 48/109 (44%), P=0.77), or requirement for alternative immunosuppressive treatment (62/114 (54%) v 61/109 (56%), P=0.81). Total prednisolone dose after completion of the trial drug was 6674 mg for the extended course versus 5475 mg for the standard course (P=0.07). There were no statistically significant differences in serious adverse event rates (extended course 19/114 (17%) v standard course 27/109 (25%), P=0.13) or adverse event rates, with the exception of behaviour, which was poorer in the standard course group. Scores on the Achenbach child behaviour checklist did not, however, differ. Extended course treatment was associated with a mean increase in generic quality of life (0.0162 additional quality adjusted life years, 95% confidence interval -0.005 to 0.037) and cost savings (difference -£1673 ($2160; €1930), 95% confidence interval -£3455 to £109). CONCLUSIONS: Clinical outcomes did not improve when the initial course of prednisolone treatment was extended from eight to 16 weeks in UK children with steroid sensitive nephrotic syndrome. However, evidence was found of a short term health economic benefit through reduced resource use and increased quality of life. TRIAL REGISTRATION: ISRCTN16645249; EudraCT 2010-022489-29.


Assuntos
Assistência de Longa Duração , Síndrome Nefrótica , Prednisolona , Qualidade de Vida , Prevenção Secundária , Adolescente , Criança , Pré-Escolar , Análise Custo-Benefício , Relação Dose-Resposta a Droga , Método Duplo-Cego , Esquema de Medicação , Monitoramento de Medicamentos/métodos , Feminino , Glucocorticoides/administração & dosagem , Glucocorticoides/efeitos adversos , Glucocorticoides/economia , Humanos , Imunossupressores/uso terapêutico , Lactente , Análise de Intenção de Tratamento , Assistência de Longa Duração/economia , Assistência de Longa Duração/métodos , Masculino , Síndrome Nefrótica/diagnóstico , Síndrome Nefrótica/tratamento farmacológico , Síndrome Nefrótica/economia , Síndrome Nefrótica/psicologia , Prednisolona/administração & dosagem , Prednisolona/efeitos adversos , Prednisolona/economia , Prevenção Secundária/economia , Prevenção Secundária/métodos , Resultado do Tratamento
11.
Acta Paediatr ; 108(12): 2267-2273, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31240744

RESUMO

AIM: Severe forms of idiopathic nephrotic syndrome (INS) require immunosuppressive therapy: oral treatment or intravenous therapy (rituximab, RTX). The main objective was to describe quality of life (QOL) in these specific patients. METHODS: Cross-sectional, multicentre, observational study analysed QOL using a standardised questionnaire in children from 7 to 17 years, with a steroid-dependent or steroid-resistant INS in stable remission. The questionnaire consisted of 30 questions concerning physical and emotional well-being, self-esteem, family, friends, school and disease resulting in a global score of 0-100. RESULTS: A total of 110 patients with a mean age of 11.6 years from three French paediatric nephrology centres were included. A total of 71 patients had oral immunosuppressive treatment, 27 had RTX, and 12 had both. 13.6% of patients had a steroid-resistant INS. The mean number of relapses was 5.8. Seventy-eight patients answered the questionnaire. The global score in the whole study population was 74.7; 72.6 in the RTX group, 76.2 in the oral drugs group, (P = 0.49). The results of sub-dimension 'school' were statistically lower in RTX group (61.6 ± 19.5) compared with oral drugs group (71.4 ± 16; P = 0.02). CONCLUSION: Global QOL score was high in 'difficult-to-treat' patients with INS in stable remission on oral immunosuppressive or RTX treatment.


Assuntos
Imunossupressores/uso terapêutico , Síndrome Nefrótica/psicologia , Qualidade de Vida , Adolescente , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Síndrome Nefrótica/tratamento farmacológico
12.
J Inherit Metab Dis ; 42(3): 545-552, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30671973

RESUMO

Previous studies have shown that individuals with cystinosis may exhibit difficulty with visuospatial tasks. Global and local (hierarchical) processing are specific types of visuospatial tasks mediated by the right and left parietal lobes respectively. The study objective was to determine whether individuals with cystinosis and carriers of the cystinosin gene mutation show deficits in global and/or local processing. The study included 48 children (32 controls, 16 cystinosis) and 56 adults (25 controls, 25 carriers, and 6 cystinosis). Participants were instructed to replicate 10 hierarchical stimuli to assess global-local processing. The primary outcome measure was mean global and local performance on the hierarchical stimuli task between subgroups. Error subtypes were included to further assess each image. Compared to the control subgroups, adult and child cystinosis patients as well adult carriers demonstrated significant deficits in the global processing of a hierarchical stimulus against a background of unimpaired local processing. Child cystinosis patients performed significantly more poorly than controls on all error subtypes except local shape distortion. Adult cystinosis patients and carriers made significantly more global shape distortion errors than the controls. Our study shows that the cognitive profile documented in cystinosis patients and carriers includes significant difficulties with the global processing of an image. Results of the carrier population are important since they suggest that the cognitive impairments observed in patients cannot be attributed to symptomatic manifestations of the disease. Instead, the global processing deficits observed provide insight into the potential role of the cystinosin gene mutation on neurodevelopmental differences seen in these individuals.


Assuntos
Cognição , Cistinose/psicologia , Síndrome Nefrótica/psicologia , Processamento Espacial , Adolescente , Adulto , Estudos de Casos e Controles , Criança , Cistinose/genética , Síndrome de Fanconi , Feminino , Triagem de Portadores Genéticos , Humanos , Inteligência , Masculino , Síndrome Nefrótica/genética , Testes Neuropsicológicos , Adulto Jovem
13.
J Palliat Med ; 22(4): 464-467, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-30513050

RESUMO

For most families, the preferred location of death for their child is home, yet most children still die in the hospital. Many children with life-threatening and life-limiting illness are medically dependent on technology, and palliative transport can serve as a bridge from the intensive care unit to the family's home to achieve family-centered goals of care. Palliative transport may also present an opportunity to prioritize cultural care and rituals at end of life which cannot be provided in the hospital. We describe a case series of pediatric patients from communities espousing markedly diverse cross-cultural values and limited financial resources. Specific cultural considerations at end of life for these children included optimizing the presence of the shared community or tribe, the centrality of healing rituals, and varied attitudes toward withdrawal of life-sustaining medical treatment. By addressing each of these components, we were able to coordinate palliative transport to enhance cross-cultural care and meaning at end of life for children with life-limiting illness.


Assuntos
Atitude Frente a Morte , Assistência à Saúde Culturalmente Competente/normas , Família/psicologia , Serviços de Assistência Domiciliar/normas , Pediatria/normas , Assistência Terminal/psicologia , Assistência Terminal/normas , Adulto , Amish/psicologia , Osso e Ossos/anormalidades , Encéfalo/anormalidades , Feminino , Transtornos do Crescimento/enfermagem , Transtornos do Crescimento/psicologia , Insuficiência Cardíaca/enfermagem , Insuficiência Cardíaca/psicologia , Humanos , Indígenas Norte-Americanos/psicologia , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Insuficiência de Múltiplos Órgãos/enfermagem , Insuficiência de Múltiplos Órgãos/psicologia , Síndrome Nefrótica/enfermagem , Síndrome Nefrótica/psicologia , Guias de Prática Clínica como Assunto
14.
G Ital Nefrol ; 35(5)2018 Sep.
Artigo em Italiano | MEDLINE | ID: mdl-30234240

RESUMO

The increasing technological effectiveness has undoubtedly produced an improvement in clinical parameters of dialysis patients, but this satisfactory therapeutic result did not follow an adequate improvement in mortality or in the perception of quality of life as per patients. Furthermore, dialysis treatment is often associated with "inapparent charges" that reduce the perception of well-being, independently of clinical changes. Thirty years ago, we carried out a national survey on inapparent charges, which represent frustrating aspects that negatively affect patients' perception of their quality of life. Thirty years later, it seemed important for us to repeat the survey to understand if Italian legislative remodeling have introduced changes in procedures and social aspects of dialysis, as preservation of quality of life is an important aspect of the replacement treatment.


Assuntos
Síndrome Nefrótica/terapia , Pacientes/psicologia , Diálise Renal/psicologia , Terapia por Quelação/psicologia , Testes Diagnósticos de Rotina/psicologia , Dietoterapia/psicologia , Eritropoetina/uso terapêutico , Frustração , Geografia Médica , Humanos , Itália , Síndrome Nefrótica/psicologia , Satisfação do Paciente , Transferência de Pacientes , Utilização de Procedimentos e Técnicas , Qualidade de Vida , Inquéritos e Questionários
15.
Health Qual Life Outcomes ; 15(1): 166, 2017 Aug 23.
Artigo em Inglês | MEDLINE | ID: mdl-28835233

RESUMO

BACKGROUND: Nephrotic syndrome represents a condition in pediatric nephrology typified by a relapsing and remitting course, proteinuria and the presence of edema. The PROMIS measures have previously been studied and validated in cross-sectional studies of children with nephrotic syndrome. This study was designed to longitudinally validate the PROMIS measures in pediatric nephrotic syndrome. METHODS: One hundred twenty seven children with nephrotic syndrome between the ages of 8 and 17 years participated in this prospective cohort study. Patients completed a baseline assessment while their nephrotic syndrome was active, a follow-up assessment at the time of their first complete proteinuria remission or study month 3 if no remission occurred, and a final assessment at study month 12. Participants completed six PROMIS measures (Mobility, Fatigue, Pain Interference, Depressive Symptoms, Anxiety, and Peer Relationships), the PedsQL version 4.0, and two global assessment of change items. RESULTS: Disease status was classified at each assessment: nephrotic syndrome active in 100% at baseline, 33% at month 3, and 46% at month 12. The PROMIS domains of Mobility, Fatigue, Pain Interference, Depressive Symptoms, and Anxiety each showed a significant overall improvement over time (p < 0.001). When the PROMIS measures were compared to the patients' global assessment of change, the domains of Mobility, Fatigue, Pain Interference, and Anxiety consistently changed in an expected fashion. With the exception of Pain Interference, change in PROMIS domain scores did not correlate with changes in disease activity. PROMIS domain scores were moderately correlated with analogous PedsQL domain scores. CONCLUSION: This study demonstrates that the PROMIS Mobility, Fatigue, Pain Interference, and Anxiety domains are sensitive to self-reported changes in disease and overall health status over time in children with nephrotic syndrome. The lack of significant anchoring to clinically defined nephrotic syndrome disease active and remission status may highlight an opportunity to improve the measurement of HRQOL in children with nephrotic syndrome through the development of a nephrotic syndrome disease-specific HRQOL measure.


Assuntos
Nível de Saúde , Síndrome Nefrótica/psicologia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Autorrelato/normas , Adolescente , Ansiedade/psicologia , Criança , Depressão/psicologia , Fadiga/psicologia , Feminino , Humanos , Relações Interpessoais , Masculino , Dor/psicologia , Estudos Prospectivos
16.
Saudi J Kidney Dis Transpl ; 28(3): 593-598, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28540898

RESUMO

This study was conducted to assess the quality of life (QOL) in children between 2 and 18 years of age with primary idiopathic nephrotic syndrome (NS) using Pediatric Quality of Life Inventory (PedsQL 4.0 Generic Core Scales). This cross-sectional comparative study was conducted at a tertiary care hospital in South India between December 2014 and February 2015. In this questionnaire-based study, 50 children with primary idiopathic NS and an equal number of age-matched controls with other chronic ailments were recruited. Their clinical and demographic details were recorded, and QOL was assessed using PedsQL 4.0 Generic Core Scales. The median (interquartile range) total QOL score in children with NS [65 (59-68.75)] was found to be higher compared to controls [62.19 (58.05-65.78)] (P = 0.012). Children with NS had significantly higher QOL scores in physical (P = 0.004), emotional (0.029), and social functioning (0.010) domains as compared to controls; however, the school performance was not different from controls. The QOL scores did not significantly differ between the various clinical pheno- types of NS. Demographic details such as age, gender, duration of illness, and steroid resistance did not significantly influence the total QOL scores among the nephrotic children. The present study shows that the overall QOL in children with NS was better than in children with other chronic illnesses. Further studies are needed to confirm these findings and explore the underlying cause of poor school performance.


Assuntos
Hospitais de Ensino , Síndrome Nefrótica/congênito , Qualidade de Vida , Adolescente , Fatores Etários , Estudos de Casos e Controles , Criança , Pré-Escolar , Efeitos Psicossociais da Doença , Estudos Transversais , Escolaridade , Emoções , Feminino , Nível de Saúde , Humanos , Índia , Masculino , Síndrome Nefrótica/diagnóstico , Síndrome Nefrótica/fisiopatologia , Síndrome Nefrótica/psicologia , Fatores de Risco , Comportamento Social
17.
Nephrol Dial Transplant ; 32(suppl_1): i98-i105, 2017 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-28391342

RESUMO

Background: People living with nephrotic syndrome (NS) need to develop an in-depth understanding of their condition in order to participate in treatment decisions, develop self-management skills and integrate illness into daily life. However, the learning needs of adult patients and parents of children with NS are unknown. We therefore explored patient and parent perspectives on learning needs related to NS as part of a larger study to develop a shared learning tool for NS. Methods: Qualitative data were collected using semistructured focus groups and individual interviews with adult patients (n = 22) and parents of children with NS (n = 25). Results: The complexity of NS and its treatment made decision making challenging, as patients/parents often had to assimilate information about a condition that is poorly understood. Specific informational needs related to understanding the diagnosis and treatment approaches as well as learning to manage NS were identified. Difficulty in getting accurate information often made learning challenging. The importance of learning to monitor their condition, including understanding triggers that might precipitate a relapse, was highlighted, underscoring the need for individualized approaches to ensure unique learning needs are addressed. Conclusions: Our findings reveal some of the unique concerns of people with NS given its uncertain course and the limited information available specific to NS. These results suggest the need for shared communication between the patient/parents and providers to elicit the patient's/parents' understanding of NS and to support them in meeting their unique learning needs.


Assuntos
Adaptação Psicológica , Tomada de Decisões , Síndrome Nefrótica/terapia , Pais/psicologia , Autocuidado , Adulto , Criança , Doença Crônica , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Síndrome Nefrótica/psicologia , Relações Pais-Filho , Relações Profissional-Paciente
18.
Pediatr Nephrol ; 32(1): 99-105, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-27677978

RESUMO

BACKGROUND: Relapses of nephrotic syndrome are common and are treated with a course of prednisolone (2 mg/kg/day or 60 mg/m2/day). This is associated with major adverse effects including diabetes, weight gain, hypertension and behavioural problems. This study is a retrospective review examining the success of treating relapses in steroid-sensitive nephrotic syndrome (SSNS) with low-dose prednisolone and the consequences on subsequent relapse rates. Furthermore, a follow-up study looked at the side-effect profile during treatment with high- versus low-dose prednisolone. METHODS: Between January 2012 and July 2013, all well children with SSNS presenting with a relapse were advised to start 1 mg/kg prednisolone daily for a maximum of 7 days. In July 2015, we compared the side-effect profile of prednisolone therapy using the parent proxy PedsQL questionnaire for quality of life (QoL). RESULTS: Fifty patients were included in the study, with a total of 87 relapses. Sixty-one of the 87 relapses (70 %) responded within a week. Treating relapses with a reduced dose of steroids did not adversely affect the relapse rate in the 6 months preceding and following the current relapse (1.01 vs 0.86, p = 0.3). Fifteen parents completed the PedsQL questionnaire. Comparison of scores in each category showed significantly higher values in each domain during treatment with low-dose prednisolone compared with high-dose treatment (35.6 vs 18.3, p < 0.0001; 31.1 vs 15.0, p < 0.001; 38.3 vs 20.1, p < 0.0001). CONCLUSION: A low-dose prednisolone regimen was successful in achieving remission in 70 % of relapses of children with SSNS, without adversely affecting the relapse rate. Parent-completed QoL questionnaires showed significantly higher scores on low-dose treatment, indicating better QoL.


Assuntos
Anti-Inflamatórios/uso terapêutico , Síndrome Nefrótica/tratamento farmacológico , Prednisolona/uso terapêutico , Adolescente , Anti-Inflamatórios/administração & dosagem , Anti-Inflamatórios/efeitos adversos , Criança , Pré-Escolar , Relação Dose-Resposta a Droga , Feminino , Seguimentos , Humanos , Masculino , Síndrome Nefrótica/psicologia , Pais , Prednisolona/administração & dosagem , Prednisolona/efeitos adversos , Qualidade de Vida , Recidiva , Estudos Retrospectivos , Resultado do Tratamento
19.
J Chin Med Assoc ; 78(11): 657-61, 2015 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-26281851

RESUMO

BACKGROUND: Nephrotic syndrome (NS) is a common clinical disease with four main clinical manifestations: hypoalbuminemia (<30 g/L), macro-proteinuria (>3.5 g/24 h), edema, and hyperlipidemia. There is a variety of pathological types that are associated with NS. Percutaneous renal biopsy (PRB) plays an important role in clinical practice in that it can be used to establish a histological diagnosis, to provide information for an ultimate NS diagnosis, and subsequent prognosis. Our aim was to observe the psychological status of patients with NS before and after PRB and investigate the factors affecting their psychological status. METHODS: Two hundred and thirty-five patients with NS were enrolled in the present study. We evaluated the psychological status of patients 24 hours before and 6 hours after PRB by using the Symptom Check List-90 and State-Trait Anxiety Inventory. RESULTS: We analyzed the factors affecting the psychological status of the study participants before and after this important NS procedure. Before the PRB procedure was administered, the factorial anxiety and phobic anxiety scores were higher than normal (p < 0.0.5). After PRB, only anxiety was determined to be higher than normal in the somatization score (p < 0.05). In general, there were higher scores among males rather than the female study participants (p < 0.05). Scores of all indices decreased significantly in all patients after PRB (p < 0.05). CONCLUSION: Psychological status was common in patients who underwent PRB and were affected by many factors.


Assuntos
Biópsia , Rim/patologia , Síndrome Nefrótica/psicologia , Síndrome Nefrótica/cirurgia , Ansiedade/etiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fatores Sexuais
20.
Pediatr Nephrol ; 30(9): 1467-76, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-25784017

RESUMO

BACKGROUND: The Patient Reported Outcomes Measurement Information System (PROMIS) II is a prospective study that evaluates patient reported outcomes in pediatric chronic diseases as a measure of health-related quality of life (HRQOL). We have evaluated the influence of disease duration on HRQOL and, for the first time, compared the findings of the PROMIS measures to those of the PedsQL™ 4.0 Generic Scales (PedsQL) from the PROMIS II nephrotic syndrome (NS) longitudinal cohort. METHODS: This was a prospective study in which 127 children (age range 8-17 years) with active NS from 14 centers were enrolled. Children with active NS defined as the presence of nephrotic range proteinuria (>2+ urinalysis and edema or urine protein/creatinine ratio >2 g/g) were eligible. Comparisons were made between children with prevalent (N = 67) and incident (N = 60) disease at the study enrollment visit. RESULTS: The PROMIS scores were worse in prevalent patients in the domains of peer relationship (p = 0.01) and pain interference (p < 0.01). The PedsQL showed worse scores in prevalent patients for social functioning (p < 0.01) and school functioning (p = 0.03). Multivariable analyses showed that prevalent patients had worse scores in PROMIS pain interference (p = 0.02) and PedsQL social functioning (p < 0.01). CONCLUSION: The PROMIS measures detected a significant impact of disease duration on HRQOL in children, such that peer relationships were worse and pain interfered with daily life to a greater degree among those with longer disease duration. These findings were in agreement with those for similar domains in the PedsQL legacy instrument.


Assuntos
Síndrome Nefrótica , Qualidade de Vida , Habilidades Sociais , Adolescente , Criança , Estudos de Coortes , Avaliação Educacional/estatística & dados numéricos , Feminino , Humanos , Estudos Longitudinais , Masculino , Síndrome Nefrótica/complicações , Síndrome Nefrótica/epidemiologia , Síndrome Nefrótica/psicologia , Dor/etiologia , Pediatria/métodos , Pediatria/estatística & dados numéricos , Proteinúria/etiologia , Tempo , Estados Unidos/epidemiologia
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