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Significant Burden and Psychological Distress Among Caregivers of Children With Nephrotic Syndrome: A Cross-Sectional Study.

ABSTRACT: Background:Childhood nephrotic syndrome (NS) follows a chronic course in most children. However, little is known about the psychosocial burden of NS on the caregivers despite evidence that caregiver burden or impairment in their well-being may alter the outcome of chronic childhood illnesses. Objectives:To determine the frequency and predictors of significant caregiver burden and psychological distress among caregivers of children with NS. Design:A cross-sectional study. Setting:Two pediatric nephrology clinics in Lagos, Nigeria. Patients:We included primary caregivers of children with idiopathic NS for at least 6 months. Measurements:The primary outcomes were psychological distress and significant caregiver burden among caregivers. Methods:We interviewed caregivers using the 12-item General Health Questionnaire (GHQ-12) and the 6-item Zarit Burden Interview (ZBI-6). The GHQ-12 scores ? 3 and ZBI-6 scores ? 6 indicated psychological distress and significant caregiver burden, respectively. Results:The caregivers were mostly mothers (77.9%) and married (92.4%), whereas the children (n = 172) were mainly male (65.1%). Most of the children (n = 152; 88.4%) had steroid-sensitive NS including 24 (14%) children with frequent relapses or steroid dependence and 20 (11.6%) with steroid-resistant NS. Of the 172 caregivers, 53 (30.8%) and 30 (17.4%) reported psychological distress and significant burden, respectively. Caregivers of children in relapse had adjusted an odds ratio (aOR) with 95% confidence interval (CI) of 2.45 (1.05-5.67) and 3.30 (1.22-8.92) of psychological distress and significant caregiver burden, respectively. Furthermore, caregivers of male children and those who needed help paying for health care had an aOR of 4.61 (1.34-15.68) and 3.06 (1.06-8.87) of significant caregiver burden, respectively. Limitations:The study was limited by its cross-sectional design and the use of generic rather than disease-specific instruments. Conclusion:One in every 6 caregivers of children with idiopathic NS reported significant caregiver burden, and it was associated with psychological distress. Our findings underscore the need for psychosocial support for caregivers of children with NS, especially those with identifiable vulnerability.

SUBMITTER: Esezobor CI

PROVIDER: S-EPMC6950537 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Significant Burden and Psychological Distress Among Caregivers of Children With Nephrotic Syndrome: A Cross-Sectional Study.

Esezobor Christopher I CI Solarin Adaobi U AU Olagunju Andrew T AT

Canadian journal of kidney health and disease 20200108

<h4>Background</h4>Childhood nephrotic syndrome (NS) follows a chronic course in most children. However, little is known about the psychosocial burden of NS on the caregivers despite evidence that caregiver burden or impairment in their well-being may alter the outcome of chronic childhood illnesses.<h4>Objectives</h4>To determine the frequency and predictors of significant caregiver burden and psychological distress among caregivers of children with NS.<h4>Design</h4>A cross-sectional study.<h4 ...[more]

PMID: 31949915

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Project description:BackgroundNephrotic syndrome is one of the chronic illnesses in the pediatric age group. The aim of this study was to assess the oral health of patients with steroid-sensitive idiopathic nephrotic syndrome (iNS).MethodsA case-control study was performed on iNS patients and healthy from May 2018 to April 2019. Dental caries was assessed by the World Health Organization criteria, developmental defects of enamel by the mDDE index, oral hygiene by the OHI-S and API, and gingival condition by the GI. Oral health behavior was recorded using a standardized questionnaire including tooth brushing, fluoride prevention, dietary habits and utilization of dental care. Additionally, Streptococcus mutans (SM) and Lactobacillus spp. (LB) bacteria in saliva were assessed using the CRT bacteria test. Statistical analysis comparing oral health parameters was carried by Pearson's chi-squared, Fisher's exact, Shapiro-Wilk verified by Student's t or Mann-Whitney U tests.ResultsThe study included 94 participants of both sexes at the age of 4 to 17 years (47 cases and 47 controls) who were treated in Clinic of Pediatric Nephrology or outpatients' dental clinic in Wroclaw, Poland. The iNS patients compared to the controls revealed some lower caries experience (83.0% vs 95.7%) and number of caries affected primary and/or permanent teeth (4.6 ± 3.5 vs 6.0 ± 4.1), a significantly lower number of filled primary and/or permanent teeth (1.1 ± 1.6 vs 3.5 ± 3.0, P < 0.001) and higher incidence of enamel hypoplasia (31.9% vs 4.3%, P < 0.001). The numbers of the iNS patients with high level of SM and LB were similar to the controls. The iNS patients had a higher OHI-S score (1.89 ± 1.59 vs 1.05 ± 1.02, P < 0.010) and a higher GI score (0.7 ± 1.0 vs 0.3 ± 0.6, P = 0.050). Moreover, they less frequently brushed their teeth twice a day (78.8% vs 93.6%, P = 0.026) and more frequently consumed three or more snacks daily (53.2% vs 23.4%, P = 0.002).ConclusionsThe iNS patients despite the poor oral hygiene revealed lower caries experience but smaller number of restored caries-affected teeth, more severe gingivitis and more frequently teeth affected by enamel hypoplasia.

Project description:Rationale & objectivePatients with chronic kidney disease (CKD) not receiving dialysis, including kidney transplant recipients, often experience difficulties regarding self-management. An important barrier for adherence to self-management recommendations may be the presence of psychological distress, consisting of depressive and anxiety symptoms. We investigated relationships between psychological distress and adherence to self-management recommendations.Study designCross-sectional online questionnaire data as part of the E-GOAL study.Setting & participantsPatients with CKD (estimated glomerular filtration rate, 20-89 mL/min/1.73 m2) were recruited from April 2018 to October 2020 at 4 hospitals in The Netherlands and completed online screening questionnaires.ExposuresPsychological distress, depressive symptoms, and anxiety symptoms.OutcomesDietary adherence, physical activity, medication adherence, smoking, body mass index, and a CKD self-management index (ie, the sum of 5 binary indicators of nonadherence to the recommended self-management factors).Analytical approachAdjusted multivariable regression and ordinal logistic regression analyses.ResultsIn our sample (N = 460), 27.2% of patients reported psychological distress, and 69.8% were nonadherent to 1 or more recommendations. Higher psychological distress was significantly associated with poorer dietary adherence (βadj, -0.13; 95% CI, -0.23 to -0.04), less physical activity (βadj, -0.13; 95% CI, -0.22 to -0.03), and lower medication adherence (βadj, -0.15; 95% CI, -0.24 to -0.05), but not with smoking and body mass index. Findings were similar for depressive symptoms, whereas anxiety was only associated with poorer dietary and medication adherence. Every 1-point higher psychological distress was also associated with a higher likelihood of being nonadherent to an accumulating number of different recommendations (adjusted OR, 1.04; 95% CI, 1.02-1.07).LimitationsCross-sectional design, possible residual confounding, and self-report.ConclusionsMany people with CKD experience psychological distress, of whom most have difficulties self-managing their CKD. Given the relationship between psychological distress and adherence to CKD self-management recommendations, behavioral interventions are needed to identify and treat psychological distress as a potential barrier to CKD self-management.Plain-language summaryThis online questionnaire study investigated relationships between psychological distress and self-management among 460 people with chronic kidney disease. Over a quarter of them reported mild-to-severe psychological distress. Alarmingly, 4 out of 5 patients with psychological distress were also nonadherent to 1 or more self-management recommendations, and higher levels of psychological distress were associated with poorer dietary and medication adherence and lower physical activity. Moreover, patients who suffered from moderate-to-severe distress were relatively more often nonadherent to 3 or more recommendations compared with patients with no or mild distress symptoms. So, it seems that psychological distress can be a barrier for self-management. To support patients in managing chronic kidney disease, researchers and health professionals should not overlook patients' mental health.

Project description:In Cambodia, there has been an increase in entertainment work as a result of the breakdown of the traditional brothel-based sex industry, presenting new challenges to addressing the health issues and needs of people working in the entertainment industry. This study aims to identify factors associated with psychological distress among female entertainment workers (FEWs) in Cambodia.A two-stage cluster sampling method was used to randomly select 657 FEWs from entertainment establishments in Phnom Penh and Siem Reap in April and May 2014 for interviews using a structured questionnaire. Psychological distress was measured using the General Health Questionnaire (GHQ-12), and multivariate logistic regression analysis was conducted.Almost half of FEWs (43.2 %) had a higher level of psychological distress (GHQ-12 > 3), while 19.5 % reported having suicidal thoughts, and 7.3 % reported having attempted to commit suicide in the past 3 months. Controlling for confounding factors, women with a higher level of psychological distress were significantly more likely to rate their overall health (AOR = 1.88, 95 % CI 1.20 to 2.94) and quality of life (AOR = 2.39, 95 % CI 1.47 to 3.87) as poor. They were also significantly more likely to have suicidal ideation (AOR = 2.41, 95 % CI 1.45 to 3.76), rate their HIV risk as higher than the general population (AOR = 0.48, 95 % CI 0.31 to 0.74), have been forced to drink at work (AOR = 1.77, 95 % CI 1.19 to 2.62), have had clients requesting not to use a condom (AOR = 3.48, 95 % CI 1.14 to 10.62), be not able to find condoms when they needed it (AOR = 0.64, 95 % CI 0.45 to 0.93), have had a family member who said hurtful things to them during childhood (AOR = 1.84, 95 % CI 1.24 to 2.75), and have had a parent or guardian who had been physically abused (AOR = 1.93, 95 % CI 1.34 to 2.82).FEWs in Cambodia experience high levels of psychological distress, which likely stems from both past negative experiences and current working conditions. For women that are experiencing psychological distress, intervention programs aimed at improving mental health should specifically address substance use, condom availability and negotiation skills, and suicide risk.

Project description:OBJECTIVES:The Prediciting factors for response to treatment in carpal tunnel syndrome (PALMS) study is designed to identify prognostic factors for outcome from corticosteroid injection and surgical decompression for carpal tunnel syndrome (CTS) and predictors of cost over 2 years. The aim of this paper is to explore the cross-sectional association of baseline patient-reported and clinical severity with anxiety, depression, health-related quality of life and costs of CTS in patients referred to secondary care. METHODS:Prospective, multicentre cohort study initiated in 2013. We collected baseline data on patient-reported symptom severity (CTS-6), psychological status (Hospital Anxiety and Depression Scale), hand function (Michigan Hand Questionnaire) comorbidities, EQ-5D-3L (3-level version of EuroQol-5 dimension) and sociodemographic variables. Nerve conduction tests classified patients into five severity grades (mild to very severe). Data were analysed using a general linear model. RESULTS:753 patients with CTS provided complete baseline data. Multivariable linear regression adjusting for age, sex, ethnicity, duration of CTS, smoking status, alcohol consumption, employment status, body mass index and comorbidities showed a highly statistically significant relationship between CTS-6 and anxiety, depression and the EQ-5D (p<0.0001 in each case). Likewise, a significant relationship was observed between electrodiagnostic severity and anxiety (p=0.027) but not with depression (p=0.986) or the EQ-5D (p=0.257). National Health Service (NHS) and societal costs in the 3 months prior to enrolment were significantly associated with self-reported severity (p<0.0001) but not with electrodiagnostic severity. CONCLUSIONS:Patient-reported symptom severity in CTS is significantly and positively associated with anxiety, depression, health-related quality of life, and NHS and societal costs even when adjusting for age, gender, body mass index, comorbidities, smoking, drinking and occupational status. In contrast, there is little or no evidence of any relationship with objectively derived CTS severity. Future research is needed to understand the impact of approaches and treatments that address psychosocial stressors as well as biomedical factors on relief of symptoms from carpal tunnel syndrome.

Project description:BackgroundCongenital nephrotic syndrome (CNS) and infantile nephrotic syndrome (INS) cause substantial morbidity and mortality. In Japan, there is a lack of knowledge regarding the characteristics of CNS and INS. This study aimed to clarify the characteristics of CNS and INS in Japan.MethodsThis cross-sectional nationwide survey obtained data from 44 institutions in Japan managing 92 patients with CNS or INS, by means of two survey questionnaires sent by postal mail. Patients aged < 16 years by 1 April 2015, with a diagnosis of CNS or INS, were included in this study. The primary outcome was end-stage kidney disease.ResultsA total of 83 patients with CNS or INS were analyzed. The most frequent disease type was non-Finnish (60.2%); 33 patients (39.8%) had Finnish type. Among those with non-Finnish-type disease, 26 had no syndrome and 24 had a syndrome, of which the most frequent was Denys-Drash syndrome (70.8%). Patients with non-Finnish-type disease with syndrome showed the earliest progression to end-stage kidney disease compared with the other two groups, whereas patients with non-Finnish-type disease without syndrome progressed more slowly compared with the other two groups. In the Finnish-type group, the disease was diagnosed the earliest; a large placenta was reported more frequently; genetic testing was more frequently performed (93.8%); mental retardation was the most frequent extra-renal symptom (21.2%); and thrombosis and infection were more frequent compared with the other groups. Patients with non-Finnish-type disease with syndrome had a higher frequency of positive extra-renal symptoms (79.2%), the most common being urogenital symptoms (54.2%). Treatment with steroids and immunosuppressants was more frequent among patients with non-Finnish-type disease without syndrome. Two patients with non-Finnish-type disease without syndrome achieved complete remission. In all groups, unilateral nephrectomy was performed more often than bilateral nephrectomy and peritoneal dialysis was the most common renal replacement therapy.ConclusionsThe present epidemiological survey sheds light on the characteristics of children with CNS and INS in Japan. A high proportion of patients underwent genetic examination, and patient management was in accord with current treatment recommendations and practices.Trial registrationNot applicable.

Dataset Information

Significant Burden and Psychological Distress Among Caregivers of Children With Nephrotic Syndrome: A Cross-Sectional Study.

Publications

Significant Burden and Psychological Distress Among Caregivers of Children With Nephrotic Syndrome: A Cross-Sectional Study.

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