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1.
J Child Health Care ; : 13674935241238485, 2024 Mar 29.
Artigo em Inglês | MEDLINE | ID: mdl-38551845

RESUMO

Parents of a child with a chronic illness can experience greater distress than the average population, yet little is understood about differences between illness groups. This cross-sectional survey study aimed to compare parents' psychological distress and perceived wellbeing across five chronic illnesses. Parents from one Australian pediatric hospital completed the Kessler Psychological Distress Scale and seven purpose-designed items about their wellbeing. Data from 106 parents (cancer = 48, cystic fibrosis [CF] = 27, kidney disease = 12, gastrointestinal condition/disorder = 9, developmental and epileptic encephalopathy [DEE] = 10) was analysed using bivariate Pearson's Correlation and linear mixed-effects models. Parents' distress scores differed between groups (F(4,80) = 2.50, p = .049), with the DEE group reporting higher distress than the CF group (mean difference = 6.76, 95% CI [0.11, 13.42]). Distress scores were moderately correlated to parents' perceptions of their child's health and their own wellbeing. Parents' self-reported coping with their child's condition/treatments differed (F(4,81) = 3.24, p = .016), with the DEE group rating their coping as poorer than the CF group (mean difference = -25.32, 95% CI [-46.52, 4.11]). Across all groups, parents reported unmet needs, particularly for psychosocial support and practical/financial assistance. Support interventions may be most effective if tailored to the child's illness, with greater support potentially needed for parents who have a child with DEE and/or severe comorbidities.

2.
Pediatr Nephrol ; 39(5): 1577-1585, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38082092

RESUMO

BACKGROUND: Disturbances of sleep are prevalent among children with chronic kidney disease. However, the aetiology of sleep disorders in children particularly after kidney transplantation is not clear. We sought to ascertain the prevalence and type of sleep disturbances in paediatric kidney transplant recipients and to identify predictors of sleep disturbances in this population. METHODS: Caregivers of kidney transplant recipients completed online questionnaires about their child's sleep. The questionnaires utilised were the Sleep Disturbance Scale for Children (SDSC), the Epworth Sleepiness Scale for Children and Adolescents (ESS-CHAD), questions about sleep hygiene, and questions about restless leg syndrome. Demographic and clinical details were collected from medical records. RESULTS: Thirty-five children were included in the study, with a median (IQR) age of 14.1 years (9.5-16.1) and median years (IQR) since transplant of 3.7 (0.7-8.7) years, and 72.0% were identified to have at least one category of sleep disturbance according to scores on the SDSC. The most common sleep disturbances reported were disorders of initiating and maintaining sleep (DIMS) (40.0%) and disorders of excessive somnolence (DOES) (31.4%). Statistically significant predictors of sleep disturbances include low estimated glomerular filtration rate and increased age. Among children who screened positive for DIMS and DOES, the majority indicated use of electronic devices in 1 h before bed. CONCLUSIONS: A high prevalence of sleep disturbances has been identified in children after kidney transplants, and some risk factors may be modifiable. Further studies are required to understand whether there are other readily modifiable predictors of sleep disturbances.


Assuntos
Transplante de Rim , Insuficiência Renal Crônica , Transtornos do Sono-Vigília , Humanos , Criança , Adolescente , Transplante de Rim/efeitos adversos , Transtornos do Sono-Vigília/epidemiologia , Transtornos do Sono-Vigília/etiologia , Inquéritos e Questionários , Insuficiência Renal Crônica/etiologia , Insuficiência Renal Crônica/complicações , Sono
3.
J Ren Nutr ; 2023 Dec 19.
Artigo em Inglês | MEDLINE | ID: mdl-38128854

RESUMO

OBJECTIVE: Children with chronic kidney disease (CKD) experience many obstacles to achieving optimal dietary intake. Dietary intake patterns remain unexplored or poorly described. This study compares nutritional intake and diet quality of Australian children with CKD to controls. METHODS: A food frequency questionnaire captured intake data and was compared to controls. Nutritional intake was determined using individualized nutrient reference values, and diet quality described using the Australian Guide to Healthy Eating and the Australian Child and Adolescent Recommended Food Score. RESULTS: Children with CKD (n = 36) and controls (n = 82) were studied. Children with CKD had lower weight and height z scores, but higher body mass index (P < .0001 for all parameters). Children with CKD had adequate energy intake, and excessive protein and sodium intake (336% and 569%). They were significantly less likely to meet requirements for vitamin A (P < .001), thiamine (P = .006), folate (P = .01), vitamin C (P = .008), calcium (P < .0001), iron (P = .01), magnesium (P = .0009), and potassium (P = .002). No child met recommended vegetable intake; however, less than half of children with CKD met fruit (44%), grains (31%), and dairy serves (31%). They were also less likely to meet recommended fruit and dairy serves (P = .04 and P = .01, respectively). Non-core foods provided 36% of energy, and although comparable to controls, was contributed more by takeaway foods (P = .01). CONCLUSION: Children with CKD have reduced nutritional intake of key nutrients and consume more takeaways than controls. Attention to increasing core foods, limiting sodium intake, and managing restrictions while promoting nutrient density appears necessary.

4.
PLoS One ; 18(11): e0293761, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37917631

RESUMO

INTRODUCTION: One in every two cases of caries in deciduous teeth occurs in low- and middle-income countries (LMICs). The aim of the World Health Organisation's (WHO) Healthy Schools Program is to improve the oral health of children. This study explored perceptions of implementation of the Ugandan oral health schools' program in Gulu district, northern Uganda. METHODS: Semi-structured interviews were conducted with a purposive sample of 19 participants including health and education officials, community leaders, policy makers, teachers, and parents. All interviews were transcribed verbatim and analysed thematically. RESULTS: Our study identified three themes: (1) components of oral health promotion, (2) implementation challenges of oral health promotion, and (3) development of an oral health policy. The components of oral health promotion in schools included engagement of health workers, the community, companies, skills-based education, and oral health services. Participants were concerned about insufficient funding, unsatisfactory skills-based education, and inadequate dental screening. Participants reported that there was an urgent need to develop oral health policy to guide implementation of the program at scale. CONCLUSIONS: Schools provided oral health promotion that aligned with existing features of the WHO's health-promoting school framework. Implementation of this strategy could be enhanced with increased resources, adequate oral health education, and explicit development of oral health policy.


Assuntos
Promoção da Saúde , Saúde Bucal , Criança , Humanos , Uganda , Instituições Acadêmicas , Pais , Pessoal Administrativo
5.
Pediatr Nephrol ; 38(5): 1577-1590, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36264432

RESUMO

BACKGROUND: Children with chronic kidney disease (CKD) require multidisciplinary care to meet their complex healthcare needs. Patient navigators are trained non-medical personnel who assist patients and caregivers to overcome barriers to accessing health services through care coordination. This trial aims to determine the effectiveness of a patient navigator program in children with CKD. METHODS: The NAVKIDS2 trial is a multi-center, waitlisted, randomized controlled trial of patient navigators in children with CKD conducted at five sites across Australia. Children (0-16 years) with CKD from low socioeconomic status rural or remote areas were randomized to an intervention group or a waitlisted control group (to receive intervention after 6 months). The study primary and secondary endpoints include the self-rated health (SRH) (primary), and utility-based quality of life, progression of kidney dysfunction of the child, SRH, and satisfaction with healthcare of the caregiver at 6 months post-randomization. RESULTS: The trial completed recruitment in October 2021 with expected completion of follow-up by October 2022. There were 162 patients enrolled with 80 and 82 patients randomized to the immediate intervention and waitlisted groups, respectively. Fifty-eight (36%) participants were from regional/remote areas, with a median (IQR) age of 9.5 (5.0, 13.0) years, 46% were of European Australian ethnicity, and 65% were male. A total of 109 children (67%) had CKD stages 1-5, 42 (26%) were transplant recipients, and 11 (7%) were receiving dialysis. CONCLUSION: The NAVKIDS2 trial is designed to evaluate the effectiveness of patient navigation in children with CKD from families experiencing socioeconomic disadvantage. A higher resolution version of the Graphical abstract is available as Supplementary information.


Assuntos
Navegação de Pacientes , Insuficiência Renal Crônica , Humanos , Masculino , Criança , Feminino , Qualidade de Vida , Diálise Renal , Austrália , Insuficiência Renal Crônica/terapia
6.
PLoS One ; 17(9): e0273622, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36048846

RESUMO

OBJECTIVE: For over two years, the global COVID-19 pandemic has forced major transformations on health, social, and educational systems, with concomitant impacts on mental health. This study aimed to understand the unique and additional challenges faced by children with chronic illness and their families during the COVID-19 era. METHOD: Parents of children receiving treatment for a chronic illness within the neurology, cancer, renal and respiratory clinics of Sydney Children's Hospital were invited to participate. We used qualitative methodology, including a semi-structured interview guide, verbatim transcription, and thematic analysis supported by QSR NVivo. RESULTS: Thirteen parents of children receiving tertiary-level care, for nine chronic illnesses, participated. Parents reported intense fears relating to their ill child's additional vulnerabilities, which included their risk of developing severe COVID-19 disease and the potential impact of COVID-19-related disruptions to accessing clinical care, medications, allied health support and daily care protocols should their parent contract COVID-19. Parents perceived telehealth as a highly convenient and preferred method for ongoing management of less complex healthcare needs. Parents reported that the accrual of additional stressors and responsibilities during the pandemic, experienced in combination with restricted social interaction and reduced access to usual support networks was detrimental to their own mental health. Hospital-based visitation restrictions reduced emotional support, coping, and resilience for both parents and children and in some cases led to marital discord, sibling distress, and financial loss. Supportive factors included increased time spent together at home during the pandemic and improved hygiene practices at school, which dramatically reduced the incidence of non-COVID-19-related communicable illnesses in chronically ill children. DISCUSSION: For families caring for a chronically ill child, COVID-19 made a difficult situation harder. The pandemic has highlighted the need for targeted psychosocial intervention for vulnerable families, to mitigate current mental health burden and prevent chronic psychological distress.


Assuntos
COVID-19 , Adaptação Psicológica , COVID-19/epidemiologia , Criança , Doença Crônica , Humanos , Pandemias , Pais/psicologia
7.
Trials ; 23(1): 824, 2022 Sep 30.
Artigo em Inglês | MEDLINE | ID: mdl-36175942

RESUMO

BACKGROUND: This update summarises key changes made to the protocol since the publication of the original protocol for the NAVKIDS2 trial of patient navigators for children with chronic kidney disease (CKD) experiencing social disadvantage and provides the statistical analysis plan (SAP) which has not previously been published. METHODS/DESIGN: The original protocol was published in BMC Nephrology ( https://doi.org/10.1186/s12882-019-1325-y ) prior to the commencement of trial recruitment. During the course of the trial, some key methodological changes needed to be made including changes to eligibility criteria (addition of patients with CKD stages 1-2, broadening of financial status eligibility criterion, addition of patients living in rural/remote areas, modification of age eligibility to 0-16 years, addition of limits related to the language spoken by family, guidance regarding families with multiple eligible children), changes to sites, reduction of sample size, addition of virtual options for consent and study procedures in response to the COVID-19 pandemic, removal of staggered recruitment across sites, addition of outcomes, and changes to the timing and number of assessments. This update summarises the changes made and their rationale and provides the detailed plan for statistical analysis of the trial. These changes have been finalised prior to the completion of study follow-up and the commencement of data analysis. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12618001152213 . Prospectively registered on 12 July 2018.


Assuntos
COVID-19 , Navegação de Pacientes , Insuficiência Renal Crônica , Austrália , Criança , Humanos , Estudos Multicêntricos como Assunto , Pandemias , Ensaios Clínicos Controlados Aleatórios como Assunto , Insuficiência Renal Crônica/diagnóstico , Insuficiência Renal Crônica/terapia , SARS-CoV-2 , Resultado do Tratamento
8.
BMC Oral Health ; 22(1): 211, 2022 05 28.
Artigo em Inglês | MEDLINE | ID: mdl-35643454

RESUMO

BACKGROUND: Dental caries remains the most prevalent non-communicable disease globally affecting 60-90% of children. The World Health Organisation's (WHO) health-promoting school program offers a framework for dental intervention in low- and middle-income countries (LMICs). This study explored teacher contributions to children's oral health in relation to the WHO health-promoting school framework in rural Uganda. METHODS: Semi structured interviews were conducted with a purposive sample of 18 teachers. All interviews were transcribed verbatim and analysed thematically. RESULTS: Many teachers reported preparing children to practise proper oral hygiene care through skills training and demonstrations around proper teeth brushing. Teachers' roles included raising health awareness by providing information on oral health topics using different educational methods. Many teachers mentioned performing oral health examinations on children at the school, first aid, referral for dental treatments and engaging parents, students and health workers in oral health promotion. CONCLUSIONS: Teachers play an essential role in oral health promotion in countries like Uganda. Teachers are implementing key principles of the WHO's health-promoting school framework on the ground and need to be considered as a key public health resource. If improvements in oral health are to be attained in Sub-Saharan Africa and other LMICs, government interventions need to harness teachers' contributions in delivering oral health promotion.


Assuntos
Cárie Dentária , Saúde Bucal , Criança , Cárie Dentária/prevenção & controle , Promoção da Saúde , Humanos , Instituições Acadêmicas , Uganda
9.
BMC Oral Health ; 22(1): 264, 2022 06 29.
Artigo em Inglês | MEDLINE | ID: mdl-35768801

RESUMO

BACKGROUND: Risk factors for oral disease can potentially be ameliorated by school-based interventions. This review evaluates the effectiveness of primary school-based interventions in improving oral health among children in low-and middle-income countries (LMICs). METHODS: Our systematic review was conducted in accordance with the Joanna Briggs Institute methodology for systematic reviews of effectiveness. Medline, Embase, Global Health, CINAHL, Emcare, Scopus, Web of Science, WHO website, Google Advanced and Google Scholar were searched for experimental and observational studies published between 1995 and 2021 in English. Quality assessment and data extraction of the articles were performed by two independent reviewers. The primary outcome was decayed, missing, and filled teeth/surfaces [dmft(s)/DMFT(S)] scores. Seven meta-analyses were conducted. RESULTS: The search yielded 1178 publications and after removing duplicates, 753 remained. A further 648 publications were excluded after screening titles and abstracts. 105 publications were reviewed in full and 34 were included. Narrative synthesis showed school-based interventions had a positive effect on oral health outcomes. Meta-analysis showed a significant positive effect on dental caries measured by DMFT scores (standardised mean difference (SMD) = - 0.33; 95% CI - 0.56 to - 0.10; P = 0.005), net increment in DMFS scores (SMD = - 1.09; 95% CI - 1.91 to - 0.27; P = 0.009), dmft and DMFT/S score > 1 (Risk Ratio = 0.70; 95% CI 0.53 to 0.94; P = 0.02) and plaque scores (SMD = - 0.32; 95% CI - 0.46 to - 0.18; P < 0.00001). Non-significant positive effect was observed for dental caries measured by net increment in DMFT scores (SMD = - 0.34; 95% CI - 0.69 to 0.02; P = 0.06) and DMFS scores (SMD = - 0.26; 95% CI - 0.70 to 0.18; P = 0.24), and gingival health (SMD = 0.12; 95% CI - 0.32 to 0.55; P = 0.60). Certainty of evidence was assessed as very low for all oral health outcomes. CONCLUSION: School-based interventions can be effective in reducing the burden of oral disease among primary school children in LMICs, with skills-based education, teacher training, provision of access to oral health services and parental engagement emerging as particularly promising. Further research is required to provide evidence of effectiveness of primary school-based interventions to improve oral health. Systematic review registration The title of this review was registered with PROSPERO (registration number: CRD42020202599).


Assuntos
Cárie Dentária , Saúde Bucal , Criança , Cárie Dentária/prevenção & controle , Países em Desenvolvimento , Humanos , Pobreza , Instituições Acadêmicas
10.
J Pediatr Genet ; 11(2): 117-125, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35769952

RESUMO

Genomics is rapidly being integrated into the routine care of children and families living with renal disease, principally as a diagnostic tool but also to direct therapy, identify at-risk relatives, and facilitate family planning. However, despite significant progress in understanding the genetic heterogeneity of inherited renal disease, the impact of genetic testing on parents and families of affected children is not well understood. This study aimed to investigate the experiences of families undergoing genetic testing, the psychosocial impact of receiving a genetic test result, and parent information and support needs. In-depth semistructured interviews were conducted with 26 parents of pediatric patients (<18 years of age) who had undergone genomic investigation for a suspected genetic renal disease at two tertiary pediatric nephrology services. Interviews were transcribed verbatim, coded, using NVivo software, and thematic analysis was undertaken. Key themes included emotional adjustment to a genetic diagnosis, the importance of parent-provider relationships, empowerment through social connection, and the value of family-centered care. Results highlighted the wide-ranging psychosocial impact of genetic testing on parents, as well as the importance of patient-support networks in enabling parents/families to cope and adapt. Targeted approaches to enhance communication of genetic information and the development of tailored resources to address parents' genetics and health service needs may lead to more satisfactory experiences of genetic testing.

11.
Nephrology (Carlton) ; 26(9): 715-724, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-33934448

RESUMO

AIM: Cardiovascular death is a leading cause of mortality in paediatric end-stage kidney disease (ESKD). There is however little known about the clinically relevant vascular disease in this population. We aimed to describe the incidence of new onset vascular disease and vascular death in Australian children receiving renal replacement therapy (RRT). We also aimed to identify demographic or childhood risk factors for these endpoints, and whether vascular disease predicts mortality. METHODS: Data on Australian patients who commenced RRT at <18 years of age from 1991 to 2017 were extracted from the Australian and New Zealand Dialysis and Transplant Registry (ANZDATA). Multivariable competing risks regression was used to identify factors associated with vascular events. RESULTS: A cohort of 1268 patients were followed up for a median of 10.31 years. Vascular disease was reported in 5.4%, and vascular death in 4.1%. The cumulative incidence of any vascular event, that is, disease or death, at 10 and 20 years was 5.5% and 12.8%, respectively. Childhood vascular events were associated with non-Caucasian, non-Indigenous ethnicity, and for the 804 patients followed up after 18 years of age, vascular events were associated with lack of childhood transplantation, longer childhood dialysis duration and Indigenous ethnicity. Vascular disease was only reported for 25.49% of patients who had a vascular death, and although a significant risk factor for mortality, it had limited ability to predict mortality. CONCLUSION: Cumulative incidence of vascular events is significant after commencing RRT during childhood and is associated with ethnicity, longer childhood dialysis duration and lack of childhood transplantation.


Assuntos
Doenças Cardiovasculares/epidemiologia , Falência Renal Crônica/complicações , Falência Renal Crônica/terapia , Adolescente , Fatores Etários , Austrália , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Humanos , Incidência , Falência Renal Crônica/mortalidade , Masculino , Havaiano Nativo ou Outro Ilhéu do Pacífico/estatística & dados numéricos , Nova Zelândia , Sistema de Registros , Taxa de Sobrevida , Transição para Assistência do Adulto , População Branca/estatística & dados numéricos
12.
Pediatr Nephrol ; 36(7): 1795-1802, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33484340

RESUMO

BACKGROUND: This study aimed to determine the prevalence of ANCA positivity in children managed with levamisole as a steroid-sparing agent for nephrotic syndrome (NS). METHODS: Medical records of children with steroid-sensitive NS managed with levamisole therapy at Sydney Children's Hospital between 1/1/2000 and 31/12/2018 were retrospectively reviewed. Main outcome measure was side effects of levamisole therapy including ANCA positivity. RESULTS: Seventy-one children, median age 3 years and 1 month (IQR 29-68 months) at first presentation, were subsequently managed with levamisole. 60.6% were male and 65% Caucasian. 47.9% had frequently relapsing (FR)NS and 52.1% steroid-dependent (SD)NS. Overall, there was a median reduction in relapses from 3 (IQR 1-5) to 0.4 relapses (IQR 0-1) per year after levamisole was commenced. Levamisole was successful in preventing relapse in 19 (29%) patients and was used for median 24 (22 to 25) months. Levamisole was discontinued due to relapse in 25 patients (38%) after median 12 (5-28) months. Side effects occurred in 28 patients (42.4%); the most common side effect was ANCA positivity in 12 patients. In eleven of these patients, levamisole was discontinued; in one patient, low-level titres were documented and spontaneously resolved without cessation of levamisole. Two patients developed ANCA-associated vasculitis. CONCLUSION: ANCA positivity is a common side effect of levamisole and was seen in 18.2% of our patients. Monitoring is required to determine side effects including ANCA positivity and treatment modified accordingly.


Assuntos
Levamisol , Síndrome Nefrótica , Anticorpos Anticitoplasma de Neutrófilos , Criança , Pré-Escolar , Humanos , Levamisol/efeitos adversos , Masculino , Síndrome Nefrótica/tratamento farmacológico , Recidiva , Estudos Retrospectivos , Esteroides
13.
Acta Paediatr ; 110(3): 1025-1031, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-32744791

RESUMO

AIM: To investigate and describe factors contributing to the impact of caring for a child with posterior urethral valves and to determine the extent to which families view their care as family-centred, and whether this can affect the impact of care. METHODS: A cross-sectional, survey-based study involving primary caregivers of children with posterior urethral valves. Caregivers completed the Impact on Family Scale (IOFS) and the Measure of Processes of Care (MPOC). Regression analyses were used to assess the relationship between child-related variables, demographic variables, MPOC and IOFS scores. RESULTS: Thirty-one primary caregivers completed both questionnaires. Caregivers of children with moderate/severe chronic kidney disease (CKD) scored higher on the IOFS compared to those caring for children with mild CKD. Caregivers rated care received highly but reported lower scores in subscales related to information provision. Receiving less respectful and supportive care was significantly associated with lower IOFS scores. CONCLUSION: The impact of caring for a child with posterior urethral valves is variable and is strongly determined by the severity of the associated CKD. Further research is required to show whether improving family centredness of care can reduce the impact of caring for children with posterior urethral valves.


Assuntos
Serviços de Saúde da Criança , Cuidadores , Criança , Estudos Transversais , Humanos , Relações Profissional-Família , Inquéritos e Questionários
14.
Pediatr Res ; 89(6): 1447-1451, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-32516799

RESUMO

BACKGROUND: Literature regarding congenital subependymal giant cell astrocytomas (SEGA) is limited, and suggests they are at risk of rapid growth and complications. We sought to characterise the growth patterns of congenital SEGA. The second part of the study was an exploratory analysis of congenital SEGA as a possible biomarker for poor neurological outcome. METHODS: This single-centre case series describes ten patients with TSC who had SEGA diagnosed before 12 months. SEGA diameter and volumetric growth were analysed using serial MRIs. Neurological outcomes were compared to a genotype-matched group. RESULTS: All children with congenital SEGA had a TSC2 mutation. Patients were followed for 1-8.7 years, during which median SEGA growth rate was 1.1 mm/yr in diameter or 150 mm3/yr volumetrically. SEGA with volume > 500 mm3 had a significantly higher growth rate compared with smaller SEGA (462 mm3/yr vs. 42 mm3/yr, p = 0.0095). Children with congenital SEGA had a high prevalence of severe epilepsy, developmental disability and autism spectrum disorder. CONCLUSION: Congenital SEGA can follow a relatively benign course with a lower growth rate compared with published literature. Frequent neuroimaging surveillance is recommended for congenital SEGA with volumes exceeding 500 mm3. IMPACT: Congenital SEGA occur in 9.2% of paediatric patients with tuberous sclerosis complex. There are few published cases of congenital SEGA to date. This case series of ten patients adds our experience seen in a tertiary referral hospital over 10 years. Congenital SEGA can follow a relatively benign course with a lower growth rate compared with published literature. Congenital SEGA with volume exceeding 500 mm3 had a significantly higher growth rate compared with smaller SEGA and should have more frequent neuroimaging surveillance.


Assuntos
Astrocitoma/diagnóstico , Esclerose Tuberosa/diagnóstico , Astrocitoma/complicações , Astrocitoma/patologia , Criança , Feminino , Humanos , Lactente , Masculino , Resultado do Tratamento , Esclerose Tuberosa/complicações , Esclerose Tuberosa/patologia
15.
Pediatr Nephrol ; 36(6): 1427-1438, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33006051

RESUMO

Tuberous sclerosis complex (TSC) is a multisystem hereditary disorder characterized by the growth of benign tumors (hamartomas) in multiple organs, including the kidneys. Renal angiomyolipomas (AML) are a major diagnostic feature of TSC and are present in the majority of patients by adulthood. However, AML are usually asymptomatic during childhood when neurological and developmental manifestations are the main source of morbidity. Kidney manifestations of TSC have historically been the main cause of morbidity and mortality of adults with TSC. The recognition that the complications of TSC are caused by dysregulation of the mammalian target of rapamycin (mTOR) pathway has led to an enormous progress in the management of patients with TSC in the last two decades, the establishment of diagnostic guidelines, and trials which have shown the therapeutic benefit of mTOR inhibitors. Kidney surveillance of children with TSC now provides the opportunity for timely interventions to reduce the impact of TSC in adulthood. In this review, we discuss the current management of kidney tumors associated with TSC, including the diagnosis, surveillance, and treatment options for these lesions. We also present outcome data from international registries demonstrating the effectiveness of the current management strategies. With clear management guidelines and efficient treatment of kidney tumors, we envisage that the long-term outcomes of patients with TSC will further improve in the future.


Assuntos
Angiomiolipoma , Neoplasias Renais , Esclerose Tuberosa , Angiomiolipoma/diagnóstico , Angiomiolipoma/etiologia , Angiomiolipoma/terapia , Criança , Humanos , Neoplasias Renais/diagnóstico , Neoplasias Renais/epidemiologia , Neoplasias Renais/etiologia , Inibidores de MTOR , Esclerose Tuberosa/complicações , Esclerose Tuberosa/diagnóstico , Esclerose Tuberosa/epidemiologia
16.
Arch Dis Child ; 105(12): 1215-1219, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32404442

RESUMO

OBJECTIVE: The objective of this study was to describe the incidence of acute kidney injury (AKI) in children receiving intravenous acyclovir and determine risk factors that may be associated with it. DESIGN: This was a retrospective cohort study, conducted by chart review. SETTING: The study was conducted across two paediatric hospitals. PATIENTS: All inpatients that received intravenous acyclovir in records from January 2015 to December 2015 were reviewed. Only patients with creatinine measurements taken before and after starting acyclovir were included in the study. MAIN OUTCOME MEASURES: The main outcome measure was the development of AKI following intravenous acyclovir administration, with AKI defined according to change in serum creatinine. RESULTS: 150 patients were included in the analysis. Patients' ages ranged from 2 days to 18.6 years. 27 children (18%) developed at least stage 1 AKI. Children receiving cancer treatment developed AKI more frequently than children with other diagnoses; 29.3% vs 10.9% (OR 3.4, 95% CI 1.5 to 8.2, p=0.008). The baseline estimated glomerular filtration rate (eGFR) was higher in those children who developed AKI. 34% of children had an eGFR >120 mL/min/1.73 m2 prior to acyclovir use. 31% of these children developed AKI compared with only 11% of those with a normal baseline eGFR (OR 3.6, 95 CI 1.3 to 10.1, p=0.02). Baseline eGFR was a significant predictor of AKI in a multivariable analysis that included cumulative dose and treatment duration (OR 1.02, p=0.013). CONCLUSION: AKI following intravenous acyclovir exposure is common in children. This study raises the possibility that glomerular hyperfiltration is a previously unrecognised risk factor for acyclovir-induced AKI.


Assuntos
Injúria Renal Aguda/induzido quimicamente , Aciclovir/efeitos adversos , Antivirais/efeitos adversos , Taxa de Filtração Glomerular , Neoplasias/terapia , Injúria Renal Aguda/fisiopatologia , Aciclovir/administração & dosagem , Administração Intravenosa , Adolescente , Antivirais/administração & dosagem , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Estudos Retrospectivos , Fatores de Risco
18.
Pediatr Nephrol ; 35(9): 1563-1573, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-31418063

RESUMO

The global spread of multidrug-resistant organisms has led to an increase in urinary tract infections (UTIs) in children that are difficult to treat. This review explores the current literature regarding multidrug-resistant UTIs in childhood and proposes an approach to management. Multidrug-resistant organisms include a wide range of potential urinary tract pathogens and, while most literature on drug resistance in UTIs during childhood has focused on extended-spectrum beta-lactamase producing organisms, in this review, we have included a discussion of multidrug resistance including and beyond beta-lactamase production. We provide definitions for multidrug-resistant organisms in line with current consensus guidelines and summarise clinically relevant mechanisms of resistance. Additionally, in this review, we outline the global epidemiology of multidrug-resistant UTIs in children, summarising published prevalence rates, which range from 5 to 90% in different settings. Finally, we also critically review the evidence on risk factors for colonisation and infection of the urinary tract with multidrug-resistant organisms, including prior antibiotic use, hospitalisation and underlying urological malformations. We also highlight multidrug-resistant UTI occurring in children without any identifiable risk factors, reflecting an increasing prevalence of colonisation with these organisms in the general community. Taken as a whole, this emphasises a need for careful and evidence-based use of antibiotics when treating UTIs in children and, to aide clinicians, we have outlined here potential management strategies for when infection with a multidrug-resistant organism is suspected or confirmed.


Assuntos
Farmacorresistência Bacteriana Múltipla/efeitos dos fármacos , Infecções Urinárias/microbiologia , Adolescente , Antibacterianos/administração & dosagem , Antibacterianos/efeitos adversos , Gestão de Antimicrobianos , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Fatores de Risco , Infecções Urinárias/tratamento farmacológico , Infecções Urinárias/epidemiologia
19.
Sch Psychol ; 34(6): 627-636, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31697148

RESUMO

Students with chronic illness generally have higher school needs than their healthy peers. The research to date examining school support for these needs has been limited to qualitative methods. We collected quantitative data to compare the school needs and supports received by 192 students with chronic illness and 208 students without chronic illness using parent-completed surveys. We assessed school experiences and receipt of school support across academic, social-emotional, and medical domains and school attendance. We analyzed the data using logistic regression. Students with chronic illness were 3.8 times more likely to have repeated a grade, 3.6 times more likely to have parent-reported academic challenges, and 4.9 times more likely to have recent illness-related school absenteeism than healthy students. Parents of students with chronic illness were 2.2 times more likely to report their child to have moderate-high emotional distress, and 4.6 times more likely to report that their child had low social confidence compared with parents of healthy students. Students with chronic illness did not receive more school-based tutoring, home-based tutoring, or support from a teacher's aide or school psychologist than healthy students. Students with chronic illness receive insufficient support to address their academic and social-emotional needs or high rates of school absenteeism. Evidence-based educational services must be developed and delivered to meet the needs of students with chronic illness at school and while recovering at home. (PsycINFO Database Record (c) 2019 APA, all rights reserved).


Assuntos
Sucesso Acadêmico , Desenvolvimento Infantil , Doença Crônica , Instituições Acadêmicas , Estudantes , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Masculino , Instituições Acadêmicas/estatística & dados numéricos , Estudantes/estatística & dados numéricos , Adulto Jovem
20.
Sch Psychol ; 34(6): 677-686, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31697153

RESUMO

Students with chronic illness may disengage from school, adversely affecting their school outcomes. Positive education targets students' social-emotional well-being (school well-being), which can increase engagement with school. We compared the relationship among positive educational practices, school well-being, and engagement with school as reported by parents of students with and without chronic illness. We used a convergent mixed-methods cross-sectional design. We collected data from 215 parents of school-age children with chronic illness and 212 parents of children without chronic illness. Data assessed positive educational practices, school well-being, and engagement with school, which we analyzed using regression and structural equation models. Forty-nine parents of students with chronic illness completed a telephone interview about their child's school experiences, which we analyzed using content analysis. School well-being was significantly lower among students with chronic illness, compared with students without chronic illness (p = .05). Higher student well-being (p ≤ .001) and higher levels of positive educational practices (p = .002) were associated with higher engagement with school. School well-being mediated the relationship between positive educational practices and engagement with school for students with chronic illness but not students without chronic illness. Parents of children with chronic illness described how positive educational practices and their child's school well-being promoted their child's engagement with school. Parents also reported the negative consequences of low school well-being. Positive educational practices alone may not be sufficient to increase engagement with school in students with low school well-being. Combined preventative and early intervention psychosocial support may best promote engagement with school in students with chronic illness. (PsycINFO Database Record (c) 2019 APA, all rights reserved).


Assuntos
Doença Crônica/psicologia , Satisfação Pessoal , Instituições Acadêmicas , Estudantes/psicologia , Ensino/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Masculino , Adulto Jovem
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