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1.
medRxiv ; 2024 Sep 23.
Article in English | MEDLINE | ID: mdl-38826228

ABSTRACT

Cancer, one of the leading causes of death worldwide, is a disease characterized by uncontrolled cell growth within the body. While there have been many improvements in the treatment of cancer clinically, there is now an urgent need to improve cancer-related communication. This study explores the impact of online health information, specifically cancer-related information and prevention, among members of the general public. Through a randomized survey, we examined what information leads people to take action to minimize their cancer risk and communicate with their providers. Through evaluation of the various modes of communication, we were able to provide insight into which are more effective and better received by members of the general public. Through this, ways of bettering these avenues of communication and strengthening the bond between them will be highlighted and more easily elaborated on by future studies. The results of our study indicated that 60% of participants asserted that they are motivated by online preventive information to take steps to limit their cancer risk, while only roughly 44% of participants overall agreed that their doctor has communicated with them about when proper cancer screenings should be scheduled for the future. Although patients may be turning to the Internet now more than ever due to various reasons, when comparing self-reported rates of comprehension among the study participants, 35% agreed that the cancer-related information they can access online is confusing, while fewer than 22% of participants agreed that the cancer-related information they receive directly from their doctor is confusing. This is indicative of the limitations the Internet may have when undertaking the role of being a medical resource, especially when acting as a replacement for in-person medical appointments where patients can communicate directly with their physicians. Ultimately, these results provide a unique perspective into how people receive, evaluate, and implement cancer-preventive steps and general health-related information in a post-COVID-19 world, where the Internet is now strongly embedded in healthcare.

2.
Pediatr Nephrol ; 37(10): 2369-2374, 2022 10.
Article in English | MEDLINE | ID: mdl-35211794

ABSTRACT

BACKGROUND: Intronic WT1 mutations are usually causative of Frasier syndrome with focal segmental glomerulosclerosis as the characteristic nephropathy. Membranoproliferative glomerulonephritis is not commonly associated with disorders of sex development but has been recently identified as a WT1-associated nephropathy, but usually in cases of exonic mutations in either isolated Wilms tumor or Denys-Drash syndrome. METHODS: The clinical and genetic data from 3 individuals are reported. RESULTS: This report describes the kidney manifestations in 3 individuals from 2 unrelated families with Frasier syndrome intronic WT1 mutations, noting that 2 of the 3 individuals have histologically confirmed membranoproliferative glomerulonephritis. CONCLUSIONS: These case reports support expansion of the clinical spectrum of the kidney phenotypes associated with Frasier syndrome providing evidence of an association between WT1 mutation and an immune complex-related membranoproliferative glomerulonephritis. A higher resolution version of the Graphical abstract is available as Supplementary information.


Subject(s)
Denys-Drash Syndrome , Glomerulonephritis, Membranoproliferative , Gonadal Dysgenesis , Kidney Neoplasms , Wilms Tumor , Denys-Drash Syndrome/genetics , Denys-Drash Syndrome/pathology , Frasier Syndrome/genetics , Genes, Wilms Tumor , Glomerulonephritis, Membranoproliferative/genetics , Gonadal Dysgenesis/genetics , Humans , Kidney Neoplasms/genetics , Mutation , WT1 Proteins/genetics , Wilms Tumor/genetics
3.
Pediatr Nephrol ; 37(3): 651-658, 2022 03.
Article in English | MEDLINE | ID: mdl-34490518

ABSTRACT

BACKGROUND: The effectiveness of rhGH on growth and final height (FH) was determined in children with CKD and kidney failure using data linkage from two national databases. METHODS: Data on Australian children with CKD and kidney failure treated with rhGH were obtained by linking ANZDATA and OzGrow registries. The CKD cohort included children treated with rhGH prior to kidney replacement therapy (KRT). The KRT cohort consisted of children with kidney failure, some received rhGH, and some were untreated. Height standard deviation scores (Ht-SDS) were calculated with final height defined as last height recorded in girls > 16 years of age and boys > 17 years of age. RESULTS: In the CKD group, there were 214 children treated with rhGH prior to KRT. In the KRT group, there were 1,032 children, 202 (19%) treated with rhGH and 830 (81%) untreated. Growth significantly improved in the rhGH-treated CKD group (ΔHt-SDS = +0.80 [+0.68 to +0.92]; p < 0.001) and the rhGH-treated KRT group (ΔHt-SDS = +0.38 [+0.27 to +0.50]; p < 0.001). Within the KRT cohort, final height was available for 423 patients (41%), of which 137 (32%) had been treated with rhGH. The rhGH-treated group demonstrated marginally better catch-up growth (ΔHt-SDS = +0.05 [-0.18 to 0.29]) compared to the non-rhGH-treated group (ΔHt-SDS = -0.03 [-0.16 to 0.10]; p = 0.49). CONCLUSIONS: This large linkage study confirms rhGH is effective in improving height in children with CKD pre-KRT. However, rhGH appears to have a variable impact on growth once children have commenced KRT resulting in a marginal impact on final height.


Subject(s)
Human Growth Hormone , Renal Insufficiency, Chronic , Australia/epidemiology , Body Height , Child , Female , Growth Disorders/drug therapy , Growth Disorders/etiology , Growth Hormone , Human Growth Hormone/therapeutic use , Humans , Male , Renal Insufficiency, Chronic/complications , Renal Insufficiency, Chronic/drug therapy
4.
J Paediatr Child Health ; 56(4): 577-580, 2020 Apr.
Article in English | MEDLINE | ID: mdl-31705764

ABSTRACT

The late outcome in 55 children with infection-mediated haemolytic uremic syndrome (Shiga Toxin E Coli (STEC)-HUS and pneumococcal HUS) observed in 1979-1995 was followed up 23 years after disease onset. Of these, two were later confirmed to have atypical HUS (aHUS). Furthermore, of this population, five children had impaired kidney function at 3-months follow-up, which continued to deteriorate. These children had significant oliguria/anuria and hypertension during their illness requiring early dialysis and antihypertensive therapy. At 23 years post-disease onset, all five (100%) of these children have developed end-stage kidney disease or chronic kidney disease. Eculizumab is a monoclonal antibody that binds with high affinity to the C5 protein of the complement pathway, a major component of the pathophysiology of infection-mediated HUS. There are no long-term randomised controlled trials in the literature to support its use in such cases. Our 23-year follow-up of a population of severely affected children with infection-mediated HUS demonstrates a high percentage of chronic kidney disease and end-stage kidney disease (19%). Randomised controlled trials with eculizumab are now being conducted in this affected cohort.


Subject(s)
Escherichia coli , Hemolytic-Uremic Syndrome , Antibodies, Monoclonal, Humanized , Child , Follow-Up Studies , Hemolytic-Uremic Syndrome/complications , Hemolytic-Uremic Syndrome/drug therapy , Humans , Prognosis
5.
Kidney Int Rep ; 3(5): 1214-1217, 2018 Sep.
Article in English | MEDLINE | ID: mdl-30197988
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