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.
Accumulation of ammonia in the blood may result in an acute life-threatening event in children. Patients typically present with lethargy, poor feeding, and hypotonia; if not managed efficiently, patients can develop seizures, coma, and eventually die. Management of hyperammonemia is difficult in children given the non-specific symptoms, age specific etiologies, and lack of consensus in the treatment plan. We systematically reviewed published literature to provide expert consensus panel recommendations for medical management and renal replacement therapy (RRT) in pediatric patients with hyperammonemia. Methods: PubMed/Medline, Embase and Cochrane database search was performed to include studies about hyperammonemia and RRT in children <18 years old. Two independent reviewers reviewed each title, abstract, and relevant full text articles. An expert panel of international pediatric nephrologists discussed medical management and RRT for hyperammonemia in children at a consensus conference to provide recommendations. Results: The initial search returned a total of 477 citations and 25 studies met the inclusion criteria. A total of 132 patients were included in these 25 studies and were treated with different dialysis modalities. Twenty-three heperammonemia patients were treated with peritoneal dialysis with 65% success rate, five were treated with intermittent hemodialysis with 100% success rate, 92 were treated with continuous renal replacement therapy (CRRT) with 60% success rate and three were treated by extracorporeal membrane oxygenation (ECMO) combined with CRRT and had 100% success rate. Conclusions: Expert panel recommendations were provided with regards to non-RRT (medical management), hemodialysis, peritoneal dialysis, CRRT, high dose CRRT, and hybrid therapy. CRRT was the first line dialysis modality of choice recommended for hyperammonemia management in children. Indications for RRT were variable among studies reviewed; RRT was recommended at ammonia blood level > 400mmol/L or in hemodynamically unstable children irrespective of blood ammonia level. More studies are needed to further strengthen these expert recommendations.
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