IgG concentrations prior to and at the time of rituximab
correlated with nadir IgG. IgG replacement was initiated because of recurrent infection in 12 (4.2%) patients and a lower IgG increased the odds ratio of receiving IgG replacement. IgG replacement therapy decreased the incidence and severity of infections, and recovery of IgG concentrations allowed cessation of IgG replacement in two patients after 4 and 7.5 years of replacement treatment. Conclusions: Monitoring of IgG is recommended for patients receiving rituximab. IgG replacement for sustained hypogammaglobulinaemia with recurrent Ruxolitinib infections appears effective. The IgG treatment course is prolonged in most patients, but IgG recovery is reported. 175 PARENTAL PERSPECTIVES ON THE FINANCIAL IMPACT OF CARING FOR A CHILD WITH CHRONIC KIDNEY DISEASE M MEDWAY1,2, PF 2341066 A TONG1,2, JC CRAIG1,2,
S KIM2, F MACKIE3, S MCTAGGART4, B BARTON5, K HOWARD1, G WILLIAMS1,2, A WALKER6, G WONG1,2 1Sydney School of Public Health, The University of Sydney, Sydney, NSW; 2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW; 3Department of Nephrology, Sydney Children’s Hospital, Sydney, NSW; 4Department of Nephrology, Royal Children’s Hospital, Brisbane, QLD; 5Children’s Hospital Education Research Institute, The Children’s Hospital at Westmead, Sydney, NSW; 6Department of Nephrology, Royal Children’s Hospital, Melbourne, Victoria, Australia Aim: This study aims to describe parental perspectives on the financial impact of caring for a child with CKD. Background: Chronic kidney disease (CKD) can impose a significant social
and financial burden on patients and caregivers, however little is known about how caregivers experience and cope with the financial impact of CKD. Methods: Face-to-face semi-structured interviews were conducted with 27 parents of children with CKD across three centres in New South Wales and Queensland. Transcripts were thematically analysed. Results: We identified five themes: loss of freedom (prioritizing demands of care, limiting occupational opportunities, appreciating socio-economic advantage); burden of sole responsibility (inability to rely oxyclozanide on others, lack of respite, increased separation of family roles, self-reliance); adapting for survival (vigilant budgeting, redefining normality and expectations, rechanneling resources to basic needs, exploring new income sources, negotiating work flexibility); instability of circumstances (depleted capacity to work, unpredictability of child’s health, burden of travel-related costs, imposition of debt, domestic upheaval); and struggle in seeking support (‘falling through the cracks’, unmet information needs). Conclusions: Parents experienced meeting the complex needs of their child with CKD as an overwhelming focus, which they believed consumed much of their resources, time and energy.