Key stakeholders' perspectives on the development of an early dietary phosphate self-management strategy for children and young people with chronic kidney disease stages 1-3: A modified Delphi consensus process.

BACKGROUND: An early dietary phosphate intervention (EPI) can provide vital medical benefits supporting self-management of chronic kidney disease (CKD) in childhood. OBJECTIVE: To utilise expert consensus to provide early modelling for an EPI to guide clinical practice across a paediatric renal network. METHODS: Forty-eight statements across six domains were constructed following a systematic review and semi-structured interviews with children and young people (CYP), parents and healthcare professionals (HCP). A three-round online Delphi survey with parents and paediatric renal multi-disciplinary healthcare experts was undertaken. RESULTS: Twenty-one experts agreed on 56 statements over three Delphi rounds. Statements were accepted in all six domains: definition of an EPI (2), rationale (12), intended users (3), delivery (14) (when [1], where [3], who [2], how [8]), other considerations (16) and potential concerns (9). CONCLUSIONS: Consensus was reached on a definition and a set of guiding principles, providing some early modelling for implementation and future research on the development of an EPI strategy for CYP with CKD.

Children's, parents', and other stakeholders' perspectives on the factors influencing the initiation of early dietary change in the management of childhood chronic disease: a mixed studies systematic review using a narrative synthesis.

BACKGROUND: Early dietary change can provide vital medical benefits supporting childhood chronic disease self-management. OBJECTIVE: To explore factors influencing the initiation of early dietary change in the management of childhood chronic disease, as described by children, parents', and other stakeholders, to inform practice change in early paediatric service delivery. METHODS: This systematic review crossed seven databases from 2000-2018 to identify empirical research (qualitative, quantitative, and mixed-method designs), including grey literature. Methodological quality was appraised using validated scoring systems. RESULTS: Six studies met our criteria for inclusion in the review. Four themes of early dietary change emerged from these studies: (1) the role of education; (2) parents/caregivers' roles; (3) the role of self-management, and the (4) identification of enablers and barriers to dietary change. CONCLUSION: Obtaining the perspectives of children, parents' and other stakeholders' on factors influencing early dietary change is key to the self-management of childhood chronic disease. PRACTICE IMPLICATIONS: Early dietary change provides an essential resource in the self-management of many chronic diseases. In collaboration, children, parents' and healthcare professionals recognise the value of regular, engaging education, supported by workshops to empower and upskill, enabling change in everyday dietary habits, while using enablers and recognising challenges.

The dietary management of calcium and phosphate in children with CKD stages 2-5 and on dialysis-clinical practice recommendation from the Pediatric Renal Nutrition Taskforce.

In children with chronic kidney disease (CKD), optimal control of bone and mineral homeostasis is essential, not only for the prevention of debilitating skeletal complications and achieving adequate growth but also for preventing vascular calcification and cardiovascular disease. Complications of mineral bone disease (MBD) are common and contribute to the high morbidity and mortality seen in children with CKD. Although several studies describe the prevalence of abnormal calcium, phosphate, parathyroid hormone, and vitamin D levels as well as associated clinical and radiological complications and their medical management, little is known about the dietary requirements and management of calcium (Ca) and phosphate (P) in children with CKD. The Pediatric Renal Nutrition Taskforce (PRNT) is an international team of pediatric renal dietitians and pediatric nephrologists, who develop clinical practice recommendations (CPRs) for the nutritional management of various aspects of renal disease management in children. We present CPRs for the dietary intake of Ca and P in children with CKD stages 2-5 and on dialysis (CKD2-5D), describing the common Ca- and P-containing foods, the assessment of dietary Ca and P intake, requirements for Ca and P in healthy children and necessary modifications for children with CKD2-5D, and dietary management of hypo- and hypercalcemia and hyperphosphatemia. The statements have been graded, and statements with a low grade or those that are opinion-based must be carefully considered and adapted to individual patient needs based on the clinical judgment of the treating physician and dietitian. These CPRs will be regularly audited and updated by the PRNT.

Children's, parents' and other stakeholders' perspectives on early dietary self-management to delay disease progression of chronic disease in children: a protocol for a mixed studies systematic review with a narrative synthesis.

BACKGROUND: Chronic disease of childhood may be delayed by early dietary intervention. The purpose of this systematic review is to provide decision-makers with a perspective on the role of early dietary intervention, as a form of self-management, to delay disease progression in children with early chronic disease, as described by children, parents and other stakeholders. METHODS: The study will systematically review empirical research (qualitative, quantitative and mixed method designs), including grey literature, using a narrative synthesis. A four-stage search process will be conducted involving a scoping search, the Scottish Intercollegiate Guidelines Network (SIGN) Patient Issues search filter on MEDLINE, the search of seven databases using a chronic disease and chronic kidney disease (CKD) search strategy, and hand searching the reference lists of identified papers for additional studies. All studies retrieved during the search process will undergo a screening and selection process against the inclusion/exclusion criteria. Methodological quality of relevant studies will be assessed using a validated Mixed Studies Review scoring system, before inclusion in the review. Relevant grey literature will be assessed for methodological quality and relative importance using McGrath et al.'s framework and the Academy Health advisory committee categories, respectively. Data extraction will be guided by the Centre for Review and Dissemination guidance and Popay et al.'s work. The narrative synthesis of the findings will use elements of Popay et al.'s methodology of narrative synthesis, applying recognised tools for each of the four elements: (1) developing a theory of how the intervention works, why and for whom; (2) developing a preliminary synthesis of findings of included studies; (3) exploring relationships in the data; and (4) assessing the robustness of the synthesis. DISCUSSION: This mixed studies systematic review with a narrative synthesis seeks to elucidate the gaps in current knowledge and generate a fresh explanation of research findings on early dietary self-management in chronic disease, with particular application to CKD, from the stakeholders' perspective. The review will provide an important platform to inform future research, identifying the facilitators and barriers to implementing early dietary interventions. Ultimately, the review will contribute vital information to inform future improvements in chronic disease. The lead author has a particular interest in CKD paediatric service delivery. SYSTEMATIC REVIEW REGISTRATION: The review has been registered with PROSPERO (CRD42017078130).

Transition from gastrostomy to oral feeding following renal transplantation.

Feeding through a gastrostomy button (GB) provides benefits to the families of children on chronic dialysis. But data on the transition to oral feeding following renal transplantation--especially in children under 2--is scarce. Here, we report our experience of more than 14 years in 22 children who were GB fed at under 5 years of age (median age: 1.66 years; range: 0.25-4.25 years). We excluded 6 children from the analysis of transition following transplantation because of factors precluding early return to oral feeding--specifically, cognitive impairment and a tongue tie. We compared 10 children who commenced GB feeding at less than 2 years (group 1) with those who commenced at 2-5 years (group 2, n = 6). All 16 children made the transition to normal oral feeding by 10 months post transplantation. Median duration of GB feeding post-transplant in group 1 was 0.3 years (range: 0.1-1.0 years) as compared with 0.2 years (range: 0-0.3 years) in group 2 (p = 0.2). Children with normal cognition and no other precluding factors who have a GB inserted at less than 2 years of age can make a successful transition from GB to oral feeding with no significant delay. Family support should be individualized during this period of potential anxiety.