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1.
Prog Transplant ; 28(3): 244-249, 2018 09.
Article in English | MEDLINE | ID: mdl-29898638

ABSTRACT

BACKGROUND: The period of transition from pediatric to adult services represents a time when young people need support, information, and appropriate care in order to successfully move. It is a period that is associated with nonadherence and disengagement with care. OBJECTIVE: To explore the experiences of young liver transplant recipients transitioning to adult services and determine what they require in order to achieve a successful move. The research also explored the possibility of using a mobile phone application (app) as a tool to support transition. DESIGN: Qualitative approach using novel arts-based focus groups and one-to-one interviews. PARTICIPANTS: Twenty-one young people aged 16 to 25 years, 16 health-care professionals involved in their care, and 7 young people as follow-up. Participants used services provided by the 3 liver centers in England (Leeds, Birmingham, and London). RESULTS: Data highlighted the variability of transition pathways in England for young people moving from child to adult health services. The results showed that they required clear information regarding transition processes including specific medical information and that there was a shortfall in such information. Support was required in the form of a designated transition coordinator or similar specialist who could act as a point of reference and guidance throughout the process. Transitions needed to be individualized and based upon transition readiness rather than age, although the research showed that age cut-offs were still used. CONCLUSION: Young people welcomed apps to provide information, reminders, contacts, and connections. Future research should explore the efficacy of such apps.


Subject(s)
Liver Transplantation/psychology , Mobile Applications , Needs Assessment/statistics & numerical data , Transition to Adult Care/statistics & numerical data , Transplant Recipients/psychology , Transplant Recipients/statistics & numerical data , Adolescent , Adult , England , Female , Humans , Male , Middle Aged , Qualitative Research , Surveys and Questionnaires , Young Adult
2.
Prog Transplant ; 27(2): 207-218, 2017 06.
Article in English | MEDLINE | ID: mdl-28617171

ABSTRACT

BACKGROUND: The process and preparation of moving from child to adult services (transition) is a challenging period of time for young people and represents significant changes in care and support systems. The proliferation of mobile phone applications for health purposes suggests that it is an area for further investigation. OBJECTIVE: The review explores the potential to use mobile phone technology to help support young liver transplant recipients moving to adult services. It represents the first review conducted in this specialism and considers a new model of support for young liver patients. METHODS: A systematic rapid review of the published peer-reviewed literature. RESULTS: Two searches were conducted: Search 1: the use of technology to support transition to adult services (6 studies) and Search 2: how best to support liver transplant recipients during transition (6 studies). DISCUSSION: Research shows that to achieve positive transition young people need information about their condition and transition. The process needs to be guided by transition readiness, rather than the young persons' age. Although parents and support networks should be in place and are valued, transition should build upon self-management and independence. Results suggest that there appears to be scope to use mobile phone technology to support transition. This is the first time a review has explored the types of issues or concerns facing liver transplant patients and how these can be addressed through mobile phone technology.


Subject(s)
Cell Phone , Liver Transplantation , Mobile Applications , Transition to Adult Care , Adolescent , Humans , Needs Assessment , Patient Education as Topic , Self-Management , Young Adult
3.
Arch Dis Child ; 102(3): 274-278, 2017 Mar.
Article in English | MEDLINE | ID: mdl-27831909

ABSTRACT

With the growing number of children and young people with complex care needs or life-limiting conditions, alternative routes for nutrition have been established (such as gastrostomy feeding). The conditions of children and young people who require such feeding are diverse but could relate to problems with swallowing (dysphagia), digestive disorders or neurological/muscular disorders. However, the use of a blended diet as an alternative to prescribed formula feeds for children fed via a gastrostomy is a contentious issue for clinicians and researchers. From a rapid review of the literature, we identify that current evidence falls into three categories: (1) those who feel that the use of a blended diet is unsafe and substandard; (2) those who see benefits of such a diet as an alternative in particular circumstances (eg, to reduce constipation) and (3) those who see merit in the blended diet but are cautious to proclaim potential benefits due to the lack of clinical research. There may be some benefits to using blended diets, although concerns around safety, nutrition and practical issues remain.


Subject(s)
Enteral Nutrition/methods , Food, Formulated , Gastrostomy/methods , Child , Choice Behavior , Family Health , Home Nursing , Humans , Risk Factors
4.
Child Adolesc Ment Health ; 21(1): 11-20, 2016 Feb.
Article in English | MEDLINE | ID: mdl-32680362

ABSTRACT

BACKGROUND: Secure attachment is associated with optimal outcomes across all domains in childhood, and both insecure and disorganised attachment are associated with a range of later psychopathologies. Insecure and disorganised attachment are common, particularly in disadvantaged populations, pointing to the need to identify effective methods of addressing such problems. AIMS: This paper presents the findings of a review of secondary and primary studies evaluating the effectiveness of interventions aimed at improving attachment and attachment-related outcomes on a universal, targeted or indicated basis, which was undertaken as part of an update of the evidence base for a UK-based national programme targeting children aged 0-5 years (Healthy Child Programme). METHOD: A systematic search of key electronic databases was undertaken to identify secondary and primary sources of data that addressed the research question and that had been published between 2008 and 2014; search sources included Cochrane Collaboration, NICE, EPPI Centre, Campbell Collaboration and PubMed, PsychInfo, CINAHL databases. FINDINGS: Six systematic reviews and 11 randomised controlled trials were identified that had evaluated the effectiveness of universal, selective or indicated interventions aimed at improving attachment and attachment-related outcomes in children aged 0-5 years. Potentially effective methods of improving infant attachment include parent-infant psychotherapy, video feedback and mentalisation-based programmes. Methods that appear to be effective in improving attachment-related outcomes include home visiting and parenting programmes. CONCLUSIONS: A number of methods of working to promote attachment and attachment-related outcomes in preschool children are now being recommended as part of the Healthy Child Programme. The implications in terms of the role and contribution of practitioners working in child and adolescent mental health service are discussed.

5.
J Ren Nutr ; 20(6): 351-8, 2010 Nov.
Article in English | MEDLINE | ID: mdl-20850345

ABSTRACT

Malnutrition is known to be highly prevalent in patients with kidney disease. It is associated with poor clinical prognosis and can result from restricted dietary protein-energy intake. The issue is also compounded by protein wasting that occurs in dialysis patients. In countering malnutrition, an adequate protein intake is essential but limited by its phosphate content. Therefore, an accurate assessment of nutritional status and intake is an important part of the therapeutic strategy for patients on dialysis. Assessing dietary phosphate intake is not straight forward, with many confounding factors requiring consideration. Interview and diet diaries are the preferred means by which dietary intake can be estimated. However, it is evident that these estimates can vary considerably and are subject to underreporting. Moreover, the use of phosphates as additives and their omission from available nutrient databases are significant contributors to this variation and underestimation. This review highlights the main limitations in assessing dietary phosphate intake and introduces the concept of monitoring changes in dietary habit (appetite) as a proxy for dietary protein and energy intake. This review discusses the use of monitoring dietary habit in trials, with phosphate binders as a simple tool to address the possibility that changes to dietary habits may influence phosphate binder efficacy.


Subject(s)
Feeding Behavior , Kidney Diseases/physiopathology , Malnutrition/metabolism , Phosphates/metabolism , Appetite , Diet Records , Dietary Proteins/metabolism , Energy Intake , Europe , Humans , Interviews as Topic , Nutritional Status , Prealbumin/analysis , Renal Dialysis , Serum Albumin/analysis
6.
Clin J Am Soc Nephrol ; 4(2): 401-9, 2009 Feb.
Article in English | MEDLINE | ID: mdl-19158369

ABSTRACT

BACKGROUND AND OBJECTIVES: This phase II study tested the safety and efficacy of fermagate, a calcium-free iron and magnesium hydroxycarbonate binder, for treating hyperphosphatemia in hemodialysis patients. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: A randomized, double-blind, three-arm, parallel-group study compared two doses of fermagate (1 g three times daily or 2 g three times daily with placebo). Sixty-three patients who had been on a stable hemodialysis regimen for > or =3 mo were randomized to the treatment phase. Study medication was administered three times daily just before meals for 21 d. The primary endpoint was reduction in serum phosphate over this period. RESULTS: In the intention-to-treat analysis, mean baseline serum phosphate was 2.16 mmol/L. The fermagate 1- and 2-g three-times-daily treatment arms were associated with statistical reductions in mean serum phosphate to 1.71 and 1.47 mmol/L, respectively. Adverse event (AE) incidence in the 1-g fermagate arm was statistically comparable to the placebo group. The 2-g arm was associated with a statistically higher number of patients reporting AEs than the 1-g arm, particularly gastrointestinal AEs, as well as a higher number of discontinuations, complicating interpretation of this dose's efficacy. Both doses were associated with elevations of prehemodialysis serum magnesium levels. CONCLUSIONS: The efficacy and tolerability of fermagate were dose dependent. Fermagate showed promising efficacy in the treatment of hyperphosphatemia in chronic hemodialysis patients as compared with placebo in this initial phase II study. The optimal balance between efficacy and tolerability needs to be determined from future dose-titration studies, or fixed-dose comparisons of more doses.


Subject(s)
Carbonates/therapeutic use , Hyperphosphatemia/drug therapy , Iron/therapeutic use , Kidney Diseases/therapy , Magnesium/therapeutic use , Renal Dialysis , Calcium/blood , Carbonates/administration & dosage , Carbonates/adverse effects , Cholesterol/blood , Chronic Disease , Dose-Response Relationship, Drug , Double-Blind Method , Drug Administration Schedule , England , Humans , Hyperphosphatemia/blood , Hyperphosphatemia/etiology , Iron/administration & dosage , Iron/adverse effects , Kidney Diseases/complications , Magnesium/administration & dosage , Magnesium/adverse effects , Magnesium/blood , Phosphates/blood , Renal Dialysis/adverse effects , Treatment Outcome
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