Experiences and Perspectives of Adolescents and Young Adults With Advanced CKD

Tong, Allison; Henning, Paul; Wong, Germaine; McTaggart, Steve; Mackie, Fiona; Carroll, Robert; Craig, Jonathan C.

doi:10.1053/j.ajkd.2012.09.024

Cited by 52 publications

(70 citation statements)

References 20 publications

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“…[50][51][52][53][54][55] Being able to participate in physical activity is viewed as important in both the CF and asthma populations. 56 What may be unique in children and adolescents with CF is how their susceptibility to infections (including cross-infection necessitating segregation 32,57,58 ) limits their lifestyle, reduces their capacity to participate in physical activity, and perpetuates anxiety, isolation, and uncertainty.…”

Section: Discussionmentioning

confidence: 99%

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Jamieson¹,

Fitzgerald

Singh‐Grewal

et al. 2014

PEDIATRICS

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Section: Discussionmentioning

confidence: 99%

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Jamieson¹,

Fitzgerald

Singh‐Grewal

et al. 2014

PEDIATRICS

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“…Several different approaches have been reported to assess HRQoL in the pediatric ESRD population, including health status measurements that evaluate one or more health domains [8–16] and qualitative methods [17, 18] (Table 1). Health status measurements can be structured as either generic or disease specific.…”

Section: Quality Of Life: Concepts and Measurement Instrumentsmentioning

confidence: 99%

Health-related quality of life in patients with pediatric onset of end-stage renal disease: state of the art and recommendations for clinical practice

et al. 2015

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Health-related quality of life (HRQoL) is increasingly recognized as a key outcome in both clinical and research settings in the pediatric population with end-stage renal disease (ESRD). This review aims to: (1) summarize the current knowledge on HRQoL and socioprofessional outcomes and (2) provide strategies for incorporation of HRQoL assessment into clinical practice. Studies report that pediatric patients with ESRD have significantly lower HRQoL scores compared with children with other chronic diseases. Patients treated by dialysis are at particularly high risk for impaired HRQoL. Furthermore, patients more often have impaired neurocognitive functioning and lower academic achievement. Important determinants of impaired HRQoL include medical factors (i.e., receiving dialysis, disabling comorbidities, cosmetic side effects, stunted growth), sociodemographic factors (i.e., female gender, non-Western background) and psychosocial factors (i.e., noneffective coping strategies). Contrary to the situation in childhood, adult survivors of pediatric ESRD report a normal mental HRQoL. Despite this subjective feeling of well-being, these patients have on average experienced significantly more difficulties in completing their education, developing intimate relationships, and securing employment. Several medical and psychosocial strategies may potentially improve HRQoL in children with ESRD. Regular assessment of HRQoL and neurocognitive functioning in order to identify areas in which therapies and interventions may be required should be part of standard clinical care.

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“…Recent research has highlighted that CKD patients aged 12-24 years need support and advice to improve autonomy, self management skills and the emotional burdens of future uncertainties [62]. In 377 young adults aged 22-31 years who have grown up with a somatic condition there was worse QoL and feelings of anxiety (29.7 %) and depression (17 %) in those claiming disability benefits [63].…”

Section: Youth Workmentioning

confidence: 99%

Psychosocial support for children and families requiring renal replacement therapy

Watson

2013

Pediatr Nephrol

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Chronic kidney disease (CKD) and the need for renal replacement therapy (RRT) can place a great strain on the child and family. As well as the medical and nutritional prescription, each child and family requires an individual psychosocial prescription that requires input from multiprofessional team members. The information needs of each child and family need to be constantly evaluated as well as the choice of therapy in relation to social, psychological and economic factors. Many tertiary units lack adequate "time" to deliver such assessments and coordinate the support and respite care for those on long-term dialysis, especially when significant numbers of children are now accepted onto RRT programmes with co-morbidities. National and international standards are needed for the staffing of comprehensive tertiary paediatric renal units as well as studies evaluating supportive care to families.

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Experiences and Perspectives of Adolescents and Young Adults With Advanced CKD

Cited by 52 publications

References 20 publications

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Health-related quality of life in patients with pediatric onset of end-stage renal disease: state of the art and recommendations for clinical practice

Psychosocial support for children and families requiring renal replacement therapy

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