UK Renal Registry 19th Annual Report: Chapter 4 Demography of the UK Paediatric Renal Replacement Therapy Population in 2015

Hamilton, Alexander; Braddon, Fiona; Casula, Anna; Lewis, Malcolm; Mallett, Tamara; Marks, Stephen D.; Shenoy, Mohan; Sinha, Manish D.; Tse, Yincent; Maxwell, Heather

doi:10.1159/000481366

Cited by 21 publications

(12 citation statements)

References 1 publication

(3 reference statements)

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“…The UK Renal Registry (UKRR) collects data on all patients receiving KRT from UK adult and pediatric kidney units (11,12). It has been granted a section 251 exemption by the Health Research Authority, allowing the registration of identifiable patient information from kidney units without first asking individual patient consent.…”

Section: Clinical Data From the Uk Renal Registrymentioning

confidence: 99%

Associations with Wellbeing and Medication Adherence in Young Adults Receiving Kidney Replacement Therapy

Hamilton

Caskey

Casula

et al. 2018

CJASN

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Background and objectives Young adults receiving kidney replacement therapy (KRT) have impaired quality of life and may exhibit low medication adherence. We tested the hypothesis that wellbeing and medication adherence are associated with psychosocial factors.Design, setting, participants, & measurements We conducted a cross-sectional online survey for young adults on KRT. Additional clinical information was obtained from the UK Renal Registry. We compared outcomes by treatment modality using age-and sex-adjusted regression models, having applied survey weights to account for response bias by sex, ethnicity, and socioeconomic status. We used multivariable linear regression to examine psychosocial associations with scores on the Warwick-Edinburgh Mental Wellbeing Scale and the eight-item Morisky Medication Adherence Scale. ResultsWe recruited 976 young adults and 64% responded to the survey; 417 (71%) with transplants and 173 (29%) on dialysis. Wellbeing was positively associated with extraversion, openness, independence, and social support, and negatively associated with neuroticism, negative body image, stigma, psychologic morbidity, and dialysis. Higher medication adherence was associated with living with parents, conscientiousness, physician access satisfaction, patient activation, age, and male sex, and lower adherence was associated with comorbidity, dialysis, education, ethnicity, and psychologic morbidity.Conclusions Wellbeing and medication adherence were both associated with psychologic morbidity in young adults. Dialysis treatment is associated with poorer wellbeing and medication adherence.

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Section: Clinical Data From the Uk Renal Registrymentioning

confidence: 99%

Associations with Wellbeing and Medication Adherence in Young Adults Receiving Kidney Replacement Therapy

Hamilton

Caskey

Casula

et al. 2018

CJASN

Self Cite

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“…The UK Renal Registry (UKRR) collects data for all RRT patients from all adult and pediatric renal centers in the United Kingdom. 13,14 The UKRR has been granted a section 251 exemption by the Health Research Authority. This exemption allows the use of identifiable patient information for certain audit and research activities without first asking the consent of each individual patient.…”

Section: Clinical Data From the Uk Renal Registrymentioning

confidence: 99%

Psychosocial Health and Lifestyle Behaviors in Young Adults Receiving Renal Replacement Therapy Compared to the General Population: Findings From the SPEAK Study

Hamilton

Caskey

Casula

et al. 2019

American Journal of Kidney Diseases

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Patients in late adolescence and early adulthood receiving renal replacement therapy (RRT) face disruption to normal activities, which affects well-being. We aimed to define psychosocial and lifestyle outcomes for young adults on RRT compared to the general population. Study Design: We undertook a cross-sectional survey (the SPEAK [Surveying Patients Experiencing Young Adult Kidney Failure] Study) using validated measures and general population comparator data from the Health Survey for England and Avon Longitudinal Study of Parents and Children. Additional clinical information was obtained from the UK Renal Registry.

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“…Most children in higher income countries with ESKD receive a kidney transplant. Prevalence rates of kidney transplantation for children and adolescents in the United States, United Kingdom, and Australia and New Zealand was 71%, 89%, and 82% in 2015, respectively (Hamilton et al 2017). In the United States since 2006, deceased donor kidney transplants have become less common that live kidney transplants.…”

Section: Introductionmentioning

confidence: 99%

Parents' perspectives and experiences of kidney transplantation in children: A qualitative interview study

Walker

Naicker

Kara

et al. 2019

Journal of Renal Care

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SUMMARY Background and Objective Kidney transplantation offers greater life expectancy, quality of life and participation compared with dialysis, in children with end stage kidney disease. This study explores the perspectives and experiences of parents of children undergoing kidney transplantation, as the experiences of parents in the process of transplantation is not completely understood. Methods Face‐to‐face semi‐structured interviews were conducted with parents of transplanted children across New Zealand. Data were analysed using thematic analysis to identify themes of participant experiences and perspectives. Results We interviewed 13 mothers and four fathers of the transplanted children. Four themes were identified: actively pursuing transplant (the urgency of transplant; needing to drive the transplantation process); lack of on‐going support (needing access to specialists; feeling unprepared for demands of transplantation, and vulnerability of unmet emotional concerns), pressure on the family unit (strain of distance; disrupting parent team; added burden of parent as donor; financial stress) and constant concern for the future (living with enduring uncertainty; pressure of responsibility; apprehension of teenage years). Conclusions Parents of children need to play an active role in advocating and driving the transplantation process. Transplantation leads to parental role disruption, emotional and financial stress, and insecurity about the future for their child. These findings suggest the need for greater communication and transparency in the transplantation process with parents, improved emotional and financial support for families during and after transplantation, and explicit assistance for parental roles in families when a caregiver is the donor.

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UK Renal Registry 19th Annual Report: Chapter 4 Demography of the UK Paediatric Renal Replacement Therapy Population in 2015

Cited by 21 publications

References 1 publication

Associations with Wellbeing and Medication Adherence in Young Adults Receiving Kidney Replacement Therapy

Associations with Wellbeing and Medication Adherence in Young Adults Receiving Kidney Replacement Therapy

Psychosocial Health and Lifestyle Behaviors in Young Adults Receiving Renal Replacement Therapy Compared to the General Population: Findings From the SPEAK Study

Parents' perspectives and experiences of kidney transplantation in children: A qualitative interview study

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