Impact of Pediatric Kidney Transplantation on Long-Term Professional and Social Outcomes

Rocha, Sofía Ródenas de la; Fonseca, Isabel; Silva, N.; Martins, La Salete; Dias, Leonídio; Henriques, António Castro; Faria, Maria do Sameiro; Costa, Teresa; Rocha, Luana Padilha da; Cabrita, António; Mota, Conceição

doi:10.1016/j.transproceed.2010.12.011

Cited by 22 publications

(27 citation statements)

References 11 publications

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“…ESKD and dialysis significantly undermined the perceived ability for young adults to succeed in education and employment, in both Oxford and Denver. These findings are in accordance with earlier studies in older adult ESKD populations demonstrating that ESKD impacts adversely on employment opportunities (Groothoff et al 2005;Rocha et al 2011). However, there has been very little data specifically from populations of young adults where employability and employment rates are paramount.…”

Section: Discussionsupporting

confidence: 93%

“…; Rocha et al . ). However, there has been very little data specifically from populations of young adults where employability and employment rates are paramount.…”

Section: Discussionmentioning

confidence: 97%

“…Young adults are at a pivotal stage of life, when future career opportunities are shaped by academic or vocational qualifications and experience. The challenge of accepting and managing ESKD with the requirement for adherence to treatment, combined with the stress of adolescence, generates negative medical, social, educational and employment outcomes (Groothoff et al 2005;Rocha et al 2011;Murray et al 2014). Young adults with ESKD often report low self-worth, anticipate precarious futures and feel comparatively limited in physical and mental capacities compared with peers (Tong et al 2013).…”

Section: Literature Reviewmentioning

confidence: 99%

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Academic achievement and employment in young adults with end‐stage kidney disease

Murray

Brodermann

Gralla

et al. 2018

Journal of Renal Care

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SUMMARY Background Young adults with end‐stage kidney disease (ESKD) are at a pivotal stage of life: progressing through education, seeking employment and developing relationships. We set out to explore how ESKD impacts education and employment attainment in a matched UK and USA patient cohort. Moreover, we aimed to determine if there were significant differences in reported perceptions of impact. Design A mixed methods design combining previously validated quantitative questionnaire surveys and qualitative semi‐structured interviews. Participants Young people with ESKD aged 18–30 years (N = 27), attending single‐centre follow‐up in Oxford, UK were matched with 27 comparable young people aged 19–30 years, under follow‐up in Denver, USA. Twelve of these patients from Denver were selected for interview. Measurements Self‐report questionnaires surveyed patient demographics, educational and employment achievement and experiences. Questionnaire categorical data for matched pairs were analysed using Bowker's test of symmetry. Sequential flow analyses of interview content delineated perception patterns through thematic coding. Results Sixty percent of non‐student Oxford participants were employed compared with 41% in Denver (p = 0.023). Forty‐four percent of Oxford patients compared with 52% in Denver, reported illness had made it difficult to gain employment (p = 0.88). In Oxford, 32% completed high school as their highest educational achievement, versus 68% in Denver (p = 0.22). Qualitative themes included fatigue, self‐esteem loss, social isolation and low mood. The impact of dialysis and poor understanding from educators/employers resulted in lost work time, and/or limited educational attainment. Conclusion ESKD profoundly impacts on education and employment of young adults in the United States and United Kingdom, generating substantial barriers. Poor understanding appears prevalent amongst educators and employers. Healthcare providers must recognise these problems and invest resources towards tailored support in order to improve associated psychosocial and clinical outcomes.

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Section: Discussionsupporting

confidence: 93%

“…; Rocha et al . ). However, there has been very little data specifically from populations of young adults where employability and employment rates are paramount.…”

Section: Discussionmentioning

confidence: 97%

Section: Literature Reviewmentioning

confidence: 99%

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Academic achievement and employment in young adults with end‐stage kidney disease

Murray

Brodermann

Gralla

et al. 2018

Journal of Renal Care

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“…In terms of social and professional outcomes, several studies have shown that young adult survivors of childhood ESRD struggle to secure gainful employment, complete their education, experience intimate relationships, and live independently [95–102]. A French study assessing 374 adult (aged 24–36) survivors of pediatric transplantation found that professional occupation was similar to the French general population but the unemployment rate was higher: 18.5 % vs. 10.4 %; P < 0.01.…”

Section: Children Reaching Adulthoodmentioning

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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“…Once the adherence challenges during puberty are overcome, these patients enjoy quite favourable outcomes including a normal height owing to the use of recombinant human growth hormone, both before and after renal transplantation [4]. The importance of final height was stressed in studies performed in Europe [5][6][7], China [8] and the USA [9]. However, social rehabilitation leaves a lot to be desired.…”

mentioning

confidence: 99%

We have to do more for former paediatric renal transplant recipients!

Filler

Ferris

2018

Transpl Int

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Impact of Pediatric Kidney Transplantation on Long-Term Professional and Social Outcomes

Cited by 22 publications

References 11 publications

Academic achievement and employment in young adults with end‐stage kidney disease

Academic achievement and employment in young adults with end‐stage kidney disease

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

We have to do more for former paediatric renal transplant recipients!

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