Quality of life in children with end-stage renal disease based on a PedsQL ESRD module

Park, Sun-Hee; Hwang, Yun Jin; Cho, Min Hyun; Ko, Cheol Woo; Ha, Il Soo; Kang, Hee Gyung; Cheong, Hae Il; Lee, Yoon Jung; Lee, Joo Hoon; Cho, Hee Yeon

doi:10.1007/s00467-012-2262-1

Cited by 64 publications

(68 citation statements)

References 22 publications

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“…The literature on this topic has shown mixed results when comparing patients with renal transplant to children with varying degrees of chronic kidney disease and those on dialysis. In studies that have relied on child self-report it is typical not to find significant differences in health related quality of life after renal transplant as compared to children prior to transplant [4, 27, 29]. One may postulate that the small sample size of end stage kidney disease patients in our study may explain the lack of significant differences across chronic kidney disease severity.…”

Section: Discussionmentioning

confidence: 84%

Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease: a Midwest Pediatric Nephrology Consortium study

et al. 2014

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Background and Objectives Chronic kidney disease is a persistent chronic health condition commonly seen in pediatric nephrology programs. Our study aims to evaluate the sensitivity of the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric instrument to indicators of disease severity and activity in pediatric chronic kidney disease. Methods This cross sectional study included 233 children 8–17 years old with chronic kidney disease from 16 participating institutions in North America. Disease activity indicators, including hospitalization in the previous 6 months, edema, and number of medications consumed daily, as well as disease severity indicators of kidney function and coexisting medical conditions were captured. PROMIS domains, including depression, anxiety, social-peer relationships, pain interference, fatigue, mobility, and upper extremity function, were administered via web-based questionnaires. Absolute effect sizes (AES) were generated to demonstrate the impact of disease on domain scores. Four children were excluded because of missing GFR estimations. Results 221 of the 229 children included in the final analysis completed the entire PROMIS questionnaire. Unadjusted PROMIS domains were responsive to chronic kidney disease activity indicators and number of coexisting conditions. PROMIS domain scores were worse in the presence of recent hospitalizations (depression AES 0.33, anxiety AES 0.42, pain interference AES 0.46, fatigue AES 0.50, mobility AES 0.49), edema (depression AES 0.50, anxiety AES 0.60, pain interference AES 0.77, mobility AES 0.54) and coexisting medical conditions (social peer-relationships AES 0.66, fatigue AES 0.83, mobility AES 0.60, upper extremity function AES 0.48). Conclusions The PROMIS pediatric domains of depression, anxiety, social-peer relationships, pain interference, and mobility were sensitive to the clinical status of children with chronic kidney disease in this multi-center cross sectional study. We demonstrated that a number of important clinical characteristics including recent history of hospitalization and edema affected patient perceptions of depression, anxiety, pain interference, fatigue and mobility. The PROMIS instruments provide a potentially valuable tool to study the impact of chronic kidney disease. Additional studies will be required to assess responsiveness in PROMIS score with changes in disease status over time.

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Section: Discussionmentioning

confidence: 84%

Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease: a Midwest Pediatric Nephrology Consortium study

et al. 2014

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“…A growing number of studies have assessed the impact of RRT on the lives of children with ESRD [9, 10, 12, 13, 15, 17, 18, 29–34]. These children have to face several challenges, including frequent hospitalization, painful medical procedures, school absence, and restriction of activities.…”

Section: Hrqol In Children With Esrdmentioning

confidence: 99%

“…As expected, the most important medical determinants associated with impaired HRQoL in the pediatric ESRD population are being on dialysis and the existence of comorbidities, such as cardiovascular diseases, underlying syndromes, urological malformations, endocrinologic disorders, and gastrointestinal diseases [8, 10, 11, 29, 37]. Due to small number of patients, most studies could not draw any conclusion about the impact of individual comorbidities.…”

Section: Important Determinants Of Hrqol and Proposed Interventionsmentioning

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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“…An ESRD-specific health-related HRQOL instrument, including Pediatric Nephrology DOI 10.1007/978-3-642-27843-3_62-1 # Springer-Verlag Berlin Heidelberg 2015 age-based forms to be completed by the patients and their caregivers, has been developed and validated [118]. Published data support the feasibility, reliability, and validity of the 34-item PedsQL 3.0 ESRD module to identify ESRD-and treatment modality-specific challenges that impact ESRD pediatric patient HRQOL [119,209]. Such instruments should allow to further improve not only the technical and medical part of PD treatment but the overall life quality in this delicate patient group of children requiring ESRD therapy for their entire life.…”

Section: Health-related Quality Of Life Of Children On Peritoneal Diamentioning

confidence: 93%

Peritoneal Dialysis in Children

Patel

Kv³

et al. 2015

Pediatric Nephrology

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In children with chronic kidney disease stage 5D peritoneal dialysis (PD) remains the dialysis modality most commonly prescribed, especially as automated PD. Nowadays it can be started from the first days of life on, and applied even to some preterm babies. This chapter gives an overview on PD membrane ultrastructure and function, on technical prerequistes of PD, on optimal PD prescription and on specific treatment targets and tools to monitor efficacy. It describes PD related infectious and noninfectious complications, long term peritoneal and systemic sequelae and current state of the art of how these can be mitigated or even be prevented.

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Quality of life in children with end-stage renal disease based on a PedsQL ESRD module

Abstract: The PedsQL 3.0 ESRD module may be useful as an ESRD-specific instrument to evaluate HRQOL in children; however, a larger, longitudinal prospective study is warranted.

Cited by 64 publications

References 22 publications

Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease: a Midwest Pediatric Nephrology Consortium study

Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease: a Midwest Pediatric Nephrology Consortium study

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

Peritoneal Dialysis in Children

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