children with chronic kidney disease (CKD

PICO Question: In Polish children with chronic kidney disease (CKD) between (2-18) years old patients
(P), what is the effect of treatment modalities and selected social life elements (I) on Health-related
quality of life (HRQoL) in children and their caregivers (O) compared to population norms(C)?

Note: PedsQL 4.0 Generic Core Scales is a scale used to measure HRQoL in children that includes
(Physical, emotional, social, school/nursery school) elements.
Table 1: Included Studies
Author, Year, Title, and Source Design and General Quality Sample Size and Participants
Interventions Outcomes
Pstrusin ́ska, K., Medyn ́ska, A., Chmielewska, I., Grenda, R., Jo ́z ́wiak, A. K., Leszczyn ́ska, B., &
Niedomagała, J. Olszak-Szot, I., Miklaszewska, M., Szczepan ́ska, M., Tkaczyk, M., Urzykowska, A.,
Wasilewska, A., Zachwieja, K., Zajaczkowska, M., Zio ́łkowska, H., Zagozdzon, I., & Zwolin ́ska, D.
(2013). Perception of health-related quality of life in children with chronic kidney disease by the
patients and their caregivers: Multicentre national study results. Quality of Life Research, 22(10),
2889–2897. Retrieved from DOI 10.1007/s11136-013-0416-7
This study is a descriptive cross-sectional national study to evaluate and analyze the HRQoL
for CKD polishes children in different treatment modalities, CKD stages, and selected social life
elements. In addition, it assessed the potential differences between self or parent reports and the
influencing factors. It was done in 11 pediatric nephrology centers between September and December
2011.
In this study, authors used PedsQL 4.0 Generic Core Scales to assess HRQoL, which was proven as a
reliable and valid scale among different spectrum of chronic pediatric diseases in different nations.
The 23-items version was used for children (5-18) years old and for their parents, the 21-items version
was used for parents of (2-4) years old (Varni, 1998).
The authors used (Varni et al., 2002) study for normal healthy children as a comparative tool, which
was based on a large number of international studied subjects.
Results of the caregiver and second caregiver were analyzed separately; missing or incomplete tests
were discarded.
Compare to other related studies, this study’s sample is relatively large, but it is specific to the
Polish population that may not be a representative population. However, the authors believe that this
study can contribute to important data related to the consequences of CKD even if it is not
generalizable.
The limitation of this study
• Not generalizable
• Various number of subjects in the individual group of studied children limits the statistical
analysis
• Some of the parents are not the primary care givers
• Since this is a cross-sectional study, there is no conclusion regarding the causality of the
relationship found
• Lack of somatic and related factors to families’ socioeconomic status
• Small number of HD children The participants of this study were 203 CKD patients on (PD,
HD, or CT), and 388 (196 women, and 192 men) parents from 11 pediatric nephrology centers out of 12 in
Poland. The study was conducted among patients with CKD and their caregivers. Inclusion criteria
• Over 2 years of age
• Stage II of CKD or higher as per Kidney Disease Outcomes Quality Initiative (KDOQI) and based
estimated (eGFR)(KDOQI, 2002)
• CKD diagnosis within 3 months from the beginning of the study
• Informed consent
Exclusion criteria
• History of sever mental retardation
• Renal or other solid organ transplantation
• Cancer
• Hospitalization within 14 days (except for HD or PD tretment)
• Initiation of or change of dialysis modalities within 30 days
• Significant life event unrelated to the CKD within 30 days
Patients were categorized in 3 groups
1. Conservative treatment (CD)
2. Hemodialysis (HD)
3. Peritoneal dialysis (PD)
Patients (5-18) years reports for themselves and (2-18) reported by parents.
In this study, authors used PedsQL 4.0 Generic Core Scales to assess HRQoL, to evaluate the
impact of CKD on the functional health status of children, and how to support CKD patients and their
families to improve their HRQoL.
The first part of the study focused on medical charts review to obtain Primary diagnosis, duration of
illness, time of nephrology care, additional non-renal comorbidities, place of living, distance from
nephrology care centers, and family history.
School age and their parents were interviewed about schooling level and special education requirements.
Parents reports included age, education, job type, main and second caregiver, and family structure.
The second part assessed the child and parents reports of the child’s HRQoL using PedsQL 4.0 Generic
Core Scale based on the general protocol and guidelines. For patients (8-18) years old and their
parents’, items were rated on a 5-points scale to indicate the problems those children faces in many
areas of functioning. Younger children were rated with a 3-points simpler scale. Score (0-100) was
calculated to with higher score demonstrating higher HRQoL. Main caregivers and parents scores were
analysed separately.
The means of PedsQL from the 3 groups were compared to healthy children’s sample reported by Varni et
al. (2003). This study reveled that 30% of CKD school age children were tutored. Patients on PD
55.2% of them were tutored at home, versus 66.7% of HD patients, and 17.4% of CT patients.
Statistical difference in learning methods of (p=0.01) was found between CT patients and HD/PD
patients.
HRQoL scores for all CKD patient were lower in all areas compared to healthy children (Varni et al,.
2002).
CKD patient on HD/PD scored less in physical and social functioning compare to CT patients.
No differences identified among all group related to their perception of emotional and school
functioning.
There was no significant relationship between HRQoL scores and CKD duration, age of patients, primary
kidney disease, time of nephrology care, size of the residence, distance from nephrology center, type
of education, parent’s educational level, and employment.
Children with two-parents families scored higher compared to children from single-parent families.
Parents of CT patient rated higher HRQoL score compared to HD/PD patient’s parent.
Main caregiver’s perception did not differ based on CKD stage, however, second caregiver rated
emotional functioning much higher in early stages (2&3) than in later stages (4&5)
Table 2. Rating of Evidence and Summary of Findings
Author, Year, Title, and Source Level of
Evidence Findings (BRIEF)
Pstrusin ́ska, K., Medyn ́ska, A., Chmielewska, I., Grenda, R., Jo ́z ́wiak, A. K., Leszczyn ́ska, B., &
Niedomagała, J. Olszak-Szot, I., Miklaszewska, M., Szczepan ́ska, M., Tkaczyk, M., Urzykowska, A.,
Wasilewska, A., Zachwieja, K., Zajaczkowska, M., Zio ́łkowska, H., Zagozdzon, I., & Zwolin ́ska, D.
(2013). Perception of health-related quality of life in children with chronic kidney disease by the
patients and their caregivers: Multicentre national study results. Quality of Life Research, 22(10),
2889–2897. Retrieved from DOI 10.1007/s11136-013-0416-7

4 HRQoL scores for all groups were low in all domains compared to Varni et al. (2003)
population norms. Patient on CT, HRQoL’s score were not affected by the CKD stage. Parents evaluated
HRQoL differently than their children based on their care involvement. Since children on HD scored the
lowest HRQoL score, they require special support and attention. The poor evaluation of HRQoL by parents
compared to their children indicates a potential conflict in later years. The lack of significant
differences in the perception of emotional functioning based on CKD stage signifies the effect of this
disease in the child’s mental statues, and the importance of early psychological intervention
immediately after CKD diagnosis.
Multi national researches should be conducted to develop better interventions to improve HRQoL in CKD
children.
References
K/DOQI clinical practice guidelines for chronic kidney disease: Evaluation, classification, and
stratification. (2002). American Journal of Kidney Diseases : the official journal of the National
Kidney Foundation, 39, suppl.1.
Varni, J. W., Burwinkle, T. M., & Katz, E. R. (2003). The PedsQL 4.0 as a pediatric population health
measure: Feasibility, reliability, and validity. Ambulatory Pediatrics : The official journal of the
Ambulatory Pediatric Association, 3, 329–341.

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