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Pediatric end stage renal disease health-related quality of life differs by modality: a PedsQL ESRD analysis

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Abstract

We previously validated the 34-item PedsQL 3.0 End Stage Renal Disease (ESRD) Module designed to measure pediatric ESRD-specific health-related quality of life (HRQOL) in children and adolescents receiving maintenance dialysis or with a renal transplant. The study reported here was undertaken to assess for potential HRQOL differences between ESRD modality in children with ESRD and their parents using the PedsQL 3.0 ESRD Module. Parents of patients with a renal transplant reported a significantly higher HRQOL for their children than parents of pediatric patients receiving dialysis on all ESRD Module Scales except the Perceived Physical Appearance Scale, with the majority of the effect sizes in the medium range. Pediatric renal transplant patients self-reported comparable HRQOL to pediatric patients receiving dialysis across the ESRD Module Scales, with the exception of the Family and Peer Interaction Scale, in which pediatric renal transplant patients self-reported significantly higher HRQOL than pediatric patients receiving dialysis. Our cross-sectional data suggest that parents of children with ESRD observe a positive impact from renal transplantation on the majority of HRQOL domains compared to dialysis, whereas children self-report generally non-significant small effect size differences in favor of renal transplantation. These findings suggest that the PedsQL ESRD 3.0 Module may be used to identify ESRD- and modality-specific challenges that impact pediatric patient HRQOL.

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Acknowledgments

This work was supported (SLG, NMR and JWV) by the Franklin McDonald/Fresenius Medical Care Young Investigator Grant from the National Kidney Foundation. Competing Interests: Dr. Varni holds the copyright and the trademark for the PedsQL and receives financial compensation from the Mapi Research Trust, which is a nonprofit research institute that charges distribution fees to for-profit companies that use the Pediatric Quality of Life Inventory.

Author information

Authors and Affiliations

  1. Texas Children’s Hospital, Baylor College of Medicine, 52 6621 Fannin Street, MC 3-2482, Houston, TX, 77030, USA

    Stuart L. Goldstein

  2. Texas Children’s Hospital, Houston, TX, USA

    Nicole M. Rosburg

  3. Children’s Mercy Hospital and Clinics, Kansas City, MO, USA

    Bradley A. Warady

  4. Children’s Medical Center, Dallas, Dallas, TX, USA

    Mouin Seikaly

  5. Children’s Hospital and Regional Medical Center, Seattle, WA, USA

    Ruth McDonald

  6. Texas A&M University, College Station, TX, USA

    Christine Limbers & James W. Varni

Authors
  1. Stuart L. Goldstein
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  2. Nicole M. Rosburg
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  3. Bradley A. Warady
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  4. Mouin Seikaly
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  5. Ruth McDonald
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  6. Christine Limbers
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  7. James W. Varni
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Corresponding author

Correspondence to Stuart L. Goldstein.

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Appendices

Appendix 1:

PedsQL 3.0 ESRD Module child self-report item content

General fatigue

  1. 1.

    I feel tired

  2. 2.

    I feel physically weak (not strong)

  3. 3.

    I feel too tired to do things that I like to do

  4. 4.

    I feel too tired to spend time with my friends

About my kidney disease

  1. 1.

    I get swelling in my face

  2. 2.

    I feel dizzy

  3. 3.

    I get headaches

  4. 4.

    I get thirsty

  5. 5.

    I get muscle cramps

Treatment problems

  1. 1.

    It is hard for me to remember to take my medicines

  2. 2.

    I don’t like how I feel after I take my medications

  3. 3.

    It is hard for me to drink the amount of fluid I’m supposed to

  4. 4.

    I get upset when I cannot eat foods that I want to eat

Family and peer interaction

  1. 1.

    It is difficult for me when other people don’t understand about my illness

  2. 2.

    I can’t do things with my family because of my treatment

  3. 3.

    I feel left out of activities with my friends because of my treatment

Worry

  1. 1.

    I worry about whether or not my medical treatments are working

  2. 2.

    I worry about having surgery

  3. 3.

    I worry that I will be sick for a long time

  4. 4.

    I worry that I will have to stay in the hospital

  5. 5.

    I worry about my blood pressure

  6. 6.

    I worry that I will get sick if I don’t take my medicines

  7. 7.

    I worry about my weight

  8. 8.

    I worry about getting infections

  9. 9.

    I worry about having needle sticks (i.e. injections, blood tests, IVs)

  10. 10.

    I worry about the results of my blood tests

Perceived physical appearance

  1. 1.

    I don’t like other people to see my scars

  2. 2.

    I don’t look as old as other kids my age

  3. 3.

    I am embarrassed that my medicines will change the way I look

Communication

  1. 1.

    It is hard for me to tell the doctors and nurses how I feel

  2. 2.

    It is hard for me to ask the doctors and nurses questions

  3. 3.

    It is hard for me to tell other people at the hospital (i.e. child life, dietician, social worker) how I feel

  4. 4.

    It is hard for me to explain my illness to other people

  5. 5.

    It is hard for me to tell my parents how I feel

Note: To increase the ease of use for the young child self-report (ages 5–7 years), the items above are presented as questions rather than statements. Reproduced with permission from J.W. Varni, Ph.D. Copyright 1998. The PedsQL™ is available at https://doi.org/www.pedsql.org.

Appendix 2:

PedsQL 3.0 ESRD Module parent proxy–report item content

General fatigue

  1. 1.

    Feeling tired

  2. 2.

    Feeling physically weak (not strong)

  3. 3.

    Feeling too tired to do things that he/she likes to do

  4. 4.

    Feeling too tired to spend time with his/her friendsa

About my kidney disease

  1. 1.

    Swelling in his/her face

  2. 2.

    Feeling dizzya

  3. 3.

    Getting headaches

  4. 4.

    Getting thirsty

  5. 5.

    Getting muscle cramps

Treatment problems

  1. 1.

    Difficulty remembering to take his/her medicinesa

  2. 2.

    Not liking how he/she feels after taking his/her medications

  3. 3.

    Difficulty drinking the amount of fluid he/she is supposed to

  4. 4.

    Getting upset when he/she cannot eat foods that he/she wants to eat

Family and peer interaction

  1. 1.

    Difficulty when other people don’t understand about his/her illnessa

  2. 2.

    Not being able to do things with his/her family because of his/her treatmenta

  3. 3.

    Feeling left out of activities with his/her friends because of his/her treatmenta

Worry

  1. 1.

    Worrying about whether or not his/her medical treatments are workinga

  2. 2.

    Worrying about having surgery

  3. 3.

    Worrying that he/she will be sick for a long timea

  4. 4.

    Worrying that he/she will have to stay in the hospital

  5. 5.

    Worrying about his/her blood pressurea

  6. 6.

    Worrying that he/she will get sick if he/she doesn’t take his/her medicinesa

  7. 7.

    Worrying about his/her weighta

  8. 8.

    Worrying about getting infectionsa

  9. 9.

    Worrying about having needle sticks (i.e. injections, blood tests, IVs)

  10. 10.

    Worrying about the results of his/her blood testsa

Perceived physical appearance

  1. 1.

    Not liking other people to see his/her scarsa

  2. 2.

    Not looking as old as other kids his/her agea

  3. 3.

    Being embarrassed that his/her medicines will change the way he/she looksa

Communication

  1. 1.

    Difficulty telling the doctors and nurses how he/she feelsa

  2. 2.

    Difficulty asking the doctors and nurses questionsa

  3. 3.

    Difficulty telling other people at the hospital (i.e. child life, dietician, social worker) how he/she feelsa

  4. 4.

    Difficulty explaining his/her illness to other peoplea

  5. 5.

    Difficulty telling his/her parents how he/she feelsa

aItems not included on parent of toddler (ages 2–4 years) module. Reproduced with permission from J.W. Varni, Ph.D. Copyright 1998. The PedsQL is available at https://doi.org/www.pedsql.org.

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Goldstein, S.L., Rosburg, N.M., Warady, B.A. et al. Pediatric end stage renal disease health-related quality of life differs by modality: a PedsQL ESRD analysis. Pediatr Nephrol 24, 1553–1560 (2009). https://doi.org/10.1007/s00467-009-1174-1

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  • DOI: https://doi.org/10.1007/s00467-009-1174-1

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