Application of the PedsQL 4.0 questionnaire in assessing the quality of life of children with defecation disorders after surgical treatment of congenital malformations

Cover Page

Cite item

Full Text

Abstract

BACKGROUND: : Fecal incontinence significantly affects the quality of life of children with anorectal malformations, Hirschsprung’s disease, and spinal pathologies.

AIM: This work uses the PedsQL 4.0 questionnaire to assess the quality of life of children with defecation disorders after surgical treatment of congenital malformations and evaluate its effectiveness.

MATERIALS AND METHODS: Interviews were conducted with 20 families in which children aged from 17 months to 18 years were operated on for spinal hernia (50%), anorectal defects (35%), and Hirschsprung disease (15%). Parents and patients were interviewed according to four blocks of the questionnaire: “The impact of pathology on the family”, “Assessment of the quality of medical care”, “Assessment of the quality of life of a child (for parents)”, “Assessment of the quality of life of a child (for children)”. The maximum score for each questionnaire was 100 points. The reliability assessment was performed using the α-survey of the Cronbach coefficient.

RESULTS: When evaluating the PedsQL 4.0 questionnaire, α-Cronbach’s coefficient for the “Impact of pathology on the family” block was 0.963, “Assessment of the quality of medical care” — 0.924, “Assessment of the quality of life of a child” from 0.740 to 0.877. A reliability result of >0.7 is considered satisfactory. Thus, the PedsQL 4.0 questionnaire was considered reliable for this study. When analyzing the block, “Influence of pathology on the family”, data from 23.6 to 67.4 points were obtained. A relationship was noted between the growing up of the child and an increase in the level of quality of life (p < 0.05). According to the block, “Assessment of the quality of medical care”, the dissatisfaction of most parents was established. The average score was 75 points. When analyzing the block, “Assessment of the quality of life of children (questionnaire for parents)”, values were obtained from 66.4 to 74.2 points. With the increase in the age of the child, parents estimated his standard of living to be lower. An inverse correlation was found between the child’s age and his standard of living from the parent’s point of view (p < 0.05). When analyzing the block, “Assessment of the quality of life of children” (questionnaire for children), the opposite situation was observed: with age, children rated the standard of living higher. The result ranged from 59.5 to 90 points.

CONCLUSIONS: In children with anorectal defects, Hirschsprung’s disease, and spinal pathologies, a significant decrease in the standard of living was revealed, including a significant negative impact of the disease on the standard of living of the entire child’s family. Further research is needed to determine the leading causes that reduce the quality of life of children to develop an integrated approach to their rehabilitation and social adaptation.

About the authors

Grigoriy A. Korolev

I.M. Sechenov First Moscow State Medical University (Sechenov University)

Author for correspondence.
Email: KorolevG.a@yandex.ru
ORCID iD: 0000-0001-5730-3684
SPIN-code: 4315-0941

resident, L.P. Aleksanrov Department of Pediatric Surgery and Urology andrology

Russian Federation, Moscow

Evgeniya S. Pimenova

I.M. Sechenov First Moscow State Medical University (Sechenov University); G.N. Speransky Children’s Hospital No. 9

Email: evgeniyapimenova@list.ru
ORCID iD: 0000-0001-7206-5987
SPIN-code: 8694-6555

MD, Cand. Sci. (Med.), Associate Professor of the L.P. Aleksanrov Department of Pediatric Surgery and Urology-andrology, Pediatric Surgeon

Russian Federation, Moscow; Moscow

Dmitriy A. Morozov

I.M. Sechenov First Moscow State Medical University (Sechenov University); G.N. Speransky Children’s Hospital No. 9; Veltishchev Scientific Research Clinical Institute of Pediatrics and Pediatric Surgery, Pirogov Russian National Research Medical University

Email: damorozov@list.ru
ORCID iD: 0000-0002-1940-1395
SPIN-code: 8779-8960

MD, Professor, Head of the L.P. Aleksanrov Department of Pediatric Surgery and Urology-andrology, Director of the Yu.E. Veltischev Scientific Research Clinical Institute of Pediatrics, Pediatric Surgeon

Russian Federation, Moscow; Moscow; Moscow

References

  1. Freeman KA, Riley A, Duke DC, Fu R. Systematic review and meta-analysis of behavioral interventions for fecal incontinence with constipation. J Pediatr Psychol. 2014;39(8):887–902. doi: 10.1093/jpepsy/jsu039
  2. Rigueros Springford L, Connor MJ, Jones K, et al. Prevalence of Active Long-term Problems in Patients with Anorectal Malformations: A Systematic Review. Dis Colon Rectum. 2016;59(6):570–580. doi: 10.1097/DCR.0000000000000576
  3. Zimmer J, Tomuschat C, Puri P. Long-term results of transanal pull-through for Hirschsprung’s disease: a meta-analysis. Pediatr Surg Int. 2016;32(8):743–749. doi: 10.1007/s00383-016-3908-z
  4. Spina Bifida Association [Internet]. Guidelines for the care of people with spina bifida 2018 [cited: 10 Feb 2018]. Available from: https://www.spinabifidaassociation.org/guidelines
  5. Dai Y, Deng Y, Lin Y, et al. Long-term outcomes and quality of life of patients with Hirschsprung disease: a systematic review and meta-analysis. BMC Gastroenterol. 2020;20(1):67. doi: 10.1186/s12876-020-01208-z
  6. Feng X, Lacher M, Quitmann J, et al. Health-Related Quality of Life and Psychosocial Morbidity in Anorectal Malformation and Hirschsprung’s Disease. Eur J Pediatr Surg. 2020;30(3):279–286. doi: 10.1055/s-0040-1713597
  7. Sawin KJ, Bellin MH. Quality of life in individuals with spina bifida: a research update. Dev Disabil Res Rev. 2010;16(1):47–59. doi: 10.1002/ddrr.96
  8. Kim LA, Fedorov AK, Panin AP. Tactics of complex treatment of children who have been repeatedly operated concerning developmental anomalies of the colon and anorectal area. Surgical practice. 2012;(4):4–11. (In Russ.)
  9. Varni JW, Thompson KL, Hanson V. The Varni/Thompson Pediatric Pain Questionnaire. I. Chronic musculoskeletal pain in juvenile rheumatoid arthritis. Pain. 1987;28(1):27–38. doi: 10.1016/0304-3959(87)91056-6
  10. Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care. 2001;39(8):800–812. doi: 10.1097/00005650-200108000-00006
  11. Denisova RV, Alexeeva EI, Al’bitsky VYu, et al. Reliability, validity and sensitivity of Russian versions of PedsQL Generic Core Scale and PedsQL Rheumatology Module. Current Pediatrics. 2009;8(1):30–40. (In Russ.) doi: 10.1016/j.jpedsurg.2005.11.006
  12. Morris J, Perez D, McNoe B. The use of quality of life data in clinical practice. Qual Life Res. 1998;7(1):85–91. doi: 10.1023/a:1008893007068
  13. Goyal A, Williams JM, Kenny SE, et al. Functional outcome and quality of life in anorectal malformations. J Pediatr Surg. 2006;41(2):318–322. doi: 10.1016/j.jpedsurg.2005.11.006
  14. Collins L, Collis B, Trajanovska M, et al. Quality of life outcomes in children with Hirschsprung disease. J Pediatr Surg. 2017;52(12):2006–2010. doi: 10.1016/j.jpedsurg.2017.08.043
  15. Sudki NM, Axelsson АB, Imam A, Wigert H. Self-perceived health among children with spina bifida in the West Bank: a cross-sectional study. Lancet. 2021;398(1):S39. doi: 10.1016/S0140-6736(21)01525-7
  16. Wigander H, Nisell M, Frenckner B, et al. Quality of life and functional outcome in Swedish children with low anorectal malformations: a follow-up study. Pediatr Surg Int. 2019;35(5):583–590. doi: 10.1007/s00383-018-04431-8
  17. Hartman EE, Oort FJ, Aronson DC, et al. Children with Anorectal Malformations, Hirschsprung Disease, and Their Siblings: Proxy Reports and Self-Reports. J Pediatr Gastroenterol Nutr. 2015;61(6):630–635. doi: 10.1097/MPG.0000000000000855
  18. Ridosh MM, Sawin KJ, Roux G, Brei TJ. Quality of Life in Adolescents and Young Adults with and Without Spina Bifida: An Exploratory Analysis. J Pediatr Nurs. 2019;49:10–17. doi: 10.1016/j.pedn.2019.08.004
  19. Khalil M. Long-term health-related quality of life for patients with Hirschsprung’s disease at 5 years after transanal endorectal pull-through operation. Qual Life Res. 2015;24(11):2733–2738. doi: 10.1007/s11136-015-1012-9
  20. Bazo M, Bailez M. Health-related quality of life in children and adolescents undergoing surgery for Hirschsprung’s disease and anorectal malformations. Arch Argent Pediatr. 2013;111(1):37–44. doi: 10.5546/aap.2013.37

Supplementary files

Supplementary Files
Action
1. JATS XML
Download
2. Fig. 1. Study design

Download (238KB)
Indexing metadata

This website uses cookies

You consent to our cookies if you continue to use our website.

About Cookies