Skip to main content

Advertisement

SpringerLink
Log in

Health-related quality of life in pediatric ulcerative colitis patients on conventional medical treatment compared to those after restorative proctocolectomy

  • Original Article
  • Published:
International Journal of Colorectal Disease Aims and scope Submit manuscript

Abstract

Purpose

Health-related quality of life (HRQL) is not well studied in proctocolectomy patients with pediatric onset of ulcerative colitis (UC). We aimed to (1) compare the HRQL of proctocolectomy patients with those treated with conventional therapy and (2) determine factors that influence HRQL in UC patients < 18 years.

Methods

Chart review was done on patients diagnosed with pediatric onset of UC (<18) at the Stollery Children’s Hospital. HRQL was evaluated in 88 patients using disease- and age-specific questionnaires; IMPACT III (<18) and Inflammatory Bowel Disease Questionnaire (IBDQ; ≥18). Demographics, disease characteristics, disease index (PUCAI), HRQL EuroQoL visual analog scale (EQ-5D/VAS) were collected and analyzed from all patients.

Results

Sixty-five respondents completed the IMPACT III (74 %) and 23 patients completed the IBDQ (26 %). Thirty-three surgical patients (34 %) responded (mean IMPACT III score = 148.9 ± 12.7; mean IBDQ = 171.2 ± 40.1). There was no significant difference in IMPACT III scores of surgical patients vs. medically treated patients (148.9 ± 12.7 vs. 140.6 ± 19.4, p = 0.09). Patients with high IMPACT scores (>143 points) were most likely to be in remission (p = 0.05), they were less likely to be on medication (p < 0.05), have parent/guardian with postsecondary education (p = 0.01), did not suffer from fatigue (p < 0.01), and did not report depression (p < 0.02). The IMPACT correlation with PUCAI (adjusted r 2 = 0.33) and EQ-VAS (adjusted r 2 = 0.45) was strong.

Conclusions

Surgical patients reported to have a HRQL comparable to or better than the nonsurgical patients. Depression, fatigue, parent/guardian education, and drugs influence HRQL.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

Abbreviations

Doctor’s GA:

Doctor’s global assessment

EQ-5DTM :

EuroQol-5 Dimensions

EQ-5DTM VAS:

EuroQol visual analog scale

HRQL:

Health-related quality of life

IBDQ:

Inflammatory bowel disease questionnaire

PUCAI:

Pediatric ulcerative colitis activity index

UC:

Ulcerative colitis

References

  1. Hjortswang H, Strom M, Almer S (1998) Health-related quality of life in Swedish patients with ulcerative colitis. Am J Gastroenterol 93(11):2203–2211

    Article  PubMed  CAS  Google Scholar 

  2. Scarpa M, Angriman I, Ruffolo C, Ferronato A, Polese L, Barollo M, Martin A, Sturniolo GC, D’Amico DF (2004) Health-related quality of life after restorative proctocolectomy for ulcerative colitis: long-term results. World J Surg 28(2):124–129

    Article  PubMed  Google Scholar 

  3. Van Assche G, Vermeire S, Rutgeerts P (2011) Management of acute severe ulcerative colitis. Gut 60(1):130–133

    Article  PubMed  Google Scholar 

  4. Aratari A, Papi C, Clemente V, Moretti A, Luchetti R, Koch M, Capurso L, Caprilli R (2008) Colectomy rate in acute severe ulcerative colitis in the infliximab era. Dig Liver Dis 40(10):821–826

    Article  PubMed  CAS  Google Scholar 

  5. Bach SP, Mortensen NJ (2006) Revolution and evolution: 30 years of ileoanal pouch surgery. Inflamm Bowel Dis 12(2):131–145

    Article  PubMed  Google Scholar 

  6. Manosa M, Lopez San Roman A, Garcia-Planella E, Bastida G, Hinojosa J, Gonzalez-Lama Y, Masnou H, Domenech E (2009) Infliximab rescue therapy after cyclosporin failure in steroid-refractory ulcerative colitis. Digestion 80(1):30–35

    Article  PubMed  CAS  Google Scholar 

  7. Gower-Rousseau C, Dauchet L, Vernier-Massouille G, Tilloy E, Brazier F, Merle V, Dupas JL, Savoye G, Balde M, Marti R, Lerebours E, Cortot A, Salomez JL, Turck D, Colombel JF (2009) The natural history of pediatric ulcerative colitis: a population-based cohort study. Am J Gastroenterol 104(8):2080–2088

    Article  PubMed  Google Scholar 

  8. Hyams JS, Davis P, Grancher K, Lerer T, Justinich CJ, Markowitz J (1996) Clinical outcome of ulcerative colitis in children. J Pediatr 129(1):81–88

    Article  PubMed  CAS  Google Scholar 

  9. Patton D, Gupta N, Wojcicki JM, Garnett EA, Nobuhara K, Heyman MB (2010) Postoperative outcome of colectomy for pediatric patients with ulcerative colitis. J Pediatr Gastroenterol Nutr 51(2):151–154

    Article  PubMed  Google Scholar 

  10. Randall J, Singh B, Warren BF, Travis SP, Mortensen NJ, George BD (2010) Delayed surgery for acute severe colitis is associated with increased risk of postoperative complications. Br J Surg 97(3):404–409

    Article  PubMed  CAS  Google Scholar 

  11. Thirlby RC, Sobrino MA, Randall JB (2001) The long-term benefit of surgery on health-related quality of life in patients with inflammatory bowel disease. Arch Surg 136(5):521–527

    Article  PubMed  CAS  Google Scholar 

  12. Pakarinen MP, Natunen J, Ashorn M, Koivusalo A, Turunen P, Rintala RJ, Kolho KL (2009) Long-term outcomes of restorative proctocolectomy in children with ulcerative colitis. Pediatrics 123(5):1377–1382

    Article  PubMed  Google Scholar 

  13. Fazio VW, O’Riordain MG, Lavery IC, Church JM, Lau P, Strong SA, Hull T (1999) Long-term functional outcome and quality of life after stapled restorative proctocolectomy. Ann Surg 230(4):575–584, discussion 584–576

    Article  PubMed  CAS  Google Scholar 

  14. Romanos J, Stebbing JF, Mortensen NJ, Kettlewell MG (1996) Restorative proctocolectomy in children and adolescents. J Pediatr Surg 31(12):1655–1658

    Article  PubMed  CAS  Google Scholar 

  15. Otley A, Smith C, Nicholas D, Munk M, Avolio J, Sherman PM, Griffiths AM (2002) The IMPACT questionnaire: a valid measure of health-related quality of life in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr 35(4):557–563

    Article  PubMed  Google Scholar 

  16. Otley A, Xu S, Yan S, Olson A, Liu G, Griffiths AM, Group atRS (2008) IMPACT-III Is a valid, reliable and responsive measure of health-related quality of life in pediatric Crohn’s disease. Paper presented at the First International Symposium on Pediatric IBD, November 2006

  17. Mamula P, Markowitz JE, Baldassano RN, Otley A (2008) Measurement of quality of life in pediatric inflammatory bowel disease. In: Pediatric inflammatory bowel disease. Springer: New York. pp 565–580

  18. Irvine EJ, Feagan B, Rochon J, Archambault A, Fedorak RN, Groll A, Kinnear D, Saibil F, McDonald JW (1994) Quality of life: a valid and reliable measure of therapeutic efficacy in the treatment of inflammatory bowel disease. Canadian Crohn’s Relapse Prevention Trial Study Group. Gastroenterology 106(2):287–296

    PubMed  CAS  Google Scholar 

  19. Guyatt G, Mitchell A, Irvine EJ, Singer J, Williams N, Goodacre R, Tompkins C, Williams N, Wagner F (1989) A new measure of health status for clinical trials in inflammatory bowel disease. Gastroenterology 96(3):804–810

    Google Scholar 

  20. Pallis AG, Vlachonikolis IG, Mouzas IA (2002) Assessing health-related quality of life in patients with inflammatory bowel disease, in Crete, Greece. BMC Gastroenterol 2:1

    Article  PubMed  Google Scholar 

  21. Feagan BG, Reinisch W, Rutgeerts P, Sandborn WJ, Yan S, Eisenberg D, Bala M, Johanns J, Olson A, Hanauer SB (2007) The effects of infliximab therapy on health-related quality of life in ulcerative colitis patients. Am J Gastroenterol 102(4):794–802

    Article  PubMed  CAS  Google Scholar 

  22. Karlbom U, Raab Y, Ejerblad S, Graf W, Thorn M, Pahlman L (2000) Factors influencing the functional outcome of restorative proctocolectomy in ulcerative colitis. Br J Surg 87(10):1401–1408

    Article  PubMed  CAS  Google Scholar 

  23. Karwowski CA, Keljo D, Szigethy E (2009) Strategies to improve quality of life in adolescents with inflammatory bowel disease. Inflamm Bowel Dis 15(11):1755–1764

    Article  PubMed  Google Scholar 

  24. Minderhoud IM, Oldenburg B, van Dam PS, van Berge Henegouwen GP (2003) High prevalence of fatigue in quiescent inflammatory bowel disease is not related to adrenocortical insufficiency. Am J Gastroenterol 98(5):1088–1093

    Article  PubMed  CAS  Google Scholar 

  25. Marcus SB, Strople JA, Neighbors K, Weissberg-Benchell J, Nelson SP, Limbers C, Varni JW, Alonso EM (2009) Fatigue and health-related quality of life in pediatric inflammatory bowel disease. Clin Gastroenterol Hepatol 7(5):554–561

    Article  PubMed  Google Scholar 

  26. Levenstein S, Prantera C, Varvo V, Scribano ML, Andreoli A, Luzi C, Arca M, Berto E, Milite G, Marcheggiano A (2000) Stress and exacerbation in ulcerative colitis: a prospective study of patients enrolled in remission. Am J Gastroenterol 95(5):1213–1220

    Article  PubMed  CAS  Google Scholar 

  27. Kurina LM, Goldacre MJ, Yeates D, Gill LE (2001) Depression and anxiety in people with inflammatory bowel disease. J Epidemiol Community Health 55(10):716–720

    Article  PubMed  CAS  Google Scholar 

  28. Robertson DA, Ray J, Diamond I, Edwards JG (1989) Personality profile and affective state of patients with inflammatory bowel disease. Gut 30(5):623–626

    Article  PubMed  CAS  Google Scholar 

  29. Kitney L, Turner JM, Spady D, Malik B, El-Matary W, Persad R, Huynh HQ (2009) Predictors of medication adherence in pediatric inflammatory bowel disease patients at the Stollery Children’s Hospital. Can J Gastroenterol 23(12):811–815

    PubMed  CAS  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Division of Pediatric Gastroenterology and Nutrition, Stollery Children’s Hospital, University of Alberta, Edmonton, AB, Canada

    Bushra A. Malik & Kristen Gibbons

  2. Division of General Surgery, Stollery Children’s Hospital, University of Alberta, Edmonton, AB, Canada

    Gordon Lees

  3. Department of Pediatrics, Stollery Children’s Hospital, University of Alberta, Edmonton, AB, Canada

    Don Spady

  4. Division of Pediatric Gastroenterology and Nutrition, Dalhousie University, Halifax, NS, Canada

    Anthony Otley

  5. Division of Pediatric GI and Nutrition, Department of Paediatrics, Stollery Children’s Hospital/University of Alberta, Edmonton Clinic Health Academy (ECHA), 4-579-11405–87th Avenue, Edmonton, AB, Canada, T6G 1C9

    Hien Q. Huynh

Authors
  1. Bushra A. Malik
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Kristen Gibbons
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Don Spady
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Gordon Lees
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Anthony Otley
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Hien Q. Huynh
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Hien Q. Huynh.

Appendix

Appendix

Study highlights

What is current knowledge

• Chronic illness negatively impacts health-related quality of life

• Surgical patients score just as well or better than the nonsurgical patients

What is new here

• IMPACT III cutoff for remission score of 143 points is applicable to UC patients

• IBDQ cutoff for remission score of 170 points is valid

• PUCAI scores for restorative proctocolectomy patients are higher as a result of scoring higher on the severity of: stool consistency; stool frequency/24 h and nocturnal stools

• Total IBDQ and IMPACT scores correlate significantly well with PUCAI, EQ-5DTM VAS, Mayo and Doctor’s GA scores, p value ≤ 0.05

• Depression and fatigue lower quality of life and impact disease experience and response to treatment

Rights and permissions

Reprints and permissions

About this article

Cite this article

Malik, B.A., Gibbons, K., Spady, D. et al. Health-related quality of life in pediatric ulcerative colitis patients on conventional medical treatment compared to those after restorative proctocolectomy. Int J Colorectal Dis 28, 325–333 (2013). https://doi.org/10.1007/s00384-012-1561-0

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00384-012-1561-0

Keywords

Search

Navigation