Skip to main content
Top
Published in: Health and Quality of Life Outcomes 1/2020

01-12-2020 | Attention Deficit Hyperactivity Disorder | Research

Health-related quality of life and scar satisfaction in a cohort of children operated on for sacrococcygeal teratoma

Authors: Mette Hambraeus, Lars Hagander, Einar Arnbjörnsson, Anna Börjesson, Pernilla Stenström

Published in: Health and Quality of Life Outcomes | Issue 1/2020

Login to get access

Abstract

Aim

The aims of this study were to evaluate health-related quality of life (HRQoL) in children with sacrococcygeal teratoma and to explore the effect of the scar on physical, emotional and behavioral aspects.

Methods

A cohort of children operated on for sacrococcygeal teratoma between 2000 and 2013 at Lund University Hospital, Sweden, and their parents were interviewed. HRQoL was evaluated with PedsQL, and scar satisfaction was estimated through Patient Observer Scar Assessment Score (POSA).

Results

All eligible children (n = 17) were included (100% response rate). Median age was 7.3 years (range 3.5–16.0). Mean total PedsQL score was 92.3 (range 72.0 to 99.0). Patients with comorbidity scored lower (87.5) than those without (95.0) (p < 0.05). Pain during sitting down was reported by two (20%) patients, and itching was reported by another two patients (20%) aged > 8 years. No children reported that they avoided situations due to the scar, and most (80% of children and 90% of parents) reported absent or only mild negative emotions when considering the scar.

Conclusion

Children with sacrococcygeal teratoma had a good overall HRQoL, but comorbidity reduced the outcome. A few children reported scar-related impact on physical, behavioral and emotional aspects.
Literature
1.
go back to reference Altman RP, Randolph JG, Lilly JR. Sacrococcygeal teratoma: American Academy of Pediatrics surgical section Survey-1973. J Pediatr Surg. 1974;9(3):389–98.CrossRef Altman RP, Randolph JG, Lilly JR. Sacrococcygeal teratoma: American Academy of Pediatrics surgical section Survey-1973. J Pediatr Surg. 1974;9(3):389–98.CrossRef
2.
go back to reference Derikx JP, De Backer A, van de Schoot L, Aronson DC, de Langen ZJ, van den Hoonaard TL, et al. Long-term functional sequelae of sacrococcygeal teratoma: a national study in the Netherlands. J Pediatr Surg. 2007;42(6):1122–6.CrossRef Derikx JP, De Backer A, van de Schoot L, Aronson DC, de Langen ZJ, van den Hoonaard TL, et al. Long-term functional sequelae of sacrococcygeal teratoma: a national study in the Netherlands. J Pediatr Surg. 2007;42(6):1122–6.CrossRef
3.
go back to reference Forrester MB, Merz RD. Descriptive epidemiology of teratoma in infants, Hawaii, 1986-2001. Paediatr Perinat Epidemiol. 2006;20(1):54–8.CrossRef Forrester MB, Merz RD. Descriptive epidemiology of teratoma in infants, Hawaii, 1986-2001. Paediatr Perinat Epidemiol. 2006;20(1):54–8.CrossRef
4.
go back to reference Hambraeus M, Arnbjornsson E, Borjesson A, Salvesen K, Hagander L. Sacrococcygeal teratoma: a population-based study of incidence and prenatal prognostic factors. J Pediatr Surg. 2016;51(3):481–5.CrossRef Hambraeus M, Arnbjornsson E, Borjesson A, Salvesen K, Hagander L. Sacrococcygeal teratoma: a population-based study of incidence and prenatal prognostic factors. J Pediatr Surg. 2016;51(3):481–5.CrossRef
5.
go back to reference Pauniaho SL, Tatti O, Lahdenne P, Lindahl H, Pakarinen M, Rintala R, et al. Tumor markers AFP, CA 125, and CA 19-9 in the long-term follow-up of sacrococcygeal teratomas in infancy and childhood. Tumour Biol. 2010;31(4):261–5.CrossRef Pauniaho SL, Tatti O, Lahdenne P, Lindahl H, Pakarinen M, Rintala R, et al. Tumor markers AFP, CA 125, and CA 19-9 in the long-term follow-up of sacrococcygeal teratomas in infancy and childhood. Tumour Biol. 2010;31(4):261–5.CrossRef
6.
go back to reference Hambraeus M, Hagander L, Stenstrom P, Arnbjornsson E, Borjesson A. Long-term outcome of sacrococcygeal teratoma: a controlled cohort study of urinary tract and bowel dysfunction and predictors of poor outcome. J Pediatr. 2018;198:131–6. Hambraeus M, Hagander L, Stenstrom P, Arnbjornsson E, Borjesson A. Long-term outcome of sacrococcygeal teratoma: a controlled cohort study of urinary tract and bowel dysfunction and predictors of poor outcome. J Pediatr. 2018;198:131–6.
7.
go back to reference Kremer ME, Derikx JP, van Baren R, Heij HA, Wijnen MH, Wijnen RM, et al. Patient-reported defecation and micturition problems among adults treated for Sacrococcygeal Teratoma during childhood--the need for new surveillance strategies. Pediatr Blood Cancer. 2016;63(4):690–4.CrossRef Kremer ME, Derikx JP, van Baren R, Heij HA, Wijnen MH, Wijnen RM, et al. Patient-reported defecation and micturition problems among adults treated for Sacrococcygeal Teratoma during childhood--the need for new surveillance strategies. Pediatr Blood Cancer. 2016;63(4):690–4.CrossRef
8.
go back to reference Palermo TM, Long AC, Lewandowski AS, Drotar D, Quittner AL, Walker LS. Evidence-based assessment of health-related quality of life and functional impairment in pediatric psychology. J Pediatr Psychol. 2008;33(9):983–96 discussion 97-8.CrossRef Palermo TM, Long AC, Lewandowski AS, Drotar D, Quittner AL, Walker LS. Evidence-based assessment of health-related quality of life and functional impairment in pediatric psychology. J Pediatr Psychol. 2008;33(9):983–96 discussion 97-8.CrossRef
9.
go back to reference Bongers ME, van Dijk M, Benninga MA, Grootenhuis MA. Health related quality of life in children with constipation-associated fecal incontinence. J Pediatr. 2009;154(5):749–53.CrossRef Bongers ME, van Dijk M, Benninga MA, Grootenhuis MA. Health related quality of life in children with constipation-associated fecal incontinence. J Pediatr. 2009;154(5):749–53.CrossRef
10.
go back to reference Deshpande AV, Craig JC, Smith GH, Caldwell PH. Factors influencing quality of life in children with urinary incontinence. J Urol. 2011;186(3):1048–52.CrossRef Deshpande AV, Craig JC, Smith GH, Caldwell PH. Factors influencing quality of life in children with urinary incontinence. J Urol. 2011;186(3):1048–52.CrossRef
11.
go back to reference Rajindrajith S, Devanarayana NM, Crispus Perera BJ, Benninga MA. Childhood constipation as an emerging public health problem. World J Gastroenterol. 2016;22(30):6864–75.CrossRef Rajindrajith S, Devanarayana NM, Crispus Perera BJ, Benninga MA. Childhood constipation as an emerging public health problem. World J Gastroenterol. 2016;22(30):6864–75.CrossRef
12.
go back to reference Kremer ME, Dirix M, Koeneman MM, van Baren R, Heij HA, Wijnen MH, et al. Quality of life in adulthood after resection of a sacrococcygeal teratoma in childhood: a Dutch multicentre study. Arch Dis Child Fetal Neonatal Ed. 2015;100(3):F229–32.CrossRef Kremer ME, Dirix M, Koeneman MM, van Baren R, Heij HA, Wijnen MH, et al. Quality of life in adulthood after resection of a sacrococcygeal teratoma in childhood: a Dutch multicentre study. Arch Dis Child Fetal Neonatal Ed. 2015;100(3):F229–32.CrossRef
13.
go back to reference Hambraeus M, Al-Mashhadi A, Wester T, Svensson PJ, Stenstrom P, Lilja HE. Functional outcome and health-related quality of life in patients with sacrococcygeal teratoma - a Swedish multicenter study. J Pediatr Surg. 2019;54(8):1638–43. Hambraeus M, Al-Mashhadi A, Wester T, Svensson PJ, Stenstrom P, Lilja HE. Functional outcome and health-related quality of life in patients with sacrococcygeal teratoma - a Swedish multicenter study. J Pediatr Surg. 2019;54(8):1638–43.
14.
go back to reference 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):800–12.CrossRef 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):800–12.CrossRef
15.
go back to reference Draaijers LJ, Tempelman FR, Botman YA, Tuinebreijer WE, Middelkoop E, Kreis RW, et al. The patient and observer scar assessment scale: a reliable and feasible tool for scar evaluation. Plast Reconstr Surg. 2004;113(7):1960–5 discussion 6-7.CrossRef Draaijers LJ, Tempelman FR, Botman YA, Tuinebreijer WE, Middelkoop E, Kreis RW, et al. The patient and observer scar assessment scale: a reliable and feasible tool for scar evaluation. Plast Reconstr Surg. 2004;113(7):1960–5 discussion 6-7.CrossRef
16.
go back to reference Gee Kee E, Kimble RM, Cuttle L, Stockton K. Comparison of three different dressings for partial thickness burns in children: study protocol for a randomised controlled trial. Trials. 2013;14:403.CrossRef Gee Kee E, Kimble RM, Cuttle L, Stockton K. Comparison of three different dressings for partial thickness burns in children: study protocol for a randomised controlled trial. Trials. 2013;14:403.CrossRef
17.
go back to reference Ortqvist L, Almstrom M, Ojmyr-Joelsson M, Wigander H, Wahrner A, Wester T. Cosmetic and functional outcome after stoma site skin closure in children. Pediatr Surg Int. 2011;27(10):1123–6.CrossRef Ortqvist L, Almstrom M, Ojmyr-Joelsson M, Wigander H, Wahrner A, Wester T. Cosmetic and functional outcome after stoma site skin closure in children. Pediatr Surg Int. 2011;27(10):1123–6.CrossRef
18.
go back to reference Shalaby MS, Dorris L, Carachi R. The long-term psychosocial outcomes following excision of sacrococcygeal teratoma: a national study. Arch Dis Child Fetal Neonatal Ed. 2014;99(2):F149–52.CrossRef Shalaby MS, Dorris L, Carachi R. The long-term psychosocial outcomes following excision of sacrococcygeal teratoma: a national study. Arch Dis Child Fetal Neonatal Ed. 2014;99(2):F149–52.CrossRef
19.
go back to reference Grano C, Bucci S, Aminoff D, Lucidi F, Violani C. Transition from childhood to adolescence: quality of life changes 6 years later in patients born with anorectal malformations. Pediatr Surg Int. 2015;31(8):735–40.CrossRef Grano C, Bucci S, Aminoff D, Lucidi F, Violani C. Transition from childhood to adolescence: quality of life changes 6 years later in patients born with anorectal malformations. Pediatr Surg Int. 2015;31(8):735–40.CrossRef
20.
go back to reference Danckaerts M, Sonuga-Barke EJ, Banaschewski T, Buitelaar J, Dopfner M, Hollis C, et al. The quality of life of children with attention deficit/hyperactivity disorder: a systematic review. Eur Child Adolesc Psychiatry. 2010;19(2):83–105.CrossRef Danckaerts M, Sonuga-Barke EJ, Banaschewski T, Buitelaar J, Dopfner M, Hollis C, et al. The quality of life of children with attention deficit/hyperactivity disorder: a systematic review. Eur Child Adolesc Psychiatry. 2010;19(2):83–105.CrossRef
21.
go back to reference Gebb JS, Khalek N, Qamar H, Johnson MP, Oliver ER, Coleman BG, et al. High tumor volume to fetal weight ratio is associated with worse fetal outcomes and increased maternal risk in fetuses with sacrococcygeal Teratoma. Fetal Diagn Ther. 2019;45:94–101. Gebb JS, Khalek N, Qamar H, Johnson MP, Oliver ER, Coleman BG, et al. High tumor volume to fetal weight ratio is associated with worse fetal outcomes and increased maternal risk in fetuses with sacrococcygeal Teratoma. Fetal Diagn Ther. 2019;45:94–101.
22.
go back to reference Usui N, Kitano Y, Sago H, Kanamori Y, Yoneda A, Nakamura T, et al. Outcomes of prenatally diagnosed sacrococcygeal teratomas: the results of a Japanese nationwide survey. J Pediatr Surg. 2012;47(3):441–7.CrossRef Usui N, Kitano Y, Sago H, Kanamori Y, Yoneda A, Nakamura T, et al. Outcomes of prenatally diagnosed sacrococcygeal teratomas: the results of a Japanese nationwide survey. J Pediatr Surg. 2012;47(3):441–7.CrossRef
23.
go back to reference Broring T, Oostrom KJ, van Dijk-Lokkart EM, Lafeber HN, Brugman A, Oosterlaan J. Attention deficit hyperactivity disorder and autism spectrum disorder symptoms in school-age children born very preterm. Res Dev Disabil. 2018;74:103–12.CrossRef Broring T, Oostrom KJ, van Dijk-Lokkart EM, Lafeber HN, Brugman A, Oosterlaan J. Attention deficit hyperactivity disorder and autism spectrum disorder symptoms in school-age children born very preterm. Res Dev Disabil. 2018;74:103–12.CrossRef
24.
go back to reference de Jong W, Kaptein AA, van der Schans CP, Mannes GP, van Aalderen WM, Grevink RG, et al. Quality of life in patients with cystic fibrosis. Pediatr Pulmonol. 1997;23(2):95–100.CrossRef de Jong W, Kaptein AA, van der Schans CP, Mannes GP, van Aalderen WM, Grevink RG, et al. Quality of life in patients with cystic fibrosis. Pediatr Pulmonol. 1997;23(2):95–100.CrossRef
25.
go back to reference Nieuwesteeg A, Pouwer F, van der Kamp R, van Bakel H, Aanstoot HJ, Hartman E. Quality of life of children with type 1 diabetes: a systematic review. Curr Diabetes Rev. 2012;8(6):434–43.CrossRef Nieuwesteeg A, Pouwer F, van der Kamp R, van Bakel H, Aanstoot HJ, Hartman E. Quality of life of children with type 1 diabetes: a systematic review. Curr Diabetes Rev. 2012;8(6):434–43.CrossRef
26.
go back to reference Compas BE, Jaser SS, Dunn MJ, Rodriguez EM. Coping with chronic illness in childhood and adolescence. Annu Rev Clin Psychol. 2012;8:455–80.CrossRef Compas BE, Jaser SS, Dunn MJ, Rodriguez EM. Coping with chronic illness in childhood and adolescence. Annu Rev Clin Psychol. 2012;8:455–80.CrossRef
Metadata
Title
Health-related quality of life and scar satisfaction in a cohort of children operated on for sacrococcygeal teratoma
Authors
Mette Hambraeus
Lars Hagander
Einar Arnbjörnsson
Anna Börjesson
Pernilla Stenström
Publication date
01-12-2020
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2020
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-020-01350-y

Other articles of this Issue 1/2020

Health and Quality of Life Outcomes 1/2020 Go to the issue