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Eur J Pediatr Surg 2020; 30(03): 225-231
DOI: 10.1055/s-0040-1710029
Review Article
Georg Thieme Verlag KG Stuttgart · New York

Basic Principles of Health-Related Quality of Life in Parents and Caregivers of Pediatric Surgical Patients with Rare Congenital Malformations—A Scoping Review

Stefanie Witt 
1   Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
,
Janika Blömeke
1   Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
,
Monika Bullinger
1   Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
,
Jens Dingemann
2   Department of Pediatric Surgery, Hannover Medical School, Hannover, Niedersachsen, Germany
,
Julia Quitmann
1   Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
› Institutsangaben
Weitere Informationen

Publikationsverlauf

30. März 2020

31. März 2020

Publikationsdatum:
18. Mai 2020 (online)

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Abstract

Introduction The diagnosis of a rare congenital malformation with necessary surgical treatment is an emotionally stressful event in a parent's life and may impact parental health-related quality of life (HrQoL). We aimed to review the literature on HrQoL in parents and caregivers of pediatric surgical patients with rare congenital malformations and summarize the results.

Materials and Methods For this scoping review, a literature search in PubMed was conducted from inception to November 21, 2019. Inclusion and exclusion criteria to select articles were defined a priori.

Results Four articles (published 2014–2018) describing HrQoL in parents of pediatric surgical patients with rare congenital malformations in comparison to population-based references or healthy control groups were identified. Only European studies were found, and sample sizes varied between 15 and 87 participants. Results for parental HrQoL yielded inconsistencies.

Conclusion So far, only a few studies with small sample sizes focus on parental HrQoL in pediatric surgical patients with rare congenital malformations. To gain a comprehensive understanding of the impact of a rare congenital malformation on HrQoL of all family members, it is necessary to consider three main aspects: (1) to use both generic- and disease-specific instruments measuring HrQoL of the young patient as well as his/her parents and siblings in larger sample sizes, (2) to collect longitudinal data, and (3) to consider a mixed-method approach.

Keywords

health-related quality of life - parents - rare diseases - congenital malformations - surgical treatment
 

  • References

  • 1 Doss BD, Rhoades GK, Stanley SM, Markman HJ. The effect of the transition to parenthood on relationship quality: an 8-year prospective study. J Pers Soc Psychol 2009; 96 (03) 601-619
    CrossrefPubMedGoogle Scholar
  • 2 Simpson JA, Rholes WS, Campell L, et al., Adult attachment, the transition to parenthood, and marital well-being, in Advances in personal relationships. Understanding marriage: Developments in the study of couple interaction, P. Noller and J.A. Feeney, eds., Cambridge University Press: University of Queensland;2002:385–410
    PubMed
  • 3 Theisen JC, Ogolsky BG, Simpson JA, Rholes WS. Dyad to triad: A longitudinal analysis of humor and pregnancy intention during the transition to parenthood. Journal of Social and Personal Relationships 2019;36(11-12):3611–3630
    PubMed
  • 4 Reichle B. Partnerentwicklung junger Eltern: Wie sich aus der Bewältigung von Lebensveränerungen Probleme entwicklen. In: Schneider NF, Matthias-Bleck H. , eds. Elternschaft heute Gesellschaftliche Rahmenbedingungen und individuelle Gestaltungsaufgaben. Opladen: Leske + Budrich; 2002: 75-94
    Google Scholar
  • 5 Williford AP, Calkins SD, Keane SP. Predicting change in parenting stress across early childhood: child and maternal factors. J Abnorm Child Psychol 2007; 35 (02) 251-263
    CrossrefPubMedGoogle Scholar
  • 6 Biehle SN, Mickelson KD. Personal and co-parent predictors of parenting efficacy across the transition to parenthood. J Soc Clin Psychol 2011;30(9):985–1010
    PubMed
  • 7 Eurodis Rare Diseases Europe. What is a rare disease? Available at: https://www.eurordis.org/sites/default/files/publications/Fact_Sheet_RD.pdf . Published 2017. Accessed February 6, 2020
    PubMed
  • 8 Pommerening K, Debling D, Kaatsch P. , et al. Register zu seltenen Krankheiten. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2008; 51: 491
    CrossrefPubMedGoogle Scholar
  • 9 Wetterauer B, Schuster R. Seltene Krankheiten. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2008; 51: 519
    CrossrefPubMedGoogle Scholar
  • 10 Schulz M, Wandrey M, Hering R, Mandy S, Bätzing-Feigenbaum J. Prävalenz seltener Erkrankungen in der ambulanten Versorgung in Deutschland im Zeitraum 2008 bis 2011. Zentralinstitut für die kassenärztliche Versorgung in Deutschland (Zi). Versorgungsatlas-Bericht Nr. 15/13. Available at: http://www.versorgungsatlas.de/themen/alle-analysen-nach-datum-sortiert/?tab=6&uid=63 . Published 2015. Accessed February 2, 2020
    PubMed
  • 11 Orphanet. Über seltene Krankheiten. Available at: http://www.orpha.net/national/DE-DE/index/%C3%BCber-seltene-krankheiten/ . Published 2020. Accessed February 5, 2020
    PubMed
  • 12 Blacher J. Sequential stages of parental adjustment to the birth of a child with handicaps: fact or artifact?. Ment Retard 1984; 22 (02) 55-68
    PubMedGoogle Scholar
  • 13 Marvin RS, Pianta RC. Mothers' reactions to their child's diagnosis: relations with security of attachment. J Clin Child Psychol 1996; 25: 436-445
    CrossrefPubMedGoogle Scholar
  • 14 Coffey JS. Parenting a child with chronic illness: a metasynthesis. Pediatr Nurs 2006; 32 (01) 51-59
    PubMedGoogle Scholar
  • 15 Dingemann C, Meyer A, Kircher G. , et al. Long-term health-related quality of life after complex and/or complicated esophageal atresia in adults and children registered in a German patient support group. J Pediatr Surg 2014; 49 (04) 631-638
    CrossrefPubMedGoogle Scholar
  • 16 Holzinger D, Fellinger J, Beitel C. Early onset of family centred intervention predicts language outcomes in children with hearing loss. Int J Pediatr Otorhinolaryngol 2011; 75 (02) 256-260
    CrossrefPubMedGoogle Scholar
  • 17 Quitmann J, Witt S, Rohenkohl A. , et al. Lebensqualität junger menschen mit Achondroplasie. Monatsschr Kinderheilkd 2014; 162: 428-434
    CrossrefPubMedGoogle Scholar
  • 18 Tong A, Lowe A, Sainsbury P, Craig JC. Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study. Child Care Health Dev 2010; 36 (04) 549-557
    CrossrefPubMedGoogle Scholar
  • 19 Witt S, Bloemeke J, Dörr H-G. , et al. Adrenogenitales Syndrom (AGS) mit 21-Hydoxylase-Defekt bei Kleinkindern. Erste Ergebnisse einer Pilotstudie zur psychosozialen Situation der Eltern. Pädiatr Praxis 2018; 90: 29-37
    PubMedGoogle Scholar
  • 20 Witt S, Quitmann J. Eine Diagnose überbringen. Warum gerade ich?. Deutsche Hebammenzeitschrift 2019; 71 (10) 30-35
    PubMedGoogle Scholar
  • 21 Dellenmark-Blom M, Witt S, Faqiryar P. , et al. The Impact of Esophageal Atresia on family experiences as reported in a parent focus group study. (In preparation)
    PubMedGoogle Scholar
  • 22 Waggoner K, Wilgosh L. Concerns of families of children with learning disabilities. J Learn Disabil 1990; 23 (02) 97-98 , 113
    CrossrefPubMedGoogle Scholar
  • 23 Chassany O, Sagnier P, Marquis P. , et al. Patient-reported outcomes: the example of health-related quality of life—a European guidance document for the improved integration of health-related quality of life assessment in the drug regulatory process. Drug Inf J 2002; 36: 209-238
    CrossrefPubMedGoogle Scholar
  • 24 Witt S, Dellenmark-Blom M, Dingemann J. , et al. Quality of life in parents of children born with esophageal atresia. Eur J Pediatr Surg 2019; 29 (04) 371-377
    Artikel in Thieme ConnectPubMedGoogle Scholar
  • 25 Witt S, Kolb B, Bloemeke J, Mohnike K, Bullinger M, Quitmann J. Quality of life of children with achondroplasia and their parents - a German cross-sectional study. Orphanet J Rare Dis 2019; 14 (01) 194
    CrossrefPubMedGoogle Scholar
  • 26 Faugli A, Bjørnland K, Emblem R, Nøvik TS, Diseth TH. Mental health and psychosocial functioning in adolescents with esophageal atresia. J Pediatr Surg 2009; 44 (04) 729-737
    CrossrefPubMedGoogle Scholar
  • 27 Goldbeck L, Melches J. Quality of life in families of children with congenital heart disease. Qual Life Res 2005; 14 (08) 1915-1924
    CrossrefPubMedGoogle Scholar
  • 28 Ramsauer B, Lotzin A, Quitmann JH, Becker-Stoll F, Tharner A, Romer G. Insightfulness and later infant attachment in clinically depressed and nonclinical mothers. Infant Ment Health J 2014; 35 (03) 210-219
    CrossrefPubMedGoogle Scholar
  • 29 Fonagy P, Gergely G, Target M. The parent-infant dyad and the construction of the subjective self. J Child Psychol Psychiatry 2007; 48 (3-4): 288-328
    CrossrefPubMedGoogle Scholar
  • 30 Arksey H, O'Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol 2005; 8: 19-32
    CrossrefPubMedGoogle Scholar
  • 31 Civilibal M, Suman M, Elevli M, Duru NS. The quality of life of mothers of children with spina bifida. J Pediatr Orthop B 2014; 23 (04) 319-321
    CrossrefPubMedGoogle Scholar
  • 32 Stoffel G, Spirig R, Stiasny B, Bernet V, Dave H, Knirsch W. Psychosocial impact on families with an infant with a hypoplastic left heart syndrome during and after the interstage monitoring period - a prospective mixed-method study. J Clin Nurs 2017; 26 (21-22): 3363-3370
    CrossrefPubMedGoogle Scholar
  • 33 Witvliet MJ, Bakx R, Zwaveling S, van Dijk TH, van der Steeg AF. Quality of life and anxiety in parents of children with an anorectal malformation or Hirschsprung disease: the first year after diagnosis. Eur J Pediatr Surg 2016; 26 (01) 2-6
    PubMedGoogle Scholar
  • 34 Poley MJ, Brouwer WB, van Exel NJ, Tibboel D. Assessing health-related quality-of-life changes in informal caregivers: an evaluation in parents of children with major congenital anomalies. Qual Life Res 2012; 21 (05) 849-861
    CrossrefPubMedGoogle Scholar
  • 35 European Plattform on Rare Disease Registration. Prevalence charts and tables. Available at: https://eu-rd-platform.jrc.ec.europa.eu/eurocat/eurocat-data/prevalence_en . Published 2019. Accessed February 6, 2020
    PubMed
  • 36 Götzmann L, Schönholzer SM, Kölble N. , et al. Die Verdachtsdiagnose einer fetalen Entwicklungsstörung in der Ultraschall-Untersuchung: Auswirkungen auf das psychische Befinden schwangerer Frauen. Ultraschall Med 2002; 23 (01) 33-40
    Artikel in Thieme ConnectPubMedGoogle Scholar
  • 37 Witt S, Bullinger M, Quitmann J. Emotionsregulation, psychische Auffälligkeiten und Lebensqualität von Kindern mit endokrinem Kleinwuchs. Pädiatr Praxis 2018; 90: 200-210
    PubMedGoogle Scholar
  • 38 Teubert D, Pinquart M. Belastungen der Eltern chronisch körperlich kranker Kinder. In: Pinquart M. ed. Wenn Kinder und Jugendliche körperlich chronisch krank sind. Springer:2013;83–99
    PubMed
  • 39 Skreden M, Skari H, Malt UF. , et al. Long-term parental psychological distress among parents of children with a malformation--a prospective longitudinal study. Am J Med Genet A 2010; 152A (09) 2193-2202
    CrossrefPubMedGoogle Scholar
  • 40 Ellert U, Kurth BM. Methodische Betrachtungen zu den Summenscores des SF-36 anhand der erwachsenen bundesdeutschen Bevölkerung. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2004; 47 (11) 1027-1032
    CrossrefPubMedGoogle Scholar
  • 41 Le Gouëz M, Alvarez L, Rousseau V. , et al. Posttraumatic stress reactions in parents of children esophageal atresia. PLoS One 2016; 11 (03) e0150760
    CrossrefPubMedGoogle Scholar
  • 42 Flieder S, Dellenmark-Blom M, Witt S. , et al. Generic health-related quality of life after repair of esophageal atresia and its determinants within a German-Swedish cohort. Eur J Pediatr Surg 2019; 29 (01) 75-84
    Artikel in Thieme ConnectPubMedGoogle Scholar
  • 43 Arafa MA, Zaher SR, El-Dowaty AA, Moneeb DE. Quality of life among parents of children with heart disease. Health Qual Life Outcomes 2008; 6: 91
    CrossrefPubMedGoogle Scholar
  • 44 Hatzmann J, Heymans HS, Ferrer-i-Carbonell A, van Praag BM, Grootenhuis MA. Hidden consequences of success in pediatrics: parental health-related quality of life--results from the Care Project. Pediatrics 2008; 122 (05) e1030-e1038
    CrossrefPubMedGoogle Scholar
  • 45 Lawoko S, Soares JJF. Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Qual Life Res 2003; 12 (06) 655-666
    CrossrefPubMedGoogle Scholar
  • 46 Wiedebusch S, Konrad M, Foppe H. , et al. Health-related quality of life, psychosocial strains, and coping in parents of children with chronic renal failure. Pediatr Nephrol 2010; 25 (08) 1477-1485
    CrossrefPubMedGoogle Scholar
  • 47 Berger ZE, Dalton LJ. Coping with a cleft: psychosocial adjustment of adolescents with a cleft lip and palate and their parents. Cleft Palate Craniofac J 2009; 46 (04) 435-443
    CrossrefPubMedGoogle Scholar
  • 48 Hunfeld JA, Perquin CW, Duivenvoorden HJ. , et al. Chronic pain and its impact on quality of life in adolescents and their families. J Pediatr Psychol 2001; 26 (03) 145-153
    CrossrefPubMedGoogle Scholar
  • 49 Moher D, Liberati A, Tetzlaff J, Altman DG. ; PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med 2009; 6 (07) e1000097
    CrossrefPubMedGoogle Scholar