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Quality of Life Assessment in Children with Feeding and Swallowing Disorders

  • Pamela DodrillEmail author
  • Hayley Henrikson Estrem
Chapter

Abstract

As described in previous chapters, dysphagia is an impairment of swallowing function and may occur at the oral, pharyngeal, or esophageal phases of swallowing. Children with dysphagia generally present with a feeding disorder, but not all children with a feeding disorder have dysphagia. Pediatric feeding and swallowing disorders can have a profound impact on the child’s quality of life, as well as that of their parents and family. Feeding or swallowing difficulties are generally stressful in the moment, for both the child and family. In addition, parents will often be driven by concern for the long-term consequences of their child not eating enough and/or not eating “normally.” The high stakes involved underlie much of the stress that follows when pediatric feeding and swallowing disorders are present. Children may have a fear of choking or vomiting. Parents may have that same fear about their child and may also fear that the child’s feeding/swallowing disorder is an indicator that the child is not “normal” or will not consume enough to develop “normally.”

Keywords

Quality of life in children with feeding and swallowing disorders Feeding disorders in children Swallowing disorders in children Pediatric feeding and swallowing disorders Health-related quality of life 

Notes

Acknowledgments and Disclosures

The authors are both (unpaid/volunteer) members of the Medical Professional Council for Feeding Matters. The authors express thanks to Feeding Matters Executive Council members (Chris Linn, Jaclyn Pederson) for their review and feedback on this chapter.

References

  1. 1.
    Goday P, Huh SY, Silverman A, Lukens CT, Dodrill P, Cohen SS, et al. Pediatric feeding disorder: consensus definition and conceptual framework. J Pediatr Gastroenterol Nutr. 2019;68(1):124–9.CrossRefGoogle Scholar
  2. 2.
    Dodrill P. Medical conditions impacting on feeding and swallowing development in infants and children. In: M Groher & M Crary (Eds). Dysphagia: Clinical Management in Adults and Children. 2nd edition Mosby; 2015.Google Scholar
  3. 3.
    Office of Disease Prevention and Health Promotion. 2019. https://www.healthypeople.gov/2020/about/foundation-health-measures/Health-Related-Quality-of-Life-and-Well-Being. Accessed Mar 2019.
  4. 4.
    Varni JW, Limbers CA, Burwinkle TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5:43.  https://doi.org/10.1186/1477-7525-5-43.CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    Varni JW, Limbers CA, Burwinkle TM. Parent proxy-report of their children’s health-related quality of life: an analysis of 13,878 parents’ reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5:2–2.  https://doi.org/10.1186/1477-7525-5-2.CrossRefPubMedPubMedCentralGoogle Scholar
  6. 6.
    Varni JW, Bendo CB, Shulman RJ, Self MM, Nurko S, Franciosi JP, Pediatric Quality of Life Inventory™ Gastrointestinal Symptoms Module Testing Study, C, et al. Interpretability of the PedsQL™ gastrointestinal symptoms scales and gastrointestinal worry scales in pediatric patients with functional and organic gastrointestinal diseases. J Pediatr Psychol. 2015;40(6):591–601.  https://doi.org/10.1093/jpepsy/jsv005.CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.
    Franciosi JP, Hommel KA, Bendo CB, King EC, Collins MH, Eby MD, et al. PedsQL eosinophilic esophagitis module: feasibility, reliability, and validity. J Pediatr Gastroenterol Nutr. 2013;57(1):57–66.  https://doi.org/10.1097/MPG.0b013e31828f1fd2.CrossRefPubMedPubMedCentralGoogle Scholar
  8. 8.
    Franciosi JP, Hommel KA, Greenberg AB, DeBrosse CW, Greenler AJ, Abonia JP, et al. Development of the Pediatric Quality of Life Inventory™ Eosinophilic Esophagitis module items: qualitative methods. BMC Gastroenterol. 2012;12:135.  https://doi.org/10.1186/1471-230X-12-135.CrossRefPubMedPubMedCentralGoogle Scholar
  9. 9.
    Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P. The PedsQL family impact module: preliminary reliability and validity. Health Qual Life Outcomes. 2004;2:55.  https://doi.org/10.1186/1477-7525-2-55.CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Lefton-Greif MA, Okelo SO, Wright JM, Collaco JM, McGrath-Morrow SA, Eakin MN. Impact of Children’s feeding/swallowing problems: validation of a new caregiver instrument. Dysphagia. 2014;29:1–7.CrossRefGoogle Scholar
  11. 11.
    Feeding Flock www.feedingflock.com. Accessed Mar 2019.
  12. 12.
    Redle EE. The pediatric feeding and swallowing disorders family impact scale: scale development and initial psychometric properties. Cincinnati: University of Cincinnati; 2007.Google Scholar
  13. 13.
    Dodrill P. Assessment of feeding and swallowing difficulties in infants and children. In: M Groher & M Crary (Eds). Dysphagia: Clinical Management in Adults and Children. 2nd edition. Mosby; 2015.Google Scholar
  14. 14.
    Crary MA, Mann GD, Groher ME. Initial psychometric assessment of a functional oral intake scale for dysphagia in stroke patients. Arch Phys Med Rehabil. 2005;86(8):1516–20.CrossRefGoogle Scholar
  15. 15.
    World Health Organization. International classification of diseases. https://www.who.int/classifications/icd/en/. Accessed Mar 2019.
  16. 16.
    World Health Organization. International classification of functioning, disability and health. https://www.who.int/classifications/icf/en/. Accessed Mar 2019.
  17. 17.
    World Health Organization. International classification of functioning, disability and health – child and youth. https://apps.who.int/iris/handle/10665/43737. Accessed Mar 2019.
  18. 18.
    Estrem H, Pados BF, Thoyre S, Knafl K, McComish C, Park J. Concept of pediatric feeding problems from the parent perspective. MCN Am J Matern Child Nurs. 2016;41(4):212–20.CrossRefGoogle Scholar
  19. 19.
    Estrem HH, Pados BF, Park J, Knafl KA, Thoyre SM. Feeding problems in infancy and early childhood: evolutionary concept analysis. J Adv Nurs. 2017;73(1):56–70.  https://doi.org/10.1111/jan.13140.CrossRefPubMedGoogle Scholar
  20. 20.
    Lutz KF. Feeding problems of NICU and PICU graduates: perceptions of parents and providers. Newborn Infant Nurs Rev. 2012;12(4):207–13.CrossRefGoogle Scholar
  21. 21.
    Leeman J, Crandell JL, Lee A, Bai J, Sandelowski M, Knafl K. Family functioning and the well-being of children with chronic conditions: a meta-analysis. Res Nurs Health. 2016;39(4):229–43.  https://doi.org/10.1002/nur.21725.CrossRefPubMedGoogle Scholar
  22. 22.
    Chesla CA. Do family interventions improve health? J Fam Nurs. 2010;16(4):355–77.CrossRefGoogle Scholar
  23. 23.
    Marshall J, Hill R, Ware R, Ziviani J, Dodrill P. Multidisciplinary intervention for childhood feeding difficulties: a randomized clinical trial. J Pediatr Gastroenterol Nutr. 2015;60(5):680–7.CrossRefGoogle Scholar
  24. 24.
    Marshall J, Hill RJ, Wallace M, Dodrill P. Intervention for feeding difficulties in children with a complex medical history: a randomized clinical trial. J Pediatr Gastroenterol Nutr. 2018;66(1):152–8.CrossRefGoogle Scholar

Additional Material

  1. Meet Lucy.: http://bit.ly/MeetLucyFM. n.d.
  2. Meet Noah.: http://bit.ly/MeetNoahFM. n.d.

Copyright information

© Springer Nature Switzerland AG 2020

Authors and Affiliations

  1. 1.Feeding and Developmental Therapy Team, Neonatal Intensive Care UnitBrigham and Women’s HospitalBostonUSA
  2. 2.School of NursingUniversity of North Carolina WilmingtonWilmingtonUSA

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