Health-Related Quality of Life in Pediatric Dysphonia

  • Shannon M. TheisEmail author
  • Nadine P. Connor


Childhood dysphonia is a broad condition that can be difficult to investigate and quantify. As clinicians and researchers, we often consider the severity and duration of a child’s voice disturbance and then extrapolate the degree of impact that the disturbance may have on the child’s ability to communicate effectively. While the field of pediatric dysphonia has advanced by providing objective data via acoustic and aerodynamic measures, it is unlikely that we are able to fully understand the way in which dysphonia affects children’s lives without exploring health-related quality of life. Too often in childhood dysphonia, clinical judgments are made regarding the effect of a pediatric voice disorder through a caregiver report rather than asking the child directly. This continues to be problematic because the self-evaluation process is important in establishing therapy goals and measuring subsequent intervention outcomes.


Health-related quality of life in pediatric dysphonia Pediatric dysphonia quality of life Dysphonia and quality of life Childhood dysphonia Health-related quality of life instruments 


  1. 1.
    Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr. 2003;3(6):329–41.PubMedCrossRefGoogle Scholar
  2. 2.
    Knight TS, Burwinkle TM, Varni JW. Health-related quality of life. In: Sobo EJ, Kurtin PS, editors. Child health services research: applications, innovations, and insights. San Francisco: Jossey-Bass; 2003.Google Scholar
  3. 3.
    Ware JE Jr. Standards for validating health measures: definition and content. J Chronic Dis. 1987;40(6):473–80.PubMedCrossRefGoogle Scholar
  4. 4.
    Smith KW, Avis NE, Assmann SF. Distinguishing between quality of life and health status in quality of life research: a meta-analysis. Qual Life Res. 1999;8(5):447–59.PubMedCrossRefPubMedCentralGoogle Scholar
  5. 5.
    Frattali CM. Measuring outcomes in speech-language pathology. New York: Thieme; 1998.Google Scholar
  6. 6.
    Testa MA, Nackley JF. Methods for quality-of-life studies. Annu Rev Public Health. 1994;15:535–59.PubMedCrossRefPubMedCentralGoogle Scholar
  7. 7.
    Levi R, Drotar D. Critical issues and needs in health-related quality of life assessment of children and adolescents. In: Drotar D, editor. Measuring health-related quality of life in children and adolescents. London: Lawrence Erlbaum Associates; 1998.Google Scholar
  8. 8.
    Arnold R, et al. The relative contribution of domains of quality of life to overall quality of life for different chronic diseases. Qual Life Res. 2004;13(5):883–96.PubMedCrossRefGoogle Scholar
  9. 9.
    Guyatt GH, et al. Measurements in clinical trials: choosing the right approach. In: Spilker BB, editor. Quality of life and Pharmacoeconomics in clinical trials. Philadelphia: Lippincott-Raven Publishers; 1996.Google Scholar
  10. 10.
    Testa MA, Simonson DC. Assesment of quality-of-life outcomes.[see comment]. N Engl J Med. 1996;334(13):835–40.PubMedCrossRefGoogle Scholar
  11. 11.
    Streiner D, Norman G. Health measurement scales. Oxford: Oxford University Press; 2003.Google Scholar
  12. 12.
    Eiser C. Children’s quality of life measures. Arch Dis Child. 1997;77(4):350–4.PubMedPubMedCentralCrossRefGoogle Scholar
  13. 13.
    Andresen EM, Vahle VJ, Lollar D. Proxy reliability: health-related quality of life (HRQoL) measures for people with disability. Qual Life Res. 2001;10(7):609–19.PubMedCrossRefGoogle Scholar
  14. 14.
    Wilson KA, et al. Perception of quality of life by patients, partners and treating physicians. Qual Life Res. 2000;9(9):1041–52.PubMedCrossRefGoogle Scholar
  15. 15.
    Jokovic A, Locker D, Guyatt GH. How well do parents know their children? Implications for proxy reporting of child health-related quality of life. Qual Life Res. 2004;13(7):1297–307.PubMedCrossRefGoogle Scholar
  16. 16.
    le Coq EM, et al. Which source should we use to measure quality of life in children with asthma: the children themselves or their parents? Qual Life Res. 2000;9(6):625–36.PubMedCrossRefGoogle Scholar
  17. 17.
    Vance YH, et al. Issues in measuring quality of life in childhood cancer: measures, proxies, and parental mental health. J Child Psychol Psychiatry Allied Discip. 2001;42(5):661–7.CrossRefGoogle Scholar
  18. 18.
    Eiser C, Morse R. Can parents rate their child’s health-related quality of life? Results of a systematic review. Qual Life Res. 2001;10(4):347–57.PubMedCrossRefPubMedCentralGoogle Scholar
  19. 19.
    Rosenbaum PL, Saigal S. Measuring health-related quality of life in pediatric populations: conceptual issues. In: Spilker B, editor. Quality of life and pharmacoeconomics in clinical trials. Philadelphia: Lippincott-Raven; 1996. p. 785–91.Google Scholar
  20. 20.
    Varni JW, et al. The pediatric cancer quality of life inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. J Behav Med. 1998;21(2):179–204.PubMedCrossRefGoogle Scholar
  21. 21.
    Schor EL. Children’s health and the assessment of health-related quality of life. In: Drotar D, editor. Measuring health-related quality of life in children and adolescents: implications for research and practice. London: Lawrence Erlbaum Associates; 1998.Google Scholar
  22. 22.
    Ravens-Sieberer U, et al. Quality of life in children and adolescents: a European public health perspective. Sozial Praventivmed. 2001;46(5):294–302.CrossRefGoogle Scholar
  23. 23.
    Jenney ME. Theoretical issues pertinent to measurement of quality of life. Med Pediatr Oncol Suppl. 1998;1:41–5.CrossRefGoogle Scholar
  24. 24.
    Landgraf JM, Abetz LN. Measuring health outcomes in pediatric populations: issues in psychometrics and application. In: Spilker BB, editor. Quality of life and pharmacoeconomics in clinical trials. Philadelphia: Lippincott-Raven Publishers; 1996.Google Scholar
  25. 25.
    Parsons SK, Brown AP. Evaluation of quality of life of childhood cancer survivors: a methodological conundrum. Med Pediatr Oncol. 1998;Suppl 1:46–53.PubMedCrossRefPubMedCentralGoogle Scholar
  26. 26.
    Christakis DA, Johnston BD, Connell FA. Methodologic issues in pediatric outcomes research. Ambul Pediatr. 2001;1(1):59–62.PubMedCrossRefGoogle Scholar
  27. 27.
    Jenney ME, Campbell S. Measuring quality of life. Arch Dis Child. 1997;77(4):347–50.PubMedPubMedCentralCrossRefGoogle Scholar
  28. 28.
    Jenney ME, Kane RL, Lurie N. Developing a measure of health outcomes in survivors of childhood cancer: a review of the issues. Med Pediatr Oncol. 1995;24(3):145–53.PubMedCrossRefGoogle Scholar
  29. 29.
    Eiser C, Mohay H, Morse R. The measurement of quality of life in young children. Child: Care Health Dev. 2000;26(5):401–14.Google Scholar
  30. 30.
    Bennett Johnson S. Methodological considerations in pediatric behavioral research: measurement. Dev Behav Pediatr. 1991;12(6):361–9.Google Scholar
  31. 31.
    Juniper EF, et al. Minimum skills required by children to complete health-related quality of life instruments for asthma: comparison of measurement properties. Eur Respir J. 1997;10(10):2285–94.PubMedCrossRefGoogle Scholar
  32. 32.
    Juniper EF, Guyatt GH, Streiner DL, King DR. Clinical impact versus factor analysis for quality of life questionnaire construction. J Clin Epidemiol. 1997;50(3):233–8.PubMedCrossRefPubMedCentralGoogle Scholar
  33. 33.
    Salturk Z, Ozdemir E, Kumral TL, et al. Reliability and validation of the Turkish version of the pediatric voice-related quality of life survey. J Voice. 2018;32(4):514.e13–7.CrossRefGoogle Scholar
  34. 34.
    Mesallam TA, Alabdulkarim B, AlQabbani AA, Bin Suhaym NA, AlAjlan S. The Arabic translation, cultural adaptation, and validation of the pediatric voice-related quality of life survey. Int J Pediatr Otorhinolaryngol. 2019;116:30–3.PubMedCrossRefPubMedCentralGoogle Scholar
  35. 35.
    Liu K, Liu S, Zhou Z, et al. Reliability and validity of the Chinese pediatric voice handicap index. Int J Pediatr Otorhinolaryngol. 2018;105:127–31.PubMedCrossRefGoogle Scholar
  36. 36.
    Park SS, Kwon T-K, Choi SH, et al. Reliability and validity of the Korean version of pediatric voice handicap index in school age children. Int J Pediatr Otorhinolaryngol. 2013;77(1):107–12.PubMedCrossRefPubMedCentralGoogle Scholar
  37. 37.
    Oddon PA, Boucekine M, Boyer L, Triglia JM, Nicollas R. Health-related quality of life in children with dysphonia and validation of the French pediatric voice handicap index. Int J Pediatr Otorhinolaryngol. 2018;104:205–9.PubMedCrossRefGoogle Scholar
  38. 38.
    Branski RC, Cukier-Blaj S, Pusic A, et al. Measuring quality of life in dysphonic patients: a systematic review of content development in patient-reported outcomes measures. J Voice. 2010;24:193–8.PubMedCrossRefGoogle Scholar
  39. 39.
    Zur KB, Cotton S, Kelchner L, Baker S, Weinrich B, Lee L. Pediatric voice handicap index (pVHI): a new tool for evaluating pediatric dysphonia. Int J Pediatr Otorhinolaryngol. 2007;71:77–82.PubMedCrossRefPubMedCentralGoogle Scholar
  40. 40.
    Jacobson BH, Johnson A, Grywalski C, et al. The voice handicap index (VHI): development and validation. Am J Speech Lang Path. 1998;6:66–70.CrossRefGoogle Scholar
  41. 41.
    Hartnick CJ. Validation of a pediatric voice quality of life instrument. Arch Otolaryngol Head Neck Surg. 2002;128:919–22.PubMedCrossRefPubMedCentralGoogle Scholar
  42. 42.
    Hartnick CJ, Volk M, Cunningham M. Establishing normative voice-related quality of life scores within the pediatric otolaryngology population. Arch Otolaryngol – Head Neck Surg. 2003;129:1090–3.PubMedCrossRefGoogle Scholar
  43. 43.
    Gliklich RE, Glovsky RM, Montgomery WW. Validation of a voice outcome survey for unilateral vocal cord paralysis. Otolaryngol – Head Neck Surg. 1999;120:153–8.PubMedCrossRefPubMedCentralGoogle Scholar
  44. 44.
    Boseley ME, Cunningham M, Volk MS, Hartnick C. Validation of the pediatric voice-related quality-of-life survey. Arch Otolaryngol Head Neck Surg. 2006;132:717–20.PubMedCrossRefPubMedCentralGoogle Scholar
  45. 45.
    Hogikyan ND, Sethuraman G. Validation of an instrument to measure voice-related quality of life (V-RQOL). J Voice. 1999;13:557–69.PubMedCrossRefPubMedCentralGoogle Scholar
  46. 46.
    Cohen W, Wynne DM. Parent and child responses to the pediatric voice-related quality-of-life questionnaire. J Voice. 2015;29(3):299–303.PubMedCrossRefGoogle Scholar
  47. 47.
    Schindler A, Capaccio P, Maruzzi P, Ginocchio D, Bottero A, Otraviani F. Preliminary considerations on the application of the voice handicap index to paediatric dysphonia. Acta Otorhinolaryngol Ital. 2007;27:22–6.PubMedPubMedCentralGoogle Scholar
  48. 48.
    Verduyckt I, Morsomme D, Remacle M. Validation and standardization of the pediatric voice symptom questionnaire: a double-form questionnaire for dysphonic children and their parents. J Voice. 2012;26:e129–39.CrossRefGoogle Scholar
  49. 49.
    Verduyckt I, Remacle M, Jamart J, Benderitter C, Morsomme D. Voice-related complaints in the pediatric population. J Voice. 2011;25:373–80.PubMedCrossRefPubMedCentralGoogle Scholar
  50. 50.
    Ricci-Maccarini A, De Maio V, Murry T, Schindler A. Development and validation of the children’s voice handicap Index-10 for parents. J Voice. 2016;30:120–6.PubMedCrossRefGoogle Scholar
  51. 51.
    Ricci-Maccarini A, De Maio V, Murry T, Schindler A. Development and validation of the children’s voice handicap Index-10 (CVHI-10). J Voice. 2013;27:e23–8.CrossRefGoogle Scholar
  52. 52.
    Connor NP, Cohen SB, Theis SM, Thibeault SL, Heatley DG, Bless DM. Attitudes of children with dysphonia. J Voice. 2008;22:197–209.PubMedCrossRefPubMedCentralGoogle Scholar
  53. 53.
    Roberts P, Priest H. Reliability and validity in research. Nurs Stand. 2006;20:41–5.PubMedCrossRefGoogle Scholar
  54. 54.
    Kimberlin CL, Winterstein AG. Validity and reliability of measurement instruments used in research. Am J Heal Pharm. 2008;65(23):2276–84.CrossRefGoogle Scholar
  55. 55.
    Sechrest L. Validity of measures is no simple matter. Health Serv Res. 2005;40:1584–604.PubMedPubMedCentralCrossRefGoogle Scholar
  56. 56.
    Bhattacharyya N. The prevalence of pediatric voice and swallowing problems in the United States. Laryngoscope. 2015;125:746–50.PubMedCrossRefPubMedCentralGoogle Scholar
  57. 57.
    Carding PN, Roulstone S, Northstone K, ALSPAC Study team. The prevalence of childhood dysphonia: a cross-sectional study. J Voice. 2006;20(4):623–30.PubMedCrossRefGoogle Scholar
  58. 58.
    Ruscello DM, Lass NJ, Podbesek J. Listeners’ perceptions of normal and voice-disordered children. Folia Phoniatr. 1988;40:290–6.CrossRefGoogle Scholar
  59. 59.
    Lass NJ, Ruscello DM, Bradshaw KH, Blankenship BL. Adolescents’ perceptions of normal and voice-disordered children. J Commun Disord. 1991;24:267–74.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2020

Authors and Affiliations

  1. 1.Department of Communication Disorders and SciencesRush University Medical CenterChicagoUSA
  2. 2.Department of Communication Sciences and DisordersUniversity of Wisconsin-MadisonMadisonUSA
  3. 3.Department of SurgerySchool of Medicine and Public Health, University of Wisconsin-MadisonMadisonUSA

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