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Psychometric performance of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire in the Netherlands

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Abstract

The European Quality of Life in Short Stature Youth (QoLISSY) questionnaire is a disease-specific instrument assessing quality of life (QoL) in children with short stature from the child and parent perspectives. In order to use the QoLISSY in Dutch samples, a translation process and psychometric testing is needed. Children diagnosed with short stature (8 to 18 years) and their parents were recruited from a Dutch growth clinic. Reliability was assessed using Cronbach’s α and intraclass correlation coefficients (ICCs). Pearsons’ correlations with the generic KIDSCREEN and a confirmatory factor analysis (CFA) were performed to test validity. Scales showed good internal consistency with α ranging from 0.80 to 0.94 (child report) and from 0.85 to 0.95 (parent report). Test–retest reliability (ICC) ranged from 0.15 to 0.91 (child report) and from 0.14 to 0.83 (parent report). Correlations with the KIDSCREEN in the mean range indicated criterion validity. The models’ goodness of fit was confirmed by CFA results in the Dutch and in comparison with the European sample.

Conclusion: The Dutch QoLISSY is a psychometrically reliable and valid short stature-specific QoL measure. It is now available for use in clinical research and practice to evaluate well-being and possible effects of growth hormone treatment and psychological interventions in the Netherlands.

What is Known:

• Questions in terms of the efficacy and effectiveness of psychological versus pharmacological interventions alone or in combination can be answered with a disease-specific questionnaire as a self-reported outcome measure.

• There is a lack of internationally available short stature-specific QoL instruments reflecting the child and parent perspectives.

What is New:

• The Dutch QoLISSY questionnaire is a psychometrically sound short stature-specific QoL measure reflecting the child and parent perspectives.

• The Dutch QoLISSY questionnaire can be used as a treatment outcome indicator in research and practice.

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Abbreviations

CFA:

Confirmatory factor analysis

GHD:

Growth hormone deficiency

GH-T:

Growth hormone therapy

ICC:

Intraclass correlation coefficient

ISS:

Idiopathic short stature

QoL:

Quality of life

QoLISSY:

Quality of Life in Short Stature Youth

SDS:

Standard deviation scores

References

  1. Albertsson-Wikland K, Aronson AS, Gustafsson J, Hagenas L, Ivarsson SA, Jonsson B, Kristrom B, Marcus C, Nilsson KO, Ritzen EM, Tuvemo T, Westphal O, Ãman J (2008) Dose-dependent effect of growth hormone on final height in children with short stature without growth hormone deficiency. J Clin Endocrinol Metab 93:4342–4350. doi:10.1210/jc.2008-0707

    Article  CAS  PubMed  Google Scholar 

  2. Allen DB, Cuttler L (2013) Clinical practice. Short stature in childhood - challenges and choices. New Engl J Med 368:1220–1228. doi:10.1056/NEJMcp1213178

    Article  CAS  PubMed  Google Scholar 

  3. Bryant J, Cave C, Milne R (2007) Recombinant growth hormone for idiopathic short stature in children and adolescents. Cochrane Database Syst Rev:CD004440. doi:10.1002/14651858.CD004440

  4. Bullinger M, Hasford J (1991) Evaluating quality-of-life measures for clinical trials in Germany. Control Clin Trials 12:91–105

    Article  Google Scholar 

  5. Bullinger M, Quitmann J, Power M, Herdman M, Mimoun E, Debusk K, Feigerlova E, Lunde C, Dellenmark-Blom M, Sanz D, Rohenkohl A, Pleil A, Wollmann H, Chaplin JE (2013) Assessing the quality of life of health-referred children and adolescents with short stature: development and psychometric testing of the QoLISSY instrument. Health Qual Life Outcomes 11:76. doi:10.1186/1477-7525-11-76

    Article  PubMed Central  PubMed  Google Scholar 

  6. Bullinger M, Quitmann J, Silva N, Rohenkohl A, Chaplin J, DeBusk K, Mimoun E, Feigerlova E, Herdman M, Sanz D, Wollmann H, Pleil A, Power M (2014) Cross-cultural equivalence of the patient- and parent-reported Quality of Life in Short Stature Youth Questionnaire. Horm Res Paediatr 82:18–30. doi:10.1159/000358832

    Article  CAS  PubMed  Google Scholar 

  7. Cohen LE (2014) Idiopathic Short Stature A Clinical Review. J Amer Med Assoc 311:1787–1796

    Article  Google Scholar 

  8. Cohen P, Rogol AD, Deal CL, Saenger P, Reiter EO, Ross JL, Chernausek SD, Savage MO, Wit JM, I. S. S. Consensus Workshop participants (2008) Consensus statement on the diagnosis and treatment of children with idiopathic short stature: a summary of the Growth Hormone Research Society, the Lawson Wilkins Pediatric Endocrine Society, and the European Society for Paediatric Endocrinology Workshop. J Clin Endocr Metab 93:4210–4217. doi:10.1210/jc.2008-0509

    Article  CAS  PubMed  Google Scholar 

  9. Cronbach LJ (1951) Coefficient alpha and the internal structure of tests. Psychometrica 16:297–334

    Article  Google Scholar 

  10. Hu L, Bentler PM (1999) Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Struct Equ Model 6:1–55

    Article  Google Scholar 

  11. Mehta A, Hindmarsh PC (2002) The use of somatropin (recombinant growth hormone) in children of short stature. Paediatr Drugs 4:37–47

    Article  PubMed  Google Scholar 

  12. Quitmann J, Rohenkohl A, Bullinger M, Chaplin J, Herdman M, Dolores S, Mimoun E, Feigerlova E, DeBusk K, Power M, Wollmann H, Pleil A (2013) Parental perception of health-related quality of life in children and adolescents with short stature: Literature review and introduction of the parent-reported QoLISSY instrument. Pediatr Endocrinol Rev 11:147–160

    PubMed  Google Scholar 

  13. Rohenkohl A, De Schepper J, Vanderfaeillie J, Fricke K, Hendrickx S, Lagrou K, Bullinger M, Quitmann J, Group tQS (2014) Validation of the Flemish version of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire. Acta Clin Belg 69:177–182

    Article  CAS  PubMed  Google Scholar 

  14. Scholten L, Willemen AM, Grootenhuis MA, Maurice-Stam H, Schuengel C, Last BF (2011) A cognitive behavioral based group intervention for children with a chronic illness and their parents: a multicentre randomized controlled trial. BMC Pediatr 11:65. doi:10.1186/1471-2431-11-65

    Article  PubMed Central  PubMed  Google Scholar 

  15. Scholten L, Willemen AM, Last B, Maurice-Stam H, van Dijk EM, Ensink E, Zandbelt N, van der Hoop-Mooij A, Schuengel C, Grootenhuis MA (2013) Efficacy of psychosocial group intervention for children with chronic illness and their parents. Pediatrics 131:1196–1203

    Article  Google Scholar 

  16. Schönbeck Y, Talma H, van Dommelen P, Bakker B, Buitendijk SE, HiraSing RA, van Buuren S (2013) The world’s tallest nation has stopped growing taller: the height of Dutch children from 1955 to 2009. Pediatr Res 73:371–377. doi:10.1038/pr.2012.189

    Article  PubMed  Google Scholar 

  17. Tanaka T, Cohen P, Clayton PE, Laron Z, Hintz RL, Sizonenko PC (2002) Diagnosis and management of growth hormone deficiency in childhood and adolescence--part 2: growth hormone treatment in growth hormone deficient children. Growth Horm IGF Res 12:323–341

    Article  CAS  PubMed  Google Scholar 

  18. The European QoLISSY Group (2013) Quality of Life in Short Stature Youth. The QoLISSY Questionnaire – User’s Manual. Pabst Science Publishers, Lengerich

    Google Scholar 

  19. The KIDSCREEN Group Europe (2006) The KIDSCREEN questionnaires: Quality of life for children and adolescents - Handbook. Pabst Science Publishers, Lengerich

    Google Scholar 

  20. Wiklund I, Erling A, Albertsson - Wikland K (1998) Critical review of measurement issues in quality of life assessment for children with growth problems. In: Drotar D (ed) Measuring health-related quality of life in children and adolescents. Lauwrence Erlbaum Associates, Mahwah

    Google Scholar 

  21. Wit JM, Ranke MB, Kelnar CJH (2007) ESPE classification of paediatric endocrine diagnosis. Short stature. Horm Res 86:1–5

    Google Scholar 

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Authors and Affiliations

  1. Department of Medical Psychology, University Medical Center Hamburg – Eppendorf, Martinistr. 52, Building W26, 20246, Hamburg, Germany

    Anja Rohenkohl, Monika Bullinger & Julia Quitmann

  2. Department of Pediatrics, Tergooi Hospital, Blaricum, The Netherlands

    Susanne Stalman & Gerdine Kamp

Authors
  1. Anja Rohenkohl
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  2. Susanne Stalman
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  3. Gerdine Kamp
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  4. Monika Bullinger
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  5. Julia Quitmann
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Corresponding author

Correspondence to Anja Rohenkohl.

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Authors Contributions

AR designed the study with JQ, organized the data management, performed the statistical analysis, interpreted the results, and wrote the draft manuscript. SS conducted the study, collected data, and participated in instrument translation, and in drafting the manuscript. GK provided patient access and clinical data, supervised data collection, reviewed translations, and revised the manuscript. MB revised the manuscripts, supervised study design, and conducted statistical analysis and interpretation of results. JQ participated in designing and managing the study, supervised data collection, and revised the manuscript.

All authors read and approved the final submitted manuscript.

Additional information

Communicated by Jaan Toelen

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Rohenkohl, A., Stalman, S., Kamp, G. et al. Psychometric performance of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire in the Netherlands. Eur J Pediatr 175, 347–354 (2016). https://doi.org/10.1007/s00431-015-2656-8

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  • DOI: https://doi.org/10.1007/s00431-015-2656-8

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