Skip to main content

Advertisement

SpringerLink
Log in

A Brief Version of the Quality of Life in Short Stature Youth Questionnaire - the QoLISSY-Brief

  • Published:
Child Indicators Research Aims and scope Submit manuscript

Abstract

The Quality of Life in Short Stature Youth (QoLISSY) questionnaire measures health-related quality of life (HrQoL) in short statured children (8–18 years) from patient and parent perspectives. To minimize respondent burden when assessing HrQoL in clinical practice, a brief version of the currently available 22-item QoLISSY is needed. The dataset of the European QoLISSY study (N = 268) was divided into two subdatasets at random, one to identify the items of the brief questionnaire and the other to test the operating characteristics (reliability and validity). Concept-based construction involved the selection of three items per Quality of Life (QoL)-dimension (physical, social, emotional) according to the highest corrected item-scale correlation. Psychometric properties were inspected in terms of reliability and validity supplemented by testing item fit statistics to examine item response theory (IRT) compliance. Cronbach’s alpha for the 9-item version was 0.89 for the patient- and the parent report. Pearson’s correlations with the generic KIDSCREEN questionnaire were low to moderate (children: r = 0.17–0.58; parents: r = 0.12–0.56). Shorter children reported significantly poorer QoL (mean difference 15.39 points; p < 0.001) than taller children, indicating known-groups validity. Results from IRT analysis showed an acceptable fit to Masters’ Partial Credit Model. The 9-item QoLISSY brief version has satisfactory operating characteristics and is an efficient alternative for use in research and practice.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Binder, G. (2011). Growth hormone deficiency: new approaches to the diagnosis. Pediatric Endocrinology Reviews, 9, 535–537.

    Google Scholar 

  • Bond, T. G., & Fox, C. M. (2001). Applying the rash model: Fundamental measurement in the human sciences. Mahwah: Erlbaum.

    Google Scholar 

  • Brütt, A. L., Sandberg, D. E., Chaplin, J., Wollmann, H., Noeker, M., Koltowska-Haggstrom, M., & Bullinger, M. (2009). Assessment of health-related quality of life and patient satisfaction in children and adolescents with growth hormone deficiency or idiopathic short stature - part 1: a critical evaluation of available tools. Hormone Research, 72, 65–73. doi:10.1159/000232158.

    Google Scholar 

  • Bullinger, M. (1991). Quality of life: definition, conceptualization and implications—a methodologist’s view. Theoretical Surgery, 6, 143–148.

    Google Scholar 

  • Bullinger, M., Koltowska-Haggstrom, M., Sandberg, D., Chaplin, J., Wollmann, H., Noeker, M., & Brutt, A. L. (2009). Health-related quality of life of children and adolescents with growth hormone deficiency or idiopathic short stature - part 2: available results and future directions. Hormone Research, 72, 74–81. doi:10.1159/000232159.

    Article  Google Scholar 

  • Bullinger, M., Quitmann, J., Power, M., Herdman, M., Mimoun, E., Debusk, K., Chaplin, J. E. (2013). Assessing the quality of life of health-referred children and adolescents with short stature: development and psychometric testing of the QoLISSY instrument. Health and Quality of Life Outcomes, 11. doi: 10.1186/1477-7525-11-76.

  • Cohen, J. (1988). Statistical power analysis for the behavioral sciences. Hillsdale: Lawrence Erlbaum Associates, Inc.

    Google Scholar 

  • Coste, J., Guillemin, F., Pouchot, J., & Fermanian, J. (1997). Methodological approaches to shortening composite measurement scales. Journal of Clinical Epidemiology, 50, 247–252.

    Article  Google Scholar 

  • Cronbach, L. J. (1951). Coefficient alpha and the internal structure of tests. Psychometrica, 16, 297–334.

    Article  Google Scholar 

  • SPSS Inc. (2009). PASW for windows, version 18.0. Chicago: SPSS Inc.

    Google Scholar 

  • Jokovic, A., Locker, D., Guyatt, G. (2006). Short forms of the Child Perceptions Questionnaire for 11-14-year-old children (CPQ11-14): development and initial evaluation. Health and Quality of Life Outcomes, 4. doi: 10.1186/1477-7525-4-4.

  • Las Hayas, C., Quintana, J. M., Padierna, J. A., Bilbao, A., Muñoz, P. (2010). Use of Rasch methodology to develop a short version of the health related quality of life for eating disorders questionnaire: a prospective study. Health Qual Life Outcomes, 29. doi: 10.1186/1477-7525-8-29.

  • Linacre, J. (2009). A user’s guide to WINSTEPS. Chicago: MESA Press.

    Google Scholar 

  • Mair, P., Hatzinger, R., Maier, M. J. (2012). eRm: Extended Rasch Modeling. R package version 0.15-1. Retrieved 30.06.2014, 2014, from http://CRAN.R-project.org/package=eRm.

  • Masters, G. N. (1982). A Rasch model for partial credit scoring. Psychometrika, 47, 149–174.

    Article  Google Scholar 

  • Muehlan, H. (2010). Developing the DCGM-12: A short-form of the DISABKIDS condition-generic module assessing health related quality of life in children and adolescents with chronic conditions (Doctoral Thesis, University of Hamburg, Germany). Retrieved from http://ediss.sub.uni-hamburg.de/volltexte/2010/4923/pdf/DISS_HM_DCGM12_FIN_UPLOAD.pdf.

  • Muthén, L. K., & Muthén, B. O. (2012). Mplus user’s guide (7th ed.). Los Angeles: Muthén & Muthén.

    Google Scholar 

  • Newcombe, P. A., Sheffield, J. K., & Chang, A. B. (2013). Parent cough-specific quality of life: development and validation of a short form. Journal of Allergy and Clinical Immunology, 131, 1069–1074. doi:10.1016/j.jaci.2012.10.004.

    Article  Google Scholar 

  • Pollak, E., Muehlan, H., von Mackensen, S., & Bullinger, M. (2006). The Haemo-QoL index: developing a short measure for health-related quality of life assessment in children and adolescents with haemophilia. Haemophilia, 12, 384–392.

    Article  Google Scholar 

  • Quitmann, J., Rohenkohl, A., Bullinger, M., Chaplin, J., Herdman, M., Dolores, S., & Pleil, A. (2013). Parental perception of health-related quality of life in children and adolescents with short stature: literature review and introduction of the paernt-reported QoLISSY instrument. Pediatric Endocrinology Reviews, 11, 147–160.

    Google Scholar 

  • Ranke, M. B. (1996). Towards a consensus on the definition of idiopathic short stature. Hormone Research, 45, 64–66.

    Article  Google Scholar 

  • Ravens-Sieberer, U., Erhart, M., Rajmil, L., Herdman, M., Auquier, P., Bruil, J., & European KIDSCREEN Group. (2010). Reliability, construct and criterion validity of the KIDSCREEN-10 score: a short measure for children and adolescents’ well-being and health-related quality of life. Quality of Life Research, 19, 1487–1500. doi:10.1007/s11136-010-9706-5.

    Article  Google Scholar 

  • Sandberg, D. E., & Voss, L. D. (2002). The psychosocial consequences of short stature: a review of the evidence. Best Practice & Research Clinical Endocrinology & Metabolism, 6, 449–463.

    Article  Google Scholar 

  • The European QoLISSY Group. (2013). Quality of life in short stature youth. The QoLISSY questionnaire – user’s manual. Lengerich: Pabst Science Publishers.

    Google Scholar 

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

    Google Scholar 

  • Varni, J. W., Burwinkle, T. M., Lane, M. M. (2005). Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health and Quality of Life Outcomes, 3. doi: 10.1186/1477-7525-3-34.

  • Voss, L. D., & Mulligan, J. (2000). Bullying in school: are short pupils at risk? Questionnaire study in a cohort. British Medical Journal, 320, 612–613.

    Article  Google Scholar 

  • Walker, C. M. (2011). What’s the DIF? Why differential item functioning analyses are an important part of instrument development and validation. Journal of Psychoeducational Assessment, 29, 364–376.

    Article  Google Scholar 

  • Wit, J. M., Clayton, P. E., Rogol, A. D., Savage, M. O., Saenger, P. H., & Cohen, P. (2008). Idiopathic short stature: definition, epidemiology, and diagnostic evaluation. [Review]. Growth Hormone & IGF Research, 18, 89–110. doi:10.1016/j.ghir.2007.11.004.

    Article  Google Scholar 

  • Wong, G., Wai Lam, S., Ngai, K., Wong, A., Poon, W. S., Mok, V. (2013). Development of a short form of stroke-specific quality of life scale for patients after aneurysmal subarachnoid hemorrhage. Journal of the Neurological Sciences, Article in press.

  • World Health Organization. (1946). Preamble to the constitution of the world health organization. New York: Paper presented at the International Health Conference.

    Google Scholar 

  • World Health Organization. (1996). WHOQOL-BREF. Introduction, administration, scoring and generic version of teh assessment. Geneva.

Download references

Acknowledgments

The QoLISSY study group, in addition to the German team of Monika Bullinger and Julia Quitmann (University Medical Centre Hamburg-Eppendorf, Department of Medical Psychology, Hamburg, Germany), includes John E. Chaplin (Sahlgrenska Academy at University of Gothenburg, Department of Paediatrics, Växthuset, Queen Silvia’s Children’s Hospital, Gothenburg, Sweden), Michael Herdman (IMIM University, Insight Consulting and Research, Barcelona, Spain), Emmanuelle Mimoun (Children’s Hospital of Toulouse, Department of Pediatric Endocrinology, Toulouse, France), Andreas Pleil (Pfizer, Inc. Outcomes and Evidence, Global Health &Value, San Diego, CA), Hartmut Wollmann (University of Tuebingen formerly of Pfizer Ltd, Walton Oaks, UK) and Michael Power (Rivers Trauma Centre, Royal Edinburgh Hospital, Edinburgh). We thank Dr. Joseph C. Cappelleri from Pfizer Inc for his review of the manuscript. The original QoLISSY Development study was funded by Pfizer, Inc. Dr. Andreas Pleil is a full time employee of Pfizer. No authors received payment for their contributions to this manuscript.

Author information

Authors and Affiliations

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

    Anja C. Rohenkohl, Monika Bullinger, Levente Kriston & Julia H. Quitmann

  2. Global Health & Value Pfizer, Inc, San Diego, CA, USA

    Andreas M. Pleil

Authors
  1. Anja C. Rohenkohl
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Monika Bullinger
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Andreas M. Pleil
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Levente Kriston
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Julia H. Quitmann
    View author publications

    You can also search for this author in PubMed Google Scholar

Consortia

the QoLISSY Study Group

Corresponding author

Correspondence to Anja C. Rohenkohl.

Electronic supplementary material

Below is the link to the electronic supplementary material.

ESM 1

(DOCX 68 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Rohenkohl, A.C., Bullinger, M., Pleil, A.M. et al. A Brief Version of the Quality of Life in Short Stature Youth Questionnaire - the QoLISSY-Brief. Child Ind Res 9, 971–984 (2016). https://doi.org/10.1007/s12187-015-9350-2

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12187-015-9350-2

Keywords

Search

Navigation