Validation of the Greek version of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire
-
Chrysoula Drosatou
, Elpis-Athina Vlachopapadopoulou
, Stefanos Michalacos
Abstract
Background
The Quality of Life in Short Stature Youth (QoLISSY) questionnaire is a condition-specific instrument for measuring the health-related quality of life (HRQoL) in short statured children/adolescents from patients’ and parents’ perspectives. The aim of this study was to investigate the psychometric properties of the Greek version of the QoLISSY questionnaire.
Methods
The original European QoLISSY scales were translated into Greek following the guidelines for linguistic validation and applied to 184 dyads of children 8–18 years old and their parents, as well as to 14 parents of children 4–7 years old in Greece. The field testing responses to the Greek version of QoLISSY were analyzed.
Results
The qualitative analysis of the Greek data provided results consistent with the European sample. The subsequent field test showed acceptable internal consistency (Cronbach α between 0.67–0.93) and high test-retest reliability (intraclass correlation coefficients [ICC] ≥0.70). Correlations with the generic KIDSCREEN questionnaire indicated good convergent validity. Confirmatory factor analysis (CFA) also yielded acceptable results. Higher HRQoL for taller children suggests that QoLISSY was able to detect significant height-related differences.
Conclusions
The Greek version of the QoLISSY questionnaire is psychometrically sound and its use is recommended in further clinical research to ascertain the impact of short stature (SS) and treatments in Greek children/adolescents and families.
Acknowledgments
The authors would like to thank the QoLISSY study group and the participating families and staff of the clinical center for their support and contributions, as well as Dr Apostolos Prodromidis for his contribution to the study design, for providing a courtesy review and proof-reading of the manuscript and Ms Chara Tzavara for her contribution to the statistical analysis.
Availability of data and supporting materials: Access to the QoLISSY instrument: QoLISSY is a joint initiative between Pfizer and the University Medical Center Hamburg – Eppendorf. Copyright Pfizer Limited all rights reserved. The European QoLISSY instrument, together with comprehensive information of its development and validation process, is published in the QoLISSY User’s Manual (Pabst Science Publishers, Lengerich, 2013). The manual, which is available upon request, includes QoLISSY child and parent forms, as well as scoring information.
Author contributions: All the authors have accepted responsibility for the entire content of this submitted manuscript and approved submission.
Individual contributions: Designed the study: CD, MB, JQ and SM. Participated in the instrument translation: CD, EV and IP. Provided patient access and clinical data: EV and SM. Collected data: CD, EV and GS. Supervised the study design and data collection: KT. Managed data entry: CD and IP. Performed the analysis: CD, NS and SM. Interpreted the results: CD, MB, JQ and NS. Wrote the draft manuscript: CD. Contributed to the preparation and review of the manuscript: EV, MB, JQ, NS, GS and KT.
Ethical approval: The study has been approved by the appropriate Ethics Committees and has, therefore, been performed in accordance with the ethical standard laid down in the 1964 Declaration of Helsinki and its later amendments.
Informed consent was obtained from all individual participants included in the study. Parents consented and children older than 8 gave assent.
Research funding: None declared.
Employment or leadership: None declared.
Honorarium: None declared.
Competing interests: None declared.
References
1. Brutt AL, Sandberg DE, Chaplin J, Wollmann H, Noeker M, et al. 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. Horm Res 2009;72:65–73.10.1159/000232158Search in Google Scholar PubMed
2. Hwang J-W, Seo J-Y. Parents’ perception about child’s height and psychopathology in community children with relatively short stature. Ann Pediatr Endocrinol Metab 2015;20:79–85.10.6065/apem.2015.20.2.79Search in Google Scholar PubMed PubMed Central
3. Cohen P, Rogol A, Deal C, Saenger P, Reiter E, et al. 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 Endocrinol Metab 2008;93:4210–7.10.1210/jc.2008-0509Search in Google Scholar PubMed
4. Loftus J, Heatley R, Walsh C, Dimitri P. Systematic review of the clinical effectiveness of Genotropin (somatropin) in children with short stature. J Pediatr Endocrinol Metab 2010;23: 535–51.10.1515/jpem.2010.092Search in Google Scholar PubMed
5. Voss LD, Mulligan J. Bullying in school: are short pupils at risk? Questionnaire study in a cohort. Br Med J 2000;320:612–3.10.1136/bmj.320.7235.612Search in Google Scholar PubMed PubMed Central
6. Christensen TL, Djurhuus CB, Clayton P, Christiansen JS. An evaluation of the relationship between adult height and health-related quality of life in the general UK population. Clin Endocrinol (Oxf) 2007;67:407–12.10.1111/j.1365-2265.2007.02901.xSearch in Google Scholar PubMed
7. Brod M, Alolga SL, Beck JF, Wilkinson L, Hojbjerre L, et al. Understanding burden of illness for child growth hormone deficiency. Qual Life Res 2017;26:1673–86.10.1007/s11136-017-1529-1Search in Google Scholar PubMed PubMed Central
8. Bullinger M, Koltowska-Haggstrom M, Sandberg D, Chaplin J, Wollmann H, et al. Health-related quality of life of children and adolescents with growth hormone deficiency or idiopathic short stature – part 2: available results and future directions. Horm Res 2009;72:74–81.10.1159/000232159Search in Google Scholar PubMed
9. Visser-van Balen H, Sinnema G, Geenen R. Growing up with idiopathic short stature: psychosocial development and hormone treatment; a critical review. Arch Dis Child 2006;91:433–9.10.1136/adc.2005.086942Search in Google Scholar PubMed PubMed Central
10. Sandberg DE, Voss LD. The psychosocial consequences of short stature: a review of the evidence. Best Pract Res Clin Endocrinol Metab 2002;16:449–63.10.1053/beem.2002.0211Search in Google Scholar PubMed
11. Sandberg DE, Colsman M. Growth hormone treatment of short stature: status of the quality of life rationale. Horm Res 2005;63:275–83.10.1159/000086593Search in Google Scholar
12. Bannink EM, van Pareren YK, Theunissen NC, Raat H, Mulder PG, et al. Quality of life in adolescents born small for gestational age: does growth hormone make a difference? Horm Res 2005;64:166–74.10.1159/000088792Search in Google Scholar
13. Mobbs EJ. The psychological outcome of constitutional delay of growth and puberty. Horm Res 2005;63(Suppl 1):1–66.10.1159/isbn.978-3-318-01225-5Search in Google Scholar
14. Ross JL, Sandberg DE, Rose SR, Leschek EW, Baron J, et al. Psychological adaptation in children with idiopathic short stature treated with growth hormone or placebo. J Clinc Endocrinol Metab 2004;89:4873–8.10.1210/jc.2004-0791Search in Google Scholar
15. Sommer R, Daubmann A, Quitmann J, Ravens-Sieberer U, Bullinger M. Understanding the impact of statural height on health-related quality of life in German adolescents: a population-based analysis. Eur J Pediatr 2015;174:875–82.10.1007/s00431-014-2480-6Search in Google Scholar
16. Lindsay R, Feldkamp M, Harris D, Robertson J, Rallison M. Utah Growth Study: growth standards and the prevalence of growth hormone deficiency. J Pediatr 1994;125:29–35.10.1016/S0022-3476(94)70117-2Search in Google Scholar
17. Ranke MB. Towards a consensus on the definition of idiopathic short stature. Horm Res 1996;45(Suppl 2):64–6.10.1159/000184851Search in Google Scholar PubMed
18. Wit JM, Clayton PE, Rogol AD, Savage MO, Saenger PH, et al. Idiopathic short stature: definition, epidemiology, and diagnostic evaluation. Growth Horm IGF Res 2008;18:89–110.10.1016/j.ghir.2007.11.004Search in Google Scholar PubMed
19. Bryant J, Baxter L, Cave CB, Milne R. Recombinant growth hormone for idiopathic short stature in children and adolescents. Cochrane Database Syst Rev 2007;18:CD004440.10.1002/14651858.CD004440Search in Google Scholar PubMed
20. Quitmann J, Rohenkohl A, Sommer R, Bullinger M, Silva N. Explaining parent-child (dis) agreement in generic and short stature-specific health-related quality of life reports: do family and social relationships matter? Health Qual Life Outcomes 2016;14:150.10.1186/s12955-016-0553-0Search in Google Scholar PubMed PubMed Central
21. Group EQ. Quality of life in short stature youth. The QoLISSY questionnaire–user’s manual. Pabst Science Publishers Lengerich, 2013.Search in Google Scholar
22. Bullinger M, Quitmann J, Power M, Herdman M, Mimoun E, et al. 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 2013;11:76.10.1186/1477-7525-11-76Search in Google Scholar PubMed PubMed Central
23. Bullinger M, Quitmann J, Silva N, Rohenkohl A, Chaplin JE, et al. Cross-cultural equivalence of the patient-and parent-reported Quality of Life In Short Stature Youth (QoLISSY) Questionnaire. Horm Res Paediatr 2014;82:18–30.10.1159/000358832Search in Google Scholar PubMed
24. Wild D, Grove A, Martin M, Eremenco S, McElroy S, et al. Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: report of the ISPOR Task Force for Translation and Cultural Adaptation. Value Health 2005;8:94–104.10.1111/j.1524-4733.2005.04054.xSearch in Google Scholar PubMed
25. Bullinger M, Sommer R, Pleil A, Mauras N, Ross J, et al. Evaluation of the American-English quality of life in short stature youth (QoLISSY) questionnaire in the United States. Health Qual Life Outcomes 2015;13:43.10.1186/s12955-015-0236-2Search in Google Scholar PubMed PubMed Central
26. Rohenkohl A, De Schepper J, Vanderfaeillie J, Fricke K, Hendrickx S, et al. Validation of the Flemish version of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire. Acta Clin Belg 2014;69:177–82.10.1179/2295333714Y.0000000024Search in Google Scholar PubMed
27. Rohenkohl A, Stalman S, Kamp G, Bullinger M, Quitmann J. Psychometric performance of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire in the Netherlands. Eur J Pediatr 2016;175:347–54.10.1007/s00431-015-2656-8Search in Google Scholar PubMed
28. Quitmann J, Giammarco A, Maghnie M, Napoli F, Di Giovanni I, et al. Validation of the Italian quality of life in short stature youth (QoLISSY) questionnaire. J Endocrinol Invest 2017;40:1077–84.10.1007/s40618-017-0667-1Search in Google Scholar PubMed
29. Ravens-Sieberer U, Europe KG. The Kidscreen questionnaires: quality of life questionnaires for children and adolescents; handbook: Pabst Science Publ., 2006.Search in Google Scholar
30. Tavakol M, Dennick R. Making sense of Cronbach’s alpha. Int J Med Educ 2011;2:53.10.5116/ijme.4dfb.8dfdSearch in Google Scholar PubMed PubMed Central
31. Mueller RO. Basic principles of structural equation modeling: an introduction to LISREL and EQS. New York, USA: Springer Science & Business Media, 1999.Search in Google Scholar
32. Hu Lt, Bentler PM. Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Struct Equ Modeling 1999;6:1–55.10.1080/10705519909540118Search in Google Scholar
33. McGraw KO, Wong SP. Forming inferences about some intraclass correlation coefficients. Psychol Methods 1996;1:30.10.1037/1082-989X.1.1.30Search in Google Scholar
34. Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics 1977;33:159–74.10.2307/2529310Search in Google Scholar
35. Terwee CB, Bot SD, de Boer MR, van der Windt DA, Knol DL, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol 2007;60:34–42.10.1016/j.jclinepi.2006.03.012Search in Google Scholar PubMed
36. Patrick DL, Burke LB, Powers JH, Scott JA, Rock EP, et al. Patient-reported outcomes to support medical product labeling claims: FDA perspective. Value Health 2007; 10(Suppl 2):S125–37.10.1111/j.1524-4733.2007.00275.xSearch in Google Scholar PubMed
37. Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes 2005;3:34.10.1186/1477-7525-3-34Search in Google Scholar PubMed PubMed Central
38. Eiser C, Morse R. Can parents rate their child’s health-related quality of life? Results of a systematic review. Qual Life Res 2001;10:347–57.10.1023/A:1012253723272Search in Google Scholar
39. Stephen MD, Varni JW, Limbers CA, Yafi M, Heptulla RA, et al. Health-related quality of life and cognitive functioning in pediatric short stature: comparison of growth-hormone-naive, growth-hormone-treated, and healthy samples. Eur J Pediatr 2011;170:351–8.10.1007/s00431-010-1299-zSearch in Google Scholar PubMed
40. Goldbeck L, Melches J. Quality of life in families of children with congenital heart disease. Qual Life Res 2005;14:1915–24.10.1007/s11136-005-4327-0Search in Google Scholar PubMed
41. Cremeens J, Eiser C, Blades M. Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™) Generic Core Scales. Health Qual Life Outcomes 2006;4:58.10.1186/1477-7525-4-58Search in Google Scholar PubMed PubMed Central
©2019 Walter de Gruyter GmbH, Berlin/Boston
Articles in the same Issue
- Frontmatter
- Original Articles
- Improved adherence and growth outcomes with jet-delivered growth hormone
- Validation of the Greek version of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire
- Growth hormone deficiency in children with antenatal Bartter syndrome
- Physical growth and development characteristics of children with Williams syndrome aged 0–24 months in Zhejiang Province
- Adiposity and adipocytokines: the moderator role of cardiorespiratory fitness and pubertal stage in girls
- Serum omentin-1 levels in obese children
- A pilot study on newborn screening for congenital adrenal hyperplasia in Beijing
- Typical characteristics of children with congenital adrenal hyperplasia due to 11β-hydroxylase deficiency: a single-centre experience and review of the literature
- Studying the effect of large neutral amino acid supplements on oxidative stress in phenylketonuric patients
- The effect of therapy on plasma ghrelin and leptin levels, and appetite in children with iron deficiency anemia
- The effect of PKU diet on the maternal quality of life and social discrimination in relation to their educational status and place of living
- Evaluating the four most important salivary sex steroids during male puberty: testosterone best characterizes pubertal development
- Case Reports
- Identification of two novel TPK1 gene mutations in a Chinese patient with thiamine pyrophosphokinase deficiency undergoing whole exome sequencing
- A rare case of congenital hyperinsulinism (CHI) due to dual genetic aetiology involving HNF4A and ABCC8
- Cinacalcet therapy in an infant with an R185Q calcium-sensing receptor mutation causing hyperparathyroidism: a case report and review of the literature
Articles in the same Issue
- Frontmatter
- Original Articles
- Improved adherence and growth outcomes with jet-delivered growth hormone
- Validation of the Greek version of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire
- Growth hormone deficiency in children with antenatal Bartter syndrome
- Physical growth and development characteristics of children with Williams syndrome aged 0–24 months in Zhejiang Province
- Adiposity and adipocytokines: the moderator role of cardiorespiratory fitness and pubertal stage in girls
- Serum omentin-1 levels in obese children
- A pilot study on newborn screening for congenital adrenal hyperplasia in Beijing
- Typical characteristics of children with congenital adrenal hyperplasia due to 11β-hydroxylase deficiency: a single-centre experience and review of the literature
- Studying the effect of large neutral amino acid supplements on oxidative stress in phenylketonuric patients
- The effect of therapy on plasma ghrelin and leptin levels, and appetite in children with iron deficiency anemia
- The effect of PKU diet on the maternal quality of life and social discrimination in relation to their educational status and place of living
- Evaluating the four most important salivary sex steroids during male puberty: testosterone best characterizes pubertal development
- Case Reports
- Identification of two novel TPK1 gene mutations in a Chinese patient with thiamine pyrophosphokinase deficiency undergoing whole exome sequencing
- A rare case of congenital hyperinsulinism (CHI) due to dual genetic aetiology involving HNF4A and ABCC8
- Cinacalcet therapy in an infant with an R185Q calcium-sensing receptor mutation causing hyperparathyroidism: a case report and review of the literature