Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

At a glance: The ONWARDS insulin icodec trials

A round-up of the ONWARDS phase 3 clinical trials evaluating the novel weekly insulin icodec in people with diabetes.
ADVANCED SEARCH
Log in
Top
Quality of Life Research
Published in: Quality of Life Research 2/2019

Open Access 01-02-2019

Development and construct validation of a parent-proxy quality of life instrument in children with bronchopulmonary dysplasia aged 4–8 years old

Authors: Lysbert Meijer-Schaap, Anthony E. J. Dubois, Boudewijn J. Kollen, Jet Tijmens-van der Hulst, Bertine M. J. Flokstra-de Blok, Elianne J. L. E. Vrijlandt

Published in: Quality of Life Research | Issue 2/2019

Login to get access

Abstract

Purpose

Children with bronchopulmonary dysplasia often develop complications that affect them well into adult life. Very little is known about how this affects their quality of life, since no sensitive instrument is available to measure health-related quality of life in this population. In this study, a Dutch parent-proxy instrument was developed for this purpose.

Methods

A list of items was generated after literature search and interviews with both parents of patients and clinical experts. Clinically relevant items were selected with the clinical impact method and item analysis. Results of clinical tests to measure complications in children with bronchopulmonary dysplasia were correlated with these items to select the items that show construct validity. Cronbach’s alpha was calculated to estimate internal consistency of the items in the final questionnaire.

Results

In total, 92 children and their parents and 7 clinicians participated. Of 130 identified items, 47 showed clinical relevance. Spirometry, the Child Behavior Checklist, mean arterial pressure, and body mass index were used to determine construct validity of 33 items. These items were structured within five domains: pulmonary complaints, school functioning, growth and nutrition, exercise and locomotion, emotional functioning and health care concerns. The questionnaire showed excellent internal consistency with Cronbach’s alpha of 0.919.

Conclusion

This study developed a disease-specific parent-proxy instrument to measure health-related quality of life in children with bronchopulmonary dysplasia aged 4–8 years old, the BPD-QoL. All included items show construct validity and internal consistency reliability. Future research should focus on further validation and analysis of responsiveness and reliability.
Appendix
Available only for authorised users
Literature
1.
Northway, W. H., Rosan, R. C., & Porter, D. Y. (1967). Pulmonary disease following respirator therapy of hyaline-membrane disease. The New England Journal of Medicine, 276(7), 357–368.CrossRefPubMed
2.
Northway, W. H., Moss, R. B., Carlisle, K. B., Parker, B. R., Popp, R. L., Pitlick, P. T., Eichler, I., Lamm, R. L., & Brown, B. W. (1990). Late pulmonary sequelae of bronchopulmonary dysplasia. The New England Journal of Medicine, 323(26), 1793–1799.CrossRefPubMed
3.
Kramer, B. W., Lievense, S., Been, J. V., & Zimmermann, L. J. (2010). From classic to new bronchopulmonary dysplasia. Nederlands Tijdschrift voor Geneeskunde, 154, A1024.PubMed
4.
Jobe, A. H., & Bancalari, E. (2001). Bronchopulmonary dysplasia. American Journal of Respiratory and Critical Care Medicine, 163(7), 1723–1729.CrossRefPubMed
5.
Ehrenkranz, R. A., Walsh, M. C., Vohr, B. R., Jobe, A. H., Wright, L. L., Fanaroff, A. A., Wrage, L. A., & Poole, K. (2005). Validation of the National Institutes of Health consensus definition of bronchopulmonary dysplasia. Pediatrics, 116(6), 1353–1360.CrossRefPubMed
6.
Stoll, B. J., Hansen, N. I., Bell, E. F., Shankaran, S., Laptook, A. R., Walsh, M. C., et al. (2010). Neonatal outcomes of extremely preterm infants from the NICHD Neonatal Research Network. Pediatrics, 126(3), 443–456.CrossRefPubMed
7.
Walsh, M. C., Yao, Q., Gettner, P., Hale, E., Collins, M., Hensman, A., et al. (2004). Impact of a physiologic definition on bronchopulmonary dysplasia rates. Pediatrics, 114(5), 1305–1311.CrossRefPubMed
8.
Islam, J. Y., Keller, R. L., Aschner, J. L., Hartert, T. V., & Moore, P. E. (2015). Understanding the short- and long-term respiratory outcomes of prematurtiy and bronchopulmonary dysplasia. American Journal of Respiratory and Critical Care Medicine, 192(2), 134–156.CrossRefPubMedPubMedCentral
9.
Kramer, B. W., Lievense, S., Been, J. V., & Zimmerman, L. J. (2010). From classic to new bronchopulmonary dysplasia. Nederlands Tijdschrift voor Geneeskunde, 154, A1024.PubMed
10.
Doyle, L. W., Faber, B., Callanan, C., Freezer, N., Ford, G. W., & Davis, N. M. (2006). Bronchopulmonary dysplasia in very low birth weight subjects and lung function in late adolescence. Pediatrics, 118(1), 108–113.CrossRefPubMed
11.
Bader, D., Ramos, A. D., Lew, C. D., Platzker, A. C. G., Stabile, M. W., & Keens, T. G. (1987). Childhood sequelae of infant lung disease: Exercise and pulmonary function abnormalities after bronchopulmonary dysplasia. Journal of Pediatrics, 110(5), 693–699.CrossRefPubMed
12.
Vrijlandt, E. J., Gerritsen, J., Boezen, H. M., Grevink, R. G., & Duiverman, E. J. (2006). Lung function and exercise capacity in young adults born prematurely. American Journal of Respiratory and Critical Care Medicine, 173(8), 890–896.CrossRefPubMed
13.
Kinsella, J. P., Greenough, A., & Abman, S. H. (2006). Bronchopulmonary dysplasia. The Lancet, 67(9520), 1421–1431.CrossRef
14.
Lenfant, C. (2000). Lung biology in health and disease. New York: Marcel Dekker Inc.
15.
Khemani, E., McElhinney, D. B., Rhein, L., Andrade, O., Lacro, R. V., Thomas, K. C., & Mullen, M. P. (2007). Pulmonary artery hypertension in formerly premature infants with bronchopulmonary dysplasia: Clinical features and outcomes in the surfactant era. Pediatrics, 120(6), 1260–1269.CrossRefPubMed
16.
Short, E. J., Klein, N. K., Lewis, B. A., Fulton, S., Eisengart, S., Kercsmar, C., Baley, J., & Singer, L. T. (2003). Cognitive and academic consequences of bronchopulmonary dysplasia and very low birth weight: 8-year-old outcomes. Pediatrics. 112(5), e359.CrossRefPubMed
17.
Short, E. J., Kirchner, H. L., Asaad, G. R., Fulton, S. E., Lewis, B. A., Klein, N., et al. (2007). Developmental sequelae in preterm infants having a diagnosis of bronchopulmonary dysplasia: Analysis using a severity-based classification system. Archives of Pediatrics & Adolescent Medicine, 161(11), 1082–1087.CrossRef
18.
Vrlenich, L. A., Bozynski, M. E., Shyr, Y., Schork, M. A., Roloff, D. W., & McCormick, M. C. (1995). The effect of bronchopulmonary dysplasia on growth at school age. Pediatrics, 95(6), 855–859.PubMed
19.
Theile, A. R., Radmacher, P. G., Anschutz, T. W., Davis, D. W., & Adamkin, D. H. (2012). Nutritional strategies and growth in extremely low birth weight infants with bronchopulmonary dysplasia over the past 10 years. Journal of Perinatology, 32(2), 117–122.CrossRefPubMed
20.
Gray, P. H., O’Callaghan, M. J., & Poulsen, L. (2008). Behaviour and quality of life at school age of children who had bronchopulmonary dysplasia. Early Human Development, 84(1), 1–8.CrossRefPubMed
21.
Beaudoin, S., Tremblay, G. M., Croitoru, D., Benedetti, A., & Landry, J. S. (2013). Healthcare utilization and health-related quality of life of adult survivors of preterm birth complicated by bronchopulmonary dysplasia. Acta Paediatrica, 102(6), 607–612.CrossRefPubMed
22.
Bozzetto, S., Carraro, S., Tomasi, L., Berardi, M., Zanconato, S., & Baraldi, E. (2016). Health-related quality of life in adolescent survivors of bronchopulmonary dysplasia. Respirology, 21(6), 1113–1117.CrossRefPubMed
23.
Gough, A., Linden, M., Spence, D., Patterson, C. C., Halliday, H. L., & McGarvey, L. P. A. (2013). Impaired lung function and health status in adult survivors of bronchopulmonary dysplasia. The European Respiratoiry Journal, 43(3), 808–816.CrossRef
24.
Sriram, S., Schreiber, M. D., Msall, M. E., Kuban, K. C. K., Joseph, R. M., O’Shea, T. M., et al. (2018). Cognitive development and quality of life associated with BPD in 10-year-olds born preterm. Pediatrics. 141(6), e20172719.CrossRefPubMed
25.
Guyatt, G. H., Feeny, D. H., & Patrick, D. L. (1993). Measuring health-related quality of life. Annals of Internal Medicine, 118(8), 622–629.CrossRefPubMed
26.
Loonen, H. J., Derkx, B. H., & Otley, A. R. (2001). Measuring health-related quality of life of pediatric patients. Journal of Pediatric Gastroenterology and Nutrition, 32(5), 523–526.CrossRefPubMed
27.
Quittner, A. L., Modi, A., & Cruz, I. (2008). Systematic review of health-related quality of life measures for children with respiratory conditions. Paediatric Respiratory Reviews, 9(3), 220–232.CrossRefPubMed
28.
Eiser, C., Mohay, H., & Morse, R. (2000). The measurement of quality of life in young children. Child: Care, Health and Development, 26(5), 401–414.
29.
Eiser, C., & Morse, R. (2001). A review of measures of quality of life for children with chronic illness. Archives of Disease in Childhood, 84(3), 205–211.CrossRefPubMedPubMedCentral
30.
Matza, L. S., Patrick, D. L., Riley, A. W., Alexander, J. J., Ramjil, L., Pleil, A. M., & Bullinger, M. (2013). Pediatric patient-reported outcome instruments for research to support medical product labeling: Report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. Value in Health, 16(4), 461–479.CrossRefPubMed
31.
Allen, J., Zwerdling, R., Ehrenkranz, R., Gaultier, C., Geggel, R., Greenough, A., et al. (2003). Statement on the care of the child with chronic lung disease of infancy and childhood. American Journal of Respiratory and Critical Care Medicine, 168(3), 356–396.CrossRefPubMed
32.
Juniper, E. F., Guyatt, G. H., & Jaeschke, R. (1996). How to develop and validate a new health-related quality of life instrument. In B. Spilker (Ed.), Quality of life and pharmacoeconomics in clinical trials (2nd ed., pp. 49–56). Philadelphia: Lippincott-Raven Publishers.
33.
Juniper, E. F., Guyatt, G. H., Streiner, D. L., & King, D. R. (1997). Clinical impact versus factor analysis for quality of life questionnaire construction. Journal of Clinical Epidemiology, 50(3), 233–238.CrossRefPubMed
34.
Newcombe, P. A., Sheffield, J. K., Juniper, E. F., Marchant, J. M., Halsted, R. A., Masters, I. B., & Chang, A. B. (2008). Development of a parent-proxy quality-of-life chronic cough-specific questionnaire: Clinical impact vs psychometric evaluations. Chest, 133(2), 386–395.CrossRefPubMed
35.
Field, A. (2009). Exploratory factor analysis. In A. Field (Ed.), Discovering statistics using SPSS (3th ed., pp. 627–685). London: SAGE.
36.
Stanojevic, S., Wade, A., Cole, T. J., Lum, S., Custovic, A., Silverman, M., et al. (2009). Spirometry centile charts for young Caucasian children: The Asthma UK Collaborative Initiative. American Journal of Respiratory and Critical Care Medicine, 180(6), 547–552.CrossRefPubMed
37.
38.
Achenbach, T. M., & Rescorla, L. A. (2001). Manual for the ASEBA school-age forms & profiles. Burlington: University of Vermont, Research Center for Children, Youth, & Families.
39.
Achenbach, T. M., & Rescorla, L. A. (2000). Manual for the ASEBA Preschool Forms & Profiles. Burlington: University of Vermont, Research Center for Children, Youth, & Families.
40.
Clark, L. A., & Watson, D. (1995). Constructing validity: Basic issues in objective scale development. Psychological Assessment, 7(3), 309–319.CrossRef
41.
Floyd, F. J., & Widaman, K. F. (1995). Factor analysis in the development and refinement of clinical assessment instruments. Psychological Assessment, 7(3), 286–299.CrossRef
42.
Cronbach, L. J. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16, 297–334.CrossRef
43.
Brod, M., Tesler, L. E., & Christensen, T. L. (2009). Qualitative research and content validity: Developing best practices based on science and experience. Quality of Life Research, 18(9), 1263–1278.CrossRefPubMed
44.
Flokstra-de Blok, B. M. J., DunnGalvin, A., Vlieg-Boerstra, B. J., Oude Elberink, J. N. G., Duiverman, E. J., Hourihane, J. O., & Dubois, A. E. J. (2009). Development and validation of a self-administered Food Allergy Quality of Life Questionnaire for children. Clinical & Expirimental Allergy, 39, 127–137.CrossRef
45.
Landgraf, J. M., & Abetz, L. N. (1996). Measuring health outcomes in pediatric populations: Issues in psychometrics and application. In B. Spilker (Ed.), Quality of life and pharmacoeconomics in clinical trials (2nd ed., pp. 793–802). Philadelphia: Lippincott-Raven Publishers.
46.
Henry, B., Aussage, P., Grosskopf, C., & Goehrs, J. M. (2003). Development of the Cystic Fibrosis Questionnaire (CFQ) for assessing quality of life in pediatric and adult patients. Quality of Life Research, 12, 63–76.CrossRefPubMed
47.
Juniper, E. F., Wisniewski, M. E., Cox, F. M., Emmett, A. H.,. Nielsen, K. E., & O’Byrne, P. M. (2004). Relationship between quality of life and clinical status in asthma: A factor analysis. The European Respiratory Journal, 23(2), 287–291.CrossRefPubMed
48.
Juniper, E. F., Guyatt, G. H., Feeny, D. H., Ferrie, P. J., Griffith, L. E., & Townsend, M. (1996). Measuring quality of life in children with asthma. Quality of Life Research, 5(1), 35–46.CrossRefPubMed
49.
Chang, A. B., Phelan, P. D., Robertson, C. F., Roberts, R. G., & Sawyer, S. M. (2003). Relation between measurements of cough severity. Archives of Disease in Childhood, 88(1), 57–60.CrossRefPubMedPubMedCentral
50.
Nicolarsen, J., & Dunbar Ivy, D. (2014). Progress in the diagnosis and management of pulmonary hypertension in children. Current Opinion in Pediatrics, 26(5), 527–535.CrossRefPubMedPubMedCentral
51.
Patrick, D. L., Burke, L. B., Gwaltney, C. J., Kline Leidy, N., Martin, M. L., Molsen, E., & Ring, L. (2011). Content validity—Establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: Part 1—Eliciting concepts for a New PRO Instrument. Value in Health, 14(8), 967–977.CrossRefPubMed
52.
Terwee, C. B., Bot, S. D. M., de Boer, M. R., van der Windt, D. A. W. M., Knol, D. L., Dekker, J., Bouter, L. M., & de Vet, H. C. W. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology, 60(1), 34–42.CrossRefPubMed
53.
Theunissen, N. C., Vogels, T. G., Koopman, H. M., Verrips, G. H., Zwinderman, K. A., Verloove-Vanhorick, S. P., & Wit, J. M. (1998). The proxy problem: Child report versus parent report in health-related quality of life research. Quality of Life Research, 7(5), 387–397.CrossRefPubMed
54.
Bullinger, M., Anderson, R., Cella, D., & Aaronson, N. (1993). Developing and evaluating cross-cultural instruments from minimum requirements to optimal models. Quality of Life Research, 2(6), 451–459.CrossRefPubMed
Metadata
Title
Development and construct validation of a parent-proxy quality of life instrument in children with bronchopulmonary dysplasia aged 4–8 years old
Authors
Lysbert Meijer-Schaap
Anthony E. J. Dubois
Boudewijn J. Kollen
Jet Tijmens-van der Hulst
Bertine M. J. Flokstra-de Blok
Elianne J. L. E. Vrijlandt
Publication date
01-02-2019
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 2/2019
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-018-2029-7

Other articles of this Issue 2/2019

Quality of Life Research 2/2019 Go to the issue

OriginalPaper

Appraisal of patient-reported outcome measures in analogous diseases and recommendations for use in phase II and III clinical trials of pyruvate kinase deficiency

OriginalPaper

The paradox of self-rated health following joint replacement surgery

Brief Communication

Association between disaster experience and quality of life: the mediating role of disaster risk perception

OriginalPaper

Test–retest reliability and validity of a single-item Self-reported Family Happiness Scale in Hong Kong Chinese: findings from Hong Kong Jockey Club FAMILY Project

OriginalPaper

Anxiety, depression and quality of life in chronic obstructive pulmonary disease patients and caregivers: an actor–partner interdependence model analysis

Review

Problems persist in reporting of methods and results for the WOMAC measure in hip and knee osteoarthritis trials