Quality of Life Research

, Volume 22, Issue 10, pp 2877–2888

The development and validation of a health-related quality of life questionnaire for pre-school children with a chronic heart disease

Authors

    • Department of Child and Adolescent Psychiatry/PsychotherapyUniversity Ulm Medical Centre
  • D. C. M. Seitz
    • Department of Child and Adolescent Psychiatry/PsychotherapyUniversity Ulm Medical Centre
  • M. Oebels
    • Department of Pediatric Cardiac CentreUniversity Medical Centre Gießen Marburg
  • D. Schranz
    • Department of Pediatric Cardiac CentreUniversity Medical Centre Gießen Marburg
  • H. Hövels-Gürich
    • Department of Pediatric CardiologyUniversity Aachen
  • M. Hofbeck
    • Department of Pediatric Cardiology, Pulmology and Intensive Care MedicineUniversity Tübingen Medical Centre
  • R. Kaulitz
    • Department of Pediatric Cardiology, Pulmology and Intensive Care MedicineUniversity Tübingen Medical Centre
  • C. Galm
    • Section of Pediatric CardiologyUniversity Ulm
  • F. Berger
    • Department of Congenital Heart Diseases/Paediatric CardiologyGerman Cardiology Centre Berlin
  • N. Nagdymann
    • Department of Congenital Heart Diseases/Paediatric CardiologyGerman Cardiology Centre Berlin
  • B. Stiller
    • Department of Pediatrics and Adolescent MedicineUniversity Freiburg Medical Centre
  • T. Borth-Bruhns
    • Pediatric Aftercare-Clinic
  • I. Konzag
    • Pediatric Aftercare-clinic Berlin-Brandenburg gGmbH
  • C. Balmer
    • Department of CardiologyUniversity Children’s Hospital
  • L. Goldbeck
    • Department of Child and Adolescent Psychiatry/PsychotherapyUniversity Ulm Medical Centre
Article

DOI: 10.1007/s11136-013-0414-9

Cite this article as:
Niemitz, M., Seitz, D.C.M., Oebels, M. et al. Qual Life Res (2013) 22: 2877. doi:10.1007/s11136-013-0414-9

Abstract

Purpose

Heart diseases are often associated with residual injuries, persisting functional restrictions, and long-term sequelae for psychosocial development. Currently, there are no disease-specific instruments to assess the health-related quality of life (HrQoL) of pre-school children. The aims of this study were to develop a parent proxy instrument to measure the HrQoL of children aged 3–7 years with a heart disease and to confirm its validity and reliability.

Methods

Items from the Preschool Pediatric Cardiac Quality of Life Inventory (P-PCQLI) were generated through focus groups of caregivers. In a pilot study, comprehensibility and feasibility were tested. Five subdimensions were defined theoretically. Psychometric properties were analysed within a multicentre study with 167 parental caregivers.

Results

The final 52-item instrument contains a total score covering five moderately inter-correlated dimensions. The total score of the questionnaire showed a very high internal consistency (Cronbachs’ α = 0.95). Test–retest correlation was at rtt = 0.96. External validity was indicated by higher correlations (r = 0.24–0.68) with a generic paediatric quality of life questionnaire (KINDL) compared to the Strengths and Difficulties Questionnaire (r = 0.17 to 0.59). Low P-PCQLI total scores were significantly associated with inpatient as opposed to outpatient treatment (t = 6.04, p < .001), with at least moderate disease severity ((t = 5.05, p < .001) NYHA classification) and with poorer prognosis (t = 5.53, p < .001) as estimated by the physician.

Conclusions

The P-PCQLI is reliable and valid for pre-school children with a heart disease. It could be used as a screening instrument in routine care, and for evaluation of HrQoL outcomes in clinical trials and intervention research.

Keywords

Chronic heart diseaseDisease-specific instrumentHealth-related quality of lifeParentsPre-school children

Abbreviations

HD

Heart disease

FOR

Family-orientated rehabilitation

HrQoL

Health-related quality of life

NYHA

New York Heart Association classification system

Copyright information

© Springer Science+Business Media Dordrecht 2013