Quality of Life Research

, Volume 22, Issue 10, pp 2877–2888 | Cite as

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

  • M. Niemitz
  • D. C. M. Seitz
  • M. Oebels
  • D. Schranz
  • H. Hövels-Gürich
  • M. Hofbeck
  • R. Kaulitz
  • C. Galm
  • F. Berger
  • N. Nagdymann
  • B. Stiller
  • T. Borth-Bruhns
  • I. Konzag
  • C. Balmer
  • L. Goldbeck
Article

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 r tt = 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 disease Disease-specific instrument Health-related quality of life Parents Pre-school children 

Abbreviations

HD

Heart disease

FOR

Family-orientated rehabilitation

HrQoL

Health-related quality of life

NYHA

New York Heart Association classification system

Notes

Acknowledgments

The study was funded by the Stiftung KinderHerz, Essen, Germany.

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Copyright information

© Springer Science+Business Media Dordrecht 2013

Authors and Affiliations

  • M. Niemitz
    • 1
  • D. C. M. Seitz
    • 1
  • M. Oebels
    • 2
  • D. Schranz
    • 2
  • H. Hövels-Gürich
    • 3
  • M. Hofbeck
    • 4
  • R. Kaulitz
    • 4
  • C. Galm
    • 5
  • F. Berger
    • 6
  • N. Nagdymann
    • 6
  • B. Stiller
    • 7
  • T. Borth-Bruhns
    • 8
  • I. Konzag
    • 9
  • C. Balmer
    • 10
  • L. Goldbeck
    • 1
  1. 1.Department of Child and Adolescent Psychiatry/PsychotherapyUniversity Ulm Medical CentreUlmGermany
  2. 2.Department of Pediatric Cardiac CentreUniversity Medical Centre Gießen MarburgGießenGermany
  3. 3.Department of Pediatric CardiologyUniversity AachenAachenGermany
  4. 4.Department of Pediatric Cardiology, Pulmology and Intensive Care MedicineUniversity Tübingen Medical CentreTübingenGermany
  5. 5.Section of Pediatric CardiologyUniversity UlmUlmGermany
  6. 6.Department of Congenital Heart Diseases/Paediatric CardiologyGerman Cardiology Centre BerlinBerlinGermany
  7. 7.Department of Pediatrics and Adolescent MedicineUniversity Freiburg Medical CentreFreiburgGermany
  8. 8.Pediatric Aftercare-ClinicTannheimGermany
  9. 9.Pediatric Aftercare-clinic Berlin-Brandenburg gGmbHBernau-WaldsiedlungGermany
  10. 10.Department of CardiologyUniversity Children’s HospitalZürichSwitzerland

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