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

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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.

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Abbreviations

HD:

Heart disease

FOR:

Family-orientated rehabilitation

HrQoL:

Health-related quality of life

NYHA:

New York Heart Association classification system

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Acknowledgments

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

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Authors and Affiliations

  1. Department of Child and Adolescent Psychiatry/Psychotherapy, University Ulm Medical Centre, Steinhoevelstr. 1, 89075, Ulm, Germany

    M. Niemitz, D. C. M. Seitz & L. Goldbeck

  2. Department of Pediatric Cardiac Centre, University Medical Centre Gießen Marburg, Gießen, Germany

    M. Oebels & D. Schranz

  3. Department of Pediatric Cardiology, University Aachen, Aachen, Germany

    H. Hövels-Gürich

  4. Department of Pediatric Cardiology, Pulmology and Intensive Care Medicine, University Tübingen Medical Centre, Tübingen, Germany

    M. Hofbeck & R. Kaulitz

  5. Section of Pediatric Cardiology, University Ulm, Ulm, Germany

    C. Galm

  6. Department of Congenital Heart Diseases/Paediatric Cardiology, German Cardiology Centre Berlin, Berlin, Germany

    F. Berger & N. Nagdymann

  7. Department of Pediatrics and Adolescent Medicine, University Freiburg Medical Centre, Freiburg, Germany

    B. Stiller

  8. Pediatric Aftercare-Clinic, Tannheim, Germany

    T. Borth-Bruhns

  9. Pediatric Aftercare-clinic Berlin-Brandenburg gGmbH, Bernau-Waldsiedlung, Germany

    I. Konzag

  10. Department of Cardiology, University Children’s Hospital, Zürich, Switzerland

    C. Balmer

Authors
  1. M. Niemitz
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  2. D. C. M. Seitz
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  3. M. Oebels
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  4. D. Schranz
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  5. H. Hövels-Gürich
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  6. M. Hofbeck
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  7. R. Kaulitz
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  8. C. Galm
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  9. F. Berger
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  14. C. Balmer
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  15. L. Goldbeck
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Correspondence to M. Niemitz.

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Niemitz, M., Seitz, D.C.M., Oebels, M. et al. The development and validation of a health-related quality of life questionnaire for pre-school children with a chronic heart disease. Qual Life Res 22, 2877–2888 (2013). https://doi.org/10.1007/s11136-013-0414-9

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  • DOI: https://doi.org/10.1007/s11136-013-0414-9

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