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01-12-2013 | Uitgave 10/2013

Quality of Life Research 10/2013

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

Tijdschrift:
Quality of Life Research > Uitgave 10/2013
Auteurs:
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

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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