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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- Niemitz, M., Seitz, D.C.M., Oebels, M. et al. Qual Life Res (2013) 22: 2877. doi:10.1007/s11136-013-0414-9
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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.
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.
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.
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.
KeywordsChronic heart diseaseDisease-specific instrumentHealth-related quality of lifeParentsPre-school children
Health-related quality of life
New York Heart Association classification system