The Development and Validation of a Health-related Quality of Life Questionnaire for Pre-school Children with a Chronic Heart Disease

Overview

Journal Qual Life Res

Specialties Pharmacology
Rehabilitation Medicine

Date 2013 Apr 23

PMID 23605935

Citations 6

Authors

M Niemitz

D C M Seitz

M Oebels

D Schranz

H Hovels-Gurich

M Hofbeck

R Kaulitz

C Galm

F Berger

N Nagdymann

B Stiller

T Borth-Bruhns

I Konzag

C Balmer

L Goldbeck

Affiliations

Soon will be listed here.

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.

Citing Articles

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How does the EQ-5D-Y Proxy version 1 perform in 3, 4 and 5-year-old children?.

Verstraete J, Lloyd A, Scott D, Jelsma J Health Qual Life Outcomes. 2020; 18(1):149.

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Does the child's health influence the caregiver's health using the EQ-5D instruments?.

Verstraete J, Scott D S Afr J Physiother. 2020; 76(1):1343.

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Werner H, Lehmann P, Ruegg A, Hilfiker S, Steinmann K, Balmer C Health Qual Life Outcomes. 2019; 17(1):152.

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