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

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.

Effectiveness of a family-oriented rehabilitation program on the quality of life of parents of chronically ill children.

BACKGROUND: Parents of chronically ill children face numerous burdens in daily life, which can impair their quality of life (QoL) significantly. Therefore in family-oriented rehabilitation, not only the children themselves, but also their parents receive interventions. These aim at stabilizing parents both mentally and physically to enable them to support their children in the best possible way. This study investigates the effects of an inpatient family-oriented rehabilitation program on the QoL of parents of chronically ill children. PATIENTS: A consecutive sample of 231 mothers and 155 fathers of children suffering from cancer, cardiac diseases or cystic fibrosis participated in the study. METHOD: In a prospective longitudinal study, parental QoL was repeatedly assessed using the Ulm Quality of Life Inventory for Parents (ULQIE) at three different time points: admission to the rehabilitation clinic, discharge after four weeks of inpatient treatment, and at a six-month follow-up. RESULTS: Parental QoL increased markedly during rehabilitation treatment (mothers eta (2)=.326, fathers eta (2)=.249). Moreover, six months after the intervention, parental quality of life was still markedly improved compared to baseline assessment (mothers eta (2)=.259, fathers eta (2)=.069). The child's diagnosis had no effect on the level and course of parental QoL. CONCLUSIONS: Taking part in family-oriented rehabilitation can improve the QoL of parents of children suffering from cancer, cardiac diseases or cystic fibrosis. Such programs could be expected to affect the way chronically ill children cope with their condition and this should be examined in future studies.