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.
Subject(s)
Health Status Indicators , Heart Diseases/psychology , Parents/psychology , Psychometrics/methods , Quality of Life/psychology , Surveys and Questionnaires/standards , Adult , Caregivers/psychology , Child , Child, Preschool , Chronic Disease/psychology , Feasibility Studies , Female , Heart Diseases/physiopathology , Humans , Hungary , Male , Pediatrics , Proxy , Psychometrics/instrumentation , Reproducibility of Results , Schools , Sickness Impact ProfileABSTRACT
INTRODUCTION: Children and young adults require a higher maximum tracking rate (MTR) for physical activity. The objective of the present study was to observe whether higher MTR of 170 or 190 beats per minute (bpm) have a positive impact on the maximal cardiorespiratory capacity of children and young adults in comparison with a lower MTR of 140 bpm. METHODS: Fifteen patients with atrioventricular block and normal sinus-node chronotropic function (age 7-24 years) with DDD- (14) or VDD-pacemakers (PM) (1) were enrolled. First, the MTR was adjusted to 140 bpm for 6 weeks and elevated in a second step to 170 or 190 bpm. At the end of each period two cardiopulmonary exercise tests, a 24-hour ECG and a PM test were performed. RESULTS: All patients increased their maximal heart rate (139.0 +/- 1.0 vs 177.0 +/- 10.0 bpm, P < 0.001), peak cardiorespiratory capacity (2.4 +/- 0.6 vs 2.8 +/- 0.7 W/kg, P < 0.001), peak oxygen uptake (28.3 +/- 7.0 vs 35.7 +/- 9.5 mL/kg/min, P < 0.005), and oxygen uptake (23.7 +/- 7.4 vs 29.3 +/- 8.4 mL/kg/min, P < 0.02) at the anaerobic threshold. There were no evident heart rhythm disturbances with elevated MTR. Patients with a Wenckebach behavior of the PM had an attenuated increase of maximal cardiorespiratory performance. CONCLUSION: Children and young adults with DDD-/VDD-PM benefit from an elevated MTR by an increased cardiorespiratory capacity, without having more heart rhythm disturbances. A Wenckebach behavior of the PM should be avoided.
