Abstract
Background: Congenital heart diseases have a high prevalence in Portugal in the pediatric age. Understanding the quality of life of children with congenital heart diseases will allow to know its impact and the adaptive process involved. We lack, however, measurement instruments adapted to the Portuguese population. Objective: Translate and adapt the Pediatric Cardiac Quality of Life Inventory (PCQLI) for the Portuguese population. Methodology: The original questionnaire was translated according to international recommendations. The final version of the instrument was applied in a non-probability sample comprised 59 children, 80 adolescents and their parents, totaling 278 respondents. The facial validity analysis was performed with the pre-test and internal consistency analysis using Cronbach’s Alpha. Results: In the pre-test it was verified that the items are comprehensible, useful with a simple and colloquial language. The internal consistency for the total score varied for the different versions between 0.834 and 0.932. Conclusion: The Portuguese version of PCQLI allowed us to evaluate the quality of life of children with congenital heart disease in a satisfactory way. However, a larger sample is needed to develop the validation process
Highlights
Congenital heart disease (CHD) is one of the most prevalent congenital diseases in Portugal, with an incidence of 6 to 8 per 1,000 live births (Kaku, 2018)
The analysis of the characteristics of the quality of life of children/adolescents with CHD is of undeniable interest because it will allow identifying the impact of the disease and/ or treatments and better understanding patients, their evolution, and adaptation to the disease
In the pre-test phase, the researcher established a personal contact with all participants to explain the study objective and analyze face validity. This sample was composed of 10 parents of children and adolescents, as well as five children and five adolescents
Summary
Congenital heart disease (CHD) is one of the most prevalent congenital diseases in Portugal, with an incidence of 6 to 8 per 1,000 live births (Kaku, 2018). The analysis of the characteristics of the quality of life of children/adolescents with CHD is of undeniable interest because it will allow identifying the impact of the disease and/ or treatments and better understanding patients, their evolution, and adaptation to the disease. It will improve the communication between patients, parents, and health care providers, the definition of priorities based on patients’ preferences, the monitoring of changes over time or in response to specific therapeutic strategies, the detection of other medical or psychosocial problems, the identification of risk factors for low quality of life, the implementation of a family-centered care philosophy, the promotion of adherence to treatment, and the satisfaction of the patient and the family (Marino et al, 2010; Marino et al 2016). Some factors inherent to the pediatric age can limit the assessment of health-related quality of life, such as age range, devel-
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