This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. This article has been cited by other articles in PMC. Abstract Advances in cardiac surgery techniques and early diagnosis have enabled the increased survival of individuals with congenital heart disease.
This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
This article has been cited by other articles in PMC. Abstract Advances in cardiac surgery techniques and early diagnosis have enabled the increased survival of individuals with congenital heart disease.
The investigation of the quality of life in children and adolescents with congenital heart disease provides complementary information to Quality life of parents adults of children data that can assist in decision making on the part of health professionals.
Although many studies have been conducted to investigate the quality of life of children and adolescents with congenital heart disease, the results prove to be contradictory; while some studies show that congenital heart disease can impact the quality of life, others describe a better perception of quality of life among children and adolescents who suffer from the disease when compared with healthy control subjects.
The purpose of this study is to review the literature on the assessment of health related quality of life in children and adolescents with congenital heart disease, in order to systematize the existing knowledge on this topic today. It is observed that research seeks to investigate aspects of personality in cardiac patients, their coping strategies used and perceived social support, aiming at better understanding the association of these variables with the level of quality of life in this population.
Quality of life, heart disease, congenital abnormalities, childhood, adolescence Introduction Advances in treatments and the effective possibilities of control of chronic-degenerative and congenital diseases have resulted in longer life time to people afflicted by these diseases 1.
In relation to cardiac malformations, it is estimated that about 10 out of newborns alive are affected by some sort of congenital anomaly, being one-third of these with critical diagnoses requiring surgical intervention 12.
In the last decades, early diagnosis has contributed to the increase of incidence in the findings 3and the advance of surgical techniques has led to the increase in the number of heart disease children and adolescents.
In face of this context, it is important to consider the repercussions of physical, psychological and social order that accompany congenital heart disease CHD and that can bring losses to these patients' quality of life.
The Health related quality of life HRQoL initially investigated further in the adult population, has gained special attention in childhood and adolescence due to the impact that its injury can cause in long-term, in addition to the benefit that early interventions focusing on its improvement can provide, especially in chronic diseases.
The assessment of HRQoL in children and adolescents with heart disease has been used as an important health outcome, to identify groups and subgroups that are at risk, track health habits and to better understand the impact of different diagnoses of heart disease on the quality of life of this population.
The objective of this study is to review the current literature on the evaluation of health related quality of life in childhood and adolescence, with emphasis on the patient with congenital heart disease. Method A search was conducted in Pubmed and Scielo databases for articles published between and The following key-words were used: Additionally, references were sought in books authored by specialists in the field of literature review articles with adequate theoretical quality for the discussion of the topic, in order to complement and deepen the analysis of the current literature.
Review results and discussion Health related quality of life in children and adolescents While the quality of life QoL in adults has been investigated in the past decade, this study among children and adolescents is a recent area.
The difficulty of defining and conceptualizing QoL becomes a constant challenge for researchers in this area, especially in the construction of valid and reliable instruments, including all its scales and considering the perception of the individual under development.
In general, the QoL assessment tools in childhood have little congruence in relation to the content covered, with different conceptions about normal childhood development in different age groups and the importance of family function and social context as factors necessary for their well being.
The broad spectrum of contents and the variety of scales and items envisaged in the QoL instruments in childhood reflect the differences in their process of preparation, in the theoretical line used, in the target population and in the objectives of application of the instrument 45.
Some areas of discussion of an ideal model of QoL in childhood and adolescence, as highlighted by Kuczynski 4suggest that it is important to assess the global sphere related to society and its macro environment and external sphere related to socioeconomic conditions on top of personal and interpersonal aspects as children need, overall, to develop themselves in adequate and health-promoting conditions.
Reinforcing this idea, Matza et al. Contextual factors, therefore, may have an influence in the long-term on social and psychological development of children, and it is important to consider variables such as family, peers, school and community when assessing their QoL.
In the case of children with chronic disease, there are few attempts at developing methods and tools for assessment of HRQoL, and it still is uncommon concern in apprehending the perception and impact of the disease from the point of view of the patient, resulting in large discrepancies as to the response and clinical evolution 4.
To Lawford and Eiser 7the child's ability to adapt to their experiences and how they interpret adverse experiences will have impact on their QoL. The reactions of each child to face adverse experience, such as dealing with the disease, show that there is a level of individual adjustment and coping styles that are related to their perception of QoL.
The concept of resilience, understood as the process of positive adaptation of the individual in contexts of extreme adversity, has been used to explain individual differences found in children who show high levels of action in some domains of QoL despite facing adverse life conditions.
In a systematic review of instruments to assess the QoL for children and adolescents, Solans et al. Samples of generic instruments for pediatric population are: The specific measures are tools capable of detecting the improvement or worsening of symptoms and functioning of the health condition under study, with higher sensitivity to measure changes to effects of the treatments of certain diseases 12 In the pediatric population, health conditions that have a higher number of specific measuring instruments are asthma, cancer and epilepsy, and the countries that mostly develop this type of instrument are the United States, UK and Canada 5.Background.
Little is known about the Quality of Life (QOL) in parents of children with developmental diseases as compared to other severe neurological or psychiatric disorders. Quality of life can be impaired in children, adolescents and adults with ADHD Registration gives the benefit of site update e-mails and additional information from Shire on .
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This article draws on a recent study that investigated the quality of life of parents of children/adults who have an intellectual disability and who are availing of respite care.
The findings suggest that parents are experiencing ‘good’ to ‘excellent’ quality of life and that demand exceeds supply. Quantitative and qualitative evidence indicates that parental quality of life is influenced by having a child with ASD.
• Measurement of parental quality of life is important for helping parents improve their well-being and thus be better equip to help their children. Health related quality of life in children and adolescents.
While the quality of life (QoL) in adults has been investigated in the past decade, this study among children and adolescents is a recent area.