Academic journal article International Journal of Child Health and Human Development

Dermatology: Quality of Life Issues

Academic journal article International Journal of Child Health and Human Development

Dermatology: Quality of Life Issues

Article excerpt

Introduction

Changing epidemiology of paediatric diseases, from acute to chronic and from incurable to palliative or curable, has resulted in a growing interest in assessing children's quality of life (QOL). Nowadays, evaluation of QOL is considered a central element of paediatric practice and important for all children i.e., the healthy and the ill (1). In order to understand the QOL issues in children with particular reference to dermatology and the issues surrounding the assessment of QOL in paediatric populations, it important to first understand the concept of QOL. The life time of an individual consists of two fundamental components- quantity of life and quality of life (2). The "Quantity of life" is the number of years from the time of birth to the time of death; the "Quality of life" is the quality of each point in the time between the time of birth and the time of death.

Quality of life is an amorphous term and has different meanings for every individual and culture and differs by context, place and time (i.e., it may vary within an individual at different points in time). A number of different concepts have been associated with this term including health-related quality of life, health status, and functional status. Although related and many times used interchangeably, these terms have separate definitions. According to one of the most frequently used definitions, "Quality of life is an individual's perception of their position in life in the context of the cultural and value systems in which they live and in relation to their goals, expectations, and standards and concerns" (3).

In the context of pediatrics, this term refers to: "a child's perception and evaluation of performance in relevant life areas and its feelings related to problems in functioning" (4). It has also been described as: "A measure of how a child views his/her life in relationship to how they could reasonably expect or desire it to be" (5). Health-related quality of life (HRQOL) could be considered a component of overall QOL that is determined by the individual's health and which can be influenced by clinical interventions (6,7). Health status, a related term, indicates a child's level of wellness versus illness (8) and includes the presence of biological dysfunction with or without the level of illness control (9). Finally, functional status could be defined as "a child's ability to perform daily activities that are essential to meet his/her basic needs, fulfil roles and maintain health and well-being" (9).

Since QOL is a purely subjective concept, as expressed by the patient, it is in contrast to other traditional clinical, biological, and radiological measures evaluated by the observers objectively and it depends on the individual needs as perceived by the patients themselves and not the treating physicians (10). Moreover, being subjective in nature, it can be influenced by a number of factors such as the severity of disease, patient's gender, age, ethnic background, social class, personality type, level of anxiety, education, lifestyle, past experiences as well as family functioning (11-13). Irrespective of contextual differences in their meanings, the terms QOL and HRQOL have frequently been used synonymously in the medical literature and for the sake of simplicity and because of it wider application, the umbrella term QOL will be used in this chapter to denote HRQOL.

Paediatric quality of life and its assessment

Children constitute a large proportion of health care consumers and paediatrics represents a major medical speciality. Assessment of QOL in children is as important as in adults. However, compared to adults, the assessment of QOL in young children is believed to be associated with unique problems and challenges (14). Factors such as age and cognitive and emotional development may compromise children's ability to understand their disease or health in general and the questions asked in a QOL questionnaire in specific. …

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