Quality of life among adolescents with cerebral palsy: what does the literature tell us?

Abstract

This review describes trends in quality of life (QOL) and health-related quality of life (HRQOL) among adolescents with cerebral palsy (CP). Twenty original articles were identified by a structured search of multiple databases and grouped by design. Categories included descriptive crosssectional studies (n=8), measurement validation studies (n=9), and exploratory qualitative studies (n=3). Several trends were apparent. First, individuals with CP are reported to have decreased QOL and HRQOL compared with a normative population in some but not all areas of well-being. Second, functional status measures such as the Gross Motor Function Classification System are reliable indicators of variations in physical function, but do not correlate consistently with psychosocial well-being. Third, although adolescents with CP have different life issues than adults or children, limited research on factors associated with QOL and HRQOL has been described for this age range. We recommend that clinicians and researchers interested in assessing well-being among adolescents with CP include participants from across the spectrum of motor impairment, allow adolescents to self-report whenever possible, and assess adolescents independently, rather than including them with individuals from other age groups or clinical populations.Cerebral palsy (CP) is a clinical description of a chronic functional disability. The definition has recently been revised as '… a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems.' 1 This definition follows concepts introduced by the World Health Organization's International Classification of Functioning, Disability and Health. 2 Changes in our conception of CP reflect an expansion beyond the functional limitations associated with motor impairment towards a recognition of the personal experience of individuals in this population. Under the broad notion of 'well-being', researchers have begun to consider functional status, health status, quality of life (QOL), and health-related quality of life (HRQOL). 'Functional status' can be conceptualized as 'the degree to which an individual is able to perform socially allocated roles free of physical or mental limitations ', 3 and focuses on the performance of specific tasks, such as 'activities of daily living'. 4 'Health status' considers broader medical and functional well-being, and is sometimes reported in terms of 'impact of disability'. 5 Assessments of QOL and HRQOL shift the description of well-being into the realm of the subjective, because these outcomes are not directly observable by a third party and cannot be measured along a physical dimension. 6 Although the areas of health considered in measurements of...

Quality of life and health‐related quality of life of adolescents with cerebral palsy

“…Discussion continues about the meaning of various constructs of QOL, 1 as people work to describe the important conceptual variations among terms such as functional status, health status, and health-related quality of life (HRQOL). Livingston et al 2 have reviewed the literature that reports various aspects of well-being among adolescents with CP. They concluded that measurement of QOL and HRQOL poses methodological challenges and observed that emphasis has traditionally been on functional or health status rather than personal perspectives of well-being.…”

“…5 Although the area of health or function measured in QOL and HRQOL may be either objective or subjective (such as the ability to walk or the severity of bodily pain), the ratings of these dimensions are necessarily subjective reports, completed by either self or proxy. 2 Researchers have yet to decide on a universal definition of QOL and HRQOL. 6 What seems clear, however, is that QOL refers to the notion of holistic well-being, 7 such as the perceived importance of physical health, where one lives and spends time, having friends, and access to education and work; whereas HRQOL focuses on the health-related components judged to be associated with life satisfaction, 8 such as self-care, mobility, and communication.…”

Treating an intervention level 1 patient: futile or brave?

“…[4][5][6][7][8][9] It has been documented that CP occurs in 2-2.5/1 000 live births. 10 Causes of CP include being born before term, not receiving enough oxygen during the birth, the foetus being exposed to maternal infection and/or inflammation in utero, and maternal fever during labour.…”

“…7 CP sufferers often have visual, hearing and cognitive defects and epilepsy. [5][6][7]9,11 Other systemic defects are also present, the most common noncerebral defects being cardiac (29%), musculoskeletal (14%), urinary tract (9%) and facial clefts (9%). 2,6 CP sufferers also often experience feeding problems because of poor hand to mouth coordination, spilling, poor lip closure and frequent regurgitation or vomiting which results in malnutrition.…”

“…Those who suffer several co-morbidities have a reduced quality of life. Various authors report that the quality of life of CP sufferers who are tube fed is less than those not being tube fed, and that tube-fed CP sufferers have more severe defects of immobility, 5 and also present with more severe neurological disability and a higher mortality rate. 13 …”