Christine Eiser

Children’s quality of life measures

Significant increases in survival have been reported for a wide range of chronic diseases of childhood. These improvements have generally been achieved through the use of increasingly aggressive treatment protocols, prompting some to question the relationship between quantity and quality of survival. Frequent and lengthy hospitalisations, painful treatments, and lack of certainty about the future may all compromise the quality of life of child and family. Current ability to treat children with chronic disease, coupled with the inability to offer absolute cure, raises the issue of the quality of life of these children. Many clinicians and adults are prepared to accept that some compromise to quality of life is inevitable during the early stages of treatment, but feel more uncomfortable if this continues beyond the initial diagnosis. This applies especially to children with cancer, since quality of life is inevitably compromised during treatment. It is now apparent that statistics based on survival may not accurately reflect the degree to which quality of life is compromised in the longer term, given the incidence of both physical and psychological difficulties reported by some survivors.1 The birth of a premature or low birthweight infant has immediate consequences for family quality of life, but again these may well extend into middle childhood and probably beyond.2 Children with asthma or diabetes may always need medication, but at the same time we hope that this will not result in any significant compromise to quality of life.3 #### Key messages

Practitioner Review: Long‐term Consequences of Childhood Cancer

Survival rates in childhood cancer now approach approximately 65%, depending on the specific cancer. Success has been achieved through the use of increasingly aggressive treatments (chemotherapy, radiotherapy, bone-marrow transplantation). These are now recognised to be associated with a range of physical late effects, including problems associated with growth and endocrine function, sensory function, fertility, liver, cardiac, and kidney damage. Recognition of these physical late effects raises the issue of related problems in psychological, educational, and behavioural functioning. There is considerable evidence to suggest that children who are younger on diagnosis are more at risk in terms of cognitive and behavioural late effects compared with those who are diagnosed later. Cancer remains a rare disease in children and consequently only those professionals attached to centres specialising in the care of children with cancer are likely to receive a significant number of referrals. It is important to establish a psychological support service as an integral part of long-term care in order to (a) establish more accurately the incidence of social and psychological late effects and (b) offer advice to the individual about the possible long-term effects of cancer treatment on future health, social, and employment prospects.

Young children's understanding of smoking

32 children aged 7-8 years and 30 children aged 10-11 years were interviewed individually about their knowledge and beliefs about the physiological and social effects of smoking. Knowledge about the consequences of smoking in terms of vulnerability to disease and damage to the body increased with age but was high for both groups. Most striking was the increase with age in childrens awareness that smoking could be used to control negative mood states rather than simply result in positive enjoyment. The data attest to much social, rather than purely cognitive learning, of beliefs about smoking among children.

Long-term Consequences of Childhood Cancer

Survival rates in childhood cancer now approach approximately 65%, depending on the specific cancer. Success has been achieved through the use of increasingly aggressive treatments (chemotherapy, radiotherapy, bone-marrow transplantation). These are now recognised to be associated with a range of physical late effects, including problems associated with growth and endocrine function, sensory function, fertility, liver, cardiac, and kidney damage. Recognition of these physical late effects raises the issue of related problems in psychological, educational, and behavioural functioning. There is considerable evidence to suggest that children who are younger on diagnosis are more at risk in terms of cognitive and behavioural late effects compared with those who are diagnosed later. Cancer remains a rare disease in children and consequently only those professionals attached to centres specialising in the care of children with cancer are likely to receive a significant number of referrals. It is important to establish a psychological support service as an integral part of long-term care in order to (a) establish more accurately the incidence of social and psychological late effects and (b) offer advice to the individual about the possible long-term effects of cancer treatment on future health, social, and employment prospects.

Development of a measure to assess the perceived illness experience after treatment for cancer.

The development of a scale to measure perceived illness experience in young people with cancer is described. Areas of concern were first identified through semistructured interviews conducted with children and adolescents. As a result, 78 items were generated to cover the main areas identified (physical appearance, interference with activity, peer rejection, integration in school, manipulation, parental behaviour, disclosure, preoccupation with illness, and impact of treatment). These items were rated (on five point scales) by 41 patients (mean age 14.6 years) and 35 of their parents. Measures of physical functioning (symptoms, functional disability, and restrictions) and psychological functioning (symptoms) were included for validation purposes. Test-retest reliability was calculated on the basis of ratings made by a subsample of parents on two separate occasions. A 34 item scale was constructed with four items in each of the areas identified above, except for physical appearance (n = 2). The scale has adequate internal reliability and validity. There were significant correlations between parents and their children on all subscales except for illness disclosure and impact of treatment, suggesting that parents may be less reliable informants for their children in these contexts. The scale has potential use in clinical contexts, in evaluating the psychosocial impact of different treatment regimens, and as an outcome measure in intervention work.

Health-related quality-of-life measures for children.

Our purpose is to report the development and psychometric properties of a generic computer‐delivered measure of health‐related quality of life (HRQL) suitable for children aged 6 to 11 years, the Exeter HRQL scale (EHRQL). The theoretical model adopted is based on a definition of HRQL which assumes that HRQL is the result of discrepancies between an individuals actual self and ideal self. The EHRQL consists of 16 pictures, each of which is rated twice, first in terms of “like me” and second as “I would like to be”. The difference between these scores is assumed to be indicative of HRQL. The EHRQL is delivered using a Macintosh Powerbook and takes approximately 20 min. Data are reported for 60 children with asthma (mean age = 8.93 years) and 69 healthy children (mean age = 7.49 years). In addition, children with asthma completed the Childhood Asthma Questionnaire (CAQ) and a measure of self‐efficacy. For children with asthma, significant correlations were found between discrepancy scores and 3 of the 4 subscales of the CAQ. In addition, higher discrepancies were found for children with asthma compared with healthy children (p < 0.05). The EHRQL has acceptable internal reliability, and these data provide preliminary support for the theoretical assumption that HRQL reflects perceived discrepancies between an individuals actual self and ideal self. The measure also distinguished, as predicted, between children with asthma and healthy children. Methodological refinements to the EHRQL are suggested. Int. J. Cancer Suppl. 12:87–90, 1999. ©1999 Wiley‐Liss, Inc.

Children's concepts of illness: Towards an alternative to the “Stage” approach

Abstract Research concerned with the development of childrens beliefs about health and illness has practical implications for educating children about their illness, treatment and hospital admission. Previous research has suggested that beliefs about health and illness develop through a series of systematic stages, and that children are unable to understand explanations in advance of their own cognitive level. Alternative theories which give greater emphasis to the role of experience are considered, and some implications for clinical practice drawn.

Quality of Life in Young Adults with Type 1 Diabetes in Relation to Demographic and Disease Variables

Sixty‐nine young adults (mean age 21 (range 15–25) years) with Type 1 diabetes completed measures of diabetes knowledge and quality of life. Factor analysis of the quality of life scale resulted in the identification of three subscales (social relationships, diabetes concerns, and impact). There was no relation between any of the quality of life subscales with knowledge, or with multiple versus twice‐daily insulin injection regimens. Higher self‐rated diabetes satisfaction was related to lower fructosamine levels and better clinic attendance (p < 0.05). Females reported a more negative impact of diabetes on their lives compared with males (p < 0.05).

The measurement of self-esteem: practical and theoretical considerations

Abstract Pupils from three age groups (187 in year 7; 161 in year 8 and 200 in year 9) completed two separate measures of self-esteem. Children in years 7 and 8 completed the Self Perception Profile for Children (Harter, The Self-perception Profile for Children: Revision of the Perceived Competence Scale for Children , 1985) and those in year 9 the Self Perception Profile for Adolescents (Harter, The Self-perception Profile for Adolescents , 1988). We report reservations about the use of Harters scales for British children, especially in that there was not a ready differentiation of overall self-esteem into specific domains as suggested by Harter. A small proportion of pupils experienced some difficulties in understanding the response format. The data are discussed in terms of the development of multidimensionality of self-esteem in childhood.

Assessing the impact of chronic disease on the relationship between parents and their adolescents

The diagnosis of a chronic disease poses many challenges for parents, their children and their relationship together. A child with a chronic disease is more dependent on parents, and often has less opportunity to participate in peer activities. Worries about the illness, experienced and anticipated pain, and the need for continual monitoring may set the child apart from peers and healthy siblings. While such a diagnosis is likely to be challenging at any age, it may be especially so during adolescence, when relationships are being negotiated and redefined. At a time when others are establishing their independence and asserting themselves in the wider environment, adolescents with chronic disease may find themselves in a situation of enforced dependency, often physically restricted compared with their peers and having to rely on parents for practical and emotional support. Much attention has been paid to concepts of ‘restriction’ and ‘overprotection’ [ 11. The transition to adolescence is difficult for all families, but appears to be even more so when compounded by the presence of serious illness. Chronic disease heightens parents’ concern and as a consequence, they may attempt to restrict the child’s activities and become more intrusive than parents of healthy children. For example, Walker et al. [2] reported that mothers with a child with cystic fibrosis experienced many difficulties, but that these became greater when the child reached adolescence. For parents, a particular difficulty may focus on separating concerns about the illness from more general issues which confront many families during this period. The following example is very typical of parents’ dilemmas: “She came out of school in a foul mood, and I said ‘What’s the matter? Have you not felt well today?’ And she got crosser and crosser and shut herself in her room and I really was worried and didn’t know whether to ring the hospital. And then that evening she talked about how she had invited a few people round for Friday night but now somconc else was having a huge party and had invited some of her friends to that (but not her) and she felt her party would be a washout. And then I felt I had been so stupid. I thought it was about the cancer but really it was about something at school and I just hadn’t been able to see that at all”. Discussion of the ways in which family relationships are affected by chronic or