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

Abstract

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 oftheir 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. (Arch Dis Child 1995; 72: 302-307)

Quality of life in children and adolescents surviving cancer

“…In keeping with other studies (Eiser et al, 1995;Sawyer et al, 1999;De Clercq et al, 2004;Russell et al, 2006;Upton et al, 2008), we found a strong correlation between the total QoL ILC scores reported by parents and by their adolescent child, suggesting that in the case of cancer, parents and adolescents share much of the same perspective. Moreover, our finding of lower QoL among children with brain tumours and late effects compared with controls were consistent for parent proxy report and adolescent self-report.…”

Children proxies' quality-of-life agreement depended on the country using the European KIDSCREEN-52 questionnaire

“…For adolescents, the highest agreement with proxy ratings was highlighted by Varni et al [30]. The agreement on physical domains is important too when reporting symptoms or distress [31]. Similarly, several studies reported a higher agreement for ill children than for healthy children for physical domains [32].…”

Testing the structural and cross-cultural validity of the KIDSCREEN-27 quality of life questionnaire

“…Several instruments for children and adolescents have been developed in different European countries, including Germany [2], the United Kingdom [3], the Netherlands [4], and, France [5]. Some of these instruments have been adapted and validated for use in other European languages [6,7].…”