Children’s Quality of Life Based on the KIDSCREEN-27: Child Self-Report, Parent Ratings and Child-Parent Agreement in a Swedish Random Population Sample

Abstract

BackgroundThe KIDSCREEN-27 is a measure of child and adolescent quality of life (QoL), with excellent psychometric properties, available in child-report and parent-rating versions in 38 languages. This study provides child-reported and parent-rated norms for the KIDSCREEN-27 among Swedish 11–16 year-olds, as well as child-parent agreement. Sociodemographic correlates of self-reported wellbeing and parent-rated wellbeing were also measured.MethodsA random population sample consisting of 600 children aged 11–16, 100 per age group and one of their parents (N = 1200), were approached for response to self-reported and parent-rated versions of the KIDSCREEN-27. Parents were also asked about their education, employment status and their own QoL based on the 26-item WHOQOL-Bref. Based on the final sampling pool of 1158 persons, a 34.8% response rate of 403 individuals was obtained, including 175 child-parent pairs, 27 child singleton responders and 26 parent singletons. Gender and age differences for parent ratings and child-reported data were analyzed using t-tests and the Mann-Whitney U-test. Post-hoc Dunn tests were conducted for pairwise comparisons when the p-value for specific subscales was 0.05 or lower. Child-parent agreement was tested item-by-item, using the Prevalence- and Bias-Adjusted Kappa (PABAK) coefficient for ordinal data (PABAK-OS); dimensional and total score agreement was evaluated based on dichotomous cut-offs for lower well-being, using the PABAK and total, continuous scores were evaluated using Bland-Altman plots.ResultsCompared to European norms, Swedish children in this sample scored lower on Physical wellbeing (48.8 SE/49.94 EU) but higher on the other KIDSCREEN-27 dimensions: Psychological wellbeing (53.4/49.77), Parent relations and autonomy (55.1/49.99), Social Support and peers (54.1/49.94) and School (55.8/50.01). Older children self-reported lower wellbeing than younger children. No significant self-reported gender differences occurred and parent ratings showed no gender or age differences. Item-by-item child-parent agreement was slight for 14 items (51.9%), fair for 12 items (44.4%), and less than chance for one item (3.7%), but agreement on all dimensions as well as the total score was substantial according to the PABAK-OS. Visual interpretation of the Bland-Altman plot suggested that when children’s average wellbeing score was lower parents seemed to rate their children as having relatively higher total wellbeing, but as children’s average wellbeing score increased, parents tended to rate their children as having relatively lower total wellbeing. Children living with both parents had higher wellbeing than those who lived with only one parent.ConclusionsResults agreed with European findings that adolescent wellbeing decreases with age but contrasted with some prior Swedish research identifying better wellbeing for boys on all dimensions but Social support and peers. The study suggests the importance of considering children’s own reports and not only parental or other informant ratings. F...

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“…Also, in self‐report studies, the possibility of bias due to overreporting or underreporting cannot be excluded. Response shift bias can also influence the outcomes of such studies, as patients with chronic illnesses or disabilities may develop increased tolerance and acceptance of problems because of a change in standards, values and conceptualisations of themselves and their lives . The self‐reported HRQoL levels seen in our study may, therefore, not fully reflect the impact of the patients’ illness and treatment history on their HRQoL.…”

“…The patients in our study reported slightly higher HRQoL than the European norm values for patients aged 8–18, while the outcomes did not differ from the Swedish reference data for those aged 12–18. This observation may, to some extent, be attributed to the fact that the Swedish norm scores have been found to exceed those of the European norms in most of the KIDSCREEN‐52 subdimensions .…”

Influência sociodemográfica na qualidade de vida relacionada com a saúde dos adolescentes

“…Da mesma forma, num estudo realizado na Suécia, em 2012, com 600 crianças e adolescentes com idades compreendidas entre 11-16 anos, a perceção de QVRS foi significativamente mais baixa em adolescentes do que em crianças. (17) A diminuição de bem-estar relacionada à idade pode estar associada com a transição física, cognitiva e social da infância para a vida adulta que os rapazes e meninas enfrentam neste estágio. Essas mudanças podem incluir: mudanças físicas, uma nova aparência física que provoca insatisfação e ansiedade; mudanças cognitivas, novas ferramentas cognitivas que permitem que os adolescentes tenham acesso a pensamentos mais complexos (sobre o mundo em geral e sobre si mesmos e suas circunstâncias particulares), a procura da sua própria identidade e mudanças sociais, novos desafios sociais associados a mudanças de relacionamento com pais e colegas, primeiros amores, primeiras experiências sexuais, entre outras.…”

“…No que diz respeito às pessoas com quem as crianças e adolescentes habitam, na maioria das dimensões não foram encontradas diferenças significativas, à exceção da dimensão Saúde e atividade física, Estado de humor geral e Questões económicas. O presente estudo mostra que as crianças e adolescentes que coabitam numa família nuclear apresentam melhor perceção sobre a própria QVRS, indo de encontro aos resultados do estudo realizado por Berman et al, (17) em que o autor verificou que as crianças e adolescentes que habitavam com ambos os pais apresentavam melhor perceção sobre a própria QVRS.…”

Children with orofacial clefts : dental caries and health-related quality of life

“…KIDSCREEN-52 self-reported version has earlier been used in Swedish studies , Svedberg, Eriksson et al 2013, Omma and Petersen 2015 as well as the shorter forms of the questionnaire, KIDSCREEN-27 and KIDSCREEN-10 , Jervaeus, Kottorp et al 2013, Jervaeus, Lampic et al 2014, Berman, Liu et al 2016). …”