Quality of Life and Family Functioning in Children With Nonsyndromic Orofacial Clefts at Preschool Ages

Abstract

Children with orofacial clefts (OFC) at preschool ages may have to tolerate psychosocial disadvantages due to their altered speech and facial appearance probably affecting their quality of life (QoL) and family functioning. In 147 children with OFC aged between 5 and 6 years and their families, the QoL and family functioning were analyzed using the KINDL questionnaire for measuring health-related QoL in children and impact on family scale. The KINDL scores were lowest in the dimension self-esteem. In all dimensions, the KINDL scores of children were higher than those of the parents suggesting a superior QoL than the caregivers estimated (P<0.001). In affected families, the impact on family scale dimensions personal impact and impact on coping strategies were found highest. Families having children with isolated cleft lip or cleft lip and palate had higher impacts on coping strategies when compared with children having isolated cleft palate (P<0.041). The impact for siblings (P<0.02) was found highest in patients with cleft lip and palate. In all examined dimensions, children with OFC perceived a higher QoL than their caregivers expected. However, self-esteem seems to be problematic in all types of OFC and in both genders. Knowledge of potential impacts related to the type of cleft and the gender of the patient will probably facilitate health care professionals to identify children and families at high risk to experience a reduced QoL and may help to offer specific support and treatment strategies.

An Evaluation of Health-Related Quality of Life (HRQoL) in a Group of 4–7 Year-old Children with Cleft Lip and Palate

“…Kein statistisch signifikanter Unterschied wurde zwischen den verschiedenen Spalttypen festgestellt. Diese Ergebnisse stimmen mit den Daten überein, die kürzlich von Kramer et al [19] veröffent-licht wurden, die ebenfalls das gleiche HRQoL-Instrument verwendet hatten. Jedoch liefert die vorliegende Veröffent-lichung zusätzlich einen Vergleich mit Daten der Durchschnittsbevölkerung und zeigt niedrigere HRQoL-Werte im KINDL-Gesamtwert, was zuvor bereits bei Kindern mit chronischen Erkrankungen festgestellt wurde [13,27].…”

Self-Reported Quality of Life of Young Children With Conditions From Early Infancy: A Systematic Review

“…61 In children with congenital conditions, there was consistency in studies of children with cerebral palsy, using various measures of QoL; children rated their QoL higher than parents did. 11,49 For other conditions, there was less consistency in the direction of discrepancy between self-report and proxy report, with some studies reporting lower scores by parents than children 34,45,47,51,56 ; in other studies, parents reported higher scores than children. 31,46,55 Consistent with a previous review, 9 , we found that QoL domain in studies of children with congenital conditions had a significant impact on self-report-proxy disagreement, with more agreement for objective domains (eg, physical health-related quality of life [HRQoL]) and less for subjective domains (eg, emotional and psychosocial well-being).…”

“…11 Of the 21 studies, the most common conditions were as follows: cerebral palsy (n = 5), cystic fibrosis (n = 4), and CHD (n = 4). Most studies used generic QoL questionnaires that have both The majority of these studies reported that a child' s perception of QoL differed from that of his or her parents, with parents frequently underestimating their children' s QoL, 11,49,56 in particular in subjective domains (eg, emotional and psychosocial). 34,45,47,49,51,52,58,59 Despite reports of weak correlation 11,47,48 or large differences in mean scores 58 between selfreports and proxy reports for the emotional domain, White-Koning et al 11 demonstrated that the self-report-proxy agreement rate for "emotions" was higher (44%) than for most domains (range: 25%-40%).…”

“…There was substantial variation between these studies in sample size and in the approach to data analysis and presentation. Ten studies analyzed the level of agreement between child and parent scores through correlations 11,33,40,[45][46][47][48][49][50][51] (Pearson or Spearman rank correlation or intraclass correlation coefficients), whereas 11 used other approaches in which there was no statistical analysis of self-proxy agreement reported 31,34,[52][53][54][55][56][57][58][59][60] (Table 3). Only 1 study analyzed the magnitude of the disagreement or agreement, taking into account the average SDs of the child and parent scores (effect size), the direction of self-proxy difference, and the factors affecting it.…”

The process leading to affirmation of life with cleft lip and cleft palate: The importance of acquiring coherence

“…Based on such an approach, self-concept (Speltz, Morton, Goodell, & Clarren, 1993), selfperception (Krueckeberg, Kappsimon, & Ribordy, 1993;Millard & Richman, 2001), self-esteem (Gussy & Kilpatrick, 2006;Kramer, Gruber, Fialka, Sinikovic, & Schliephake, 2008), social anxiety (Millard & Richman, 2001) and adjustment (Ramstad, Ottem, & Shaw, 1995) have been considered important concepts in measuring psychosocial aspects in subjects with CLCP. In past research, self-concept and self-esteem have been reported by some to be lower in individuals with CLCP than the general population (Broder & Strauss, 1989;Kappsimon, 1986), and by others to be higher (Persson, Aniansson, Becker, & Svensson, 2002), that is, results are not consistent.…”