Mental health and adjustment to juvenile idiopathic arthritis: Level of agreement between parent and adolescent reports according to Strengths and Difficulties Questionnaire and Adolescent Outcomes Questionnaire

Abstract

The aims of this study were threefold. Firstly, to analyze the psychometric properties of the Polish-language Pediatric Outcomes Data Collection Instrument (PODCI) questionnaire in the self-report Adolescent Outcomes Questionnaire (adolescents, 11–18 years of age) and in the parent-report Adolescent Outcomes Questionnaire (completed by a parent or guardian of an adolescent aged 11–18 years). Secondly, to determine the level of agreement between parents and adolescents in rating dysfunction in juvenile idiopathic arthritis (JIA) and thirdly, to examine associations between psychological adjustments of patients to JIA and disease as well as their socio-demographic characteristics. The study sample consisted of 52 participants. 26 adolescents between the ages of 11 and 18 years with a diagnosis of JIA and 26 parents were considered for inclusion. Disease course was classified as pauciarticular (n = 12, 46.2%) and polyarticular (n = 14, 53.8%). Participants completed the PODCI (self- and parent- report) twice and the Strengths and Difficulties Questionnaire-25 (SDQ-25). Considering the distribution of results regarding PODCI normative scores, 73.1% of parents and 69.2% of patients scored below 50 on the Global Functioning Scale; that is lower than the average for the general healthy population. Regarding the parent report, the total score of the SDQ-25 equaled 11.86 (SD 2.66), whereas the patient report equaled 11.23 (SD 2.78). The study groups do not differ significantly in regards to either the PODCI or the SDQ-25 results. Parents and adolescents with JIA appear to hold very similar perceptions of patients' health. Greater differences emerge as disease severity and age of patients increase. Excellent internal consistency, intrarater and test-retest reliability of the Global Functioning Scale have been confirmed in the Polish version of the PODCI, the questionnaire may therefore aid identification of patients reporting significant problems in this group.

Parent-child agreement in different domains of child behavior and health

“…In the domain of mental/physical health, parent-child agreement ranged from slight to moderate. Regarding behavioral strengths and difficulties, the overall agreement between child and parent reports was fair and, therefore, slightly lower than the agreement reported in previous studies [18][19][20][21][22][23]. In line with other studies [22,24,25], Table 4.…”

“…Regarding evaluations of mental/physical health of children, several studies have investigated parent-child agreement in reporting behavioral difficulties [18][19][20][21][22][23][24][25][26][27]. Overall, in these studies, parent-child agreement was reported to be moderate [18][19][20][21][22] to high [23]. Whereas most of the studies observed higher agreement in reporting with regard to externalizing problems [22,24,25], others found higher agreement for internalizing problems [20] or no difference for externalizing and internalizing problem behavior [21].…”

“…Where differences between children and parents were observed, children tended to report more behavioral difficulties than their parents [19][20][21]27], especially when it came to internalizing problems [26,27]. Factors that have been shown to impact the amount of parent-child agreement in reporting behavioral difficulties are parental engagement, socio-economic status (SES) [19,21], problem behavior/illness on the part of the child [1,18,20], and child age [23]. In contrast, levels of parent-child agreement have not been found to differ between girls and boys [1,19].…”

Measuring Mental Wellness Among Adolescents Living With A Physical Chronic Condition: A Systematic Review of the Mental Health and Mental Wellbeing Instruments

“…Adolescents with Type 1 Diabetes (n=7) and HIV (n=4) constituted half of the total number of studies. Other conditions were Asthma [34,35], Cerebral Palsy [36,37], Cystic Fibrosis [38,39] and Chronic Pain [40,41] with two studies each; with single studies on Congenital Heart Disease [42], Sickle cell disease [34], Cancer [38], Adolescent Idiopathic Scoliosis [43], Juvenile Idiopathic Arthritis [44], Strabismus and Short Stature [45]. Chronic Disease (unspeci ed by authors) [35].…”

“…Six of the instruments included are aimed at measuring symptoms of mental health or screening for emotional and behavioural problems. These are the Strength and Di culties Questionnaire (SDQ) [43,44,49,54,57]; Child Depression Inventory instruments (CDI & CDI-short form) [47,48]; Center for Epidemiological Studies Depression (CES-D) [51]; and the Revised Children's Manifest Anxiety Scale [47] and the Beck Hopelessness scale [48].…”