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      Associations between Psychological Problems and Quality of Life in Pediatric Short Stature from Patients’ and Parents’ Perspectives

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          Abstract

          Short stature has been associated with psychosocial impairments, but whether treatments and achieved height impact on health-related quality of life (HrQoL) and psychological functioning of children/adolescents is still controversial. This study aimed to examine the effects of height deviation and treatment status on psychosocial adaptation outcomes and to identify clinical and psychosocial determinants of internalizing/externalizing problems in a large cohort of short statured children/adolescents from seven European countries. Participants were 345 children aged 8–18 years with a clinical diagnosis of short stature and 421 parents of 4–18 year-old patients. Children and parents reported on psychological problems (Strengths and Difficulties Questionnaire), generic (KIDSCREEN) and condition-specific HrQoL (QoLISSY). According to analyses of covariance, children/adolescents with current short stature presented more parent-reported internalizing problems and lower self- and parent-reported condition-specific HrQoL, compared to patients with an achieved height above -2SD. Treated children self-reported better HrQoL than the untreated group. Hierarchical regression analysis showed that, rather than height–related clinical variables, children’s sex, younger age and poorer HrQoL were the best predictors of psychological problems, explaining 39% of the variance in patient- and 42% in parent-reported internalizing problems, and 22% of the variance in patient- and 24% in parent-reported externalizing problems. Treatment status also moderated the negative links between patient-reported HrQoL and internalizing problems, explaining 2% of additional variance. These results suggest that children with current short stature are at greater risk for internalizing problems. Routine assessment of HrQoL in pediatric healthcare may help identify children for referral to specialized psychological assessment and intervention.

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          Most cited references42

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          Psychometric properties of a Swedish version of the "Strengths and Difficulties Questionnaire".

          A new English instrument for screening mental health in children and adolescents, the Strengths and Difficulties Questionnaire (SDQ), was translated into Swedish and used for parental ratings of 900 children aged 6-10 years from the general population. The SDQ which comprises 25 items, divided into 5 subscales (prosocial, hyperactivity, emotional symptoms, conduct problems, and peer problems) was developed from the Rutter scales. An earlier English validation study has shown the two instruments to have equal ability to identify child psychiatric cases, but the SDQ also provides screening on empathy and prosocial behaviour which are aspects of child development emphasized in current child psychiatry. The design of the SDQ with both strengths' and difficulties' items supposedly increases acceptability of the instrument on behalf of informants and makes the questionnaire especially suitable for studies of general population where the majority of children are healthy. Our results, which are novel findings on the instrument, confirmed the postulated factor structure and showed significant gender-differences in results on the total scale, prosocial and hyperactivity subscales and on some of the single items. Moreover, our investigation showed that a Swedish translation of the parental version of the SDQ worked well.
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            [Normal values and evaluation of the German parents' version of Strengths and DIfficulties Questionnaire (SDQ): Results of a representative field study].

            The (SDQ) is a short questionnaire which addresses positive and negative behavioural attributes of children or adolescents. Being rated by parents or teachers, or as an equivalent self-report version, the 25 SDQ items were designed to include both strengths and difficulties. Although several reports have demonstrated the validity of the German SDQ, normative data have not yet been established. In a nationwide representative field study, parent ratings were completed for 930 children and adolescents aged between 6 and 16 years. Following verification of the scale structure by factor analysis, the observed distributions of scores were used to define normal, borderline, and abnormal score ranges. Possible effects of gender, age, and social class were also investigated. Factor analysis yielded an exact replication of the original scales. Several associations with gender, age, and social status attained statistical significance, but cut-off scores for the five subscales remained stable in different subgroups. Age- and sex-specific bandings for the total problem score reflected small differences between homogeneous subgroups. After replication and confirming the original scale factors, the availability of normative data further enhances the diagnostic value of the SDQ and facilitates future validation studies. Present evidence suggests that the SDQ may serve as a useful and economical screening measure, and in many other clinical and research settings.
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              Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy.

              The differences between child self-reports and parent proxy reports of quality of life in a large population of children with cerebral palsy were studied. We examined whether child characteristics, severity of impairment, socioeconomic factors, and parental stress were associated with parent proxy reports being respectively higher or lower than child self-reports of quality of life. This study was conducted in 2004-2005 and assessed child quality of life (using the Kidscreen questionnaire, 10 domains, each scored 0-100) through self-reports and parent proxy reports of 500 children aged 8 to 12 years who had cerebral palsy and were living in 7 countries in Europe. The mean child-reported scores of quality of life were significantly higher than the parent proxy reports in 8 domains, significantly lower for the finances domain, and similar for the emotions domain. The average frequency of disagreement (child-parent difference greater than half an SD of child scores) over all domains was 64%, with parents rating their child's quality of life lower than the children themselves in 29% to 57% of child-parent pairs. We found that high levels of stress in parenting negatively influenced parents' perception of their child's quality of life, whereas the main factor explaining parents' ratings of children's quality of life higher than the children themselves is self-reported severe child pain. This study shows that the factors associated with disagreement are different according to the direction of disagreement. In particular, parental well-being and child pain should be taken into account in the interpretation of parent proxy reports, especially when no child self-report of quality of life is available. In the latter cases, it may be advisable to obtain additional proxy reports (from caregivers, teachers, or clinicians) to obtain complementary information on the child's quality of life.
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                Author and article information

                Contributors
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                20 April 2016
                2016
                : 11
                : 4
                : e0153953
                Affiliations
                [1 ]University Hamburg-Eppendorf, Department of Medical Psychology, Hamburg, Germany
                [2 ]University of Coimbra, Cognitive and Behavioral Center for Research and Intervention, Coimbra, Portugal
                Harbin Medical University, CHINA
                Author notes

                Competing Interests: The authors have the following interests. The project was funded by Pfizer Ltd. and the authors were provided funding for its conduct. No funding was received for the writing of this paper. It was the original QoLISSY project that was funded by Pfizer and conducted in collaboration with our center and four additional centers in Europe. Centers were compensated for their involvement but in no case for any publications derived from the research itself. This analysis was researcher initiated, planned and processes and although the authors, namely Monika Bullinger, Rachel Sommer, Anja Rohenkohl and Julia Quitmann, were provided funding for the conduct of the original study, we received no compensation for the writing of this manuscript. As with other publications using QoLISSY data, Pfizer, namely Dr. Andreas Pleil, provided a courtesy review and the inclusion of any comments, suggestions, or changes of any kind are at the complete discretion of the authors. There are no patents, products in development or marketed products to declare. This does not alter the authors' adherence to all the PLOS ONE policies on sharing data and materials, as detailed online in the guide for authors

                Conceived and designed the experiments: JQ MB AR. Performed the experiments: JQ MB AR. Analyzed the data: NS. Wrote the paper: JQ MB RS AR. International study coordinator: JQ. Provided direct oversight of the study conduct, conducted child and parent interviews and debriefs, organized the qualitative and quantitative content analysis, and responsible for the preparation, design and review of the manuscript: JQ. Coordinating principle investigator and provided direct input into the design and execution of the study and the preparation and review of the manuscript: MB. PHD students within the study and provided operational support and contributed to the preparation and review of the manuscript: RS AR. Managed the data entry, psychometric analysis, and statistical aspects of the study and contributed to the preparation and review of the manuscript: NS.

                Author information
                http://orcid.org/0000-0002-0876-4211
                Article
                PONE-D-16-01781
                10.1371/journal.pone.0153953
                4838264
                27097033
                226e3f8d-45a8-4daa-83fc-546b404b21d5
                © 2016 Quitmann et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 19 January 2016
                : 6 April 2016
                Page count
                Figures: 1, Tables: 7, Pages: 20
                Funding
                The project was funded by Pfizer Ltd. and the authors were provided funding for its conduct. No funding was received for the writing of this paper. The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                People and Places
                Population Groupings
                Age Groups
                Children
                People and Places
                Population Groupings
                Families
                Children
                Medicine and Health Sciences
                Pediatrics
                Biology and Life Sciences
                Behavior
                Biology and Life Sciences
                Biochemistry
                Hormones
                Peptide Hormones
                Growth Hormone
                Biology and Life Sciences
                Psychology
                Psychometrics
                Social Sciences
                Psychology
                Psychometrics
                Medicine and Health Sciences
                Health Care
                Patients
                Research and Analysis Methods
                Research Design
                Survey Research
                Questionnaires
                Medicine and Health Sciences
                Endocrinology
                Pediatric Endocrinology
                Medicine and Health Sciences
                Pediatrics
                Pediatric Endocrinology
                Custom metadata
                Access to the QoLISSY instrument/data: QoLISSY is a joint initiative between Pfizer Limited and the University Medical Center Hamburg - Eppendorf. Copyright Pfizer Limited all rights reserved. The European QoLISSY instrument, together with comprehensive information of its development and validation process is published in the QoLISSY’s User’s Manual (Pabst Science Publishers, Lengerich, 2013). The Manual, which is available upon request, includes QoLISSY child and parent forms, as well as scoring information ( http://www.pfizerpatientreportedoutcomes.com/therapeutic-areas/cv-metabolic/endocrine).

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