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      Effectiveness of time-limited eye movement desensitization reprocessing therapy for parents of children with a rare life-limiting illness: a randomized clinical trial

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          Abstract

          Background

          Parents of children with a rare progressive life-limiting illness are at risk for parental posttraumatic stress disorder (PTSD). Studies on the treatment of parental PTSD with eye movement and desensitization reprocessing (EMDR) therapy in pediatric practice are lacking. Therefore this study aims to evaluate the feasibility and effectiveness of time-limited EMDR therapy in reducing PTSD symptoms, comorbid psychological symptoms, distress, and parental stress.

          Methods

          Mono-center randomized clinical trial conducted between February 2020 and April 2021. Fourteen parents ( N = 7 mothers, N = 7 fathers) of mucopolysaccharidosis type III patients reporting PTSD symptoms on a (sub)clinical level were assigned to EMDR or a wait-list control condition followed by EMDR. Four sessions of EMDR (each 90 min) divided over two half-days were offered. Measurements were conducted at baseline, post-treatment/post-waitlist, and 3-months post-treatment. The primary outcome was PTSD symptom severity (PTSD Check List for DSM-5). Secondary outcomes included comorbid psychological symptoms (Brief Symptom Inventory), distress (Distress Thermometer for Parents) and parenting stress (Parenting Stress Questionnaire). Between-group comparisons pre-to-post treatment ( N = 7 EMDR vs. N = 7 wait-list) and within-group comparisons (EMDR, N = 14) from pre-to-post treatment and from pre-treatment to 3-months follow-up were carried out per intent-to-treat linear mixed model analyses.

          Results

          Compared to wait-list, EMDR resulted in a significant reduction on total PTSD symptom severity ( d = 1.78) and on comorbid psychological symptoms, distress and parenting stress ( d = .63–1.83). Within-group comparisons showed a significant effect on all outcomes at post-treatment ( d = 1.04–2.21) and at 3-months follow-up ( d = .96–2.30) compared to baseline. EMDR was well-tolerated, associated with a low drop-out rate, a high therapy adherence and no adverse events.

          Conclusion

          Time-limited EMDR reduces PTSD symptoms, psychological comorbidity, distress and parenting stress in parents of children with a rare progressive life-limiting illness. This treatment was feasible for these overburdened parents. Recurrent monitoring of PTSD symptoms, and, if needed, offering this time-limited type of trauma treatment should be introduced in everyday pediatric practice.

          Trial registration Netherlands Trial Register, NL8496. Registered 01-04-2020, https://trialsearch.who.int/Trial2.aspx?TrialID=NL8496.

          Supplementary Information

          The online version contains supplementary material available at 10.1186/s13023-022-02500-9.

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          Most cited references39

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          Statistical Power Analysis for the Behavioral Sciences

          <i>Statistical Power Analysis</i> is a nontechnical guide to power analysis in research planning that provides users of applied statistics with the tools they need for more effective analysis. The Second Edition includes: <br> * a chapter covering power analysis in set correlation and multivariate methods;<br> * a chapter considering effect size, psychometric reliability, and the efficacy of "qualifying" dependent variables and;<br> * expanded power and sample size tables for multiple regression/correlation.<br>
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            Psychometric properties of the PTSD Checklist for Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (PCL-5) in veterans.

            This study examined the psychometric properties of the posttraumatic stress disorder (PTSD) Checklist for Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (PCL-5; Weathers, Litz, et al., 2013b) in 2 independent samples of veterans receiving care at a Veterans Affairs Medical Center (N = 468). A subsample of these participants (n = 140) was used to define a valid diagnostic cutoff score for the instrument using the Clinician-Administered PTSD Scale for DSM-5 (CAPS-5; Weathers, Blake, et al., 2013) as the reference standard. The PCL-5 test scores demonstrated good internal consistency (α = .96), test-retest reliability (r = .84), and convergent and discriminant validity. Consistent with previous studies (Armour et al., 2015; Liu et al., 2014), confirmatory factor analysis revealed that the data were best explained by a 6-factor anhedonia model and a 7-factor hybrid model. Signal detection analyses using the CAPS-5 revealed that PCL-5 scores of 31 to 33 were optimally efficient for diagnosing PTSD (κ(.5) = .58). Overall, the findings suggest that the PCL-5 is a psychometrically sound instrument that can be used effectively with veterans. Further, by determining a valid cutoff score using the CAPS-5, the PCL-5 can now be used to identify veterans with probable PTSD. However, findings also suggest the need for research to evaluate cluster structure of DSM-5. (PsycINFO Database Record
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              A practical guide to multilevel modeling.

              Collecting data from students within classrooms or schools, and collecting data from students on multiple occasions over time, are two common sampling methods used in educational research that often require multilevel modeling (MLM) data analysis techniques to avoid Type-1 errors. The purpose of this article is to clarify the seven major steps involved in a multilevel analysis: (1) clarifying the research question, (2) choosing the appropriate parameter estimator, (3) assessing the need for MLM, (4) building the level-1 model, (5) building the level-2 model, (6) multilevel effect size reporting, and (7) likelihood ratio model testing. The seven steps are illustrated with both a cross-sectional and a longitudinal MLM example from the National Educational Longitudinal Study (NELS) dataset. The goal of this article is to assist applied researchers in conducting and interpreting multilevel analyses and to offer recommendations to guide the reporting of MLM analysis results.
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                Author and article information

                Contributors
                f.a.wijburg@amsterdamumc.nl
                Journal
                Orphanet J Rare Dis
                Orphanet J Rare Dis
                Orphanet Journal of Rare Diseases
                BioMed Central (London )
                1750-1172
                2 September 2022
                2 September 2022
                2022
                : 17
                : 328
                Affiliations
                [1 ]GRID grid.7177.6, ISNI 0000000084992262, Emma Children’s Hospital, Amsterdam UMC, Child and Adolescent Psychiatry and Psychosocial Care, Amsterdam Reproduction and Development, Amsterdam Public Health, , University of Amsterdam, ; Amsterdam, The Netherlands
                [2 ]GRID grid.7177.6, ISNI 0000000084992262, Emma Children’s Hospital and Amsterdam Lysosome Center “Sphinx”, Amsterdam UMC, Pediatric Metabolic Diseases, , University of Amsterdam, ; Meibergdreef 9, Amsterdam, Netherlands
                [3 ]GRID grid.7177.6, ISNI 0000000084992262, Academic Center for Child and Adolescent Psychiatry, Amsterdam UMC, Levvel, , University of Amsterdam, ; Amsterdam, The Netherlands
                Author information
                http://orcid.org/0000-0002-0950-1368
                Article
                2500
                10.1186/s13023-022-02500-9
                9437394
                36056362
                8b1fc1e5-3ad6-41b3-880d-3b76ad752580
                © The Author(s) 2022

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                : 24 May 2022
                : 18 August 2022
                Funding
                Funded by: Amsterdam Public Health Research Institute, section Mental Health
                Funded by: Kinderen en Kansen Foundation
                Categories
                Research
                Custom metadata
                © The Author(s) 2022

                Infectious disease & Microbiology
                ptsd,trauma,parents,emdr,life-limiting illness
                Infectious disease & Microbiology
                ptsd, trauma, parents, emdr, life-limiting illness

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