23 results on '"Lievesley, K."'
Search Results
2. Psychosocial risk factors for suicidality in children and adolescents
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Carballo, J. J., Llorente, C., Kehrmann, L., Flamarique, I., Zuddas, A., Purper-Ouakil, D., Hoekstra, P. J., Coghill, D., Schulze, U. M. E., Dittmann, R. W., Buitelaar, J. K., Castro-Fornieles, J., Lievesley, K., Santosh, Paramala, and Arango, C.
- Published
- 2020
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3. Comparing the DSM-5 construct of Disruptive Mood Dysregulation Disorder and ICD-10 Mixed Disorder of Emotion and Conduct in the UK Longitudinal Assessment of Manic Symptoms (UK-LAMS) Study
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Sagar-Ouriaghli, I., Milavic, G., Barton, R., Heaney, N., Fiori, F., Lievesley, K., Singh, J., and Santosh, Paramala
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- 2018
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4. Protocol for the development and validation procedure of the managing the link and strengthening transition from child to adult mental health care (MILESTONE) suite of measures.
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Santosh, P., Adams, L., Fiori, F., Davidović, N., de Girolamo, G., Dieleman, G. C., Franić, T., Heaney, N., Lievesley, K., Madan, J., Maras, A., Mastroianni, M., McNicholas, F., Paul, M., Purper-Ouakil, D., Sagar-Ouriaghli, I., Schulze, U., Signorini, G., Street, C., and Tah, P.
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MENTAL health services ,CHILD mental health services ,TRANSITIONAL care ,MENTAL health policy ,ADULT-child relationships ,MENTAL health personnel ,CHILD psychiatry ,CHILDREN of people with mental illness - Abstract
Background: Mental health disorders in the child and adolescent population are a pressing public health concern. Despite the high prevalence of psychopathology in this vulnerable population, the transition from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS) has many obstacles such as deficiencies in planning, organisational readiness and policy gaps. All these factors contribute to an inadequate and suboptimal transition process. A suite of measures is required that would allow young people to be assessed in a structured and standardised way to determine the on-going need for care and to improve communication across clinicians at CAMHS and AMHS. This will have the potential to reduce the overall health economic burden and could also improve the quality of life for patients travelling across the transition boundary. The MILESTONE (Managing the Link and Strengthening Transition from Child to Adult Mental Health Care) project aims to address the significant socioeconomic and societal challenge related to the transition process. This protocol paper describes the development of two MILESTONE transition-related measures: The Transition Readiness and Appropriateness Measure (TRAM), designed to be a decision-making aide for clinicians, and the Transition Related Outcome Measure (TROM), for examining the outcome of transition.Methods: The TRAM and TROM have been developed and were validated following the US FDA Guidance for Patient-reported Outcome Measures which follows an incremental stepwise framework. The study gathers information from service users, parents, families and mental health care professionals who have experience working with young people undergoing the transition process from eight European countries.Discussion: There is an urgent need for comprehensive measures that can assess transition across the CAMHS/AMHS boundary. This study protocol describes the process of development of two new transition measures: the TRAM and TROM. The TRAM has the potential to nurture better transitions as the findings can be summarised and provided to clinicians as a clinician-decision making support tool for identifying cases who need to transition and the TROM can be used to examine the outcomes of the transition process.Trial Registration: MILESTONE study registration: ISRCTN83240263 Registered 23-July-2015 - ClinicalTrials.gov NCT03013595 Registered 6 January 2017. [ABSTRACT FROM AUTHOR]- Published
- 2020
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5. Development and psychometric properties of the "Suicidality: Treatment Occurring in Paediatrics (STOP) Risk and Resilience Factors Scales" in adolescents.
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Rodríguez-Quiroga, A., Flamarique, I., Castro-Fornieles, J., Lievesley, K., Buitelaar, J. K., Coghill, D., Díaz-Caneja, C. M., Dittmann, R. W., Gupta, A., Hoekstra, P. J., Kehrmann, L., Llorente, C., Purper-Ouakil, D., Schulze, U. M. E., Zuddas, A., Sala, R., Singh, J., Fiori, F., Arango, C., and Santosh, Paramala
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ANXIETY ,CAREGIVERS ,COGNITIVE testing ,STATISTICAL correlation ,MENTAL depression ,EXPERIMENTAL design ,FACTOR analysis ,FOCUS groups ,INTERPERSONAL relations ,RESEARCH methodology ,PARENTS ,PHYSICIANS ,PSYCHOMETRICS ,RESEARCH evaluation ,PSYCHOLOGICAL resilience ,RISK assessment ,SUBSTANCE abuse ,STATISTICAL reliability ,SUICIDAL ideation ,INTER-observer reliability ,MULTITRAIT multimethod techniques ,RESEARCH methodology evaluation ,DISEASE complications ,ADOLESCENCE - Abstract
Suicidality in the child and adolescent population is a major public health concern. There is, however, a lack of developmentally sensitive valid and reliable instruments that can capture data on risk, and clinical and psychosocial mediators of suicidality in young people. In this study, we aimed to develop and assess the validity of instruments evaluating the psychosocial risk and protective factors for suicidal behaviours in the adolescent population. In Phase 1, based on a systematic literature review of suicidality, focus groups, and expert panel advice, the risk factors and protective factors (resilience factors) were identified and the adolescent, parent, and clinician versions of the STOP-Suicidality Risk Factors Scale (STOP-SRiFS) and the Resilience Factors Scale (STOP-SReFS) were developed. Phase 2 involved instrument validation and comprised of two samples (Sample 1 and 2). Sample 1 consisted of 87 adolescents, their parents/carers, and clinicians from the various participating centres, and Sample 2 consisted of three sub-samples: adolescents (n = 259) who completed STOP-SRiFS and/or the STOP-SReFS scales, parents (n = 213) who completed one or both of the scales, and the clinicians who completed the scales (n = 254). The STOP-SRiFS demonstrated a good construct validity—the Cronbach Alpha for the adolescent (α = 0.864), parent (α = 0.842), and clinician (α = 0.722) versions of the scale. Test–retest reliability, inter-rater reliability, and content validity were good for all three versions of the STOP-SRiFS. The sub-scales generated using Exploratory Factor Analysis (EFA) were the (1) anxiety and depression risk, (2) substance misuse risk, (3) interpersonal risk, (4) chronic risk, and (5) risk due to life events. For the STOP-SRiFS, statistically significant correlations were found between the Columbia-Suicide Severity Rating Scale (C-SSRS) total score and the adolescent, parent, and clinical versions of the STOP-SRiFS sub-scale scores. The STOP-SRiFS showed good psychometric properties. This study demonstrated a good construct validity for the STOP-SReFS—the Cronbach Alpha for the three versions were good (adolescent: α = 0.775; parent: α = 0.808; α = clinician: 0.808). EFA for the adolescent version of the STOP-SReFS, which consists of 9 resilience factors domains, generated two factors (1) interpersonal resilience and (2) cognitive resilience. The STOP-SReFS Cognitive Resilience sub-scale for the adolescent was negatively correlated (r = − 0.275) with the C-SSRS total score, showing that there was lower suicidality in those with greater Cognitive Resilience. The STOP-SReFS Interpersonal resilience sub-scale correlations were all negative, but none of them were significantly different to the C-SSRS total scores for either the adolescent, parent, or clinician versions of the scales. This is not surprising, because the items in this sub-scale capture a much larger time-scale, compared to the C-SSRS rating period. The STOP-SReFS showed good psychometric properties. The STOP-SRiFS and STOP-SReFS are instruments that can be used in future studies about suicidality in children and adolescents. [ABSTRACT FROM AUTHOR]
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- 2020
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6. Paradoxical physiological responses to propranolol in a Rett syndrome patient: a case report
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Santosh, P. J., primary, Bell, L., additional, Lievesley, K., additional, Singh, J., additional, and Fiori, F., additional
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- 2016
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7. Development and psychometric properties of the Suicidality: Treatment Occurring in Paediatrics (STOP) Suicidality Assessment Scale (STOP-SAS) in children and adolescents.
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Flamarique, I., Santosh, P., Zuddas, A., Arango, C., Purper-Ouakil, D., Hoekstra, P. J., Coghill, D., Schulze, U., Dittmann, R. W., Buitelaar, J. K., Lievesley, K., Frongia, R., Llorente, C., Méndez, I., Sala, R., Fiori, F., and Castro-Fornieles, J.
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PSYCHOMETRICS ,SUICIDAL behavior treatment ,PEDIATRICS ,SUICIDE risk factors ,HEALTH outcome assessment ,ADVERSE health care events - Abstract
Background: To create a self-reported, internet-based questionnaire for the assessment of suicide risk in children and adolescents. Methods: As part of the EU project ‘Suicidality: Treatment Occurring in Paediatrics' (STOP project), we developed web-based Patient Reported Outcome Measures (PROMs) for children and adolescents and for proxy reports by parents and clinicians in order to assess suicidality. Based on a literature review, expert panels and focus groups of patients, we developed the items of the STOP Suicidality Assessment Scale (STOP-SAS) in Spanish and English, translated it into four more languages, and optimized it for web-based presentation using the HealthTracker
TM platform. Of the total 19 questions developed for the STOP-SAS, four questions that assess low-level suicidality were identified as screening questions (three of them for use with children, and all four for use with adolescents, parents and clinicians). A total of 395 adolescents, 110 children, 637 parents and 716 clinicians completed the questionnaire using the HealthTrackerTM , allowing us to evaluate the internal consistency and convergent validity of the STOP-SAS with the clinician-rated Columbia Suicide Severity Rating Scale (C-SSRS). Validity was also assessed with the receiver operating characteristic (ROC) area of the STOP-SAS with the C-SSRS. Results: The STOP-SAS comprises 19 items in its adolescent, parent, and clinician versions, and 14 items in its children's version. Good internal consistency was found for adolescents (Cronbach's alpha: 0.965), children (Cronbach's alpha: 0.922), parents (Cronbach's alpha: 0.951) and clinicians (Cronbach's alpha: 0.955) versions. A strong correlation was found between the STOP-SAS and the C-SSRS for adolescents (r:0.670), parents (r:0.548), clinicians (r:0.863) and children (r:0.654). The ROC area was good for clinicians' (0.917), adolescents' (0.834) and parents' (0.756) versions but only fair (0.683) for children's version. Conclusions: The STOP-SAS is a comprehensive, web-based PROM developed on the HealthTrackerTM platform, and co-designed for use by adolescents, children, parents and clinicians. It allows the evaluation of aspects of suicidality and shows good reliability and validity. [ABSTRACT FROM AUTHOR]- Published
- 2016
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8. 38. The effect of added upper-body mass to the oxygen consumption, heart rate and perceived exertion during rowing ergometry
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Mullis, R., Buckley, J.P., Delicata, P., Djuranovic, A., and Lievesley, K.
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Oxygen consumption -- Measurement ,Heart beat -- Measurement ,Heart beat -- Physiological aspects ,Ergometry -- Research - Published
- 2005
9. Suicidality Treatment Occurring in Paediatrics (STOP) Medication Suicidality Side Effects Scale in young people in two cohorts across Europe.
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Santosh P, Sala R, Lievesley K, Singh J, Arango C, Buitelaar JK, Castro-Fornieles J, Coghill D, Dittmann RW, Flamarique I, Hoekstra PJ, Llorente C, Purper-Ouakil D, Schulze U, Zuddas A, Parnell N, Mohan M, and Fiori F
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- Adolescent, Humans, Child, Reproducibility of Results, Europe, Germany, Psychometrics, Suicidal Ideation, Suicide psychology
- Abstract
Objectives: As part of the 'Suicidality: Treatment Occurring in Paediatrics (STOP)' study, we developed and performed psychometric validation of an electronic-clinical-outcome-assessment (eCOA), which included a patient-reported-outcome (ePRO), an observer-rated-outcome (eObsRO) for parents/carers and a clinician-reported-outcome (eClinRO) that allows identification and monitoring of medication-related suicidality (MRS) in adolescents., Design: STOP: Prospective study: A two phase validation study to assess the impact of medication on suicidal ideations., Setting: Six participating countries: Netherlands, UK, Germany, France, Spain and Italy that were part of the Community's Seventh Framework Programme (FP7/2007-2013) under grant agreement no. 261411., Participants: Cohort 1 consisted of 41 adolescent-completions, 50 parent-completions and 56 clinician-completions. Cohort 2 consisted of 244 adolescent-completions, 198 parent-completions and 240 clinician-completions from across the six countries. The scale was administered only to participants who have screened positive for the STOP-Suicidality Assessment Scale (STOP-SAS)., Results: A total of 24 items for the development of the STOP-Medication Suicidality Side Effects Scale (STOP-MS
3 ) were identified and three versions (for patients, parents and clinicians) of the STOP-MS3 were developed and validated in two separate study cohorts comprising of adolescents, their parents and clinicians. Cronbach's α coefficients were above 0.85 for all domains. The inter-rater reliability of the STOP-MS3 was good and significant for the adolescent (ePRO), clinician (eClinRO) (r=0.613), parent (eObsRO) versions of the scale (r=0.394) and parent and clinician (r=0.347). Exploratory factor analysis identified a 3-factor model across 24 items for the adolescent and parent version of the scale: (1) Emotional Dysregulation, (2) Somatic Dysregulation and (3) Behavioural Dysregulation. For the clinician version, a 4-factor model defined the scale structure: (1) Somatic Dysregulation, (2) Emotional Dysregulation, (3) Behavioural Dysregulation and (4) Mood Dysregulation., Conclusion: These findings suggest that the STOP-MS3 scale, a web-based eCOA, allows identification and monitoring of MRS in the adolescent population and shows good reliability and validity., Competing Interests: Competing interests: PS is a co-inventor of the HealthTracker platform, a Chief Executive Officer (CEO) of HealthTracker Ltd and a shareholder of HealthTracker Ltd. and has received research funding for conducting clinical trials from Anavex Scientific Corp, GW Pharma, and Newron Pharmaceuticals. FF is a Chief Technology Officer (CTO) and shareholder of HealthTracker Ltd. KL was a Project Manager employed at HealthTracker Ltd. CA has been a consultant to or has received honoraria or grants from Acadia, Angelini, Gedeon Richter, Janssen Cilag, Lundbeck, Medscape, Minerva, Otsuka, Roche, Sage, Servier, Shire, Schering Plough, Sumitomo Dainippon Pharma, Sunovion and Takeda. JKB has been in the past 3 years a consultant to / member of advisory board of / and/or speaker for Takeda/Shire, Roche, Medice, Angelini, Janssen and Servier. He is not an employee of any of these companies, and not a stock shareholder of any of these companies. He has no other financial or material support, including expert testimony, patents, royalties. RWD has received compensation for serving as consultant or speaker, or he or the institution he works for have received research support or royalties from the organisations or companies indicated: EU (FP7 Programme), US National Institute of Mental Health (NIMH), German Federal Ministry of Health/Regulatory Agency (BMG/BfArM), German Federal Ministry of Education and Research (BMBF), German Research Foundation (DFG), Volkswagen Foundation; Boehringer Ingelheim, Ferring, Janssen-Cilag, Lilly, Lundbeck, Otsuka, Servier, Shire, Sunovion/Takeda and Theravance. He owns Eli Lilly stock. Since 2008, he has fully been affiliated with the Department of CAP, CIMH, Medical Faculty Mannheim, University of Heidelberg, Germany. DP-O reports that in the past 3 years, she had non-financial support from HAC Pharma and Boehringer-Ingelheim, honoraria from Medice outside the submitted work and unpaid scientific coordination for a study sponsored by Mensia. AZ in the past 3 years had been a consultant to / member of advisory board of / and/or speaker or received research grants from: Angelini, Jannsen, Lundbeck and Otsuka, Servier, Shire/Takeda. He is not an employee of any of these companies, and not a stock shareholder of any of these companies, He received royalties from Oxford University Press and Giuntio OS. RS has been an advisor to or has received honoraria from Takeda. US received speaker’s fees from Takeda/Shire. DC has been in the past 3 years a consultant to / member of advisory board of / and/or speaker for Takeda/Shire, Novartis, Medice and Servier. He has received royalties from Oxford University Press and Cambridge University Press. He is not an employee of any of these companies, and not a stock shareholder of any of these companies. Part of this data has been included in an FP7 STOP Report to the European Union., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)- Published
- 2023
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10. Cohort profile: demographic and clinical characteristics of the MILESTONE longitudinal cohort of young people approaching the upper age limit of their child mental health care service in Europe.
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Gerritsen SE, Maras A, van Bodegom LS, Overbeek MM, Verhulst FC, Wolke D, Appleton R, Bertani A, Cataldo MG, Conti P, Da Fonseca D, Davidović N, Dodig-Ćurković K, Ferrari C, Fiori F, Franić T, Gatherer C, De Girolamo G, Heaney N, Hendrickx G, Kolozsvari A, Levi FM, Lievesley K, Madan J, Martinelli O, Mastroianni M, Maurice V, McNicholas F, O'Hara L, Paul M, Purper-Ouakil D, de Roeck V, Russet F, Saam MC, Sagar-Ouriaghli I, Santosh PJ, Sartor A, Schandrin A, Schulze UME, Signorini G, Singh SP, Singh J, Street C, Tah P, Tanase E, Tremmery S, Tuffrey A, Tuomainen H, van Amelsvoort TAMJ, Wilson A, Walker L, and Dieleman GC
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- Adolescent, Cohort Studies, Demography, Europe, Humans, Mental Health, Prospective Studies, Retrospective Studies, Adolescent Health Services, Mental Health Services
- Abstract
Purpose: The presence of distinct child and adolescent mental health services (CAMHS) and adult mental health services (AMHS) impacts continuity of mental health treatment for young people. However, we do not know the extent of discontinuity of care in Europe nor the effects of discontinuity on the mental health of young people. Current research is limited, as the majority of existing studies are retrospective, based on small samples or used non-standardised information from medical records. The MILESTONE prospective cohort study aims to examine associations between service use, mental health and other outcomes over 24 months, using information from self, parent and clinician reports., Participants: Seven hundred sixty-three young people from 39 CAMHS in 8 European countries, their parents and CAMHS clinicians who completed interviews and online questionnaires and were followed up for 2 years after reaching the upper age limit of the CAMHS they receive treatment at., Findings to Date: This cohort profile describes the baseline characteristics of the MILESTONE cohort. The mental health of young people reaching the upper age limit of their CAMHS varied greatly in type and severity: 32.8% of young people reported clinical levels of self-reported problems and 18.6% were rated to be 'markedly ill', 'severely ill' or 'among the most extremely ill' by their clinician. Fifty-seven per cent of young people reported psychotropic medication use in the previous half year., Future Plans: Analysis of longitudinal data from the MILESTONE cohort will be used to assess relationships between the demographic and clinical characteristics of young people reaching the upper age limit of their CAMHS and the type of care the young person uses over the next 2 years, such as whether the young person transitions to AMHS. At 2 years follow-up, the mental health outcomes of young people following different care pathways will be compared., Trial Registration Number: NCT03013595., Competing Interests: Competing interests: SPS is part-funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care West Midlands (NIHR CLAHRC WM), now recommissioned as NIHR Applied Research Collaboration West Midlands. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. PS is the co-inventor of the HealthTrackerTM and is the Chief Executive Officer and shareholder in HealthTracker Ltd. FF is a Chief Technical Officer and AK is the Chief Finance Officer employed by HealthTracker Ltd respectively. FCV publishes the Dutch translations of ASEBA, from which he receives remuneration. AM was a speaker and advisor for Neurim, Shire, Infectopharm and Lilly (all not related to transition research)., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
- Published
- 2021
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11. Validation of the Transition Readiness and Appropriateness Measure (TRAM) for the Managing the Link and Strengthening Transition from Child to Adult Mental Healthcare in Europe (MILESTONE) study.
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Santosh P, Singh J, Adams L, Mastroianni M, Heaney N, Lievesley K, Sagar-Ouriaghli I, Allibrio G, Appleton R, Davidović N, de Girolamo G, Dieleman G, Dodig-Ćurković K, Franić T, Gatherer C, Gerritsen S, Gheza E, Madan J, Manenti L, Maras A, Margari F, McNicholas F, Pastore A, Paul M, Purper-Ouakil D, Rinaldi F, Sakar V, Schulze U, Signorini G, Street C, Tah P, Tremmery S, Tuffrey A, Tuomainen H, Verhulst F, Warwick J, Wilson A, Wolke D, Fiori F, and Singh S
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- Adolescent, Adult, Child, Europe, Female, Health Services Research, Humans, Male, Prospective Studies, Mental Health Services, Transition to Adult Care
- Abstract
Objective: Young people moving from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS) are faced with significant challenges. To improve this state of affairs, there needs to be a recognition of the problem and initiatives and an urgent requirement for appropriate tools for measuring readiness and outcomes at the transfer boundary (16-18 years of age in Europe). The objective of this study was to develop and validate the Transition Readiness and Appropriateness Measure (TRAM) for assessing a young person's readiness for transition, and their outcomes at the transfer boundary., Design: MILESTONE prospective study., Setting: Eight European Union (EU) countries participating in the EU-funded MILESTONE study., Participants: The first phase (MILESTONE validation study) involved 100 adolescents (pre-transition), young adults (post-transition), parents/carers and both CAMHS and AMHS clinicians. The second phase (MILESTONE cohort study and nested cluster randomised trial) involved over 1000 young people., Results: The development of the TRAM began with a literature review on transitioning and a review of important items regarding transition by a panel of 34 mental health experts. A list of 64 items of potential importance were identified, which together comprised the TRAM. The psychometric properties of the different versions of the TRAM were evaluated and showed that the TRAM had good reliability for all versions and low-to-moderate correlations when compared with other established instruments and a well-defined factor structure. The main results of the cohort study with the nested cluster randomised trial are not reported., Conclusion: The TRAM is a reliable instrument for assessing transition readiness and appropriateness. It highlighted the barriers to a successful transition and informed clinicians, identifying areas which clinicians on both sides of the transfer boundary can work on to ease the transition for the young person., Trial Registration Number: ISRCTN83240263 (Registered 23 July 2015), NCT03013595 (Registered 6 January 2017); Pre-results., Competing Interests: Competing interests: PS is the co-inventor of the HealthTracker and is the Chief Executive Officer and shareholder in HealthTracker. FF is a Chief Technical Officer and KL is a Project Manager employed by HealthTracker. FV is the Dutch distributor of ASEBA from which he receives remuneration. SPS is part-funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care WM (NIHR CLAHRC WM)., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
- Published
- 2020
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12. Our experience of employing a musculoskeletal practitioner in general practice.
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Leach J and Lievesley K
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- Family Practice, Humans, Primary Health Care, United Kingdom, General Practice, Physical Therapists
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- 2020
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13. Cognitive and behavioural responses to symptoms in adolescents with chronic fatigue syndrome: A case-control study nested within a cohort.
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Loades ME, Rimes K, Lievesley K, Ali S, and Chalder T
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- Adolescent, Asthma psychology, Case-Control Studies, Child, Cohort Studies, Depression psychology, Female, Health Status, Humans, Male, Surveys and Questionnaires, Cognition physiology, Fatigue Syndrome, Chronic psychology
- Abstract
Background: What adolescents think about symptoms and what they do in response could contribute to fatigue maintenance. We compared the cognitive and behavioural responses of adolescents and their parents with chronic fatigue syndrome (CFS; N = 121) and asthma ( N = 27) and explored the predictive value of these variables on fatigue and functioning in CFS., Method: Consecutively referred adolescents with CFS were recruited. Questionnaires, completed by adolescents and parents, assessed fatigue, functioning, mood and cognitive and behavioural responses to symptoms. Age-matched adolescents with asthma completed the same questionnaires. Adolescents with CFS completed questionnaires again approximately 3 months later., Results: Adolescents with CFS scored higher on all unhelpful cognitive and behavioural subscales than adolescents with asthma. Parents' cognitions about their child's symptoms were associated with adolescent's own cognitions. Unhelpful cognitive and behavioural responses, particularly, damage beliefs, predicted subsequent fatigue in CFS, and all-or-nothing behaviour, catastrophising and damage beliefs predicted subsequent physical functioning., Conclusion: Unhelpful cognitive and behavioural responses to symptoms appear to be particularly prominent in adolescents with CFS. There is some consistency but not a perfect match between cognitive and behavioural responses to symptoms reported by adolescents and their parents. These responses could be contributing to fatigue maintenance and disability.
- Published
- 2019
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14. Perfectionism and beliefs about emotions in adolescents with chronic fatigue syndrome and their parents: a preliminary investigation in a case control study nested within a cohort.
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Loades ME, Rimes KA, Lievesley K, Ali S, and Chalder T
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- Adolescent, Case-Control Studies, Child, Cohort Studies, Emotional Regulation, Fatigue Syndrome, Chronic epidemiology, Female, Humans, Male, Surveys and Questionnaires, Emotions, Fatigue Syndrome, Chronic psychology, Parents psychology, Perfectionism
- Abstract
Objectives: To investigate perfectionism and beliefs about emotions in adolescents with chronic fatigue syndrome (CFS) and their parents. Design: Case-control comparing adolescents (age 11-18) with CFS ( N = 121), asthma ( N = 27) and healthy controls ( N = 78) with a 3-month follow up for CFS participants. Main outcome measures: Adolescents: Chalder Fatigue Questionnaire, physical functioning, Beliefs about Emotions scale (BES), Child and Adolescent Perfectionism Scale, Frost Multidimensional Perfectionism Scale (FMPS). Parents : BES, FMPS, Self-sacrificing scale, Affective styles questionnaire. Results: Adolescents with CFS did not consistently report higher levels of perfectionism and unhelpful beliefs about emotions than adolescents with asthma or healthy adolescents. Mothers' and adolescents' beliefs about emotions and unhelpful perfectionism were significantly associated ( p = .007). Linear regression found that neither adolescent perfectionism nor beliefs about emotions accounted for variance in subsequent fatigue or physical functioning. Conclusion : Parental perfectionism and emotion regulation style may contribute to perfectionism in adolescents with CFS. Parental representations could contribute to fatigue maintenance.
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- 2019
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15. Home-based family focused rehabilitation for adolescents with severe Chronic Fatigue Syndrome.
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Burgess M, Lievesley K, Ali S, and Chalder T
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- Adolescent, Child, Female, Follow-Up Studies, Humans, Male, Cognitive Behavioral Therapy methods, Fatigue Syndrome, Chronic rehabilitation, Home Care Services, Homebound Persons rehabilitation, Outcome Assessment, Health Care
- Abstract
Aims:: The purpose of this article is to describe and evaluate a home based, family focused rehabilitative approach for severely affected housebound adolescents with Chronic Fatigue Syndrome (CFS). The main aims were to facilitate a return to school, improve physical functioning, reduce fatigue and assess any adverse effects of the intervention., Methods:: Six housebound adolescents aged 11-18, diagnosed with CFS by a paediatrician, were assessed and treated at home by an experienced cognitive behaviour therapist. Outcomes were assessed 12 months after discharge from treatment., Results:: At 12 months follow-up all patients had returned to either school or college, and physical functioning had improved in most of the patients. Fatigue had reduced in some. No adverse effects of the intervention were reported., Conclusion:: Severely affected adolescents with CFS showed improved physical functioning and social adjustment after a home-based rehabilitative approach. Although several patients showed improvements in physical functioning, they did not all show substantial improvements in fatigue. At this crucial stage of development, it is important to offer young people and their parents hope by stating that improvement is possible.
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- 2019
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16. Does fatigue and distress in a clinical cohort of adolescents with chronic fatigue syndrome correlate with fatigue and distress in their parents?
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Loades ME, Rimes KA, Ali S, Lievesley K, and Chalder T
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- Adolescent, Child, Cross-Sectional Studies, Family Health, Fatigue Syndrome, Chronic physiopathology, Female, Humans, Male, Stress, Psychological, Surveys and Questionnaires, Anxiety psychology, Family Relations psychology, Fatigue Syndrome, Chronic psychology, Parents psychology
- Abstract
Objectives: Previous studies have found that parents of children with chronic fatigue syndrome (CFS) are more fatigued, and mothers are more distressed than healthy controls. Managing the disabling symptoms of CFS can result in disruption and burden for the family. Most research has focused on mothers. This study sought to further explore the associations between adolescent fatigue and distress and parental fatigue and distress, as well as family functioning, including both mothers and fathers., Design: Cross-sectional study of a clinical cohort of consecutive attenders at a specialist chronic fatigue unit., Methods: Questionnaires were completed by adolescents (N = 115, age 11-18) with a confirmed diagnosis of CFS and their mothers (N = 100) and fathers (N = 65)., Results: Maternal fatigue was significantly correlated with maternal distress, but not with adolescent fatigue, depression, anxiety, or functioning. This pattern held true for paternal fatigue. Maternal and paternal anxiety and depression were significantly correlated with family functioning. Paternal and maternal distress were correlated with each other. Mothers and fathers tended to have a consistent view of family functioning. Family functioning, specifically being overwhelmed by difficulties and scoring lower on strengths and adaptability, was positively associated with adolescent depression. Unexpectedly, higher levels of adolescent fatigue and poorer physical functioning were associated with better family functioning as rated by the mother., Conclusions: Parents of adolescents with fatigue scored near to or within normative range for non-clinical samples on distress, fatigue, and family functioning. Parental distress may contribute to or result from poorer family functioning. Family functioning, particularly building strengths and adaptability, may be clinically important in CFS, as well as attending to parental (particularly paternal) distress in families where adolescents are low in mood., (© 2018 John Wiley & Sons Ltd.)
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- 2019
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17. Illness beliefs of adolescents with CFS and their parents: the perceived causes of illness and beliefs about recovery.
- Author
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Loades ME, Rimes KA, Lievesley K, Ali S, and Chalder T
- Abstract
The objective here was to explore beliefs about the causes of chronic fatigue syndrome (CFS) in a cohort of adolescents with CFS and their parents, and to explore the adolescent's beliefs about recovery. Questionnaires were administered to a clinical cohort of adolescents (n = 104) and their parents (n = 102 mothers and 63 fathers), presenting to a specialist CFS unit. These included a question about the causes of their illness. Adolescents were also asked about the projected timeline of their recovery from CFS. The most commonly endorsed causes of CFS by adolescents and their parents were a virus and/or contextual factors and stress. Adolescents and their parents were in close agreement about the causes of CFS. Most adolescents said they did not know how long it would take them to recover from CFS. Informing adolescents about the prognosis for CFS is an important aspect of treatment.
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- 2018
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18. A process evaluation of the first year of Leading Change, Adding Value.
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Zubairu K, Lievesley K, Silverio SA, McCann S, Fillingham J, Kaehne A, Sandars J, Carey L, Aitkenhead S, and Brown J
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- Evaluation Studies as Topic, Surveys and Questionnaires, United Kingdom, Leadership, Organizational Innovation
- Abstract
Background: Leading Change, Adding Value (LCAV) is a national framework to support transformational change across health and social care., Design: a qualitative approach of semi-structured interviews was used to capture information on how LCAV has been disseminated in its early stages from the perspective of key stakeholders and partners. This also included looking at how it might be embedded into everyday practice., Methods: data collection took place over a 3-month period between January and March 2017. Twenty semi-structured telephone interviews were conducted with key LCAV partners and stakeholders from across health and social care. Perceptions were sought as to how LCAV has been, and may be, used by frontline staff following initial dissemination and any potential barriers and enablers to taking the framework forward., Results: a thematic framework analysis of data identified a three-theme paradigm to evaluate LCAV: past-where has this come from? Present-where is it now? Future-where is this going?., Conclusion: a programme of dissemination events and examples of good practice in the form of case studies have been valuable tools to engage nursing, midwifery and care staff across health and social care. Continuing to establish networks of frontline staff engaging with LCAV and supporting each other will help facilitate best practice sharing, and multi-professional and cross-boundary working.
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- 2018
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19. The presence of co-morbid mental health problems in a cohort of adolescents with chronic fatigue syndrome.
- Author
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Loades ME, Rimes KA, Ali S, Lievesley K, and Chalder T
- Subjects
- Adolescent, Child, Cohort Studies, Comorbidity, Cross-Sectional Studies, Female, Humans, Male, Anxiety Disorders epidemiology, Depressive Disorder, Major epidemiology, Fatigue Syndrome, Chronic epidemiology
- Abstract
Objective: To report on the prevalence of mental health disorders in adolescents with chronic fatigue syndrome (CFS) and to compare the diagnoses identified by a brief clinician-administered psychiatric interview with self-report screening questionnaires., Design: Cross-sectional study., Setting: Consecutive attenders to specialist CFS clinics in the United Kingdom., Patients: N = 52 adolescents, age 12-18 years with CFS., Measures: Self-report questionnaires and a brief structured psychiatric diagnostic interview, administered by a researcher., Results: On the psychiatric interview, 34.6% met a diagnosis of major depressive disorder and 28.8% had an anxiety disorder. Of these, 15% had co-morbid anxiety and depression. Those with a depression diagnosis reported significantly greater interference on the school and social adjustment scale. They also scored significantly higher on trait anxiety, but not on state anxiety. There were no differences between those who had an anxiety disorder and those who did not on fatigue, disability or depressive symptoms. Children's Depression Inventory (CDI) score was associated with a depression diagnosis on the psychiatric interview. However, neither the state nor the trait subscale of the State-Trait Anxiety Inventory (STAI) was associated with an anxiety diagnosis., Conclusion: Clinicians should assess for the presence of anxiety and depressive disorders in adolescents with CFS using a validated psychiatric interview. Treatment should be flexible enough to accommodate fatigue, depression and anxiety. Transdiagnostic approaches may suit this purpose. Goals should include pleasurable activities particularly for those who are depressed.
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- 2018
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20. Propranolol for treating emotional, behavioural, autonomic dysregulation in children and adolescents with autism spectrum disorders.
- Author
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Sagar-Ouriaghli I, Lievesley K, and Santosh PJ
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- Adolescent, Adrenergic beta-Antagonists pharmacology, Aggression drug effects, Autism Spectrum Disorder physiopathology, Autonomic Nervous System Diseases drug therapy, Autonomic Nervous System Diseases etiology, Child, Cognition drug effects, Emotions drug effects, Humans, Propranolol pharmacology, Self-Injurious Behavior drug therapy, Adrenergic beta-Antagonists administration & dosage, Autism Spectrum Disorder drug therapy, Propranolol administration & dosage
- Abstract
Objectives: To date, there is no single medication prescribed to alleviate all the core symptoms of Autism Spectrum Disorder (ASD; National Institute of Health and Care Excellence, 2016). Both serotonin reuptake inhibitors and drugs for psychosis possess therapeutic drawbacks when managing anxiety and aggression in ASD. This review sought to appraise the use of propranolol as a pharmacological alternative when managing emotional, behavioural and autonomic dysregulation (EBAD) and other symptoms., Materials and Methods: Sixteen reports examined the administration of propranolol in the context of ASD., Results: Sixteen reports broadly covered cognitive domains, neural correlates, and behavioural domains. From the eight single-dose clinical trials, propranolol led to significant improvements in cognitive performance - verbal problem solving, social skills, mouth fixation, and conversation reciprocity; and changes in neural correlates - improvement in semantic networks and functional connectivity. The remaining eight case series and single case reports showed improvements in EBAD, anxiety, aggressive, self-injurious and hypersexual behaviours. Additionally, propranolol significantly improved similar behavioural domains (aggression and self-injury) for those with acquired brain injury., Conclusion: This review indicates that propranolol holds promise for EBAD and cognitive performance in ASD. Given the lack of good quality clinical trials, randomised controlled trials are warranted to explore the efficacy of propranolol in managing EBAD in ASD.
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- 2018
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21. Stress vulnerability in adolescents with chronic fatigue syndrome: experimental study investigating heart rate variability and skin conductance responses.
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Rimes KA, Lievesley K, and Chalder T
- Subjects
- Adaptation, Psychological physiology, Adolescent, Female, Humans, Male, Anxiety physiopathology, Asthma physiopathology, Autonomic Nervous System physiopathology, Fatigue Syndrome, Chronic physiopathology, Galvanic Skin Response physiology, Heart Rate physiology, Stress, Psychological physiopathology
- Abstract
Background: Stress vulnerability has been implicated in adolescent chronic fatigue syndrome (CFS), but has rarely been investigated directly. This study compared psychological and physiological responses to a laboratory social performance task in adolescents with CFS with chronic illness (asthma) and healthy control groups., Methods: Adolescents with CFS (n = 60), adolescents with asthma (n = 31) and healthy adolescents (n = 78) completed questionnaires before and after a social performance task. Skin conductance responses (SCR; mean SCR and Max-Min) and heart rate variability (low frequency/high frequency; LF/HF and root mean square difference of successive RR intervals; RMSSD) was measured before, during and after the task., Results: Baseline heart rate variability (HRV) (RMSSD) was significantly lower in the CFS and Asthma groups than the HC. During the speech, the CFS and Asthma groups had higher HRV (LF/HF) than the HC, adjusting for baseline LF/HF. Although the asthma group showed a subsequent reduction in HRV during recovery, the CFS group did not. Similarly, during recovery after the task, the CFS group showed a continued increase in skin conductance (Min-Max), unlike the Asthma and HC groups. Compared to control groups, adolescents with CFS expected to find the task more difficult, were more anxious beforehand and afterwards, rated it as more difficult, evaluated their performance more negatively and had lower observer ratings of performance. Parents of adolescents with CFS expected that their child would perform less well in the task than parents of control participants., Conclusions: Adolescents with CFS showed autonomic nervous system responses that are consistent with chronic stress vulnerability, difficulty coping with acute stress and slower recovery after acute stress. Self-report measures also indicated greater trait, pre- and posttask anxiety in the CFS group., (© 2017 Association for Child and Adolescent Mental Health.)
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- 2017
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22. Development of the Tailored Rett Intervention and Assessment Longitudinal (TRIAL) database and the Rett Evaluation of Symptoms and Treatments (REST) Questionnaire.
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Santosh P, Lievesley K, Fiori F, and Singh J
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- Adolescent, Adult, Child, Female, Humans, Internet, Male, Rett Syndrome genetics, Symptom Assessment, Validation Studies as Topic, Wearable Electronic Devices, Young Adult, Databases, Factual, Research Design, Rett Syndrome physiopathology, Rett Syndrome psychology, Surveys and Questionnaires
- Abstract
Introduction: Rett syndrome (RTT) is a pervasive neurodevelopmental disorder that presents with deficits in brain functioning leading to language and learning regression, characteristic hand stereotypies and developmental delay. Different mutations in the gene implicated in RTT- methyl-CpG-binding protein 2 ( MECP2 ) establishes RTT as a disorder with divergent symptomatology ranging from individuals with severe to milder phenotypes. A reliable and single multidimensional questionnaire is needed that can embrace all symptoms, and the relationships between them, and can map clinically meaningful data to symptomatology across the lifespan in patients with RTT. As part of the HealthTracker-based Tailored Rett Intervention and Assessment Longitudinal (TRIAL) database, the Rett Evaluation of Symptoms and Treatments (REST) Questionnaire will be able to marry with the physiological aspects of the disease obtained using wearable sensor technology, along with genetic and psychosocial data to stratify patients. Taken together, the web-based TRIAL database will empower clinicians and researchers with the confidence to delineate between different aspects of disorder symptomatology to streamline care pathways for individuals or for those patients entering clinical trials. This protocol describes the anticipated development of the REST questionnaire and the TRIAL database which links with the outcomes of the wearable sensor technology, and will serve as a barometer for longitudinal patient monitoring in patients with RTT., Methods and Analysis: The US Food and Drug Administration Guidance for Patient-Reported Outcome Measures will be used as a template to inform the methodology of the study. It will follow an iterative framework that will include item/concept identification, item/concept elicitation in parent/carer-mediated focus groups, expert clinician feedback, web-based presentation of questionnaires, initial scale development, instrument refinement and instrument validation., Ethics and Dissemination: The study has received favourable opinion from the National Health Service (NHS) Research Ethics Committee (REC): NHS Research Ethics Committee (REC)-London, Bromley Research Ethics Committee (reference: 15/LO/1772)., Competing Interests: Competing interests: PS is the coinventor of the HealthTracker and is the chief executive officer and shareholder in HealthTracker. FF is a data analyst and KL is a project manager employed by HealthTracker. JS is on the professional advisory board for Reverse Rett UK and acts as a scientific advisor., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)
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- 2017
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23. A review of the predisposing, precipitating and perpetuating factors in Chronic Fatigue Syndrome in children and adolescents.
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Lievesley K, Rimes KA, and Chalder T
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- Adolescent, Anxiety Disorders epidemiology, Anxiety Disorders psychology, Child, Comorbidity, Fatigue Syndrome, Chronic epidemiology, Fatigue Syndrome, Chronic psychology, Female, Humans, Incidence, Male, Mental Disorders epidemiology, Mental Disorders psychology, Prevalence, Risk Factors, Sex Factors, Fatigue Syndrome, Chronic etiology, Personality, Self Concept
- Abstract
Chronic Fatigue Syndrome (CFS) is a condition characterised by severe mental and physical fatigue coupled with profound disability. The purpose of this review was to investigate psychological, social and physiological factors associated with fatigue and disability in CFS in children and adolescents. The review aimed to gain an overview of the strength of evidence for the relationship between these different factors and CFS in young people. Seventy-nine studies met the inclusion criteria and were included in the review. A narrative synthesis of these studies was conducted. The strongest and most consistent finding was that rates of psychiatric co-morbidity, predominantly anxiety and depressive disorders, were higher in young people with CFS compared to healthy controls or illness control groups. Studies suggested that many children and adolescents with CFS reported that their illness began with an infection and there was some objective and prospective evidence to support this. Preliminary evidence suggested a link between CFS and a family history of CFS, high expectations from both the parent and child, personality traits such as conscientiousness and physical illness attributions. The evidence was limited by methodological problems. Few studies were prospective in nature and future research should address this. Clinical implications of the findings are discussed and a hypothesised model of the factors associated with CFS in children and adolescents is presented., (Copyright © 2014 Elsevier Ltd. All rights reserved.)
- Published
- 2014
- Full Text
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