The Permutation Distancing Test for dependent single-case observational AB-phase design data: A Monte Carlo simulation study.

The Permutation Distancing Test (PDT) is a nonparametric test for evaluating treatment effects in dependent single-case observational design (SCOD) AB-phase data without linear trends. Monte Carlo methods were used to estimate the PDT power and type I error rate, and to compare them to those of the Single-Case Randomization Test (SCRT) assuming a randomly determined intervention point and the traditional permutation test assuming full exchangeability. Data were simulated without linear trends for five treatment effect levels (- 2, - 1, 0, 1, 2), five autocorrelation levels (0, .15, .30, .45, .60), and four observation number levels (30, 60, 90, 120). The power was calculated multiple times for all combinations of factor levels each generating 1000 replications. With 30 observations, the PDT showed sufficient power (≥ 80%) to detect medium treatment effects up to autocorrelation ≤ .45. Using 60 observations, the PDT showed sufficient power to detect medium treatment effects regardless of autocorrelation. With ≥ 90 observations, the PDT could also detect small treatment effects up to autocorrelation ≤ .30. With 30 observations, the type I error rate was 5-7%. With 60 observations and more, the type I error rate was ≤ 5% with autocorrelation < .60. The PDT outperformed the SCRT regarding power, particularly with a small number of observations. The PDT outperformed the traditional permutation test regarding type I error rate control, especially when autocorrelation increased. In conclusion, the PDT is a useful and promising nonparametric test to evaluate treatment effects in dependent SCOD AB-phase data without linear trends.

How to support children to develop and express their coping preferences around minor invasive medical procedures: children's and parents' perspectives.

Invasive medical procedures in hospitals are major sources of stress in children, causing pain and fear. Non-pharmacological interventions are indispensable in effective pain and fear management. However, these interventions must be personalized to be effective. This qualitative study aims to gain insight into children's and parents' experiences, needs, and wishes related to supporting children to develop and express their coping preferences for dealing with pain and fear during minor invasive medical procedures in order to decrease pain and fear. A qualitative study using thematic analysis was performed. Data were collected through semi-structured interviews with children and parents who had undergone at least five minor invasive medical procedures in the last year. Nineteen children (8-18 years) and fourteen parents were interviewed individually. The experiences, needs, and wishes expressed in the interviews could be classified into one overarching theme, that of the personal process, and two content-related sub-themes: feeling trust and gaining control. The personal process was divided into two different phases, that of developing and of expressing coping preferences. Children and parents both reported it as a continuous process, different for every child, with their own unique needs. Children and parents expected personalized attention and tailored support from professionals.     Conclusion: Professionals must combine clinical skills with child-tailored care. In the process of searching for and communicating about coping preferences, children's unique needs and personal boundaries will thereby be respected. This gives children and parents increased trust and control during invasive medical procedures. What is Known: • Untreated pain and stress caused by medical procedures can have severe and important short- and long-term consequences for children. Personalized non-pharmacological interventions are an essential element of procedural pain management. What is New: • A personalized coping strategy is important for children when undergoing medical procedures. Each individual child has a personal way of expressing their own coping strategy. Children and their parents need information and the space to develop and express their individual coping preferences. • Children and parents expect to receive child-tailored care from professionals including respect for their own, unique needs and boundaries. Professionals should build trustful relationships and provide appropriately tailored autonomy around medical procedures.

Towards a more comprehensive understanding of PTSD and parenting.

BACKGROUND: The impact of post-traumatic stress disorder (PTSD) on parenting and the parent-child relationship has been well-documented in the scientific literature. However, some conceptual and methodological challenges within this research field remain. PROCEDURE: We reflect on a number of challenges that we identified while examining the literature in preparation of an individual participant data meta-analysis on the relationships between PTSD and parenting. FINDINGS: We address 1) the presence of 'trauma-islands'; 2) the need for transdiagnostic theoretical frameworks for mechanisms between PTSD and parenting; 3) the lack of developmental perspectives; 4) the overuse of self-reported retrospective measures; 5) the need to study more diverse samples and cultural contexts; and 6) the lack of research on resilience and post-traumatic growth in parenting. Based on these reflections, we offer suggestions on strategies for responding to these challenges through: 1) welcoming open science; 2) working towards shared theoretical frameworks; 3) doing more longitudinal research 4) expanding the methodological palette; 5) centering lived experience; and 6) taking systemic inequality into account. CONCLUSION: With this commentary, we aim to open a discussion on next steps towards a more comprehensive understanding of the association between PTSD and parenting, and inspire collaborative research.

Internet-delivered cognitive behavioural therapy for chronic fatigue among adolescents with a chronic medical condition: a single case study.

BACKGROUND: Severe fatigue is a prominent symptom among adolescents with a chronic medical condition, with major impact on their well-being and daily functioning. Internet-based cognitive behavioural therapy (I-CBT) is a promising treatment for severe fatigue among adolescents with a chronic medical condition, but its effectiveness has not been studied. AIMS: We developed an I-CBT intervention for disabling fatigue in a chronic medical condition and tested its feasibility and effectiveness in an adolescent with an immune dysregulation disorder (IDD), namely juvenile idiopathic arthritis (JIA). METHOD: The application of I-CBT is illustrated through a clinical case study of a 15-year-old girl with JIA and chronic severe fatigue. An A-B single case experimental design was used with randomization of the waiting period prior to start of the intervention. Outcomes were weekly measures of fatigue severity, physical functioning, school absence and pain severity. RESULTS: Fatigue severity significantly decreased following I-CBT. Improvements were observed towards increased school attendance and improved physical functioning following the intervention, but these effects were too small to become significant. CONCLUSIONS: The study provides preliminary support for the feasibility and effectiveness of the application of I-CBT for severe fatigue in adolescents with a long-term medical condition.

The PROactive cohort study: rationale, design, and study procedures.

Children with a chronic condition face more obstacles than their healthy peers, which may impact their physical, social-emotional, and cognitive development. The PROactive cohort study identifies children with a chronic disease at high risk of debilitating fatigue, decreased daily life participation and psychosocial problems, as well as children who are resilient and thrive despite the challenges of growing up with a chronic condition. Both groups will teach us how we can best support children, adolescents and parents to adapt to and manage a disease, as well as tailor interventions to their specific needs.This cohort follows a continuous longitudinal design. It is based at the Wilhelmina Children's Hospital (WKZ) in the Netherlands and has been running since December 2016. Children with a chronic condition (e.g. cystic fibrosis, juvenile idiopathic arthritis, chronic kidney disease, or congenital heart disease) as well children with medically unexplained fatigue or pain in a broad age range (2-18 years) are included, as well as their parent(s). Data are collected from parents (of children between 2 and 18 years) and children (8-18 years), as well as data from their electronic health record (EHR). Primary outcome measures are fatigue, daily life participation, and psychosocial well-being, all assessed via patient- and proxy-reported outcome measures. Generic biological/lifestyle, psychological, and social factors were assessed using clinical assessment tools and questionnaires. In the PROactive cohort study the research assessment is an integrated part of clinical care. Children are included when they visit the outpatient clinic and are followed up annually.

Psychosocial functioning in adolescents growing up with chronic disease: The Dutch HBSC study.

Many adolescents worldwide (indirectly) grow up with a chronic disease, which may impact their functioning and wellbeing. The objective of this study is to assess whether adolescents with a (family member with a) chronic disease differ from their healthy counterparts in terms of psychosocial functioning. Data from the Dutch 2013 HBSC-survey were used, including 7168 adolescents (Meanage = 13.7, SD = 1.57, 50.5% female). Participants indicated whether they or one of their family members had a long-term (> 3 months) disease or disability (mental/physical) and were categorized into four groups based on disease presence (none, other, self, both). Psychosocial functioning was assessed in terms of life satisfaction, self-rated health, psychosomatic health, mental health problems, support, substance use, physical exercise, screen time, and school liking. Chronically diseased adolescents (n = 162) reported lower life satisfaction, self-rated and psychosomatic health, more mental health problems, lower peer support, more substance use, and less physical exercise compared to healthy peers. Chronically diseased adolescents who also had a family member with a chronic disease (n = 74) showed comparable outcomes on these life domains, although they did not differ from their healthy peers regarding peer support, substance use, and physical activity. Healthy adolescents with a chronically diseased family member (n = 737) reported significantly lower life satisfaction, self-rated and psychosomatic health, more mental health problems, and less family support compared to healthy peers who grew up in healthy families; however, they reported more positive outcomes than adolescents who had a chronic disease themselves.Conclusion: Having a (family member with a) chronic disease is associated with impaired psychosocial functioning on various life domains. Our findings aid in understanding the psychosocial associates of chronic disease and imply that caregivers should be observant of psychosocial problems among vulnerable adolescents to provide appropriate guidance. What is Known: • Adolescents who grow up with a (family member with a) chronic disease encounter numerous challenges that may be related to poorer developmental outcomes on the long term. What is New: • This study adds a comprehensive overview of the psychosocial functioning of adolescents with a (family member with a) chronic disease, as compared to healthy counterparts that grow up in a healthy family.

Exploring key elements of approaches that support childrens' preferences during painful and stressful medical procedures: A scoping review.

PROBLEM: Children undergoing medical procedures can experience pain and distress. While numerous interventions exist to mitigate pain and distress, the ability to individualize the intervention to suit the needs and preferences of individual children is emerging as an important aspect of providing family-centered care and shared decision making. To date, the approaches for supporting children to express their preferences have not been systematically identified and described. A scoping review was conducted to identify such approaches and to describe the elements that are included in them. ELIGIBILITY CRITERIA: Studies that (a) described approaches with the aim to support children to express their coping preferences during medical procedures; (b) included the option for children to choose coping interventions; (c) included a child (1--18 years). SAMPLE: Searches were conducted in December 2019 and November 2020 in the following databases: Cinahl, Embase, PubMed and Psycinfo. RESULTS: Thirteen studies were identified that included six distinct approaches. Four important key elements were identified: 1) Aid to express preferences or choice, 2) Information Provision, 3) Assessment of feelings/emotions, 4) Feedback/Reflection and Reward. CONCLUSIONS: Identified approaches incorporate components of shared decision-making to support children in expressing their preferences during medical procedures and treatments. IMPLICATIONS: Children undergoing medical procedures can be supported in expressing their coping needs and preferences by using components of shared decision-making.

Severe Fatigue Is Common Among Pediatric Patients with Primary Immunodeficiency and Is Not Related to Disease Activity.

PURPOSE: Fatigue is a distressing symptom commonly reported among pediatric patients with primary immunodeficiency (PID). However, the relationship between fatigue and disease activity is currently unknown. METHODS: In this cross-sectional study, we examined the prevalence of severe fatigue, the effect of fatigue on health-related quality of life (HRQoL), and the effects of disease activity and comorbidity on fatigue severity among pediatric patients 2-18 years of age with PID. Fatigue and HRQoL were assessed using the pediatric quality of life inventory multidimensional fatigue scale (PedsQL MFS) and generic core scales (PedsQL GCS), respectively. Linear regression analyses and an analysis of covariance were used to compare the fatigue scores with the scores obtained from a healthy control group. Data were adjusted for age and sex. RESULTS: Of the 91 eligible patients, 79 were assessed (87% participation rate), with a mean age of 10.4 ± 4.4 years. Pediatric patients with PID reported significantly higher fatigue levels compared to healthy peers, with an 18.9% prevalence of severe fatigue. Moreover, higher fatigue levels were inversely associated with HRQoL in all domains and directly associated with school absences. We found that severe fatigue was comparable between common variable immunodeficiency (CVID), combined immunodeficiency (CID), and selective immunoglobulin A deficiency (SIgAD) patients, but was not reported in the X-linked agammaglobulinemia (XLA) patients studied. Finally, fatigue severity was not significantly associated with disease activity or comorbidity. CONCLUSIONS: Nearly 20% of pediatric patients with PID reported experiencing severe fatigue, and fatigue was reported among a wide range of PID subcategories. In addition, severe fatigue negatively affected the patient's quality of life and daily functioning, but was not associated with disease activity or comorbidity. Thus, targeting severe fatigue might be a promising strategy for improving the overall well-being and quality of life of pediatric patients with PID.

Effectiveness of Internet-Based Cognitive Behavior Therapy (Fatigue in Teenagers on the Internet) for Adolescents With Chronic Fatigue Syndrome in Routine Clinical Care: Observational Study.

BACKGROUND: Internet-based cognitive behavior therapy (I-CBT) for adolescents with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has been shown to be effective in a randomized controlled trial (RCT; Fatigue in Teenagers on the Internet [FITNET]). FITNET can cause a significant reduction in fatigue and disability. OBJECTIVE: We aimed to investigate whether FITNET treatment implemented in routine clinical care (IMP-FITNET) was as effective, using the outcomes of the FITNET RCT as the benchmark. METHODS: Outcomes of CFS/ME adolescents who started IMP-FITNET between October 2012 and March 2018 as part of routine clinical care were compared to the outcomes in the FITNET RCT. The primary outcome was fatigue severity assessed posttreatment. The secondary outcomes were self-reported physical functioning, school attendance, and recovery rates. Clinically relevant deterioration was assessed posttreatment, and for this outcome, a face-to-face CBT trial was used as the benchmark. The attitude of therapists toward the usability of IMP-FITNET was assessed through semistructured interviews. The number of face-to-face consultations during IMP-FITNET was registered. RESULTS: Of the 384 referred adolescents with CFS/ME, 244 (63.5%) started IMP-FITNET, 84 (21.9%) started face-to-face CBT, and 56 (14.6%) were not eligible for CBT. Posttreatment scores for fatigue severity (mean 26.0, SD 13.8), physical functioning (mean 88.2, SD 15.0), and full school attendance (mean 84.3, SD 26.5) fell within the 95% CIs of the FITNET RCT. Deterioration of fatigue and physical functioning after IMP-FITNET was observed at rates of 1.2% (n=3) and 4.1% (n=10), respectively, which is comparable to a waiting list condition (fatigue: 1.2% vs 5.7%, χ21=3.5, P=.06; physical functioning: 4.1% vs 11.4%, χ21=3.3, P=.07). Moreover, 41 (16.8%) IMP-FITNET patients made use of face-to-face consultations. CONCLUSIONS: IMP-FITNET is an effective and safe treatment for adolescents with CFS/ME in routine clinical care.

Correction to: The value of postmortem computed tomography in paediatric natural cause of death: a Dutch observational study.

When first published, this article inadvertently listed the Dutch NODO group individually within the author list without specifying the names of the collaborators. The collaborators have been listed within the Acknowledgements section only. The corrected author list is presented in this Correction.

Non-pharmacological options for managing chronic musculoskeletal pain in children with pediatric rheumatic disease: a systematic review.

In patients with a pediatric rheumatic disease (PRD), chronic musculoskeletal pain (CMP) can have a major impact on functioning and social participation. Because CMP is not always alleviated solely by the use of pharmacological approaches, the aim was to systematically review the available evidence regarding non-pharmacological treatment options for reducing CMP in patients with PRD. PubMed, Embase, PsycINFO, and the Cochrane Library were systematically searched for (non-)randomized trials investigating non-pharmacological treatments for CMP in PRD published through October 25, 2017. The GRADE approach was used to assess the quality of evidence. The search yielded 11 studies involving 420 children 5-18 years of age. All studies were relatively small and short-term, and the quality of evidence ranged from very low to moderate. The main modalities within non-pharmacology therapy were psychological interventions and exercise-based interventions. Some studies show modest positive short-term results for psychological and exercise-based interventions. Psychological and exercise-based interventions can have a modest positive result in PRD, with no evidence of side effects. Non-pharmacological therapies are a promising option to alleviate pain in PRD and improve functioning, which can be used as an alternative for or in addition to pharmacological therapies. Because chronic pain can differ etiologically from acute pain in PRD, non-pharmacological therapies might have different effects in patients with or without active inflammation. To best determine the effect of non-pharmacological therapies, future studies should take this difference into account.

The value of postmortem computed tomography in paediatric natural cause of death: a Dutch observational study.

BACKGROUND: Postmortem CT is a relatively new field of interest within paediatric radiology. This paper focusses on its value in cases of unexpected natural death. OBJECTIVE: We report on an observational Dutch study regarding the value of postmortem CT in children with an assumed natural unexpected death because postmortem CT is part of the Dutch NODO (additional investigations of cause of death) procedure. MATERIALS AND METHODS: We included consecutive children who fulfilled criteria for the NODO procedure and were therefore referred to one of the centres for the procedure. Postmortem CT was performed in all cases and skeletal survey was performed in all children ages <5 years. The cause of death was defined in a consensus meeting. RESULTS: We included a total of 54 children (30 boys, median age 1.1 years, and 24 girls, median age 0.8 years). A definitive cause of death was established in 38 cases. In 7 cases the cause of death could be identified on postmortem CT. In 7 cases imaging findings were clinically relevant but did not lead to a cause of death. In the remaining 40 cases postmortem CT did not add to the diagnostic workup. CONCLUSION: Our study shows that in a group of children who unexpectedly died of an assumed natural cause of death and in whom a cause of death was found at autopsy, postmortem CT detected the cause of death in a minority of cases (12.9%). In the majority of cases (74.1%) postmortem CT did not add value in diagnosing the cause of death.

The impact of chronic fatigue syndrome on cognitive functioning in adolescents.

Chronic fatigue syndrome (CFS) is characterized by persistent fatigue and severe disability. Most adolescent patients report attention and concentration problems, with subsequent poor performance at school. This study investigated the impact of CFS on intellectual capacity by (1) assessing discrepancies between current intelligence quotient (IQ) and school level and (2) exploring differences in current IQ and pre-CFS school performance, compared with healthy individuals. Current data was cross-sectionally gathered and compared with retrospective pre-CFS school performance data. Fifty-nine CFS adolescents and 40 controls were evaluated on performance on age-appropriate intelligence tests and school level. Current IQ scores of CFS adolescents were lower than expected on the basis of their school level. Furthermore, there was a difference in intelligence performance across time when current IQ scores were compared with pre-CFS cognitive achievement. Healthy controls did not show any discrepancies. CONCLUSION: According to their pre-CFS intelligence assessments, CFS patients started with appropriate secondary school levels at the age of 12. Our data suggest that CFS may be accompanied by a decline in general cognitive functioning. Given the critical age for intellectual development, we recommend a timely diagnosis followed by appropriate treatment of CFS in adolescents. WHAT IS KNOWN: Adolescent chronic fatigue syndrome (CFS) is a debilitating condition with major impact on social and intellectual development. Most patients report concentration problems, with subsequent poor performance at school. Little is known about the influence of CFS on intellectual performances. WHAT IS NEW: IQ scores of CFS adolescents are lower than the IQ scores of healthy peers with an equivalent school level. There is a decrease in intelligence performance across time when current IQ scores are compared with pre-CFS cognitive achievement. Healthy controls do not show any discrepancies between their current IQ, school level and previous cognitive functioning. This suggest that adolescent CFS may be accompanied by a decline in general cognitive functioning.

A screening protocol for child abuse at out-of-hours primary care locations: a descriptive study.

BACKGROUND: Child abuse is often unrecognized at out-of-hours primary care (OOH-PC) services. The aim of our study was to evaluate the clinical outcome of the screening instrument SPUTOVAMO-R2 for child abuse (checklist), followed by a structured approach (reporting code), at OOH-PC services. The reporting code with five steps should ensure consistent action in case of a suspicion. METHODS: All children attending one of the five participating OOH-PC services in the region of Utrecht, the Netherlands, in a year time, were included. The checklist is an obligatory field in the electronic patient file and was filled in for all children. In case of a positive checklist, the steps in the reporting code were followed. Additionally, the case was evaluated in a multidisciplinary team to determine the probability of child abuse. RESULTS: The checklist was filled in for 50671 children; 108 (0.2 %) were positive. The multidisciplinary team diagnosed child abuse in 24 (22 %) of the 108 positive checklists, and no child abuse in 36 (33 %). Emotional neglect was the most frequent type of abuse diagnosed. For all abused children, care was implemented according to the protocol. The most frequent care given was a referral to the hospital (N = 7) or contact with child's own general practitioner (N = 6). CONCLUSION: A checklist followed by a reporting code guarantees consistent actions and care for children with a suspicion of child abuse. The percentage of positive checklists is lower than expected. Validity of the checklist should be assessed in a diagnostic study.

The Self beyond Somatic Symptoms: A Narrative Approach to Self-Experience in Adolescent Chronic Fatigue Syndrome.

BACKGROUND: The self and self-experience are often assumed to play an important role in adolescent patients presenting with severe somatic symptoms and bodily distress. Nonetheless, most empirical work on this subject is confined to studies of personality and patients' experience of negative emotionality. This study aims to move beyond mere descriptions of symptoms, traits and distress, and consequently adopts a narrative approach to self-experience in adolescent chronic fatigue syndrome (CFS). SAMPLING AND METHODS: The self-confrontation method (SCM) is a well-validated instrument to systematically analyze narrative self-experience. The SCM was used to study 42 adolescents with CFS, compared to 36 adolescents with juvenile idiopathic arthritis (JIA) and 25 matched healthy controls. The Child Health Questionnaire (CHQ-CF87) was used to assess mental health, self-esteem, and physical and psychosocial functioning. RESULTS: Both patient groups reported significantly less positive self-experience of autonomy and success compared to healthy controls. Furthermore, patients with CFS described significantly more negative self-experience of powerlessness, isolation and unfulfilled longing. In the CHQ-CF87, both patient groups scored significantly lower on physical functioning than controls. Adolescents with CFS also scored significantly lower on mental health and self-esteem. CONCLUSIONS: Adolescent CFS entails a serious threat to the self, which might be inherent to the condition. Not only are patients more impaired in mental health, self-esteem, and physical and psychosocial functioning than patients with JIA, they also suffer from a distinct combination of high negative and low positive self-experience. These findings stress the need for strategies that empower patients towards a 'management of the self'.

Evaluation of suspected child abuse at the ED; implementation of American Academy of Pediatrics guidelines in the Netherlands.

Emergency departments (EDs) are important to detect child physical abuse. A structured approach will contribute to an adequate detection of abused children at the ED. The American Academy of Pediatrics (AAP) provided guidance in the clinical approach to the evaluation of suspected physical abuse in children. In the Netherlands, these American Academy of Pediatrics guidelines have been adopted for the clinical process of child abuse detection. Here, we describe the outcome of the clinical process in the year 2010 with 65 cases of suspected child abuse out of 3660 children presenting at an ED, and we discuss the strengths and pitfalls of this current clinical approach.

Individual outcomes after tailored versus generic self-management strategies for persistent fatigue in youth with a fatigue syndrome or rheumatic condition: A multiple single-case study.

OBJECTIVE: To examine individual outcomes after tailored lifestyle (PROfeel) or generic dietary advice as self-management intervention for persistent fatigue in adolescents and young adults with a chronic condition, to compare participants who did and did not benefit and to explore changes to factors in the biopsychosocial model of fatigue after PROfeel. METHOD: A multiple single-case AB-phase design was embedded in a randomized crossover trial (N = 45). Intensive longitudinal data (ILD) on outcomes 'fatigue severity', 'self-efficacy' and 'quality of life' (QoL) were collected through weekly smartphone measurement for 20 weeks. ILD on biopsychosocial factors were collected through experience sampling methodology for 28 days pre-post first intervention. Baseline characteristics were compared with t-tests and chi-square tests. Permutation distancing tests were used to assess change over time in all ILD. RESULTS: Regarding weekly measurements, nineteen participants (42.22%) showed small to large positive outcomes (drange = .05 to 2.59), mostly after PROfeel. Eleven participants (24.44%) showed small to moderate negative outcomes (drange = -.02 to -2.46), mostly after dietary advice. Fatigue severity improved most, followed by self-efficacy. Participants who benefitted showed higher QoL levels and lower fatigue and pain levels compared with others at baseline (all p < .02). When positive outcomes were observed after PROfeel, typically ≥1 biopsychosocial factor had been targeted successfully. CONCLUSION: Self-management advice has more potential when tailored to individual characteristics, including the biopsychosocial model of fatigue. PROfeel appears particularly useful as fatigue intervention for individuals with relatively less severe symptoms.

A dyadic perspective on parent-child dyadic coping in children with a chronic condition.

OBJECTIVE: In this study, we examined the extent to which parents and their children with a chronic condition communicate their stress to one another and whether stress communication is associated with different forms of dyadic coping. METHODS: In a sample of 239 parent-child dyads, self-reported stress communication and different forms of perceived dyadic coping (i.e., emotion-oriented, problem-oriented, and negative dyadic coping) were assessed using a cross-sectional design. RESULTS: We first found that children's stress communication was positively associated with more positive (r = 0.28, p < .001) and less negative dyadic coping responses by children (r = -0.22, p < .001). Children's stress communication was also associated with more positive (r = 0.52, r = 0.45, p's < 0.001), and less negative dyadic coping responses by parents (r = -0.19, p < .001). Using dyadic data of children with a chronic condition and their parents, we found that more stress communication of children was associated with healthier coping responses of both children (perceived emotion-oriented dyadic coping: ß = 0.23, p < .001) and parents (perceived emotion-oriented dyadic coping: ß = 0.33, p < .001; perceived problem-oriented dyadic coping: ß = 0.22, p < .001). CONCLUSION: This underscores the importance of communication and adaptive coping strategies of parents and children in the context of a child's chronic condition. These findings may help us find ways to support children and their parents to optimally communicate about and deal with their stress.

Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial.

BACKGROUND: Chronic fatigue syndrome is characterised by persistent fatigue and severe disability. Cognitive behavioural therapy seems to be a promising treatment, but its availability is restricted. We developed Fatigue In Teenagers on the interNET (FITNET), the first dedicated internet-based therapeutic program for adolescents with this disorder, and compared its effectiveness with that of usual care. METHODS: Adolescents aged 12-18 years with chronic fatigue syndrome were assigned to FITNET or usual care in a 1:1 ratio at one tertiary treatment centre in the Netherlands by use of a computer-generated blocked randomisation allocation schedule. The study was open label. Primary outcomes were school attendance, fatigue severity, and physical functioning, and were assessed at 6 months with computerised questionnaires. Analysis was by intention to treat. Thereafter, all patients were offered FITNET if needed. This trial is registered, number ISRCTN59878666. FINDINGS: 68 of 135 adolescents were assigned to FITNET and 67 to usual care, and 67 and 64, respectively, were analysed. FITNET was significantly more effective than was usual care for all dichotomised primary outcomes at 6 months-full school attendance (50 [75%] vs 10 [16%], relative risk 4·8, 95% CI 2·7-8·9; p<0·0001), absence of severe fatigue (57 [85%] vs 17 [27%], 3·2, 2·1-4·9; p<0·0001), and normal physical functioning (52 [78%] vs 13 [20%], 3·8, 2·3-6·3; p<0·0001). No serious adverse events were reported. INTERPRETATION: FITNET offers a readily accessible and highly effective treatment for adolescents with chronic fatigue syndrome. The results of this study justify implementation on a broader scale. FUNDING: Netherlands Organisation for Health Research and Development.

Clinical Practice: Chronic fatigue syndrome.

The diagnosis chronic fatigue syndrome (CFS) was conceptualized in the mid-1980s. It is a clinically defined condition characterized by severe and disabling new onset fatigue with at least four additional symptoms: impaired memory or concentration, sore throat, tender cervical or axillary lymph nodes, muscle pain, multi-joint pain, new headaches, unrefreshing sleep or post-exertion malaise. Chronic fatigue syndrome in adolescents is a rare condition compared to symptomatic fatigue. The estimated prevalence of adolescent CFS ranges between 0.11 and 1.29 % in Dutch, British, and US populations. Diagnosis of the chronic fatigue syndrome is established through exclusion of other medical and psychiatric causes of chronic fatiguing illness. Taking a full clinical history and a full physical examination are therefore vital. In adolescence, CFS is associated with considerable school absence with long-term detrimental effects on academic and social development. One of the most successful potential treatments for adolescents with CFS is cognitive behavioural therapy, which has been shown to be effective after 6 months in two thirds of the adolescents with CFS. This treatment effect sustains at 2-3-year follow-up. In conclusion, the diagnosis CFS should be considered in any adolescent patient with severe disabling long-lasting fatigue. Cognitive behavioural therapy is effective in 60-70 % of the patients. Prompt diagnosis favours the prognosis.