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The first wave of the coronavirus disease 2019 (COVID‐19) pandemic had an enormous impact on health‐care services, including on care provision for children with atopic dermatitis (AD). We investigated the impact of COVID‐19 on the care for children with moderate to severe AD at our tertiary outpatient clinic and examined satisfaction with care. We reviewed outpatient records, comparing total number and types of consultations during the first COVID‐19 wave (March until July 2020) with the corresponding months of 2019 and 2018. In addition, we conducted a questionnaire‐based study investigating the impact of COVID‐19 on clinical and psychological symptoms, and satisfaction with care. A total number of 913 consultations (466 individual children) were conducted during the first COVID‐19 wave in 2020, while 698 (391 individual children) and 591 consultations (356 individual children) were conducted in 2019 and 2018. The proportion of remote consultations was higher (56.2%) compared to 14.0% in 2019 and 12.7% in 2018. Worsening of AD was reported by 9.7% of caretakers. Overall satisfaction with provided care was high (8.6; interquartile range [IQR] = 7.3–10.0). Caretakers receiving face‐to‐face consultation were significantly (p = 0.026) more satisfied (9.0; IQR = 8.0–10.0) than caretakers receiving remote consultation (7.9; IQR = 7.0–9.5). The COVID‐19 pandemic had an unprecedented impact on care provision for children with AD, particularly on the number of remote consultations. Overall satisfaction with care was high. The impact of COVID‐19 on disease severity remained limited. Remote consultations seem to be a useful tool that can be put into practice during the COVID‐19 pandemic.

Purpose: The desirability of evaluating transition programs is widely acknowledged. This study aimed to explore the added value of transitional care investments for young adults with type 1 diabetes mellitus. Design and methods: Based on qualitative data, two groups of diabetes teams were created through cluster analysis: paying more (HI-ATT) versus less attention (LO-ATT) to transitional care. Retrospective controlled evaluation included chart reviews on healthcare use and clinical outcomes; and a survey on young adults' experiences, satisfaction with care, and self-management skills. Results: Data from 320 patients in fifteen diabetes teams were collected; 123 young adults (38.4%) completed a questionnaire. Self-reported outcomes showed that young adults treated by a HI-ATT team felt better prepared for transfer (p < .05). Self-management outcomes did not differ between groups. HI-ATT teams had more scheduled consultations in the year after transfer (p < .05); only 10.6% of all measurements had reached targeted HbA1c scores. Conclusions: Current transitional care investments in Dutch diabetes care did not lead to notable improvements in experiences and outcomes, except for preparation for transfer. The period after transfer, however, is just as important. Attention is required for parent involvement. Practice implications: Transitional care investments should extend beyond the transfer. By educating young adults about the importance of regular clinic attendance and introducing additional person-centered consultations in adult care, nurses may help ensure continuity of care. Nurses could also introduce support programs for parents to prepare for the transition and their change in role, taking into account their continuing partnership.

Background:Atopic dermatitis (AD) is a chronic inflammatory skin disease that affects 10% to 20% of children and between 2% and 15% of the adults in Western Europe. Since 2000 therapeutic clothing or functional textiles based on silver or chitosan as antibacterial agents were introduced for AD. These agents aim to reduce skin colonization with Staphylococcus (S.) aureus. Increased colonization with S. aureus is correlated with increased AD severity. The antimicrobial effects of silver and chitosan have been demonstrated before. At this point there is insufficient evidence for the effectiveness of antibacterial therapeutic clothing in patients with AD.Methods: This is a pragmatic randomized controlled double-blind multi-center trial comparing the effectiveness of antibacterial therapeutic clothing based on silver or chitosan as compared with non-antibacterial therapeutic clothing in patients with moderate to severe AD. A total of 165 participants, aged 0 to 80, diagnosed with moderate to severe AD are included. The study is performed in the Erasmus MC University Medical Center, University Medical Center Groningen, University Medical Center Utrecht, Amsterdam University Medical Centers and St. Antonius Hospital Nieuwegein. Patients will be randomized 1:1:1 into one of the three intervention groups: Group A will receive therapeutic clothing without antimicrobial agents, group B will receive microbial growth reducing therapeutic clothing based on chitosan, and group C will receive antimicrobial clothing based on silver. All therapeutic clothing is to be worn at night during the 12-month intervention period. Usual care is continued. The primary objective is to assess the effectiveness of antibacterial clothing (silver and chitosan group) as compared to non-antibacterial clothing assessed with the Eczema Area and Severity Index at 12 months compared to baseline. Secondary outcomes include between-group differences in physician and patient-reported outcome measures, topical therapy use, S. aureus skin colonization, and safety. Data will be collected at baseline, after 1 month, 3 months, 6 months an at 12 months. A cost-effectiveness analysis will be performed.Discussion:This trial will provide data on the effectiveness, cost-effectiveness, and safety of antibacterial therapeutic clothing for patients with AD. Trial registration Clinicaltrials.gov, NCT04297215. Registered on 5 March 2020

Background Young adulthood is a challenging period for people with diabetes mellitus type 1 (T1DM) as they are facing multiple life transitions while managing a demanding disease. This poses a risk for impaired health-related quality of life (HRQOL). We assessed HRQOL in a cohort of young adults with T1DM in the Netherlands, and compared outcomes with those of Dutch norm groups of healthy young adults and young adults with a chronic disease. Methods We analyzed data collected in a larger evaluation study on transitional care for young adults with T1DM in a nationwide sample in the Netherlands, including twelve participating hospitals. These data had been obtained from online questionnaires completed by young adults with T1DM after they had transferred to adult care. HRQOL was self-reported with the Pediatric Quality of Life Inventory for young adults (PedsQL-YA). Results One hundred and sixty-five young adults with T1DM participated (44.2% response); and they scored significantly worse than did healthy peers on all domains of HRQOL, except social functioning. Particularly, functioning at school or work was worse than that of the norm group. The study group’s HRQOL-scores were comparable to norm scores of young adults with chronic diseases, although the physical and social functioning of young people with T1DM was better. One quarter (26.1%) of all young adults with T1DM reported fatigue. Conclusions During transition to adulthood, young adults with T1DM struggle to maintain a balance between the demands of managing a disease and their life. Many of them encounter problems at work or school, and suffer from fatigue. These findings underscore the need to regularly assess HRQOL, and to discuss work- and education-related issues in clinical practice.

Objective: To assess health symptoms, health-related quality of life, participation, and health care satisfaction in Q-fever patients up to 10 years after infection. Methods: Cross-sectional questionnaire survey in the Netherlands. Data on health symptoms, fatigue (CIS), health-related quality of life (EQ-5D), social/work participation, health care providers and health care satisfaction were collected in patients with chronic Q-fever (CQ), Q-fever syndrome (QFS), and patients who experience QFS-like disease without a post-infection diagnosis (QLD). Results: A vast majority of the 478 Q-fever patients (response rate 54.3%) face several health problems 10 years after infection. Fatigue was the most prevalent symptom in all groups (91.2%). The median EQ-5D index value differed significantly between the three diagnostic groups (CQ: 0.67; QFS: 0.55; QA:0.70; p, Highlights • This study highlights the enormous long-term health impact of a Q-fever outbreak.

Objective Studies on anxiety within oncology show a high prevalence of anxiety both during and after the course of the disease. However, little is known about factors that influence the level of anxiety in the diagnostic phase. This study examines the presence of anxiety during diagnosis and treatment planning and explores how a monitoring (ie, information seeking) coping style and the suggested treatment plan (ie, with or without chemotherapy) interact with anxiety. Methods Anxiety scores (6‐item State‐Trait Anxiety Inventory) were collected from 81 colorectal cancer patients before and after their visit to the outpatient Gastrointestinal Oncological Center Amsterdam. A cut‐off score (>44) was used to indicate highly anxious patients. Results More than half (59%) of the patients were classified as highly anxious before consultation. Although anxiety scores significantly decreased after consultation (t = 3.149, P = .002), 37% of the patients remained highly anxious. Reductions in anxiety were specifically observed for patients with a higher monitoring coping style and patients for whom a treatment plan without chemotherapy was proposed. Interestingly, high monitors for whom treatment without chemotherapy was proposed showed a major decrease in anxiety, whereas low monitors for whom treatment starting with chemotherapy was proposed showed a great increase in anxiety. Conclusions The diagnostic phase is associated with high levels of anxiety. Distinct patterns of anxiety were identified, depending on patients' coping style and the suggested treatment plan. Remarkably, patients with a lower monitoring coping style became particularly anxious when they were advised to start treatment with chemotherapy.

Having to cope with life-threatening injury or illness can be very stressful for children and their parents. In medical settings children—and parents—can be traumatized by various events both befor...

The objective of this study was to evaluate health-related quality of life (HRQoL) and behavioral functioning in pediatric patients with hereditary spherocytosis (HS). A cross-sectional study was conducted in 132 Dutch children and adolescents with HS and aged 8–18 years of whom 48 underwent splenectomy prior to the study. HRQoL was assessed using the KIDSCREEN-27, and behavioral functioning was evaluated using the strength and difficulties questionnaire (SDQ). Scores of pediatric patients with HS were compared to a Dutch norm population. Additionally, the effects of three factors were assessed: fatigue, self-image, and parents’ perceived vulnerability (measured with the checklist individual strength, the self-perception profile for children and adolescents, and the child vulnerability scale). Both unsplenectomised and splenectomised pediatric patients reported lower HRQoL on the domain physical well-being (KIDSCREEN-27) compared to Dutch peers. For behavioral functioning, parents of both groups reported more emotional problems (SDQ) compared to the norm population. Pediatric patients with lower scores on physical well-being experienced more fatigue. The patients’ perceived social acceptance and parents’ perceived vulnerability appeared as determinants of emotional problems. Conclusion: Pediatric patients in the current study generally report few complaints, and the results suggest that these patients overall have a strong ability to cope with HS. Despite these few complaints, fatigue and parents’ perceived vulnerability seem to be important determinants for lower HRQoL and more emotional problems. Therefore, screening on these factors could serve as an addition to the treatment of HS, to help pediatric patients who are at risk for lower HRQoL or more emotional problems.

Objective: To evaluate self-reported health-related quality of life, anxiety, depression, and cognitive function in pediatric septic shock survivors. Design: A retrospective cohort study. Setting: A 14-bed tertiary pediatric intensive care unit. Patients: Children aged >= 8 yrs at the time of the follow-up who were admitted between 1995 and 2004 for septic shock. Inotropic and or vasoconstrictive agents were administered to these patients for >= 24 hrs. Intervention: Health-related quality of life was assessed with the KIDSCREEN-52, anxiety with the State Trait Anxiety Inventory for Children, depression with the Children's Depression Inventory, and cognitive function with the cognitive scale of the TNO-AZL Children's Quality of Life Questionnaire Child Form. Measurements and Main Results: Fifty of 82 eligible pediatric septic shock survivors were evaluated. The median age of the children at pediatric intensive care unit admission was 4.2 yrs (range, 0.0-17.0 yrs); the median age at follow-up was 10.7 yrs (range, 8.0-20.4 yrs). Health-related quality of life and anxiety scores were comparable to the age-related Dutch norm population. Depression scores were significantly better than the norm population, whereas cognitive function was significantly lower than the norm population. We found that 44% of the children had cognitive scores

Aim To study the prevalence of posttraumatic stress disorder (PTSD), anxiety and depression in parents three months after pediatric intensive care treatment of their child and examine if peritraumatic dissocation and coping styles are related to these mental health problems. Methods This is a prospective cohort study and included parents of children unexpectedly admitted to the Pediatric Intensive Care Unit (PICU) from January 2006 to March 2007. At three months follow-up parents completed PTSD (n = 115), anxiety and depression (n = 128) questionnaires. Immediately after discharge, parents completed peritraumatic dissocation and coping questionnaires. Linear regression models with generalized estimating equations examined risk factors for mental health problems. Results Over 10% of the parents were likely to meet criteria for PTSD and almost one quarter for subclinical PTSD. Respectively 15% to 23% of the parents reported clinically significant levels of depression and anxiety. Peritraumatic dissocation was most strongly associated with PTSD, anxiety as well as depression. Avoidance coping was primarily associated with PTSD. Conclusion A significant number of parents have mental health problems three months after unexpected PICU treatment of their child. Improving detection and raise awareness of mental health problems is important to minimize the negative effect of these problems on parents' well-being.

Background Improved survival in children with critical illnesses has led to new disease patterns. As a consequence evaluation of the well being of survivors of Pediatric Intensive Care Units (PICU) has become important. Outcome assessment should therefore consist of evaluation of morbidity, functional health and Health Related Quality of Life (HRQoL). Awareness of HRQoL consequences and physical sequelae could lead to changes in support during the acute phase and thereafter. The aim of this study was to evaluate HRQoL in PICU survivors. Methods Prospective follow-up study three and nine months after discharge from a 14-bed tertiary PICU. Eighty-one of 142 eligible, previously healthy children were included from December 2002 through October 2005. HRQoL was assessed with the TNO-AZL Preschool Children Quality of Life Questionnaire (TAPQOL-PF) for children aged 1 to 6 years of age, the TNO-AZL Children's Quality of Life Questionnaire Parent Form (TACQOL-PF) for children aged 6 to 12 years of age, and the TNO-AZL Children's Quality of Life Questionnaire Child Form (TACQOL-CF) for children aged 8 to 15 years of age. The studied patients were compared with age appropriate normative data using non-parametric tests and effect sizes. Results Thirty-one and 27 children, and 55 and 50 parents completed questionnaires respectively three and nine months after discharge. In 1–6 year old children parents reported more lung problems (3 and 9 months), worse liveliness (9 months) and better appetite and problem behaviour (3 months); in 6–12 year old children parents reported worse motor functioning (3 months); and 12–15 year old adolescents reported worse motor functioning (3 months). Large effect sizes indicating clinical significant differences in HRQoL with healthy control subjects were found on more domains. Conclusion In this small group of PICU survivors differences in HRQoL with the normative population exist three and nine months after discharge. Calculated effect sizes were smaller nine months after discharge. These changes suggest that HRQoL improves over time. More research is necessary but we believe that HRQoL assessment should be incorporated in follow-up programs of PICU survivors.

Background The goals were to determine the presence of posttraumatic stress disorder (PTSD) in children after paediatric intensive care treatment, to identify risk factors for PTSD, and to compare this data with data from a major fire disaster in the Netherlands. Methods Children completed the Dutch Children's Responses to Trauma Inventory at three and nine months after discharge from the paediatric intensive care unit (PICU). Comparison data were available from 355 children survivors who completed the same questionnaire 10 months after a major fire disaster. Results Thirty-six children aged eight to 17 years completed questionnaires at three month follow-up, nine month follow-up, or both. More than one third (34.5%) of the children had subclinical PTSD, while 13.8% were likely to meet criteria for PTSD. Maternal PTSD was the strongest predictor for child PTSD. There were no significant differences in (subclinical) PTSD symptoms either over time or compared to symptoms of survivors from the fire disaster. Conclusion This study shows that a considerable number of children have persistent PTSD after PICU treatment. Prevention of PTSD is important to minimize the profound adverse effects that PTSD can have on children's well-being and future development.

Aim: To study the prevalence of posttraumatic stress in parents after an acute admission to a paediatric intensive care unit (PICU) and to determine risk factors for the development of posttraumatic stress. Methods: Parents completed posttraumatic stress questionnaires three months after their child's discharge. This questionnaire measures both symptoms of posttraumatic stress disorder (PTSD) and enables determination of the full psychiatric diagnosis of PTSD. Medical and demographic data concerning their child were gathered from physical evaluations three months after discharge. Of 250 eligible families, 144 (57.6%) participated in this study. The questionnaires were completed by 140 mothers and 107 fathers. Results: More than three-quarters of the parents experienced persistent symptoms of PTSD. In 21 mothers (15.0%) and 10 fathers (9.3%), the full psychiatric diagnosis of PTSD was determined. In six families, both parents had PTSD. Furthermore, a significant positive correlation was found between symptoms of PTSD of the mothers and the fathers. No obvious medical risk factors could be distinguished. Conclusion: The unexpected admission of a child to a PICU is a stressful event associated with parental posttraumatic stress. Treatment should not end after discharge. Follow-up care is warranted and research should be focused on prevention of these symptoms. © 2007 The Author(s).

Objective: This study investigated the prevalence and nature of physical and neurocognitive sequelae in pediatric intensive care unit ( PICU) survivors. Design and setting: Prospective follow-up study 3 months after discharge from a 14-bed tertiary PICU in The Netherlands. Patients and participants: The families of 250 previously healthy children unexpectedly admitted to the PICU were invited to visit the outpatient follow-up clinic for structured medical examination of the child 3 months after discharge; 186 patients were evaluated. Measurements and results: Pediatric Cerebral Performance Category ( PCPC) and Pediatric Overall Performance Category ( POPC) values were determined at PICU discharge, at the outpatient follow-up clinic, and retrospectively before admission to the PICU. We found that 69% of children had physical sequelae. In 30% of cases these were caused by a previously unknown illness and in 39% by acquired morbidity. In 8% of the children the acquired morbidity was related to complications from PICU procedures. Three months after discharge 77% of the children had normal PCPC scores and 31% had normal POPC scores. Conclusions: Our results indicate that PICU survival may be associated with substantial physical sequelae. Structured follow-up research, preferably by multicenter studies, is warranted in PICU survivors