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Introduction: Intensive interdisciplinary pain treatment (IIPT) is the best therapy available for children and adolescents affected by severe chronic pain. Psychosocial aftercare (PAC) offered for 6 months after IIPT can improve treatment outcomes for up to 12 months., Objectives: The current study is the first to explore whether PAC is superior to treatment as usual at a long-term follow-up of 18 to 33 months after discharge-including when facing the coronavirus disease 2019 (COVID-19) pandemic., Methods: A multicenter randomized controlled trial investigated the impact of PAC with follow-up assessments in 2021 during the COVID-19 pandemic (N = 209). Multilevel models and regression analyses explored long-term treatment effects on pain characteristics and psychological outcomes, associations of pandemic-related burden with these outcomes, and whether pandemic-related burden moderates those effects., Results: Patients who received PAC significantly improved treatment outcomes concerning pain characteristics and psychological well-being 18 to 33 months after IIPT discharge. A COVID-19 infection among family members or peers was associated with a lower probability of having chronic pain at long-term follow-up, whereas having missed or rescheduled health care appointments was associated with a higher probability. Positive evaluations of family time during the pandemic were associated with better psychological well-being. Regardless of pandemic-related burdens, PAC had similarly better outcomes than treatment as usual. Only for anxiety, greater burdens mitigated the advantages of PAC., Conclusion: Despite adverse circumstances, PAC retained its superiority long-term. Integrating PAC into routine health care to support families after IIPT should be prioritized to yield enduring treatment effects, acting as a buffer against the impacts of unpredictable adverse events., Competing Interests: The authors have no conflicts of interest to declare. This study was funded by the Innovation Fund of the Federal Joint Committee (grant number: 01NVF17040). The funding source had no role in the design and conduct of the study; the collection, management, analysis, and interpretation of data; the preparation, review, or approval of the manuscript; or the decision to submit the manuscript for publication. The authors report no conflicts of interest. Data and program codes are available upon request.Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of The International Association for the Study of Pain.)

Abstract: Chronic pain is common among children and adolescents; however, the diagnoses in the newly developed 11th revision of the International Classification of Diseases (ICD-11) chronic pain chapter are based on adult criteria, overlooking pediatric neurodevelopmental differences. The chronic pain diagnoses have demonstrated good clinical applicability in adults, but to date, no field study has examined these diagnoses to the most specific diagnostic level in a pediatric sample. The current study aimed to explore pediatric representation within the ICD-11, with focus on chronic primary pain. Healthcare professionals (HCPs) at a specialized pediatric pain center documented the symptoms of and assigned both ICD-10 and ICD-11 diagnoses to N = 402 patients. Using criteria-based computer algorithms, specific ICD-11 pain diagnoses were allocated for each documented pain location, with residual diagnoses (ie, "unspecified") assigned if criteria were not (fully) met. Within the ICD-11, the algorithms assigned specific pain diagnoses to most patients (73.6%). In ICD-10, HCPs could not specify a diagnosis for 5.2% of patients; the ICD-11 algorithm allocated a residual chronic primary pain diagnosis in 51.2%. Residual categories were especially prevalent among younger children, boys, patients with headaches, and those with lower pain severity. Overall, clinical utility of the ICD-11 was high, although less effective for chronic back pain and headache diagnoses. The latter also exhibited the lowest agreement between HCPs and algorithm. The current study underscores the need for evidence-based improvements to the ICD-11 diagnostic criteria in pediatrics. Developing pediatric coding notes could improve the visibility of patients internationally and improve the likelihood of receiving reimbursement for necessary treatments through accurate coding., (Copyright © 2024 International Association for the Study of Pain.)

Objectives: Anxiety and depression are internalizing mental disorders often commencing in childhood and manifesting in adolescence. The Revised Anxiety and Depression Scale (RCADS) is an internationally widely used standardized diagnostic tool, but the German version has only been validated in a pediatric chronic pain sample; normative data are not available. The aim of this study is to test its reliability (internal consistency) and validity (factorial, convergent, known-groups) in a representative German school sample and to provide norm data., Methods: Data were collected from N = 1562 German schoolchildren (M age  = 12.2; SD age  = 2.33; range 8-17 years; 52.4% girls)., Results: Cronbach's α ranged from 0.73 to 0.96 for the total and the six subscales (five anxiety and one depression). Confirmatory factor analysis showed the 6-factor model had acceptable to good model fit with CFI = 0.93, TLI = 0.93, RMSEA = 0.05, SRMR = 0.05, which was better than 1- and 2-factor models. The (sub)scales correlated moderate to high negatively with health-related quality of life (-0.31 ≤ τ ≤ -0.51; p < 0.001) and positively with functional impairment (0.31 ≤ τ ≤ 0.48; p < 0.001). Mean scores of anxiety and depression scales were significantly higher in girls and partly in adolescents., Conclusion: Findings provide support for the good psychometric properties of the German RCADS in a community sample., (© 2023 The Authors. International Journal of Methods in Psychiatric Research published by John Wiley & Sons Ltd.)

Potential contributing factors (PCFs) for irritability of an unknown origin (IUO) in children with neurological conditions are identifiable through structured diagnostics. Uncertainty exists regarding the actual relevance of identified PCFs to IUO. Assessments from parents as well as nursing, psycho-social, and medical professionals were used to determine the contribution of different PCFs in the development and maintenance of IUO. For this, individual PCFs of N = 22 inpatient children with IUO were presented to four raters. Descriptive statistics, Kruskal-Wallis tests, and Krippendorff's alpha were used to determine which PCFs were most relevant to explain IUO and rater agreement. Psycho-social aspects (44.7%), hyperarousal (47.2%), pain (24.6%), and dystonia (18.1%) were identified as the most relevant PCFs for IUO. Descriptively, physicians' relevance rating regarding psycho-social aspects, hyperarousal, and dystonia deviated the most from the overall group rating. All professional raters considered psycho-social aspects to be more relevant than did parents. Parents rated pain as more relevant than the other raters. Kruskal-Wallis tests showed no significant differences between relevance ratings (H = 7.42, p = 0.059) or the four parties' deviations (H = 3.32, p = 0.344). A direct comparison of the six two-party constellations showed that across all factors, agreement was weak to moderate. The highest agreement was between physicians and nurses (α = 0.70), and the lowest was between nurses and psycho-social experts (α = 0.61). Understanding which psycho-social and various biological PCFs are significant for IUO can facilitate more targeted and individualized pediatric palliative care for affected patients.

Background: The prevalence of children with life-limiting conditions (LLCs) is rising. It is characteristic for these children to require 24/7 care. In emergencies, families must decide to call the emergency medical service (EMS) or a palliative care team (PCT)-if available. For EMS teams, an emergency in a child with an LLC is a rare event. Therefore, EMS providers asked for a training unit (TU) to improve their knowledge and skills in pediatric palliative care., Aim of the Study: The questions were as follows: whether a TU is feasible, whether its integration into the EMS training program was accepted, and whether an improvement of knowledge can be achieved., Methods: We designed and implemented a brief TU based on findings of a previous study that included 1,005 EMS providers. The topics covered were: (1) basics in palliative home care, (2) theoretical aspects, and (3) practical aspects. After participating in the TU, the participants were given a questionnaire to re-evaluate their learning gains and self-confidence in dealing with emergencies in pediatric patients with LLC., Results: 782 (77.8%) of 1,005 participants of the previous study responded to the questionnaire. The average age was 34.9 years (±10.7 years SD), and 75.3% were male. The average work experience was 11.4 years (±9.5 years SD), and 15.2% were medical doctors. We found an increase in theoretical knowledge and enhanced self-confidence in dealing with emergencies in patients with LLC (confidence: before training: 3.3 ± 2.0 SD; after training: 5.7 ± 2.1 SD; min.: 1; max.: 10; p  < 0.001). The participants changed their approaches to a fictitious case report from more invasive to less invasive treatment. Most participants wanted to communicate directly with PCTs and demanded a standard operating procedure (SOP) for treating patients with LLC. We discussed a proposal for an SOP with the participants., Conclusion: EMS providers want to be prepared for emergencies in children with LLCs. A brief TU can improve their knowledge and confidence to handle these situations adequately. This TU is the first step to improve collaboration between PCTs and EMS teams., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (© 2023 Hauch, El Mohaui, Sander, Rellensmann, Berthold, Kriwy, Zernikow, Wager and Schneck.)

Children and adolescents with complex chronic conditions, including those with life-threatening or life-limiting conditions, are a heterogeneous population. Many individuals exhibit sleep abnormalities that are measurable by proxy questionnaires. No suitable instrument to assess the wide range of different complex chronic conditions is currently available. The aim of the present study was to develop a screening tool-the Sleep Screening for Children and Adolescents with Complex Chronic Conditions-to effectively obtain sleep behaviour information in this population. Following a mixed-method design, potential items for the Sleep Screening for Children and Adolescents with Complex Chronic Conditions questionnaire were defined through literature research and expert meetings. In a pre-test with N = 60 family and professional caregivers, the items' relevance and comprehensibility as well as the instrument's overall design were assessed. For the main test, N = 315 participants were recruited in three tertiary paediatric hospitals. A principal components analysis detected the questionnaire's scales. Item analysis focused on mean values, range, difficulty and discriminatory power. Convergent validation of the Sleep Screening for Children and Adolescents with Complex Chronic Conditions was assessed via correlations between scale items. Most patients had neurological or neuromuscular diseases. Four scales ("Falling and staying asleep", "Sleep-associated respiration and arousal", "Daytime sleepiness" and "Sleep-associated movements") emerged. The item analysis showed satisfactory discriminative power. In the preliminary validation, all scales correlated positively with a child's care level and with various sleep circumstances items. Three scales additionally correlated with the number of complex chronic condition diagnoses. This newly developed questionnaire can provide clinicians with first indications of possible sleep problems in a growing paediatric population., (© 2023 The Authors. Journal of Sleep Research published by John Wiley & Sons Ltd on behalf of European Sleep Research Society.)

Objective: There are limited data on the prevalence and stability of fatigue in pediatrics, particularly among youth with chronic pain. Little is known about longitudinal effects of fatigue on health outcomes such as sleep quality, psychological distress, Health-Related Quality of Life, and chronic pain., Methods: A community-based sample of N = 1276 students (9-17 years; 52% female; 30.3% with chronic pain) from 3 schools was screened at 2 measurement points 3 months apart. Prevalence and stability of fatigue were examined. Longitudinal analyses regarding fatigue and health outcomes were run using repeated measures correlations. The impact of change in fatigue on pain progression was analyzed using multilevel linear models., Results: In the total community sample, 4.4% reported severe fatigue symptoms. The prevalence of severe fatigue was significantly higher in students with chronic pain (11.4%) compared to those without (1.3%). Fatigue symptoms persisted for several months, worsening of symptoms was more common and improvement less common in children with chronic pain. Sleep, psychological distress, and Health-Related Quality of Life were significantly associated with fatigue across both measurement points (rs = |0.16-0.44|), with no significant differences in the strength of correlations between children with and without chronic pain (ps > .05). There was a significant interaction between change in fatigue and courses of pain intensity and functional impairment., Conclusions: Fatigue is highly prevalent, particularly in youth with chronic pain. The negative association of fatigue with health outcomes, and its impact on the course of pain, require early identification and treatment of those affected to prevent negative long-term consequences., (© The Author(s) 2023. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

No validated measure for pain self-efficacy in children and adolescents is currently available in the German language, and existing English versions have limitations. This study used a thorough development process to create the Scale for Pain Self-Efficacy (SPaSE) in both German and English languages. Scale development was based on self-efficacy theory, adapting items from existing self-efficacy measures, and review of patients' perspectives. The final version of the 11-item SPaSE was created with expert discussions and testing of content validity, comprehensibility, and construct validity. The validation process consisted of exploratory factor analysis, testing of item characteristics, internal consistency, and sensitivity to change in 2 German samples of children and adolescents with chronic pain (study 1: outpatient sample N = 150, inpatient sample N = 31). Cross-validation in a U.S. sample (study 2: N = 98) confirmed the 1-factor structure, the sound psychometric properties and reliability of the SPaSE. Sum scores of the SPaSE were negatively correlated with pain-related disability, pain intensity, passive pain coping strategies, and emotional distress, in line with previous research. The valid and reliable SPaSE can be used in clinical practice to monitor pain treatment progress, advances the field of pain self-efficacy research in Germany, and opens the door to comparative research in German and English samples. PERSPECTIVE: This article presents psychometric properties of a newly developed measure of pain self-efficacy in children and adolescents that is available in both German and English language. This measure could be used in both research and clinical practice to measure treatment progress and outcome., (Copyright © 2023 United States Association for the Study of Pain, Inc. Published by Elsevier Inc. All rights reserved.)

Background: Young adults find themselves in an unstable phase of life with relationship breaks, falling structures and great challenges in life. Chronic pain makes it difficult to cope with this stage of life due to functional, emotional and social limitations. For this age group there are hardly any target group-specific treatment programs., Objective: The aim of the study was to find out what needs the patient group of young adults with chronic pain have with regard to inpatient pain therapy and what need is indicated for a separate therapy concept for this age group., Material and Methods: Within the framework of a qualitative research approach, specific needs of young adults with regard to inpatient pain therapy were surveyed via guideline-based interviews. A total of 66 interviews were conducted with patients and practitioners. The evaluation was carried out using the method of structuring qualitative content analysis., Results: Five main categories regarding the specific treatment needs of young adult pain patients were identified: respect, belonging, special circumstances, locating the pain and specific elements of therapy., Conclusion: Special living conditions and a respectful treatment attitude are of particular importance. A greater number of activation offers, a higher proportion of life counseling and perspective-creating aspects as well as psychotherapeutic offers are a necessity for an efficient therapy. Acceptance and commitment therapy techniques and the positive benefits of peer groups can expand the treatment approach for young adults. Young adults could benefit from a target group-specific and needs-adapted care structure., (© 2022. The Author(s), under exclusive licence to Springer Medizin Verlag GmbH, ein Teil von Springer Nature.)

In children with life-limiting conditions and severe neurological impairment receiving pediatric palliative care (PPC), the degree to which actigraphy generates meaningful sleep data is uncertain. Benchmarked against the gold standard polysomnography (PSG), the applicability of actigraphy in this complex population was to be assessed. An actigraph was placed on N = 8 PPC patients during one-night polysomnography measurement in a pediatric tertiary care hospital's sleep laboratory. Patient characteristics, sleep phase data, and respiratory abnormalities are presented descriptively. Bland-Altman plots evaluated actigraphy's validity regarding sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency compared to PSG. PSG revealed that children spent most of their time in sleep stage 2 (46.6%) and most frequently showed central apnea (28.7%) and irregular hypopnea (14.5%). Bland-Altman plots showed that actigraphy and PSG gave similar findings for sleep onset, sleep offset, wake after sleep onset (WASO), total sleep time (TST) and sleep efficiency. Actigraphy slightly overestimated TST and sleep efficiency while underestimating all other parameters. Generally, the Actiwatch 2 low and medium sensitivity levels showed the best approximation to the PSG values. Actigraphy seems to be a promising method for detecting sleep problems in severely ill children.

Background: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries., Methods: Online survey with in-country experts from N = 33 European countries., Results: Pediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service., Conclusions: Pediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed., (© 2022. The Author(s).)

Context: In pediatric palliative care, irritability of unknown origin (IUO) in children with severe neurological impairment is a peculiarly complex and challenging symptom, yet its etiology remains poorly understood., Objectives: Presenting a structured IUO diagnostic and therapeutic approach developed in a specialized inpatient pediatric palliative care facility for identifying IUO's potential contributing factors (PCFs)., Methods: Prospective observational study with N = 22 children showing IUO at admission to the inpatient pediatric palliative care facility. Analysis of patient records and participation in ward routine to identify and treat PCFs. Treatment outcome was assessed using a standardized protocol for tracking IUO at 24-hour intervals., Results: Altogether, 136 PCFs were identified (average 6.18 per child) with pain and psycho-social problems being the most common. Two hundred and twenty-two diagnostic measures were initiated of which 159 (71.6%) helped identify a PCF. The majority of PCFs were identified by basic diagnostics (93.7%). Inpatient length of stay and duration of IUO phases correlated significantly. Between baseline (days 3-5; timing at which inpatients experientially show regular behavior) and discharge, patients showed a significant reduction in average 24-hours IUO duration by 1 hour and 26 minutes (Wilcoxon test: Z = -3.29, P < 0.01)., Conclusion: Results lead to a more thorough understanding of PCFs to IUO. Following a systematic approach such as the one presented, PCFs can be detected even by simple diagnostics. In addition to biological aspects, diagnostics and therapy should address psycho-social aspects of IUO., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background and Objectives: Recurrent pain in childhood and adolescence is a common health problem. Pediatricians are usually the patients' first contact person. The current study investigated patients' and parents' expectations when consulting a pediatrician and their rating of the treatment., Materials and Methods: In 36 pediatric practices, 224 patients with recurrent pain and 273 parents participated in this cross-sectional tablet survey. The collected data included the motivation for arranging a physician consultation, pain concept, treatment expectations, and assessment of treatment. Additionally, the patients' age was investigated as an influencing factor., Results: The patients' and parents' predominant motivation for arranging a consultation was the clarification of the cause of pain. Older patients were additionally motivated by frequent but ineffective drug use. Predominantly in older patients, a biopsychosocial pain explanation was identified. Approximately half of all patients and parents indicated biological and psychological influencing factors. The most frequent expectation of the consultation was obtaining information on pain management. Overall, consultations were rated very positively, especially when patients and parents felt understood and taken seriously., Conclusions: Information about the cause of pain and pain management are essential for patients and parents. Besides good communication, sufficient time resources of the practitioner are required., (© 2021. Springer Medizin Verlag GmbH, ein Teil von Springer Nature.)

Purpose: Fatigue is a common symptom in children and adolescents. Its negative impact on health outcomes is even more pronounced in those with chronic pain. There is currently no fatigue measurement tool in German that is validated for both children and adolescents with and without chronic pain. Therefore, this study aimed to gather quantitative validity evidence to support the use of the German version of the PROMIS ® Pediatric Short Form v2.0 - Fatigue 10a (PROMIS ® F-SF) in the German pediatric general population as well as in German pediatric chronic pain patients., Methods: The 10-item self-assessment questionnaire was validated in a sample of N = 1348 school children (9-18 years; 52.4% female) and N = 114 pediatric chronic pain patients (8-17 years; 63.3% female). Construct and convergent validity, reliability, and item and scale characteristics were examined., Results: Confirmatory factor analyses showed sufficient model fit for the 1-factor model of the questionnaire (school sample: CFI = 0.94, RMSEA = 0.10, SRMR = 0.04; patient sample: CFI = 0.90, RMSEA = 0.14, SRMR = 0.05). Convergent validity was supported by weak-to-large significant correlations with sleep quality, health-related quality of life (HRQoL), and pain characteristics. The questionnaire had excellent internal consistency in both samples (α = 0.92 and α = 0.93). Sex differences and age distributions of the PROMIS ® F-SF showed that girls reported significantly higher fatigue than boys and that fatigue increased with age., Conclusion: The PROMIS ® F-SF is a reliable instrument with good psychometric properties. Preliminary evidence is provided that the questionnaire validly measures fatigue in children and adolescents with and without chronic pain., (© 2021. The Author(s).)

According to international studies, children and adolescents with disabilities have more tooth decay, brush their teeth less often twice a day and use preventive dental services less often than children and adolescents without disabilities. With data from the second follow-up to the German Health Interview and Examination Survey for Children and Adolescents (KiGGS Wave 2, 2014-2017), toothache, tooth brushing frequency and dental check-ups are examined in children and adolescents with and without disabilities. It was found that children and adolescents with disabilities had more toothache in the three months before the survey (23.5% and 15.9%, respectively) and brushed or got their teeth brushed twice a day less often (33.5% and 22.2%, respectively) than children and adolescents without disabilities. Differences in the utilisation of dental check-ups could not be determined. Overall, the results point to the importance of measures to promote tooth brushing frequency in order to improve the oral health of children and adolescents with disabilities. In addition, further opportunities should be created to collect data on the oral health of people with disabilities at the population level in health or participation studies., Competing Interests: Conflicts of interest The authors declared no conflicts of interest., (© Robert Koch Institute. All rights reserved unless explicitly granted.)

Objective: Sleep problems are common in children and adolescents with chronic pain. The revised Adolescent Sleep-Wake Scale (rASWS) is an internationally well-established instrument to assess sleep quality in adolescents. So far, no German version is available. The study aimed to provide a validated German version of the rASWS, specifically for use in children and adolescents with chronic pain., Methods: The translated questionnaire was validated in a sample of N = 159 pediatric outpatients with chronic pain (8-17 years; 65.4% female), who presented to a specialized pediatric pain center. For cross-validation a community sample of N = 1348 school children was analyzed., Results: Confirmatory factor analysis was conducted to examine the factor structure of the original 10-item 3-factor model in the sample of children and adolescents with chronic pain, which showed poor model fit. Model modifications were carried out by deleting 3 items with low factor loadings stepwise. The overall model fit of the final 3-factor model containing 7 items was excellent. Cronbach's α of the derived scales ranged from 0.74 to 0.86. Cross-validation in a community sample of school children confirmed the superiority of the 7-item model. The convergent validity of the measure was proved by moderate correlations between the rASWS and self-reported sleep problems. Associations with chronic pain characteristics were evident for pain-related disability., Conclusions: The use of the 7-item version of the rASWS for German-speaking children and adolescents with and without chronic pain is recommended as a self-report measure of sleep quality., (Copyright © 2021 Elsevier B.V. All rights reserved.)

Background and Objectives: Current research on the treatment of chronic pain in children suggests an increasing trend internationally in the quantity as well as invasiveness of diagnostic and therapeutic interventions. The objective of this research was to examine the interventions received by patients before starting specialized inpatient pain treatment., Materials and Methods: A retrospective survey was conducted analyzing patient files from a tertiary children's pain center from 2004, 2008, 2012 and 2016 (N = 585). In addition to diagnostic and therapeutic interventions, pain and patients' characteristics were collected. The identified measures were subsequently evaluated by an interdisciplinary expert panel regarding their invasiveness, potential risk and degree of mental burden., Results: An increase in diagnostic measures and medication was found up to 2012. Thereafter, a decreasing trend was identified (χ 2 (3) = 11.708; p = 0.008). Invasiveness (χ 2 (3) = 13.342; p = 0.004), risk (χ 2 (3) = 13.135; p = 0.004) and mental burden (χ 2 (3) = 14.403; p = 0.002) showed the same pattern of change. Patients with abdominal and limb pain are particularly at risk for highly invasive and high risk diagnostics., Conclusions: Evidence for an increase in diagnostic and therapeutic measures in chronic pain was found up to 2012. Patients presenting with certain complaints receive comparably more invasive, risky and burdensome measures.

Objectives: Prevalence estimates of severe chronic pain in pediatric community samples are rare and inconclusive. This study aimed to (1) examine the prevalence of chronic pain severity grades in school children and (2) investigate differences between pain severity grades for pain-related characteristics, including pain locations, sociodemographic characteristics, emotional functioning, insomnia, school factors, and health care utilization., Materials and Methods: This cross-sectional observational study was conducted with 2220 school students in Germany (52% female individuals, age: M=13.0; SD=1.8; range, 10 to 18 y). Pain severity was assessed using the validated Chronic Pain Grades for adolescents. Comparisons between Chronic Pain Grade subgroups of adolescent characteristics were conducted using χ2 tests, Kruskal-Wallis tests, and 1-way analysis of variance., Results: In school students, 31.0% had chronic pain with 8.2% categorized as severe. Individuals with higher pain severity tended to be girls and have multisite pain, more symptoms of depression and generalized anxiety, and a higher emotional burden of pain. Individuals with higher pain severity also reported less school satisfaction, lower perceived school performance, and more insomnia. Pain medication intake and physician visits because of pain were more common in those with more severe pain., Discussion: Severe chronic pain affects nearly 1 in 10 adolescent school students and is associated with several negative health outcomes and increased health care utilization. It is important to ensure that specialized pain treatment programs are available to these students and that they are aware of the different negative health outcomes associated with the pain condition., Competing Interests: This work was Supported by the German Federal Ministry of Education and Research (grant number 01GY1615). The authors declare no conflict of interest., (Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.)

Abstract: Parents with chronic pain have a higher likelihood of having depression and anxiety and more often have children with these conditions. Depressive and anxious symptoms in children worsen pain-related disability and may be derived from exposure to their parents' symptoms. We assessed a model of intergenerational chronic pain-related disability that relies upon depressive and anxious symptoms of a mother and their child. Adolescents in grades 5 to 10 from 5 schools, and their mothers, completed standardized electronic questionnaires about pain. In maternal-offspring dyads (n = 1179), the mean offspring age was 12.7 years (SD = 1.7, range = 10-17) and 51% were girls. Logistic regression was used to investigate mother-offspring associations of chronic pain presence, and mediation models using multiple linear regression were used to investigate the proposed model. Adolescents of mothers with chronic pain had 1.67 (95% confidence interval [CI] = 1.29-2.16) times increased odds of chronic pain, with each year of exposure to maternal chronic pain associated with a 5% (odds ratio 95% CI = 1.01-1.10) increased likelihood of offspring chronic pain. Worse maternal pain-related disability was associated with worse offspring pain-related disability (β = 0.20, 95% CI = 0.06-0.34). The mediation model indicated maternal and adolescent offspring symptoms of depression explained 36% of the relationship between maternal and offspring pain-related disability, with 11% explained by the intergenerational transmission of depression (serial mediation). We conclude that worse pain-related disability is associated between parent and child, and that depressive symptoms common to both mother and child play a key role in this relationship., (Copyright © 2020 International Association for the Study of Pain.)

Living with bandages: a mixed-methods-study on the view of families of children with epidermolysis bullosa Abstract. Background: Children with epidermolysis bullosa (EB) often need new bandages regularly due to sore skin and blistering. Aim: The question about the experiences of parents and children affected by EB with dressing materials is intended to identify starting points for effective support of families. Methods: In the first part of the sequential mixed-methods study, guideline-based interviews were conducted and evaluated with qualitative content analysis. Based on the results, a questionnaire was developed and implemented as an online survey. After analysis with descriptive statistics, these results were combined with the qualitative results. Results: In the "Find out what works" process, the cutting of the materials and the importance of flexibility come to the fore. The parents' confidence in their actions is particularly evident in the application of the bandages and in their knowledge of the materials. The removal of glued dressings is often associated with pain. Dirty bandages are the most common problem in everyday life. Both aspects relate to the wearability of the bandages. When bandages are integrated into everyday family life, the most important role is played by cost absorption and expertise in the organisation. Conclusions: Parents develop specific competences on EB, on their child and dressings. With counselling and education, nursing takes a central function within the multi-professional accompanying interventions to support and relieve families.

Background: Epidermolysis bullosa (EB) is a rare genetic disease that soon becomes apparent after a child's birth. Mechanical stress in particular causes painful skin-blistering that potentially leads to numerous complications. Dressing materials fulfill important functions for children with EB: they help protect the skin, but create problems at the same time., Objective: The study focuses on the experiences with dressing materials among parents and affected children. The exploration of individual experiences and the presentation of successful strategies to deal with problems is intended to contribute to a better understanding of the advantages and disadvantages of different dressing materials., Materials and Method: Following a qualitative research approach, eight semi-structured interviews were conducted with N = 13 persons. For analysis, a structured qualitative content analysis with an inductive/deductive approach for setting up the final categories was chosen., Results: The use of dressing materials in the context of a dressing change is a key issue for parents and affected children. Five main categories were identified: the child's individuality; problems of use; the adjustment process; parents' expertise; organization of materials. In a continuous process, parents acquire specific knowledge and skills that enable a good fit between the dressing materials and their child and contribute to their own handling confidence., Conclusion: With their action-oriented expertise, parents can avoid additional skin damage caused during dressing changes. Here, the focus is on technical skills that lead to more comfort for the affected child and help parents to meet the challenge of dressing changes. Regarding the child's development, parents are continually confronted with new challenges and must adapt their old, or develop new, strategies.

Background: Chronic pain is a frequent and disabling health problem in children and adolescents and is associated with high health care utilization and costs., Objective: The aim of this study was to analyze the direct and indirect costs of chronic pain in children and adolescents in monetary terms before and after multimodal pain therapy from a societal perspective., Materials and Methods: Health care costs 12 months before and after multimodal pain therapy include direct costs from statutory health insurances and parents as well as indirect costs due to working days lost., Results: Direct median costs before multimodal treatment were 5619 € (min-max: 377-35,509 €) per year. In the year after pain therapy, costs decreased to a median of 3262 € (min-max: 142-42,910 €) (p = 0.001). In all, 55% of patients showed a significant cost reduction, while 18% had a cost increase., Conclusions: An effective multimodal pain therapy may reduce health care costs in children and adolescents. Further economic studies are needed to evaluate long-term effects of pain therapy for children and adolescents with chronic pain in a controlled design.

Background: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families., Aim: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families., Design: A qualitative research design following a constructivist research paradigm was employed. Guided interviews were conducted with parents of children with life-limiting conditions and severe neurological impairment and professional caregivers. The data were analyzed using qualitative content analysis., Setting: Overall, 10 cooperating pediatric palliative care institutions across Germany (outpatient and inpatient settings) aided in the recruitment of eligible parents and professional caregivers. A total of 11 interviews with 14 parents and 17 interviews with 20 professional caregivers were conducted., Results: Six core outcome domains of pediatric palliative care for children with severe neurological impairment and their families were identified, namely (1) symptom control, (2) respite and support, (3) normalcy, (4) security, (5) empowerment, and (6) coping with the disease, each consisting of 1 to 13 individual aspects., Conclusion: As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.

Background: Multidrug resistant pathogens are a large-scale healthcare issue. In particular, children with life-limiting conditions have a significantly increased risk of multidrug resistant pathogen colonization. Official hygiene requirements recommend children, who are colonized with multidrug resistant pathogens, to be isolated. In the context of pediatric palliative care, such isolation adversely affects the aim of social participation. To overcome this challenge of conflicting interests on a pediatric palliative care inpatient unit, a hygiene concept for patients colonized with multidrug resistant pathogens, called PALLINI, was implemented., Aim: The aim of this study was to identify the nurses' attitudes and opinions toward PALLINI., Methods: Nurses ( N  = 14) from the pediatric palliative care unit were queried in guideline-oriented interviews. Interviews were analyzed qualitatively by means of content analysis., Results: The following four categories were identified: (1) safety, (2) effort, (3) quality of care, and (4) participation. All categories demonstrated ambivalence by nursing staff regarding PALLINI. Ambivalence arose from guaranteeing infection control versus noncompliance by the families, additional workload for patients with multidrug resistant pathogens versus lack of resources, impaired relationship with the parents versus enabling better care for the child, as well as enabling some limited contact versus the larger goal of genuine social participation. Despite this, nurses reported the importance of arranging everyday-life for the patients so that they experience as much social participation as possible., Conclusion: The implementation of a new hygiene concept is challenging. Despite positive reception of PALLINI from the nurses, ambivalence remained. Addressing these ambivalences may be critical to best implement the new hygiene concept.

Aim: Nosocomial infections (NIs) and multidrug resistant (MDR) pathogens are an important paediatric healthcare issue. In vulnerable patients such as children with life-limiting conditions, MDR infections can be life-threatening. Additionally, these children have a significantly increased risk for colonisation with MDR pathogens. Therefore, it is vital to prevent new colonisations with MDR pathogens in this vulnerable patient group. However, little is known about colonisation with MDR pathogens and NIs in inpatient units for paediatric palliative care (PPC). The aim of this study was to investigate the prevalence of colonisation with MDR pathogens and the incidence of NIs in a PPC unit. Methods: Evaluation of surveillance data of a PPC unit. All patients admitted to a PPC unit from 1 st April 2012 to 31 st March 2013 were screened for MDR pathogens upon admission. Patients who exhibited clinical signs of an infection during their inpatient stay were screened again. Results: During the study period, 198 cases were admitted to the unit. Those cases represent 118 patients. 18% of the patients were colonised with MDR pathogens. The most common MDR pathogens were E. coli (8.1%) and Pseudomonas ssp. (8.1%). In addition, 58% of patients with tracheostomy had MDR pathogens in their tracheal secretions. The incidence density of NIs was 0.99 per 1000 inpatient treatment days with no NI caused by MDR pathogens. Conclusion: Due to a high prevalence, it is reasonable to screen PPC patients for MDR pathogen colonisation before or during admission. Special attention must be given to patients with tracheostomy. Our results provide preliminary evidence that participation in social activities in a PPC unit for patients colonised with MDR pathogens is safe if hygiene concepts are applied., Competing Interests: The authors declare that they have no competing interests., (Copyright © 2020 Schmidt et al.)

Background: Emerging adulthood between the ages of 18 and 25 are vulnerable years that offer many opportunities and simultaneously represent huge challenges for autonomy and identity development. Chronic pain in this vulnerable stage of life is associated with long-term negative consequences. So far, knowledge regarding the effectiveness of treatment offers for this patient group is scarce., Objective: The aim of this study is to examine the effectiveness of a multimodal inpatient pain therapy for young adults with chronic pain. In addition, the change and influence of the autonomy development will be investigated., Materials and Methods: The present longitudinal study examined the effectiveness of a 3-week multimodal inpatient pain treatment in young adults with chronic pain. Three-month follow-up data from 74 patients aged 18-25 years (75.7% female) were included in the study. Standardized questionnaires were used to investigate pain characteristics, pain-associated and emotional impairments quality of life, and various facets of autonomy., Results: The results show that pain-related and emotional impairments are significantly reduced after therapy. Furthermore, there is a significant improvement in the quality of life and resilience. The increased quality of life and reduced pain-related and emotional impairment are associated with a gain of autonomy convictions., Discussion: Multimodal inpatient pain treatment seems to be effective during emerging adulthood. Autonomy convictions seem to be an important starting point for therapeutic success and have a modulating importance in terms of positive changes in emotional impairment and quality of live. Therefore, this aspect should be considered when pain treatment offers are developed for this age group.

Objective: Many children and adolescents with chronic pain report substantial emotional distress, such as symptoms of anxiety and depression, that need to be assessed for successful chronic pain treatment. In the context of pediatric chronic pain, the Revised Children's Anxiety and Depression Scale has been recommended for the assessment of anxiety and depression symptoms. Therefore, the present study aimed to validate the German version of the Revised Children's Anxiety and Depression Scale in a sample of children and adolescents with chronic pain., Methods: Data were collected from N = 300 children and adolescents (age 8-17 years) who presented with headache, abdominal pain and/or musculoskeletal pain at a specialized pediatric pain center for interdisciplinary outpatient pain evaluation., Results: Cronbach's α for the total and subscales of the Revised Children's Anxiety and Depression scale ranged from 0.73 to 0.95. Sound psychometric properties were found in terms of item properties, factor structure and convergent validity with other measures of anxiety and depression (r ranged from 0.40 to 0.94). Girls reported significantly higher levels of anxiety and depression compared with boys. Higher pain severity was associated with more symptoms of anxiety and depression., Conclusion: This study demonstrated that the German version of the Revised Children's Anxiety and Depression Scale is a reliable and valid measure for the assessment of anxiety and depression symptoms in children and adolescents with chronic pain. Further studies in school and clinical samples are needed to establish German norms and cutoff points for this scale., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Background: To date only few studies have addressed the level of intelligence of children and adolescents with chronic pain. The few currently available studies suggest a cognitive performance of pediatric pain patients in the average range (IQ 85-115); however, only little is known about the relationship between pain characteristics and cognitive skills., Objective: The aim of the study was to retrospectively examine the intelligence scores of severely impaired pediatric chronic pain patients to improve the knowledge about the association of pain and cognitive performance and to create a basis for further prospective studies., Material and Methods: In the exploratory evaluation data from N = 180 children and adolescents who were treated as inpatients at the German Pediatric Pain Center in Datteln in 2016 were included. Due to the standardization of the IQ scores a comparison within the sample was possible as well as a comparison to the norm sample., Results: The intelligence level of severely impaired pediatric pain patients fell within the normal range (M = 99.32; SD = 14.13). Neither the main pain location nor the emotional variables or pain parameters (e.g. pain intensity) had a significant association with the IQ scores. Compared to the norm sample, pediatric pain patients had a higher processing speed. Intraindividual comparisons showed a significantly lower verbal IQ than performance IQ and a lower verbal comprehension compared to perceptual organization and processing speed. Moreover, there was a negative association between pain intensity, the verbal IQ and verbal comprehension., Conclusion: The results support the assumption that the intellectual performance of pediatric pain patients lies within the average range; however, the results indicate a limited competence in verbal abstraction and expressiveness of pediatric pain patients, which are negatively related to pain intensity. Further studies to examine causal relationships are needed.

Context: Opioids administered by various routes are a mainstay of tumour-related pain management. Subcutaneous or intravenous patient-controlled analgesia (PCA) with opioids is an appropriate and safe form of treatment for postoperative pain but studies on this form of administration are sparse in the setting of cancer pain despite widespread use., Objective: To evaluate the published studies on opioids administered by subcutaneous and intravenous patient-controlled analgesia for patients with cancer pain., Methods: Articles were identified from the Cochrane Central Register of Controlled Trials (The Cochrane Library Issue 7, 2016), PubMed (Medline; 1975 to 2016) and EMBASE (1974 to 2016). Additional reports were identified from the reference lists of retrieved papers. Studies based on original data with a focus on intravenous or subcutaneous PCA administration of opioids in patients suffering from cancer-related pain were selected. The language was restricted to Dutch, English or German. Predefined information was extracted depending on the topic., Results: Fifty studies published since 1980 met the inclusion criteria. A wide range of study designs, study quality and research objectives were observed. The studies indicated use of standard or by proxy PCA in the inpatient and outpatient setting were safe and useful while significant adverse effects were rarely observed., Conclusion: This systematic review of the current evidence suggests PCA can be appropriately used in a wide range of clinical situations.

Objectives: The assessment of pain-related disability in pediatric chronic pain patients plays an important role in research on the effectiveness of pain treatment. The present study aimed to compare the 2 available measures of pain-related disability in the German language, the Functional Disability Inventory (FDI) and Pediatric Pain Disability Index (PPDI), in terms of psychometric properties and convergent validity. In addition, associations between FDI/PPDI scores and sex, age, and pain locations were investigated., Materials and Methods: Data of N=250 pediatric pain patients (Mage=14.4, SD=1.8) were collected at the patients' initial presentation to a specialized pediatric pain center., Results: The results revealed similarly sound psychometric properties in terms of model fit, item difficulties, corrected item-total correlations, and missing values for both measures. However, item difficulties for the FDI were rather low. Both measures displayed good convergent validity in terms of associations with pain intensity, pain-related school absence, and emotional functioning (anxiety, depression). In both measures, girls had significantly higher scores than boys. No associations were found between the FDI/PPDI total scores and age or pain location., Discussion: In conclusion, both measures are equally suited to assess pain-related disability in adolescents with chronic pain. The FDI should be used with caution in epidemiological studies due to the risk of floor effects. Further research is needed with regard to the relationship between pain-related disability and sex.

Fear of pain plays an important role in the maintenance of chronic pain. It may be reduced through exposure therapy. This 2-arm parallel samples randomized controlled trial aimed to investigate whether interoceptive exposure (IE) therapy enhances reductions in fear of pain (primary outcome), pain (pain intensity, pain-related disability, and school absence), and emotional characteristics (anxiety and catastrophizing) when implemented as an adjunctive treatment in the context of intensive interdisciplinary pain treatment for pediatric chronic pain patients. N = 126 adolescents, aged 11 to 17 years, who were receiving standard intensive interdisciplinary pain treatment were randomly assigned to either receive additional IE (n = 64) or additional relaxation therapy (RT) (n = 62). All patients were assessed at admission, discharge, and 3 months after discharge. The data of N = 104 patients were analyzed. Significant large reductions were found in the total score and subscale scores of the Fear of Pain Questionnaire for Children in both study groups (eg, total score [range 0-60; IE/RT]: admission M = 23.5/24.9; discharge M = 16.0/19.7; P < 0.001, (Equation is included in full-text article.)= 0.27) and mainly large reductions in pain characteristics. There were no greater decreases in the IE group (P > 0.1). The exploratory analyses revealed that the patients with high fear of pain before treatment (P < 0.05, (Equation is included in full-text article.)> 0.03) and the patients with abdominal pain (P < 0.04, (Equation is included in full-text article.)> 0.25) showed greater decreases in their fear of pain (total and subscale score) in the IE group than in the RT group. In conclusion, the results suggest that IE is not particularly effective for all the pediatric chronic pain patients, but the patients with high fear of pain before treatment and with abdominal pain strongly benefit from this intervention.

Objectives: Although treatment satisfaction is recommended in the Pediatric Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (PedIMMPACT) as a core outcome measure in pediatric chronic pain clinical trials, no results regarding this outcome measure have been reported to date for intensive interdisciplinary pain treatment in children and adolescents. The aim of the present study was to close this gap and investigate the treatment satisfaction of pediatric patients with different chronic pain disorders who received intensive interdisciplinary pain treatment and who were followed up over 4 years., Methods: Treatment satisfaction and treatment outcome were assessed immediately after and 6, 12, and 48 months after intensive interdisciplinary pain treatment for N=104 patients (Mage=13.5; SD=2.2)., Results: Patients and their parents were highly satisfied with the treatment and strongly agreed in their ratings. Emotional distress before treatment and younger age increased the risk of being dissatisfied. Analyses revealed that treatment satisfaction was independent of treatment outcome., Discussion: Taken together, the results show that treatment satisfaction is not associated with treatment outcome. A global judgment of satisfaction seems to be an independent outcome measure but may be inappropriate for measuring the multifaceted construct of satisfaction. Instead, separate satisfaction ratings in specific areas, for example, treatment methods or outcome, may be more suitable.

Objective: Disabling pediatric chronic pain is accompanied by a significant burden to those affected and by high societal costs. Furthermore, it bears the risk of aggravation into adulthood. Studies have shown intensive interdisciplinary pain treatment to result in short-term positive effects on pain-related and psychological outcomes. In this study, we aimed to prove the stability of the long-term effects of intensive interdisciplinary pain treatment four years after treatment., Methods: This longitudinal observational study followed adolescents who had received intensive interdisciplinary pain treatment over four years. We defined a combined end point, overall improvement (pain intensity, pain-related disability, and school/work absence), and investigated three additional psychological outcome domains (anxiety, depression, pain catastrophizing). We also examined changes to economic parameters (health care utilization, subjective financial burden) and their relationship to patient improvement., Results: Similar patterns were observed for pain-related and psychological outcome domains, with data showing statistically and clinically significant reductions from admission to four-year follow-up. These positive effects were stable from one- to four-year follow-up. Approximately 60% of the adolescents showed an overall long-term improvement. Older age was found to be a risk factor for treatment failure. Economic parameters decreased statistically significantly, particularly for those with an overall improvement of the chronic pain disorder., Conclusions: The results of this study support the long-term effectiveness of intensive interdisciplinary pain treatment and indicate that it can interrupt pain chronification. Future research is warranted to investigate why some of the adolescents did not show improvement and to allow for a more individualized treatment., (© 2017 American Academy of Pain Medicine. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com)

Pediatric chronic pain, which can result in deleterious effects for the child, bears the risk of aggravation into adulthood. Intensive interdisciplinary pain treatment (IIPT) might be an effective treatment, given the advantage of consulting with multiple professionals on a daily basis. Evidence for the effectiveness of IIPT is scarce. We investigated the efficacy of an IIPT within a randomized controlled trial by comparing an intervention group (IG) (n=52) to a waiting-list control group (WCG) (n=52). We made assessments before treatment (PRE), immediately after treatment (POST), as well as at short-term (POST6MONTHS) and long-term (POST12MONTHS) follow-up. We determined a combined endpoint, improvement (pain intensity, disability, school absence), and investigated 3 additional outcome domains (anxiety, depression, catastrophizing). We also investigated changes in economic parameters (health care use, parental work absenteeism, subjective financial burden) and their relationship to the child's improvement. Results at POST showed that significantly more children in the IG than in the WCG were assigned to improvement (55% compared to 14%; Fisher P<.001; 95% confidence interval for incidence difference: 0.21% to 0.60%). Although immediate effects were achieved for disability, school absence, depression, and catastrophizing, pain intensity and anxiety did not change until short-term follow-up. More than 60% of the children in both groups were improved long-term. The parents reported significant reductions in all economic parameters. The results from the present study support the efficacy of the IIPT. Future research is warranted to investigate differences in treatment response and to understand the changes in economic parameters in nonimproved children., (Copyright © 2013 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved.)

Unlabelled: Assessing if an individual patient has achieved clinically meaningful changes in pain intensity is a core aspect in the evaluation of pain treatments. The aim of the present study was to define minimally clinically significant differences (MCSDs) for the numerical rating scale (0-10 NRS) in adolescents with chronic pain. Data from 153 adolescents who completed an inpatient treatment were analyzed. MCSDs were defined as those cut points that yielded an optimal balance between sensitivity and specificity with regard to patients' global impression of change. The variability of the empirically defined cut points was quantified using bootstrapping. Our results show that raw changes of 1 NRS point and percent changes of 12.5% can be considered MCSDs both within the full sample and within various subsamples of patients. Applying the MCSDs developed for adults to pediatric patients yielded extremely low sensitivities; for example, only 22% of the children who described global improvement met the 50% decrease in pain criterion. Studies evaluating chronic pain treatments for adolescents should use MCSDs that are specifically developed for this group of patients. Raw changes of 1 point and 12.5% on the 0 to 10 NRS should be considered clinically meaningful. On a methodological level, we call for more systematic studies aimed at defining MCSDs that also address the variability of cut point estimates so as to foster the integration of findings., Perspective: Many studies are aimed at empirically defining cut points for clinically relevant pain using receiver operating characteristic-based methods. For the first time, we apply these methods to children and show that even when taking into account the variability of the method, cut points specific for children are needed., (Copyright © 2014 American Pain Society. Published by Elsevier Inc. All rights reserved.)