Clinical recommendations for the inpatient management of lower respiratory tract infections in children and adolescents with severe neurological impairment in Germany.

Children and adolescents with severe neurological impairment (SNI) require specialized care due to their complex medical needs. In particular, these patients are often affected by severe and recurrent lower respiratory tract infections (LRTIs). These infections, including viral and bacterial etiology, pose a significant risk to these patients, often resulting in respiratory insufficiency and long-term impairments. Using expert consensus, we developed clinical recommendations on the management of LRTIs in children and adolescents with SNI. These recommendations emphasize comprehensive multidisciplinary care and antibiotic stewardship. Initial treatment should involve symptomatic care, including hydration, antipyretics, oxygen therapy, and respiratory support. In bacterial LRTIs, antibiotic therapy is initiated based on the severity of the infection, with aminopenicillin plus a beta-lactamase inhibitor recommended for community-acquired LRTIs and piperacillin-tazobactam for patients with chronic lung disease or tracheostomy. Ongoing management includes regular evaluations, adjustments to antibiotic therapy based on pathogen identification, and optimization of supportive care. Implementation of these recommendations aims to improve the diagnosis and treatment of LRTIs in children and adolescents with SNI. What is Known: • Children and adolescents with severe neurological impairment are particularly affected by severe and recurrent lower respiratory tract infections (LRTIs). • The indication and choice of antibiotic therapy for bacterial LRTI is often difficult because there are no evidence-based treatment recommendations for this heterogeneous but vulnerable patient population; the frequent overuse of broad-spectrum or reserve antibiotics in this patient population increases selection pressure for multidrug-resistant pathogens. What is New: • The proposed recommendations provide a crucial framework for focused diagnostics and treatment of LRTIs in children and adolescents with severe neurological impairment. • Along with recommendations for comprehensive and multidisciplinary therapy and antibiotic stewardship, ethical and palliative care aspects are taken into account.

Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions.

BACKGROUND: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other measures of sleep diagnostics. METHODS: In this monocentric prospective study N = 26 children and adolescents with life-limiting conditions treated on a pediatric palliative care unit were assessed. For three consecutive nights they wore an actigraph; the 24-hours sleep protocol documented by nurses and the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC) answered by parents were analyzed. Patient characteristics and the parameters sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency (SE) were descriptively examined. Percentage bend correlations evaluated the three measures' concordance. RESULTS: Descriptively, and except for the number of waking episodes, the different measures' estimations were comparable. Significant correlations existed between actigraphy and the sleep protocol for sleep onset (r = 0.83, p = < 0.001) and sleep offset (r = 0.89, p = < 0.001), between actigraphy and SCAC for SE (r = 0.59, p = 0.02). CONCLUSION: Agreement of actigraphy with the focused sleep measures seems to be basically given but to varying degrees depending on the considered parameters.

[Pediatric inpatient interdisciplinary multimodal pain treatment in Germany]. / Pädiatrische stationäre interdisziplinäre multimodale Schmerztherapie in Deutschland.

BACKGROUND: Severely disabling chronic pain affects approximately half a million children in Germany. If there is a lack of response to unimodal treatment, an inpatient interdisciplinary multimodal pain treatment (IMPT) can be considered. OBJECTIVE: This review article describes the supply situation of pediatric inpatient IMPT in Germany and presents the current evidence on the effectiveness. MATERIAL AND METHODS: Based on a systematic literature search, studies addressing the effectiveness of pediatric inpatient IMPT in Germany were identified. In addition, further sources were used to extract information on pediatric IMPT treatment centers in Germany in order to describe the treatment approaches, the qualification of personnel and characteristics of patients. RESULTS: There are four pediatric pain centers in Germany that are specialized in inpatient IMPT for children and adolescents. Treatment duration ranges between 3 and 4 weeks. The multimodal treatment is carried out by a multiprofessional team and is generally available for patients up to 18 years. The majority of patients are female. The effectiveness of pediatric IMPT in Germany was investigated up to 4 years after treatment. Positive effects were shown for pain characteristics and also for the emotional burden. Additional treatment modules can facilitate further optimization of treatment effects. CONCLUSION: Further research on the effectiveness of IMPT in Germany is important in order to refine and optimize the available treatment programs.

Development and preliminary validation of the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC).

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.

[Specific therapy needs of young adults with chronic pain : Results of a qualitative interview study]. / Spezifische Therapiebedürfnisse junger Erwachsener mit chronischen Schmerzen : Ergebnisse einer qualitativen Interviewstudie.

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.

Multidrug-resistant organisms in paediatric palliative care patients - Prevalence, risk factors and the impact of a liberal hygiene concept.

AIM: Multidrug-resistant organisms (MDRO) deserve special attention in health-care facilities for children with life-limiting conditions because these children have an increased risk for colonisation. To avoid nosocomial transmissions to other inpatients, single-room isolation is usually recommended. In the context of paediatric palliative care (PPC), such isolation counters the aim of participation in social activities for the patients. This study aimed to determine the prevalence of MDRO, the predictive value of risk factors and the incidence of nosocomial infections and nosocomial colonisations on a PPC inpatient unit applying a special hygiene concept that enables participation in social activities through risk-adaption and barrier nursing. METHODS: Two-year surveillance with MDRO screening of all intakes (N = 386) of a PPC unit on the day of admission and discharge. To determine the predictive value of pre-defined risk factors, logistic regression analyses were calculated. Receiver operating characteristic analyses were performed to determine the predictive power of the number of risk factors on the presence of MDRO. RESULTS: The rate of MDRO colonisation at admission was 12.7%; previous positive MDRO screening was the only significant individual risk factor. Over the 2-year period, no MDRO-related nosocomial infections occurred; nosocomial colonisation incidence density was 0.6. CONCLUSION: Results demonstrate that patients with at least one risk factor have to be cared for by barrier nursing until MDRO screening results are negative. Following these guidelines prevents nosocomial MDRO transmission.

Expert survey on coverage and characteristics of pediatric palliative care in Europe - a focus on home care.

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.

Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairmentis-A multicenter prospective study.

BACKGROUND: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments. AIM: The aim of this study was to develop and validate a family-centered multidimensional outcome measure for pediatric palliative care patients with severe neurological impairment that encompasses the entire unit of care. DESIGN: Based on results of a qualitative study, the questionnaire was developed by consensus-based generation of questions. It was validated in a multicenter prospective study employing exploratory and confirmatory factor analyses as well as reliability and item analyses. SETTING: A total of 11 pediatric palliative care teams across Germany aided in the recruitment of study participants. Questionnaires were answered by 149 parents of children with severe neurological impairment and 157 professional caregivers. RESULTS: The exploratory factor analysis of parent data revealed a 6-factor structure of the questionnaire representing: symptoms, the child's social participation, normalcy, social support, coping with the disease and caregiver's competencies. This structure was verified by a confirmatory factor analysis of professional caregiver data. Five separate items regarding siblings, partners, and further symptoms not applicable for all patients were added to ensure full multidimensionality. CONCLUSION: A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application.

[Diagnostics and therapy in children and adolescents with chronic pain : Trends in interventions potentially dangerous to health]. / Diagnostik und Therapie bei Kindern und Jugendlichen mit chronischem Schmerz : Zeitliche Entwicklung potenziell gesundheitsgefährdender Maßnahmen.

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 (χ2(3) = 11.708; p = 0.008). Invasiveness (χ2(3) = 13.342; p = 0.004), risk (χ2(3) = 13.135; p = 0.004) and mental burden (χ2(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.

Addressing multidrug resistant pathogens in pediatric palliative care patients-the nurses point of view: A qualitative study.

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.

Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study.

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.

[Dressing material in children with epidermolysis bullosa : A qualitative study on experiences of parents and affected children]. / Verbandsmaterial bei Kindern mit Epidermolysis bullosa : Eine qualitative Studie zu den Erfahrungen von Eltern und betroffenen Kindern.

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.

[Interdisciplinary multimodal inpatient pain treatment for young adults : Influence of autonomy on effectiveness]. / Interdisziplinäre multimodale stationäre Schmerztherapie für junge Erwachsene : Einfluss der Autonomie auf die Effektivität.

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.

[Chronic pain in children and adolescents: an economic perspective]. / Chronischer Schmerz bei Kindern und Jugendlichen: eine ökonomische Betrachtung.

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.

[Living with bandages: a mixed-methods-study on the view of families of children with epidermolysis bullosa]. / Mit Verbänden leben: Eine Mixed-Methods-Studie zur Sicht der Familien von Kindern mit Epidermolysis bullosa.

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.

Subcutaneous or intravenous opioid administration by patient-controlled analgesia in cancer pain: a systematic literature review.

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.

[The association between intelligence and pain in children and adolescents with severely impairing chronic pain : A retrospective analysis]. / Der Zusammenhang von Intelligenz und Schmerz bei Kindern und Jugendlichen mit schwer beeinträchtigenden chronischen Schmerzen : Eine retrospektive Analyse.

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.

Clinical and Economic Long-Term Treatment Outcome of Children and Adolescents with Disabling Chronic Pain.

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.

Intranasal fentanyl for respiratory distress in children and adolescents with life-limiting conditions.

BACKGROUND: Respiratory distress is one of the most common and frightening symptoms of children with life-limiting conditions. Because treatment of the underlying cause is frequently impossible or insufficient, in many children, symptomatic treatment is warranted. The purpose of this study was to describe the circumstances of the use of intranasal fentanyl in an acute attack of respiratory distress (AARD) in children receiving palliative care, as well as to describe outcomes and adverse events after its use. METHODS: Children and adolescents treated in a pediatric palliative unit or attended by a specialized home care team between 2010 and 2016 were included in this study. A retrospective chart review was conducted of those who were treated with intranasal fentanyl for an AARD. RESULTS: During the study period 16 children (0.5-18.6 years) with various life-limiting conditions were treated with intranasal fentanyl for AARD. In total, 70 AARDs were analyzed. In 74% of all AARDs, a single dose of intranasal fentanyl was used. Frequent causes for an AARD were excessive secretions and acute respiratory infection. The median starting dose of intranasal fentanyl was 1.5 µg/kg body weight. Labored breathing (96%), tachypnea (79%) and related suffering (97%) improved after treatment. An adverse event occurred in one child. CONCLUSIONS: Intranasal fentanyl may be a safe and effective medication for the treatment of acute attacks of respiratory distress in children with life-limiting conditions. However, prospective studies with larger sample sizes and a control group are needed to validate these findings.