International consensus on sleep problems in pediatric palliative care: Paving the way.

OBJECTIVE: Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC), where they often contribute to disease morbidity and cause additional distress to children and adolescents and their families already facing the burden of life-threatening and life-limiting conditions. Despite the significant impact of sleep problems, clinical evidence is lacking. The application of general pediatric sleep recommendations appears insufficient to address the unique challenges of the PPC dimension in terms of disease variability, duration, comorbidities, complexity of needs, and particular features of sleep problems related to hospice care. Therefore, we initiated an international project aimed at establishing a multidisciplinary consensus. METHODS: A two-round Delphi approach was adopted to develop recommendations in the areas of Definition, Assessment/Monitoring, and Treatment. After selecting a panel of 72 worldwide experts, consensus (defined as ≥75% agreement) was reached through an online survey. RESULTS: At the end of the two voting sessions, we obtained 53 consensus recommendations based on expert opinion on sleep problems in PPC. CONCLUSIONS: This study addresses the need to personalize sleep medicine's approach to the palliative care setting and its peculiarities. It provides the first international consensus on sleep problems in PPC and highlight the urgent need for global guidance to improve sleep-related distress in this vulnerable population and their caregivers. Our findings represent a crucial milestone that will hopefully enable the development of guidelines in the near future.

Pediatric chronic pain grading-a revised classification of the severity of pediatric chronic pain.

ABSTRACT: In this study, we describe the development and validation of a revised Pediatric Chronic Pain Grading (P-CPG) for children aged 8 to 17 years that adds emotional impairment to previously used measures of pain intensity and functional impairment. Such a measure enables the assessment of chronic pain severity in different epidemiological and clinical populations, the stratification of treatment according to pain severity, and the monitoring of treatment outcome. The P-CPG was developed using a representative sample of school children with chronic pain (n = 454; Mage = 12.95, SD = 2.22). Construct validity and sensitivity to change were examined within a sample of N = 2448 children and adolescents (Mage = 12.71, SD = 2.47) comprising 3 subsamples (school n = 1562, primary care n = 129, and tertiary care n = 757) affected by chronic pain to varying extents. Results showed that P-CPG grades differed significantly among the 3 subsamples, with school children being least affected by chronic pain and tertiary care patients being most affected. As P-CPG grade increased, so did pain intensity, functional impairment, pain-related school absence, and emotional impairment. Convergent validity was demonstrated by significant positive correlations between the P-CPG and global ratings of pain severity as well as objective claims data; the latter reflects greater health care costs with increasing P-CPG scores. Sensitivity to change was supported by a significant reduction in baseline P-CPG grades 3 and 6 months after intensive interdisciplinary pain treatment in tertiary care sample. In conclusion, the P-CPG is an appropriate measure of pain severity in children and adolescents with chronic pain in clinical as well as epidemiological settings.

The Silent Epidemic-Chronic Pain and Palliative Care Needs in Children and Adolescents.

As the Section Editor-in-Chief, it is my pleasure to introduce the new section of Children dedicated to pediatric pain and palliative care [...].

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.

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.

Cost-of-illness and Economic Evaluation of Interventions in Children and Adolescents With Chronic Pain: A Systematic Review.

OBJECTIVES: Chronic pain in children and adolescents (CPCA) is widespread with an increasing prevalence. It is associated with a decreased quality of life and an increased parental work loss. Accordingly, CPCA may pose a substantial economic burden for patients, health care payers, and society. Therefore, this systematic review aimed to synthesize (1) the results of existing cost-of-illness studies (COIs) for CPCA and (2) the evidence of economic evaluations (EEs) of interventions for CPCA. METHODS: The systematic literature search was conducted in EMBASE, MEDLINE, PsycINFO, NHS EED, and HTA Database until February 2023. Title, abstract, and full-text screening were conducted by 2 researchers. Original articles reporting costs related to CPCA published in English or German were included. Study characteristics, cost components, and costs were extracted. The quality of studies was assessed using standardized tools. All costs were adjusted to 2020 purchasing power parity US dollars (PPP-USD). RESULTS: Fifteen COIs and 10 EEs were included. The mean annual direct costs of CPCA ranged from PPP-USD 603 to PPP-USD 16,271, with outpatient services accounting for the largest share. The mean annual indirect costs ranged from PPP-USD 92 to PPP-USD 12,721. All EEs reported a decrease in overall costs in treated patients. DISCUSSION: The methodology across studies was heterogeneous limiting the comparability. However, it is concluded that CPCA is associated with high overall costs, which were reduced in all EEs. From a health-economic perspective, efforts should address the prevention and early detection of CPCA followed by specialized pain treatment.

[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.

Relevance of Potential Contributing Factors for the Development and Maintenance of Irritability of Unknown Origin in Pediatric Palliative Care.

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.

Implementation and evaluation of a palliative care training unit for EMS providers.

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.

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.

Development and Validation of the Scale for Pain Self-Efficacy (SPaSE) in German and English Languages for Children and Adolescents.

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.

[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.

Applicability of Actigraphy for Assessing Sleep Behaviour in Children with Palliative Care Needs Benchmarked against the Gold Standard Polysomnography.

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.

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.

Lower Respiratory Tract Infections in Pediatric Patients with Severe Neurological Impairments: Clinical Observations and Perspectives in a Palliative Care Unit.

Pediatric palliative care (PPC) patients with a severe neurologic impairment (SNI) suffer considerable morbidity and increased mortality from lower respiratory tract infections (LRTIs). The indication and choice of antibiotic therapy for bacterial LRTIs are often challenging given the lack of evidence-based treatment recommendations for this vulnerable patient population. We conducted an observational study before the SARS-CoV-2 pandemic in an eight-bed pediatric palliative care inpatient unit. During two years of surveillance, we diagnosed and treated 33 cases of a bacterial LRTI in patients with an SNI; 5 patients were hospitalized with an LRTI more than once. Two patients died from complications due to LRTIs during hospitalization. Three patients (15%) were colonized with multidrug-resistant organisms. An initial antibiotic treatment failed in one-third of the cases; a successful therapy of the LRTI was achieved with broad-spectrum and extended-spectrum penicillins (n = 13; in combination with ß-lactamase inhibitors for n = 5 cases), cephalosporins (n = 13: n = 4 second-generation and n = 9 third-generation cephalosporins; in combination with other substances for n = 5 cases), ciprofloxacin (n = 3), and meropenem plus vancomycin (n = 2) or meropenem (n = 1). A respiratory specimen was obtained in 66.7% of cases with P. aeruginosa, E. coli, and K. pneumoniae accounting for the majority of the detected species. In most cases, there was no definite confirmation that the LRTI was caused by the species detected. The diagnostics and treatment of bacterial LRTIs in PPC patients with an SNI are challenging. The lack of controlled studies and the heterogeneity of this population often necessitate an individual approach. This lack of controlled studies may partly be compensated by a set of diagnostic and antibiotic stewardship criteria.

A randomized controlled trial on long-term effectiveness of a psychosocial aftercare program following paediatric chronic pain treatment: Who benefits the most?

BACKGROUND: For paediatric chronic pain patients, intensive interdisciplinary pain treatment (IIPT) is a well-established treatment. The treatment's short-term effectiveness can be improved by an additive psychosocial aftercare (PAC). However, neither the program's long-term effectiveness nor the patients in particular need have been investigated yet. METHODS: This study aimed at determining the long-term effects of PAC and detecting predictors of treatment outcome within a multicentre randomized controlled trial measured at five time points up to 12 months after discharge. At inpatient admission to IIPT, patients (N = 419, 14.3 years of age, 72.3% female) were randomly assigned to intervention or control group. After IIPT discharge, the intervention group received PAC, whereas the control group received treatment as usual (TAU). Patient-reported outcomes included pain and emotional characteristics. Clinicians assessed potential psychosocial risk factors and their prognosis of treatment outcome. Statistical analyses included mixed-models and univariable logistic regressions. RESULTS: Data at the 12-month follow-up (n = 288) showed a significant benefit of PAC compared with TAU; the majority (59.0%) of patients in the PAC-group reported no chronic pain compared to 29.2% of TAU-patients (p < 0.001). Patients with a single parent specifically benefited from PAC compared to TAU. Clinicians were able to make a reliable prognosis of treatment outcome, but did not successfully predict which patients would benefit the most from PAC. CONCLUSIONS: Study results suggest that PAC is highly effective irrespective of patient characteristics, but particularly for patients with single parents. Its broad implementation could help to improve the long-term outcomes of youth with severely disabling chronic pain. SIGNIFICANCE: A psychosocial aftercare following paediatric IIPT leads to significantly better pain and emotional outcomes compared to treatment as usual up to 12 months after discharge, especially for patients with single parents.

Special Issue: Back Pain in Children and Adolescents.

"What is the big deal about back pain in children and adolescents? Doesn't it just go away if you give it time and rest?" [...].

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.