Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions
child; Adolescent; Questionnaires; article; controlled study; female; human; male; palliative therapy; clinical article; caregiver; school child; human experiment; prospective study; adolescent; wakefulness; therapy; decision making; drug therapy; chronic disease; questionnaire; special situation for pharmacovigilance; actimetry; diagnostic procedure; protocol; sleep; actigraph; sleep efficiency; sleep time; stage 1 sleep; wake after sleep onset
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.
Kubek LA; Claus B; Zernikow B; Wager J
BMC Palliative Care
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-024-01394-7" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01394-7</a>
Relevance of Potential Contributing Factors for the Development and Maintenance of Irritability of Unknown Origin in Pediatric Palliative Care
child; diagnosis; article; human; major clinical study; dystonia; palliative therapy; pain; neurologic disease; adolescent; infant; social aspect; irritability; Krippendorff's alpha coefficient
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.
Kubek LA; Angenendt N; Hasan C; Zernikow B; Wager J
Children
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children10111726" target="_blank" rel="noreferrer noopener">10.3390/children10111726</a>
Expert Survey on Coverage and Characteristics of Pediatric Palliative Care in Europe - A Focus on Home Care
Child; Europe; Health Care Surveys; Health care quality; access; and evaluation; Home Care Services; Home Care Services/sn [Statistics & Numerical Data]; Home care services; Humans; Palliative Care; Palliative Care/sn [Statistics & Numerical Data]; Palliative care; Pediatrics; Pediatrics/sn [Statistics & Numerical Data]
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. Copyright © 2022. The Author(s).
Wager J; Kubek LA; Brenner M; Calmanti S; Doyle C; Lovgren M; Kreicbergs U; Kremer L; Le Moine P; Robert G; Schuiling-Otten M; Schroder-Back P; Verhagen E; Zernikow B
BMC Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-022-01078-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-01078-0</a>
Potential contributing factors for irritability of unknown origin in pediatric palliative care
Children; Irritability; Palliative Care; Pediatrics
BACKGROUND: 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. MEASURES: A structured IUO diagnostic and therapeutic approach developed in a specialized inpatient pediatric palliative care facility for identifying IUO's potential contributing factors (PCFs). INTERVENTIONS: 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. OUTCOME(S): Altogether, 136 PCFs were identified (average 6.18 per child) with pain and psycho-social problems being the most common. 222 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< .01). CONCLUSION(S): 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. Published by Elsevier Inc.
Dreier LA; Angenendt N; Hasan C; Zernikow B; Wager J
Journal of Pain and Symptom Management
2022
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.04.168" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.04.168</a>
Multidrug-resistant organisms in paediatric palliative care patients - Prevalence, risk factors and the impact of a liberal hygiene concept
Multidrug resistance; Nosocomial infection; Palliative care; Pediatrics; Surveillance
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. Method(s): 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. Result(s): 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(s): 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. Copyright © 2022 The Authors. Journal of Paediatrics and Child Health published by John Wiley & Sons Australia, Ltd on behalf of Paediatrics and Child Health Division (The Royal Australasian College of Physicians).
Schmidt P;Hasan C;Mauritz MD;Simon A;Stening K;Hartenstein-Pinter A;Zernikow B;Wager J
Journal of Paediatrics and Child Health
2022
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<a href="http://doi.org/10.1111/jpc.15980" target="_blank" rel="noreferrer noopener">10.1111/jpc.15980</a>
Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families-A Multicenter Prospective Longitudinal Study
pediatric; prospective study; palliative care; multicenter study; validation; factor analysis; patient-centered outcome measures
Outcome measurement in pediatric palliative care (PPC) is receiving increasing attention. The FACETS-OF-PPC, a multidimensional outcome measure for children with severe neurological impairment, has been developed and partly validated. This study aimed to conclude the validity of the German version of the FACETS-OF-PPC. A multicenter prospective study with two points of measurement has been conducted, employing confirmatory factor analyses, reliability analyses, and analyses to evaluate the tool's sensitivity to change. Overall, 25 inpatient and outpatient teams throughout Germany recruited N = 227 parents of affected children and N = 238 professional caregivers. Participants filled out the FACETS-OF-PPC on the admission of a child to a palliative care service and at discharge from inpatient settings or two months after admission to outpatient services. The analyses revealed the questionnaire needing further adaption. Now, 17 of the original 34 items contribute to the construction of the questionnaire scales. The other items remain part of the questionnaire and may be evaluated descriptively. Furthermore, the FACETS-OF-PPC has moderate to appropriate internal consistency and is sensitive to change. Creating an outcome measure with good psychometric properties for the vulnerable population of children with severe neurological impairment appears extremely difficult. Considering these challenges, the FACETS-OF-PPC demonstrates adequate psychometric properties.
Pelke S; Wager J; Claus BB; Stening K; Zernikow B; Reuther M
Children
2021
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<a href="http://doi.org/10.3390/children8100905" target="_blank" rel="noreferrer noopener">10.3390/children8100905</a>
Electronic Health Records in Specialized Pediatric Palliative Care: A Qualitative Needs Assessment among Professionals Experienced and Inexperienced in Electronic Documentation
pediatrics; palliative care; demand analysis; electronic health records; usability
BACKGROUND: Currently, to the best of our knowledge, no findings exist concerning the needs of professionals in specialized pediatric palliative care (PPC) regarding electronic health records (EHRs). Several studies have highlighted benefits concerning the use of EHRs in pediatrics. However, usability is strongly affected by the degree of adaptivity to the context of application. The aim of this study is to examine the needs of professionals concerning an EHR in the specialized PPC inpatient and outpatient settings. METHODS: A qualitative research design was chosen to address the complex aspects of user demands. Focus group interviews and semi-structured one-on-one interviews were conducted with PPC professionals. N = 23 participants from inpatient and N = 11 participants from outpatient settings of specialized PPC representing various professions took part in the study. RESULTS: The findings could be grouped into four categories: (1) attitude towards the current methods of documentation, (2) attitude towards electronic documentation in general, (3) general requirements for an EHR, and (4) content requirements for an EHR. CONCLUSIONS: Professionals in specialized PPC expect and experience many benefits of using electronic documentation. Their requirements for an EHR for inpatient and outpatient settings of PPC are largely consistent with EHRs for pediatrics. However, individual specifications and adaptations are necessary for this particular setting.
Meyer D; Kernebeck S; Busse TS; Ehlers J; Wager J; Zernikow B; Dreier LA
Children
2021
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<a href="http://doi.org/10.3390/children8030249" target="_blank" rel="noreferrer noopener">10.3390/children8030249</a>
The effect of multidrug-resistant organisms on social participation and quality of life in children with life-limiting conditions
Child; Child Preschool; Cross Infection/prevention & control; Cross-Sectional Studies; Drug Resistance Multiple; Female; Hospital Units; Humans; Hygiene; Infant; Infection Control/organization & administration; Inservice Training; Interviews as Topic; Male; Nursing Assessment; Paediatrics; Palliative care; Palliative Care; Parents; Patient Isolation; Patient Safety; Quality of Life; Social Participation; Stereotyping; Surveys and Questionnaires; Terminally Ill
BACKGROUND: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room or ward. However, such isolation prevents social participation, which may reduce the child's quality of life (QoL). To overcome this challenge of conflicting interests on a paediatric palliative care inpatient unit, a hygiene concept for patients colonised with MDRO, called PALLINI, was implemented. PALLINI advises that, instead of isolating the affected children, strict barrier nursing should be used. AIM: To identify the impact of a complex hygiene concept on children's and parents' QoL and social participation. METHODS: Cross-sectional mixed-methods research approach, comprising semi-structured interviews with parents and staff members, and a QoL-questionnaire focusing on the child which was completed by parents. FINDINGS: In paediatric patients with life-limiting conditions who have MDRO colonisation, using a complex hygiene protocol resulted in both benefits and barriers to social participation. However, the child's QoL did not appear to be affected. CONCLUSION: All staff members and families have to be familiar with the hygiene concept and the concept has to be self-explanatory and easy to apply.
Schmidt P; Hartenstein-Pinter A; Hasan C; Stening K; Zernikow B; Wager J
International Journal of Palliative Nursing
2021
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<a href="http://doi.org/10.12968/ijpn.2021.27.1.10" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.1.10</a>
Insights into the Frequency and Distinguishing Features of Sleep Disorders in Pediatric Palliative Care Incorporating a Systematic Sleep Protocol
pediatrics; palliative care; sleep; neurobehavioral manifestations
Currently, no concrete figures on sleep disorders and sleep characteristics in children and adolescents with life-limiting conditions (LLC) and severe neurological impairment (SNI) based on pediatric palliative care professionals' assessment and following an official classification system such as the International Classification of Sleep Disorders (ICSD-3) exist. The ICSD-3 sleep disorders of inpatient children and adolescents with LLC and SNI (N = 70) were assessed by professionals using a recording sheet (two-year recruitment period). A systematic sleep protocol was applied to identify patients' sleep characteristics. Of these patients, 45.6% had sleep disorders, with the majority of them experiencing two different ones. Overall, the most frequently identified disorders were Chronic Insomnia and Circadian Sleep-Wake Disorder. Patients experiencing Chronic Insomnia showed more sleep phases during the daytime and more waking phases at nighttime than those unaffected. Patients with and without a Circadian Sleep-Wake Disorder additionally differed in the length of sleep phases during the daytime. Rapid changes between wakefulness and sleep were specifically characteristic of Hypersomnia. The study provides important insights into the prevalence and characteristics of individual ICSD-3 sleep disorders in pediatric palliative care. The findings may contribute to a targeted and efficient diagnosis and therapy of distressing sleep problems in seriously ill patients.
Dreier LA; Zernikow B; Stening K; Wager J
Children (Basel)
2021
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<a href="http://doi.org/10.3390/children8010054" target="_blank" rel="noreferrer noopener">10.3390/children8010054</a>
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
pediatric; prospective study; multicenter study; outcome measure; Palliative care; factor analysis; patient-centered outcome research; questionnaire design
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.
Pelke S; Wager J; Claus BB; Zernikow B; Reuther M
Palliative Medicine
2020
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<a href="http://doi.org/10.1177/0269216320975626" target="_blank" rel="noreferrer noopener">10.1177/0269216320975626</a>
Intranasal fentanyl for respiratory distress in children and adolescents
Palliative Care; Infant; Preschool; Adolescence; Child; Descriptive Statistics; Human; Administration; Record Review; Pediatric Care; Fentanyl Administration and Dosage; Fentanyl Adverse Effects; Fentanyl Therapeutic Use; Treatment Outcomes; Acute Drug Therapy; Intranasal; Respiratory Distress Syndrome
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.
Pieper L; Wager J; Zernikow B
BMC Palliative Care
2018
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<a href="http://doi.org/10.1186/s12904-018-0361-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0361-x</a>
Pediatric Patients Receiving Specialized Palliative Home Care According to German Law: A Prospective Multicenter Cohort Study
In Germany, every child with a life-limiting condition suffering from symptoms that cannot sufficiently be controlled is eligible by law for specialized pediatric palliative home care (SPPHC). It is the aim of this study to describe the demographic and clinical characteristics of children referred to SPPHC and to compare patients with cancer and non-cancer conditions. The prospective multicenter study includes data on 75 children (median age 7.7 years, 50.7% male). The majority had non-cancer conditions (72%). The most common symptoms were cognitive impairment, somatic pain, impairment in communication or swallowing difficulties. Swallowing difficulties, seizures, and spasticity occurred significantly more often in non-cancer patients (p < 0.01). Cancer patients received antiemetics significantly more often (permanent and on demand) than non-cancer patients (p < 0.01). Significantly more non-cancer patients had some type of feeding tube (57.3%) or received oxygen (33.3%) (p < 0.01). Central venous catheters had been fitted in 20% of the patients, mostly in cancer patients (p < 0.001). Tracheostomy tubes (9.3%) or ventilation (14.7%) were only used in non-cancer patients. In conclusion, patients referred to SPPHC are a diverse cohort with complex conditions including a large range of neurologically originating symptoms. The care of pediatric palliative care patients with cancer is different to the care of non-cancer patients.
Nolte-Buchholtz S; Zernikow B; Wager J
Children (Basel).
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children5060066" target="_blank" rel="noreferrer noopener">10.3390/children5060066</a>
Efficacy of adding interoceptive exposure to intensive interdisciplinary treatment for adolescents with chronic pain: A randomized controlled trial
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, school absence) and emotional characteristics (anxiety, catastrophizing) when implemented as an adjunctive treatment in the context of intensive interdisciplinary pain treatment (IIPT) for pediatric chronic pain patients. N=126 adolescents, aged 11-17 years, who were receiving standard IIPT 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 three 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 (e.g., total score (range 0-60; IE/RT): admission M=23.5/24.9; discharge M=16.0/19.7; p<.001, engp=.27) and mainly large reductions in pain characteristics. There were no greater decreases in the IE-group (p>.1). The exploratory analyses revealed that the patients with high fear of pain before treatment (p<.05, engp>.03) and the patients with abdominal pain (p<.04, engp>.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 pediatric chronic pain patients, but patients with high fear of pain before treatment and with abdominal pain strongly benefit from this intervention. TRIAL REGISTRATION: This randomized controlled clinical trial was registered in the "German Clinical Trials Register" (trial number: DRKS00010030; name: Randomisiert kontrollierte Studie zur Wirksamkeit der Schmerzprovokation bei Jugendlichen mit chronischen Schmerzstorungen).
Flack F; Stahlschmidt L; Dobe M; Hirschfeld G; Kesper A; Michalak J; Wager J; Zernikow B
Pain
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/j.pain.0000000000001321" target="_blank" rel="noreferrer noopener">10.1097/j.pain.0000000000001321</a>
The Unfavorable Alliance of Pain and Poor Sleep in Children with Life-Limiting Conditions and Severe Psychomotor Impairment
A high prevalence of sleep problems exists in children and adolescents with life-limiting conditions (LLC) and severe psychomotor impairment (SPMI). This study aimed to compare the impacts of various child-related (pain, epilepsy, repositioning, medical care) and environment-related (light, noise, TV/radio, open door) factors on sleep in this vulnerable population. Data were obtained through the “Sleep Questionnaire for Children with Severe Psychomotor Impairment” (SNAKE) by proxy assessment. n = 212 children (mean age: 10.4 years) were included in the analyses. Logistic and linear regression models were used to compare child- and environment-related factors against the global rating of children’s sleep quality, five SNAKE scales, children’s sleep duration, and sleep efficacy. Pain increased the risk of sleeping poorly four-fold (OR (odds ratio) = 4.13; 95% CI (confidence interval): 1.87(-)9.13) and predicted four sleep problems as assessed by the SNAKE. Children who needed to reposition during the night were at three times greater risk of sleeping poorly (OR = 3.08; 95% CI: 1.42(-)6.69). Three of the five SNAKE scales were predicted through nocturnal repositioning. Repositioning and epilepsy predicted a reduced sleep duration and low sleep efficacy. None of the environment-related factors exhibited statistically significant results. This study emphasizes the urgent need for reliable pain detection in the context of sleep disturbances in severely ill children.
Dreier LA; Wager J; Blankenburg M; Zernikow B
Children (Basel).
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children5070082" target="_blank" rel="noreferrer noopener">10.3390/children5070082</a>
Inpatient-based intensive interdisciplinary pain treatment for highly impaired children with severe chronic pain: randomized controlled trial of efficacy and economic effects
adolescent; Child; Female; Humans; Male; Pain Management; Pain Measurement; Follow-Up Studies; Treatment Outcome; Chronic Pain; Inpatients; Depression; Catastrophization; Anxiety; Disability Evaluation
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.
2014-01
Hechler T; Ruhe A-K; Schmidt P; Hirsch J; Wager J; Dobe M; Krummenauer F; Zernikow B
Pain
2014
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Journal Article
<a href="http://doi.org/10.1016/j.pain.2013.09.015" target="_blank" rel="noreferrer">10.1016/j.pain.2013.09.015</a>
Chronic pain treatment in children and adolescents: less is good, more is sometimes better
Interdisciplinary; Intensive inpatient treatment; Outpatient treatment; Paediatric chronic pain
In children with chronic pain, interdisciplinary outpatient and intensive inpatient treatment has been shown to improve pain intensity and disability. However, there are few systematic comparisons of outcomes of the two treatments. The present naturalistic study aimed to compare the clinical presentation and achieved changes at return in three outcome domains (pain intensity, disability, school absence) between a) outpatients vs. inpatients and b) patients who declined intensive inpatient treatment and completed outpatient treatment instead (decliners) vs. those who completed inpatient treatment (completers). PMID: 25308551
2014-10
Hechler T; Wager J; Zernikow B
Bmc Pediatrics
2014
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Journal Article
<a href="http://doi.org/10.1186/1471-2431-14-262" target="_blank" rel="noreferrer">10.1186/1471-2431-14-262</a>
It's All About Communication: A Mixed-Methods Approach to Collaboration Between Volunteers and Staff in Pediatric Palliative Care
Communication; cooperation; Palliative Care; patient care team; Pediatrics; volunteers
BACKGROUND: Multidisciplinary teamwork is considered central to pediatric palliative care. Although different studies state that volunteers play an essential role in palliative care, little is known about the collaboration between volunteers and staff. AIM: This study aims to explore and compare the perspectives of volunteers and staff regarding collaboration in a pediatric palliative care unit. DESIGN: A mixed-methods approach was chosen to appropriately reflect the complex aspects of collaboration. SETTING/PARTICIPANTS: Both face-to-face interviews with staff who work together with volunteers and a group discussion with all volunteers were conducted. These were supplemented by 2 questionnaires designed for this study that examined participants' characteristics and their estimation of what information volunteers need before they meet a patient. RESULTS: Nine staff members and 7 volunteers participated in this study. Their ideas of collaboration could be grouped into 3 categories: (i) factual level of collaboration, (ii) relationship level of collaboration, and (iii) overall appraisal of collaboration (suggestions for improvement). CONCLUSION: Communication can be considered a key factor in successful collaboration between volunteers and staff. Because many patients in pediatric palliative care units are not able to communicate verbally, good information flow between volunteers and staff is crucial for ensuring quality patient care. Moreover, communication is the key to establishing a team philosophy by clarifying roles and building relationships between volunteers and staff.
2018-01
Meyer D; Schmidt P; Zernikow B; Wager J
American Journal Of Hospice & Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049909117751419" target="_blank" rel="noreferrer">10.1177/1049909117751419</a>
Life-Limiting Conditions at a University Pediatric Tertiary Care Center: A Cross-Sectional Study
Chronic disease; end-of-life care; Hospitals; Life-limiting conditions; Palliative Care; Pediatrics
BACKGROUND: The increasing number of children with life-threatening and life-limiting conditions requires an individualized approach and additional supportive care in hospitals. However, these patients' characteristics and their prevalence in a pediatric tertiary hospital setting have not been systematically analyzed. OBJECTIVE: This study aimed to determine the proportion of hospitalized children who are receiving care for life-threatening diseases with feasible curative treatments and for life-limiting diseases (LLDs) with inevitable premature death as opposed to care for acute or chronic diseases; additionally, it sought to compare patient characteristics, clinical features, and symptoms within these subgroups. DESIGN/SETTING/SUBJECTS: A cross-sectional survey of 208 patients was conducted at a large tertiary pediatric care center through standardized interviews with the responsible medical teams. Patient subgroups were defined as those with acute, chronic, life-threatening, or LLDs. RESULTS: The comparisons of patient subgroups showed distinct differences and revealed that nearly half of all inpatients suffer from life-threatening (20%) or LLDs (27%), with a high proportion of rare diseases (82%). They experienced a high burden of symptoms in all parameters of clinical features, including high demand for medications and nursing care. CONCLUSION: A substantial proportion of pediatric inpatients suffered from life-threatening or LLDs, as well as rare diseases, indicating a high burden of symptoms and a high need for additional care. The results suggest a substantial need to implement pediatric palliative care structures in tertiary care centers for patients in critical and terminal conditions.
Bosch A; Wager J; Zernikow B; Thalemann R; Frenzel H; Krude H; Reindl T
Journal Of Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2017.0020" target="_blank" rel="noreferrer">10.1089/jpm.2017.0020</a>
Clinical And Economic Long-term Treatment Outcome Of Children And Adolescents With Disabling Chronic Pain
Financial Burden; Health Care Utilization; Intensive Interdisciplinary Pain Treatment; Long-term Outcome; Pediatric 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.
Zernikow B; Ruhe AK; Stahlschmidt L; Schmidt P; Staratzke T; Frosch M; Wager J
Pain Medicine
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1093/pm/pnx067
Specialized Rehabilitation Programs For Children And Adolescents With Severe Disabling Chronic Pain: Indications, Treatment And Outcomes
Chronic Pain; Effectiveness; Indication; Pediatric; Rehabilitation Programs; Specialized Pain Treatment
Children and adolescents with highly disabling chronic pain of high intensity and frequency are admitted to specialized pain rehabilitation programs. Some barriers to obtaining this specialized care include a lack of availability of treatment centers, a perceived social stigma and individual barriers such as socioeconomic status. Specialized rehabilitation programs for severe disabling chronic pain worldwide have similarities regarding admission criteria, structure and therapeutic orientation. They differ, however, regarding their exclusion criteria and program descriptions. The short- and long-term effectiveness of some rehabilitation programs is well documented. All countries should promote the establishment of future pediatric pain centers to improve the health care of children and adolescents suffering from severe chronic pain. Standardized reporting guidelines should be developed to describe treatments and outcomes to enable comparability across treatment centers.
Stahlschmidt L; Zernikow B; Wager J
Children (basel)
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.3390/children3040033
Household Income Determines Access To Specialized Pediatric Chronic Pain Treatment In Germany.
Socioeconomic Status (ses); Pediatrics; Chronic Pain; Health Care Delivery; Income; Inequality; Specialized Treatment
Background
Families with lower socioeconomic status (SES) often face problems with gaining access to health care services. Information is scarce on the relationship between SES and health care delivery for children suffering from chronic pain.
Methods
Families presenting to a specialized pain center (N = 1,001) provided information on ‘household income, ‘parental education’ and ‘occupation’ to aid the evaluation of their SES. To assess whether the SES of the clinical sample is representative of the general population, it was compared to data from a community sample (N = 14,558). For the clinical sample, travel distance to the clinic was described in relation to the 75 % catchment area. Multiple logistic regression was used to analyze the association between SES and the journey from outside the catchment area.
Results
The SES was significantly higher in the clinical sample than in the community sample. Within the clinical sample, the distance traveled to the pain center increased with increasing SES. The 75 % catchment area was 143 miles for families with the highest SES and 78 miles for the lowest SES. ‘Household income’ predicted travel distance (OR 1.32 (1.12–1.56)). Education and occupational status were not significant predictors of travel from outside the catchment area.
Conclusions
In Germany, specialized care for children with chronic pain is subject to disparities in access. Future activities should focus on identifying barriers to access and seeking to prevent inequalities in specialized pediatric health care delivery. Increasing the number of specialized treatment facilities could improve access to specialized pediatric pain treatment, regardless of socioeconomic determinants.
Ruhe AK; Wager J; Hirschfeld G; Zernikow B
Bmc Health Services Research
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
doi: 10.1186/s12913-016-1403-9