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
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doi: 10.1186/s12913-016-1403-9
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
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10.3390/children3040033
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
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10.1093/pm/pnx067
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
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<a href="http://doi.org/10.1089/jpm.2017.0020" target="_blank" rel="noreferrer">10.1089/jpm.2017.0020</a>
Use of patient-controlled analgesia for pain control in dying children
Analgesia Patient-Controlled; Analgesics Opioid/tu [Therapeutic Use]; Morphine/tu [Therapeutic Use]; Neoplasms/pp [Physiopathology]; Pain Intractable/dt [Drug Therapy]; 0 (Analgesics Opioid); 76I7G6D29C (Morphine); adolescent; Analgesics Opioid/ad [Administration & Dosage]; Child; Child Preschool; Female; Humans; Male; Morphine/ad [Administration & Dosage]; Pain Measurement; Palliative Care; retrospective studies; Terminal Care; Treatment Outcome
BACKGROUND: In the last week of life, the daily opioid dose in children is highly variable, making the use of patient-controlled analgesia (PCA) a useful therapy option. Scientific data on the use of PCA in paediatric palliative care are rare. MATERIALS AND METHODS: Retrospective chart review over a 7-year period (Jan 1998-Jan 2005) of PCA treated children dying of cancer was used. RESULTS: Eight children were on PCA for a median duration of 9 days (range, 1 to 50). The daily median intravenous morphine equivalent dose referenced to body weight increased significantly when PCA was initiated and during the last week of life. In the last week of life, the median daily number of delivered and undelivered bolus requests ranged from 7.5-21 and 0-4.5, respectively. To meet children's individual needs, 39 PCA parametre changes on 22 opportunities were performed. Median daily mean pain scores remained low (range, 0-3; numerical rating scale 0-10) throughout the period. CONCLUSION: PCA proved an ideal, dependable and feasible mode of analgesic administration for the individual titration of dose to effect.
Schiessl C; Gravou C; Zernikow B; Sittl R; Griessinger N
Supportive Care In Cancer
2008
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<a href="http://doi.org/10.1007/s00520-008-0408-2" target="_blank" rel="noreferrer">10.1007/s00520-008-0408-2</a>
Palliative care in Poland -- the Warsaw hospice for children
Child; Patient Discharge; Patient Admission; Poland; Editorial Board Reviewed; Expert Peer Reviewed; Hospice palliative care; Nursing Journals; Online/Print; Palliative Care/ei [Ethical Issues]; Palliative Care/td [Trends]; Pediatric Care; Pediatric Care/td [Trends]; Peer Reviewed Journals; UK & Ireland Journals.
Stefan Friedrichsdorf, Sandra Brun, Boris Zernikow and Tomasz Dangel report on epidemiological data and describe Warsaw's paediatric hospice home care programme.
2006
Friedrichsdorf SJ; Brun S; Zernikow B; Dangel T
European Journal Of Palliative Care
2006
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Journal Article
Status quo of palliative care in pediatric oncology-a nationwide survey in Germany
Child; Female; Humans; infant; Male; Data Collection; Treatment Outcome; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Physician's Practice Patterns/statistics & numerical data; Pediatrics/methods/trends; Newborn; location of death; Germany/epidemiology; Home Care Services/statistics & numerical data/trends; Medical Oncology/methods/trends; Neoplasms/mortality/therapy; Palliative Care/methods/statistics & numerical data/trends
Cancer is the leading cause of death among the pediatric population with life-limiting conditions. The provision of palliative care at home and on the children's cancer unit has not been surveyed previously on a national scale. A survey of 71 (of 73) German pediatric oncology units (response rate 97%) provided information on the timing of breaking bad news, place of death, orchestrating palliative care at home and on the ward, integration of services and staff, funding of palliative care, bereavement services for siblings and parents, educational needs, level of self-satisfaction, and designated integrated palliative care services for children with cancer. More than 60% of children with malignancies died as inpatients in 2000, fewer than 40% at home. Twenty-nine pediatric cancer departments were able to provide comprehensive medical palliative home care, and nine units incorporate a designated palliative care team or person. Only half of the departments provide bereavement services for siblings. Many health professionals working on pediatric cancer units in Germany provide palliative home care in their free time without any payment. They predominantly use their private vehicles and often are unclear about the legal background and insurance arrangements covering their provision of care. The data suggest an important need for education about palliative and end-of-life care. The majority of children dying from cancer in Germany do not have access to comprehensive palliative care services at home. Our study highlights the necessity of incorporating the palliative paradigm into the care of children with cancer. Barriers to its implementation must be identified and overcome.
Friedrichsdorf SJ; Menke A; Brun S; Wamsler C; Zernikow B
Journal Of Pain And Symptom Management
2005
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2004.05.004" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2004.05.004</a>
Use of patient-controlled analgesia for pain control in dying children
In the last week of life, the daily opioid dose in children is highly variable, making the use of patient-controlled analgesia (PCA) a useful therapy option. Scientific data on the use of PCA in paediatric palliative care are rare.
2008
Schiessl C; Gravou C; Zernikow B; Sittl R; Griessinger N
Supportive Care In Cancer
2008
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).
Journal Article
<a href="http://doi.org/10.1007/s00520-008-0408-2" target="_blank" rel="noreferrer">10.1007/s00520-008-0408-2</a>
IMPaCCT: standards of paediatric palliative care.
The needs of children and families living with life-limiting and life-threatening illness are similar across all European countries. Meeting these needs requires a comprehensive and integrative approach, with the input of a skilled multidisciplinary paediatric team. It is essential that the core standards for paediatric palliative care recommended in this document of the European Association for Palliative Care (EAPC) now be implemented across Europe.
2008
Craig F; Abu-Saad HH; Benini F; Kuttner L; Wood C; Feraris PC; Zernikow B
Schmerz (berlin, Germany)
2008
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Journal Article
<a href="http://doi.org/10.1007/s00482-008-0690-4" target="_blank" rel="noreferrer">10.1007/s00482-008-0690-4</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
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<a href="http://doi.org/10.1177/1049909117751419" target="_blank" rel="noreferrer">10.1177/1049909117751419</a>
Did Increased Availability of Pediatric Palliative Care Lead to Improved Palliative Care Outcomes in Children with Cancer?
2013-09
Schmidt P; Otto M; Hechler T; Metzing S; Wolfe J; Zernikow B
Journal Of Palliative Medicine
2013
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Journal Article
<a href="http://doi.org/10.1089/jpm.2013.0014" target="_blank" rel="noreferrer">10.1089/jpm.2013.0014</a>
Snake: the development and validation of a questionnaire on sleep disturbances in children with severe psychomotor impairment
Children W/SNI
OBJECTIVE: Sleep disturbance and daytime restlessness are present in 50% to 80% of children with severe psychomotor impairment due to neurologic or other complex diseases. Although these issues severely impair the quality of life of the children and their families, they are not well addressed or managed by professionals. The lack of validated assessment tools prevents further research and the development of adequate therapies. Our aim is to develop and validate a sleep questionnaire for these children that could be used both for clinical management and systematic research. METHODS: The sleep questionnaire for children with severe psychomotor impairment (Schlaffragebogen fur Kinder mit Neurologischen und Anderen Komplexen Erkrankungen, SNAKE) is based on expert opinion and consultation with parents. The psychometric quality of the questionnaire was assessed in a sample of 224 children with severe psychomotor impairment. RESULTS: Confirmative factor analysis showed that SNAKE comprises of five factors (based on ICSD-2). Fit indices, analysis of item characteristics and convergent validity (coherence with measures of sleep [i.e., sleep efficiency]) and correlation with selected subscales of the Sleep Disturbance Scale for Children (SDSC) were good. Re-test analysis (n=62) depicted high stability and good replication of validity. CONCLUSIONS: SNAKE is a reliable and valid tool for the diagnosis of sleep disturbances in children with severe psychomotor impairment. The SNAKE questionnaire is the first tool that addresses the specific relationship between sleep disturbance and severe disability in children.
Blankenburg M; Tietze AL; Hechler T; Hirschfeld G; Michel E; Koh M; Zernikow B
Sleep Medicine
2013
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Journal Article
<a href="http://doi.org/10.1016/j.sleep.2012.12.008" target="_blank" rel="noreferrer">10.1016/j.sleep.2012.12.008</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>
Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Young Adult; Adult; Parents; Questionnaires; caregivers; Sleep Disorders; Health Status; Psychomotor Disorders; quality of life; Preschool; Newborn
AIM: In childhood, severe psychomotor impairment (SPMI) is associated with profound sleep disturbances. With the help of newly developed and validated measures, we systematically assessed how much a child's sleep disturbance affects parental sleep and quality of life (QoL) in this specific patient group. METHOD: Parents and their children with SPMI were enrolled from three outpatient centers and one in-patient center in Germany. We administered a set of questionnaires to the parents that addressed their child's sleep quality, the sleep disturbance-related parental burden, and the impact on both parental sleep and QoL. Additional questionnaires were used to gather data describing our sample group to allow for comparison with published norms. RESULTS: Parents of 214 children, adolescents, and young adults with SPMI (114 males, 100 females; mean age 10y 5mo, SD 5y 6mo, range 0.1-25y) responded to the questionnaire set (response rate of 66%). We found severe impairment of parental health status and QoL. More than 50% of the parents suffered from a sleep disorder (e.g. prolonged sleep latency, shortened sleep duration). Sleep disturbances in children, adolescents, and young adults correlated strongly with parental sleep disturbances, parental impairment of physical and mental functioning, parental social functioning, and parental working ability. INTERPRETATION: Sleep-related difficulties have a significant sociomedical impact on the parents of children, adolescents, and young adults with complex neurological diseases. Typically, parents are severely affected in various aspects of daily living. There is a need for novel diagnostic and therapeutic approaches that match the complex sociomedical needs of these patients and their families.
2014-12
Tietze AL; Zernikow B; Michel E; Blankenburg M
Developmental Medicine And Child Neurology
2014
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Journal Article
<a href="http://doi.org/10.1111/dmcn.12530" target="_blank" rel="noreferrer">10.1111/dmcn.12530</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>
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
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<a href="http://doi.org/10.3390/children5070082" target="_blank" rel="noreferrer noopener">10.3390/children5070082</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
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<a href="http://doi.org/10.1097/j.pain.0000000000001321" target="_blank" rel="noreferrer noopener">10.1097/j.pain.0000000000001321</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
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<a href="http://doi.org/10.3390/children5060066" target="_blank" rel="noreferrer noopener">10.3390/children5060066</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>
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
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/10.1177/0269216320975626" target="_blank" rel="noreferrer noopener">10.1177/0269216320975626</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
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/children8010054" target="_blank" rel="noreferrer noopener">10.3390/children8010054</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
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/10.12968/ijpn.2021.27.1.10" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.1.10</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
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/children8030249" target="_blank" rel="noreferrer noopener">10.3390/children8030249</a>
Needs Assessment for the Development of an Electronic Cross-Facility Health Record (ECHR) for Pediatric Palliative Care: A Design Thinking Approach
pediatrics; palliative care; innovation; palliative medicine; digital health; design thinking; user-centered design; health information technology; process model
BACKGROUND: Pediatric palliative care (PPC) is characterized by years of multisectoral and multi-professional care. Sharing information between PPC professionals is, therefore, essential for quality care. The evidence shows that electronic cross-facility health records (ECHRs) provide useful support in this context. To our knowledge, no ECHRs have been developed through a user-centered approach for this specific setting in Germany. METHODS: Guided by design thinking, first, qualitative interviews were conducted to assess the needs of PPC professionals. Second, the elicited needs were specified in focus groups (FGs). Based on the needs stated in the interviews, prototypes of the ECHR were developed and discussed in the FGs. The indicated needs were supplemented and specified in an iterative process. The prototypes were further adapted according to these results. The unified theory of acceptance and use of technology was the basic model in the evaluation of needs. RESULTS: Across seven main categories, past and current medication, emergency view, and messaging functions were identified as the participants' desired core components of an ECHR. Utilizing design thinking facilitated the explicit articulation of user needs. CONCLUSIONS: Developing an ECHR with the content identified would allow for real-time data during emergencies, tracking what other PPC professionals have done, and making the applied treatments visible to others. This would offer a broader picture of the complex conditions common to PPC.
Busse TS; Jux C; Kernebeck S; Dreier LA; Meyer D; Zenz D; Zernikow B; Ehlers JP
Children
2021
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/children8070602" target="_blank" rel="noreferrer noopener">10.3390/children8070602</a>
Participatory Design of an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Study with Nurses and Physicians
palliative care; paediatrics; electronic health records; usability; electronic medical records; participatory design; technology acceptance; user involvement
BACKGROUND: Electronic medical records (EMRs) offer a promising approach to mapping and documenting the complex information gathered in paediatric palliative care (PPC). However, if they are not well developed, poorly implemented EMRs have unintended consequences that may cause harm to patients. One approach to preventing such harm is the involvement of users in the participatory design to ensure user acceptance and patient safety. Therefore, the aim of this study is to evaluate the acceptance of a novel patient chart module (PCM) as part of an EMR from the perspective of potential users in PPC and to involve these professionals in the design process. METHODS: A qualitative observational study with N = 16 PPC professionals (n = 10 nurses, n = 6 physicians) was conducted, including concurrent think aloud (CTA) and semi-structured interviews. A structured content analysis based on the Unified Theory of Acceptance and Use of Technology was applied. RESULTS: The results can be summarized in terms of general observations, performance expectancy, effort expectancy and facilitating conditions, all of which are likely to have a positive influence on acceptance of the PCM from the user perspective in the context of PPC. CONCLUSIONS: The involvement of users in the development of EMRs is important for meeting the requirements in PPC. Further software adaptations are necessary to implement these requirements.
Kernebeck S; Busse TS; Jux C; Meyer D; Dreier LA; Zenz D; Zernikow B; Ehlers JP
Children
2021
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/children8080695" target="_blank" rel="noreferrer noopener">10.3390/children8080695</a>
Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study
pediatrics; palliative care; electronic medical record; codesign; electronic health record; participatory design; shared health record; software development; think-aloud
BACKGROUND: Pediatric palliative care (PPC) patients experience years of multisectoral and professional care. An electronic cross-facility health record (ECHR) system can support the immediate exchange of information among PPC professionals. Based on a needs assessment, a prototype ECHR system was developed. METHODS: To evaluate potential users' perspective regarding the system, a qualitative observational study was conducted consisting of a concurrent think-aloud session and a semi-structured qualitative interview. RESULTS: Twenty PPC professionals (nurses, physicians) from specialized outpatient PPC teams, a PPC unit, and medical offices rated the ECHR system as a helpful tool to improve the exchange and collection of information, communication between PPC professionals, and treatment planning. From the user's point of view, the basic logic of the ECHR system should be further adapted to improve the interaction of data remirrored from patient records of outpatient and inpatient care with those entered via the system. The users wished for further functions (text search) and content (information on therapies). Some content, such as the treatment process, needs to be further adapted. CONCLUSION: The developed ECHR system needs to be more specific in some features by offering all available information; while for other features, be less specific to offer a quick overview. The ability to share information promptly and automatically was seen as a tremendous improvement to the quality of care for PPC patients.
Busse TS; Jux C; Kernebeck S; Dreier LA; Meyer D; Zenz D; Zernikow B; Ehlers JP
Children
2021
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/children8100839" target="_blank" rel="noreferrer noopener">10.3390/children8100839</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
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/children8100905" target="_blank" rel="noreferrer noopener">10.3390/children8100905</a>
Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children
complex chronic conditions; pediatric palliative care; communication issues in pediatrics; palliative care in neonatology; prognostication in children
Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.
Bergstraesser E; Thienprayoon R; Brook LA; Fraser LK; Hynson JL; Rosenberg AR; Snaman JM; Weaver MS; Widger K; Zernikow B; Jones CA; Schlögl M
Journal of Palliative Medicine
2021
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.2021.0439" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0439</a>
Participatory Design of a Medication Module in an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Approach with Nurses and Physicians
paediatric palliative care; electronic health records; usability; electronic medical records; participatory design; technology acceptance; user involvement
BACKGROUND: Electronic medical records (EMRs) play a key role in improving documentation and quality of care in paediatric palliative care (PPC). Inadequate EMR design can cause incorrect prescription and administration of medications. Due to the fact of complex diseases and the resulting high level of medical complexity, patients in PPC are vulnerable to medication errors. Consequently, involving users in the development process is important. Therefore, the aim of this study was to evaluate the acceptance of a medication module from the perspective of potential users in PPC and to involve them in the development process. METHODS: A qualitative observational study was conducted with 10 nurses and four physicians using a concurrent think-aloud protocol and semi-structured qualitative interviews. A qualitative content analysis was applied based on a unified theory of acceptance and use of technology. RESULTS: Requirements from the user's perspective could be identified as possible influences on acceptance and actual use. Requirements were grouped into the categories "performance expectancies" and "effort expectancies". CONCLUSIONS: The results serve as a basis for further development. Attention should be given to the reduction of display fragmentation, as it decreases cognitive load. Further approaches to evaluation should be taken.
Kernebeck S; Jux C; Busse TS; Meyer D; Dreier LA; Zenz D; Zernikow B; Ehlers JP
Children
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/10.3390/children9010082" target="_blank" rel="noreferrer noopener">10.3390/children9010082</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
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/10.1111/jpc.15980" target="_blank" rel="noreferrer noopener">10.1111/jpc.15980</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
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/10.1016/j.jpainsymman.2022.04.168" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.04.168</a>
Evaluation of an Electronic Medical Record Module for Nursing Documentation in Paediatric Palliative Care: Involvement of Nurses with a Think-Aloud Approach
Documentation; Electronic medical record; Nurses; Nursing; Palliative care; Pediatrics; Think-aloud
Background: Paediatric palliative care (PPC) is a noncurative approach to the care of children and adolescents with life-limiting and life-threatening illnesses. Electronic medical records (EMRs) play an important role in documenting such complex processes. Despite their benefits, they can introduce unintended consequences if future users are not involved in their development. Aim(s): The aim of this study was to evaluate the acceptance of a novel module for nursing documentation by nurses working in the context of PPC. Method(s): An observational study employing concurrent think-aloud and semi-structured qualitative interviews were conducted with 11 nurses working in PPC. Based on the main determinants of the unified theory of acceptance and use of technology (UTAUT), data were analysed using qualitative content analysis. Result(s): The main determinants of UTAUT were found to potentially influence acceptance of the novel module. Participants perceived the module to be self-explanatory and intuitive. Some adaptations, such as the reduction of fragmentation in the display, the optimization of confusing mouseover fields, and the use of familiar nursing terminology, are reasonable ways of increasing software adoption. Conclusion(s): After adaptation of the modules based on the results, further evaluation with the participation of future users is required. Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Kernebeck S; Busse TS; Jux C; Dreier LA; Meyer D; Zenz D; Zernikow B; Ehlers JP
International Journal of Environmental Research and Public Health
2022
<a href="http://doi.org/10.3390/ijerph19063637" target="_blank" rel="noreferrer noopener">10.3390/ijerph19063637</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>
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>
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>