Potential Contributing Factors for Irritability of Unknown Origin in Pediatric Palliative Care.

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

Discriminant properties of the Behavioral Pain Scale for assessment of procedural pain-related distress in ventilated children.

OBJECTIVES: Children hospitalized in a pediatric intensive care unit (PICU) are frequently exposed to distressing and painful medical procedures and interventions. There is a lack of clinical scales to measure procedural pain-related distress in ventilated children. The Behavioral Pain Scale (BPS) was initially developed to detect procedural pain in critically ill adults. This study aims to assess the BPS's discriminant properties for measuring procedural pain-related distress in ventilated pediatric patients incorporating two instruments validated for pediatric patients. METHODS: This prospective exploratory study was performed with ventilated children admitted to the interdisciplinary 14-bed PICU of the University Children's Hospital, University Medical Center Hamburg-Eppendorf, Germany. The nurse in charge and an independent observer simultaneously assessed the patients using German versions of the BPS, the COMFORT-B scale (CBS), and the modified Face, Legs, Activity, Cry, Consolability (mFLACC) scale immediately before and during endotracheal suctioning. RESULTS: We analyzed 170 parallel assessments in n=34 ventilated children. Patients were (mean ± SD) 9.5 ± 4.8 years old. Internal consistency for the BPS was excellent (α=0.93). We found a high rater agreement for all clinical scales (BPS: k=0.73, CBS: k=0.80, mFLACC: k=0.71). Strong correlations were identified between BPS and CBS (r=0.89) and BPS and mFLACC (r=0.79). The BPS cutoff values showed likewise excellent results (area under the curve CBS >16: 0.97; mFLACC >2: 0.91). CONCLUSIONS: In our population of ventilated children, the BPS was well suited to detect procedural pain-related distress compared with two validated pain scales. Further extensive validation studies should follow to support our findings.

Planning for Implementation Success of an Electronic Cross-Facility Health Record for Pediatric Palliative Care Using the Consolidated Framework for Implementation Research (CFIR).

Pediatric palliative care (PPC) patients require years of care across professions and sectors. Sharing treatment-related information and communicating among different PPC professionals is critical to ensure good quality of care. In Germany, this communication is mostly paper-based and prone to errors. Therefore, an electronic cross-facility health record (ECHR) was participatorily designed with users, wherein information can be shared and PPC professionals can communicate with each other. As this form of electronic health record differs from existing models in Germany, there is a need for successful implementation to ensure a positive impact. Therefore, the facilitators and barriers to the implementation of ECHR in PPC were examined. Using the consolidated framework for implementation research (CFIR), transcripts of 32 interviews, 3 focus groups, and 20 think-aloud studies with PPC professionals were analyzed. CFIR indicated that the ECHR-design was viewed positively by users and can be a facilitator for implementation. Barriers exist, mainly due to the fact that the implementation is not planned, the use of the ECHR involves effort, costs are not covered, and all users must be motivated to use the ECHR for functionality. CFIR helps uncover the crux of the issues that need to be considered when planning ECHR implementation to improve care in PPC.

Evaluation of an Electronic Medical Record Module for Nursing Documentation in Paediatric Palliative Care: Involvement of Nurses with a Think-Aloud Approach.

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: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: After adaptation of the modules based on the results, further evaluation with the participation of future users is required.

Participatory Design of a Medication Module in an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Approach with Nurses and Physicians.

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.

Insights into the Frequency and Distinguishing Features of Sleep Disorders in Pediatric Palliative Care Incorporating a Systematic Sleep Protocol.

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.

Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study.

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.

Needs Assessment for the Development of an Electronic Cross-Facility Health Record (ECHR) for Pediatric Palliative Care: A Design Thinking Approach.

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.

Electronic Health Records in Specialized Pediatric Palliative Care: A Qualitative Needs Assessment among Professionals Experienced and Inexperienced in Electronic Documentation.

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.

Participatory Design of an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Study with Nurses and Physicians.

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.

Assessment of Sleep-Related Problems in Children with Cerebral Palsy Using the SNAKE Sleep Questionnaire.

Cerebral palsy (CP) represents the most common motor impairment in childhood. The presence of sleep problems has not yet been investigated with an instrument specifically designed for this population. In this hospital-based, prospective study, N = 100 children (M = 7.9, range: 2-18 years) with CP were included. All patients underwent pediatric neurologists' screening incorporating instruments (Data Collection Form; Gross Motor Functions Classification System, GMFCS; Bimanual Fine Motor Function, BFMF) recommended by the "Surveillance of Cerebral Palsy in Europe (SCPE)". Parents completed the "Sleep Questionnaire for Children with Severe Psychomotor Impairment (SNAKE)". Children's sleep behavior was increasingly conspicuous, with greater gross motor (SNAKE scales: disturbances remaining asleep, daytime sleepiness) and fine motor (additionally SNAKE scale arousal and breathing problems) functional impairment. Overall, a proportion of children showed sleep behavior outside the SNAKE's normal range. No relevant sleep differences were identified between different CP subtypes and comorbidities. Applying a population-specific questionnaire, children's functional impairment seems to be more relevant to their sleep behavior than the CP subtype or CP comorbidities.

Quantifying the Language Barrier-A Total Survey of Parents' Spoken Languages and Local Language Skills as Perceived by Different Professions in Pediatric Palliative Care.

To date, there are no specific figures on the language-related characteristics of families receiving pediatric palliative care. This study aims to gain insights into the languages spoken by parents, their local language skills and the consistency of professional assessments on these aspects. Using an adapted version of the "Common European Framework of Reference for Languages", the languages and local language skills of parents whose children were admitted to an inpatient pediatric palliative care facility (N = 114) were assessed by (a) medical staff and (b) psychosocial staff. Nearly half of the families did not speak the local language as their mother tongue. The most frequently spoken language was Turkish. Overall, the medical staff attributed better language skills to parents than the psychosocial staff did. According to them, only 27.0% of mothers and 38.5% of fathers spoke the local language at a high level while 37.8% of mothers and 34.6% of fathers had no or rudimentary language skills. The results provide important information on which languages pediatric palliative care practitioners must be prepared for. They sensitize to the fact that even within an institution there can be discrepancies between the language assessments of different professions.

Opioid-Induced Respiratory Depression in Pediatric Palliative Care Patients with Severe Neurological Impairment-A Scoping Literature Review and Case Reports.

Pediatric Palliative Care (PPC) addresses children, adolescents, and young adults with a broad spectrum of underlying diseases. A substantial proportion of these patients have irreversible conditions accompanied by Severe Neurological Impairment (SNI). For the treatment of pain and dyspnea, strong opioids are widely used in PPC. Nonetheless, there is considerable uncertainty regarding the opioid-related side effects in pediatric patients with SNI, particularly concerning Opioid-Induced Respiratory Depression (OIRD). Research on pain and OIRD in pediatric patients with SNI is limited. Using scoping review methodology, we performed a systematic literature search for OIRD in pediatric patients with SNI. Out of n = 521 identified articles, n = 6 studies were included in the review. Most studies examined the effects of short-term intravenous opioid therapy. The incidence of OIRD varied between 0.13% and 4.6%; besides SNI, comorbidities, and polypharmacy were the most relevant risk factors. Additionally, three clinical cases of OIRD in PPC patients receiving oral or transdermal opioids are presented and discussed. The case reports indicate that the risk factors identified in the scoping review also apply to adolescents and young adults with SNI receiving low-dose oral or transdermal opioid therapy. However, the risk of OIRD should never be a barrier to adequate symptom relief. We recommend careful consideration and systematic observation of opioid therapy in this population of patients.

A Sleep Questionnaire for Children with Severe Psychomotor Impairment (SNAKE)-Concordance with a Global Rating of Sleep Quality.

Sleep problems are a common and serious issue in children with life-limiting conditions (LLCs) and severe psychomotor impairment (SPMI). The "Sleep Questionnaire for Children with Severe Psychomotor Impairment" (Schlaffragebogen für Kinder mit Neurologischen und Anderen Komplexen Erkrankungen, SNAKE) was developed for this unique patient group. In a proxy rating, the SNAKE assesses five different dimensions of sleep(-associated) problems (disturbances going to sleep, disturbances remaining asleep, arousal and breathing disorders, daytime sleepiness, and daytime behavior disorders). It has been tested with respect to construct validity and some aspects of criterion validity. The present study examined whether the five SNAKE scales are consistent with parents' or other caregivers' global ratings of a child's sleep quality. Data from a comprehensive dataset of children and adolescents with LLCs and SPMI were analyzed through correlation coefficients and Mann-Whitney U testing. The results confirmed the consistency of both sources of information. The highest levels of agreements with the global rating were achieved for disturbances in terms of going to sleep and disturbances with respect to remaining asleep. The results demonstrate that the scales and therefore the SNAKE itself is well-suited for gathering information on different sleep(-associated) problems in this vulnerable population.

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.