Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care.

Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families 24/7 during crises. The complementary use of telehealth may improve the quality of care. In this pilot study we identify the needs and concerns of patients, teams, and other stakeholders regarding the introduction of telehealth. As a first step, focus groups were conducted in three teams. For the second step, semi-structured interviews were conducted with patients and their families (n = 15). Both steps were accompanied by quantitative surveys (mixed methods approach). The qualitative data were analyzed using content analysis. A total of 11 needs were identified, which were prioritized differently. Highest priority was given to: data transmission, video consultation, access to patient records, symptom questionnaires, and communication support. The concerns identified were related to the assumption of deterioration of the status quo. Potential causes of deterioration were thought to be the negative impact on patient care, inappropriate user behavior, or a high level of technical requirements. As a conclusion, we define six recommendations for telehealth in PPHC.

Prehospital emergency medicine for children receiving palliative home care in Germany-a cross-sectional, exploratory study of EMS providers.

Background: The prevalence of children with life-limiting conditions is rising, and since the amendment of the social insurance code in Germany, palliative home care teams have treated an increasing number of children. These teams provide 24/7 readiness, yet some parents still call the general emergency medical service (EMS) for various reasons. EMS is exposed to complex medical problems in rare diseases. Questions arose about the experiences of EMS and whether they felt prepared for emergencies involving children treated by a palliative care team. Methods: This study used a mixed methods approach to focus on the interface between palliative care and EMS. First, open interviews were conducted, and a questionnaire was developed based on the results. The variables included demographic items and individual experiences with patients. Second, a case report of a child with respiratory insufficiency was presented to assess the spontaneous treatment intentions of EMS providers. Finally, the need, relevant topics, and duration of specific training in palliative care for EMS providers were evaluated. Results: In total, 1,005 EMS providers responded to the questionnaire. The average age was 34.5 years (±10.94SD), 74.6% were male. The average work experience was 11.8 years (±9.7), 21.4% were medical doctors. Experience with a call of a life-threatening emergency involving a child was reported by 61.5% and severe psychological distress during such a call was reported by 60.4%. The equivalent distress frequency for adult patient calls was 38.3%. (p < 0.001). After review of the case report, the EMS respondents suggested invasive treatment options and rapid transport to the hospital. Most (93.7%) respondents welcomed the consideration of special training in pediatric palliative care. This training should include basic information about palliative care, an analysis of cases involving palliatively treated children, an ethical perspective, practical recommendations, and available (24/7) local contact for further guidance and support. Conclusion: Emergencies in pediatric palliatively treated patients were more common than expected. EMS providers perceived the situations as stressful, and there is a need for specific training with practical aspects.

Vaccine Preventable Diseases in Pediatric Palliative Care - A Multicenter Cross-Sectional Study.

CONTEXT: Vaccine preventable diseases lead to distressful symptoms and complications among pediatric patients receiving specialized home palliative care. There was no data on the vaccination compliance. OBJECTIVES: The objective was to determine the vaccination coverage, discuss the relevance of vaccinations and provide vaccination recommendations in pediatric palliative care. METHODS: Vaccination data were compared in a multicenter cross-sectional study. Expert interviews were conducted to evaluate symptom burden. The vaccination status of patients treated by six German pediatric specialized home palliative care teams was recorded from January 2019 to December 2019. The data were compared to the national immunization schedule and the vaccination rate of a representative German pediatric cohort. Onset of missed vaccination was compared to the date of diagnosis of the life-limiting condition. A risk score was calculated to evaluate the relevance of each individual vaccinations. RESULTS: Vaccination rates of Tdpa, haemophilus influenzae type B, poliomyelitis, hepatitis B, pneumococcal disease, meningococcal diseases type C, and MMR were lower compared to healthy controls. There were no significant differences in varicella. In most cases the discontinuation of recommended immunizations occurred after diagnosis of the palliative condition. Influenza had the highest risk score and was the most frequent vaccine preventable disease in retrospective data. This paper includes a pragmatic proposal for the management of vaccination in this vulnerable population. CONCLUSION: Children and adolescents with life-limiting conditions are at increased risk of vaccine preventable diseases. Individual vaccination counselling is recommended.

Cardiopulmonary resuscitation in pediatric patients under palliative home care - A multicenter retrospective study.

Introduction: Patients under palliative home care have special needs for their end-of-life support, which in general does not automatically include cardiopulmonary resuscitation. However, emergency medical services (EMS) respond to emergencies in children under palliative care that lead to cardiopulmonary resuscitation. To understand the underlying steps of decision-making, this retrospective, cross-sectional, multicenter study aimed to analyze pediatric patients under palliative home care who had been resuscitated. Methods: This study included patients from three spezialized pediatric palliative home care (SHPC) teams. The primary study parameters were the prevalence of cardiopulmonary resuscitation and the decision-making for carrying out pediatric advanced life support (PALS). Further analyses included the causes of cardiac arrest, the type of CPR (basic life support, advanced life support), the patient´s outcome, and involvement of the SHPC in the resuscitation. Descriptive statistical analysis was performed. Results: In total, 880 pediatric patients under palliative home care were included over 8.5 years, of which 17 patients were resuscitated once and two patients twice (overall, 19 events with CPR, 21.6 per 1,000 cases). In 10 of the 19 incidents (52.6%), cardiac arrest occurred suddenly without being predictable. The causes of cardiac arrest varied widely. PALS was performed in 78.9% of the cases by EMS teams. In 12 of 19 events (63.2%) resuscitation was performed on explicit wish of the parents. However, from a medical point of view, only four resuscitation attempts were reasonable. In total 7 of 17 (41.2%) patients survived cardiac arrest with a comparable quality of life. Discussion: Overall, resuscitation attempts were rare events in children under home palliative therapy, but if they occur, EMS are often the primary caregivers. Most resuscitation attempts occurred on explicit wish of the parents independently of the meaningfulness of the medical procedure. Despite the presence of a life-limiting disease, survival with a similar quality was achieved in one third of all resuscitated patients. This study indicates that EMS should be trained for advanced life support in children under home palliative therapy and SHPC should address the scenario of cardiac arrest also in early stages of palliative treatment. These results underline that advance care planning for these children is urgently needed.

Gastrointestinal Symptoms in Children With Life-Limiting Conditions Receiving Palliative Home Care.

Context: Children with life-limiting diseases suffer from gastrointestinal (GI) symptoms. Since the introduction of specialized palliative home care (SPHC) in Germany, it is possible to care for these children at home. In phase 1 of care the aim is to stabilize the patient. In phase 2, terminal support is provided. Objectives: Analysis were performed of the differences between these phases. The causes and modalities/outcome of treatment were evaluated. Methods: A retrospective study was performed from 2014 to 2020. All home visits were analyzed with regard to the abovementioned symptoms, their causes, treatment and results. Results: In total, 149 children were included (45.9% female, mean age 8.17 ± 7.67 years), and 126 patients were evaluated. GI symptoms were common in both phases. Vomiting was more common in phase 2 (59.3 vs. 27.1%; p < 0.001). After therapy, the proportion of asymptomatic children in phase 1 increased from 40.1 to 75.7%; (p < 0.001). Constipation was present in 52.3% (phase 1) and 54.1% (phase 2). After treatment, the proportion of asymptomatic patients increased from 47.3 to 75.7% in phase 1 (p < 0.001), and grade 3 constipation was reduced from 33.9 to 15% in phase 2 (p < 0.05). Conclusion: Painful GI symptoms occur in both palliative care phases but are more common in phase 2. The severity and frequency can usually be controlled at home. The study limitations were the retrospective design and small number of patients, but the study had a representative population, good data quality and a unique perspective on the reality of outpatient pediatric palliative care in Germany.

Out-of-Hospital Emergencies in Children Under Palliative Home Care.

Introduction: Specialized palliative home care (SPHC) enables children and adolescents with life-limiting illnesses and complex needs to receive care at home. In addition to controlling symptoms and stabilizing the psychosocial situation, crisis anticipation is a component of SPHC. Since the establishment of the reporting SPHC team, parents have called for additional help from emergency medical services (EMS) in emergency situations with unexpected frequency. Children with life limiting diseases could undergo invasive procedures and unhelpful treatments with uncertain consequences. The questions arose as to which factors led to the involvement of the EMS in a palliative situation, what therapy was performed and what outcome could be reached. Methods: Records of the pediatric SPHC patients and EMS call-outs in these children of the reporting SPHC-team in the central region of Hesse, Germany (population: 1.1 million) were retrospectively analyzed from 01.11.2014 to 01.05.2021. The causes of the call-outs, the existence of an emergency agreement, the National Advisory Committee for Aeronautics (NACA) score, EMS therapy and outcome were examined. Patient data included age, palliative-justifying diagnosis, duration and intensity of care, place of death and median overall survival (MOS) and palliative SHPC treatment. Results: In total, 172 patients were analyzed during the study period. There were 27 EMS calls for a total of 20 patients/families (= EMS group). Palliative illness or a complication was the most frequent cause of call-outs. The patients in the EMS group were significantly less likely to have a DNR order, required more home visits and telephone calls and were under SPHC care for longer. There was a significantly higher proportion of crisis interventions at home visits. The children in the EMS group died less often from the underlying disease. Of the remaining 152 patients (= non-EMS group), a significantly higher proportion had a European home country. Conclusions: Despite the introduction of the SPHC, parents still call the EMS. Good cooperation and joint training should be sought to prepare all those involved for future call-outs.

Seroepidemiological analysis and literature review of the prevalence of Epstein-Barr virus and herpesvirus infections in pediatric cases with non-Hodgkin lymphoma in Central Europe.

BACKGROUND: Epstein-Barr virus (EBV) is linked to a variety of malignancies; most endemic Burkitt lymphoma (BL) harbor EBV, whereas only a subset of the cases of sporadic BL is EBV positive. PROCEDURE: We retrospectively determined the herpesvirus seroprevalence at the time of diagnosis in pediatric non-Hodgkin lymphoma (NHL) patients enrolled in NHL-BFM (Berlin-Frankfurt-Muenster) studies. We accessed the seroepidemiological data from 1147 patients that became available during 1990-2007. We included the records from patients 6 months to 18 years of age with BL, T-cell lymphoblastic lymphoma (T-LBL), lymphoblastic precursor B-cell lymphoma (pB-LBL), diffuse large B-cell lymphoma (DLBCL), or anaplastic large cell lymphoma (ALCL). RESULTS: EBV seropositivity was significantly more frequent in patients with BL than in those with T-LBL. EBV was more prevalent in patients younger than 6 years of age and in patients with BL than in those with non-BL or T-LBL. Event-free survival was significantly lower in varicella-zoster-seronegative patients, but there was no indication of an association to complications due to varicella zoster infection. We found no associations between herpes simplex virus, varicella zoster virus, or human cytomegalovirus seroprevalence and the pediatric Central European NHL cases. CONCLUSION: Early EBV exposure may increase the risk of BL in Central Europe. A higher involvement of EBV in European BL than originally reported appears at least probable. Our data support the thesis that the distinction between endemic and sporadic BL is artificial and should be replaced by the differentiation between EBV-positive and EBV-negative BL.