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.

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.

Use of positron emission tomography for staging, preoperative response assessment and posttherapeutic evaluation in children with Wilms tumour.

PURPOSE: To evaluate FDG-PET for staging, grading, preoperative response assessment and posttherapeutic evaluation in children with Wilms tumour (WT). METHODS: In this study, 23 FDG-PET examinations in 12 paediatric patients (female, n = 5; male, n = 7; age, 1-19 years) with WT (primary, n = 9; relapsed, n = 3) were analysed. All patients were examined with conventional imaging methods (CIM) according to the SIOP2001/GPOH trial protocol. Additionally, FDG-PET/PET-CT was performed for staging (n = 12), preoperative response assessment (n = 6) and posttherapeutic evaluation (n = 5). Imaging results of FDG-PET and CIM were analysed regarding the accuracy in tumour visualisation, impact on therapeutic management and preoperative response assessment, with clinical follow-up and histopathology as the standard of reference. RESULTS: FDG-PET and CIM showed concordant results for staging of primary WT, whereas FDG-PET was superior in 1/3 cases with recurrent WT. Concerning histological differentiation, one case with anaplastic WT had an standard uptake value (SUV) of 12.3, which was remarkably higher than the average SUV in the eight cases with intermediate risk histology. No parameter analysed for PET or CIM was reliably predictive for histological regression or clinical outcome. After completion of therapy, FDG-PET was superior to CIM in 2/5 cases in detecting residual disease with therapeutic relevance. CONCLUSION: FDG-PET does not provide additional information to the traditional imaging work-up for staging WT patients, preoperative response assessment and clinical outcome. FDG-PET was advantageous in ruling out residual disease after completion of first line treatment and in pretherapeutic staging of relapse patients. Furthermore, there seems to be a good correlation of initial SUV and histological differentiation.

Correlative imaging strategies implementing CT, MRI, and PET for staging of childhood Hodgkin disease.

BACKGROUND: The value of different correlative imaging strategies with F18-fluorodeoxyglucose positron emission tomography (FDG-PET) and conventional imaging modalities (CIM) for initial staging of pediatric Hodgkin disease (HD) was assessed. METHODS: Thirty-three patients (age, 4 to 18 y) with histologically proven HD underwent initial staging with computed tomography (thorax), magnetic resonance imaging (neck, abdomen, pelvis), and FDG-PET in a prospective study. Image fusion (PET-CIM) was performed using a semiautomatic voxel-based algorithm. Analysis of separate, side-by-side (SBS) and fused PET and CIM was performed evaluating 21 nodal and 6 extranodal regions per patient for presence of lymphoma, applying a 5-point confidence scale. The reference data was clinical follow-up (>12 mo). RESULTS: Concerning lymph node regions above and below the diaphragm the accuracy of CIM, PET, SBS, and image fusion was 86%, 89%, 94%, 97%, and 94%, 94%, 97%, 98%. In extranodal regions, the accuracy was 96%, 96%, 100%, and 100%. The reviewers' confidence was improved significantly by image fusion. Staging and therapy assignment on the basis of CIM was correctly modified by SBS in 5 and 4, by image fusion in 7 and 5 patients. CONCLUSIONS: Combined reading of FDG-PET and CIM is crucial for accurate staging in pediatric HD. Image fusion improves the observers' confidence and has impact on the therapeutic management.

Melorheostosis of the hand in a 7-year-old girl.

Melorheostosis of the hand is rare. We report a 7-year-old girl who presented with a contracture of the left hand. Diagnosis was made by conventional radiography and bone scintigraphy. MRI proved to be a very useful tool to visualize the soft-tissue changes. This is especially important when surgical repair is considered.