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Background: The Chochinov Dignity Model was developed based on a cohort of adult patients with advanced cancer, but its role among dying children is not clear. This study aims to develop a model of dignity for children receiving pediatric palliative care based on the Chochinov Dignity Model. Methods: This is a descriptive qualitative study. Participants included a total of 11 parents and 14 healthcare providers who were recruited from a tertiary children's hospital in Beijing and the Pediatric Palliative Care Subspecialty Group of the Pediatrics Society of the Chinese Medical Association using purposive sampling. Thematic framework analysis was used to analyze data. Results: The themes of the empirical Dignity Model were broadly supported in this study, but some themes were interpreted differently in the child population. Compared with the original model, some child-specific themes were identified including acknowledging regret, a sense of security, the company of important loved ones, realizing unfinished wishes, decent and dignified death, resolving family disputes, and fairness. Conclusions: This is the first study on Dignity Model for terminal children. Knowledge of children's dignity can promote reflection of healthcare providers and caregivers regarding the values underlying their performance in pediatric palliative care, and develop certain practical interventions to strengthen children and their families' sense of dignity at end of life. [ABSTRACT FROM AUTHOR]

The article reports that Accurate assessments of potassium intake in children are important for the early prevention of CVD. Currently, there is no simple approach for accurate estimation of potassium intake in children. We aim to evaluate the accuracy of 24-h urinary potassium excretion (24UKV) estimation in children using three common equations: the Kawasaki, Tanaka and Mage formulas, in a hospital-based setting.

Although retinoblastoma (Rb) is considered to have a good prognosis, economical stress is still a huge problem for patients' families. Besides, doctors, the government, and social foundation staff do not precisely know how much is truly required for complete Rb therapy, especially the non-medical costs and indirect costs. This study was conducted to estimate the economic burden of Rb patients. This was a retrospective study. Fifty Rb patients were finally enrolled in the study. The questionnaire survey was conducted with surviving Rb patient' main family caregivers to collect the information on costs during illness through the phone. Costs included direct and indirect cost; direct costs included medical and non-medical costs. Medical costs include drug costs, surgery costs, treatment fees, lab tests, non-lab tests costs, and medical consumptive stuff costs (including hospital expenses and outpatient fees). The total direct cost was $27,814.62 ± 15,137.73, and the average medical cost was $15,034.48 ± 8,224.19 ($3,963.99–36,826.53). The total non-medical expenses averaged $12,252.93 ± 9,872.64 ($728.86–48,104.95). The average reduced working time was 11.50 ± 8.06 months, and the average lost income was $13,512.23 ± 11,545.83. Among the non-medical expenses, the average non-medical expenses for children in Beijing and surrounding areas was $6,557.68 ± 6,385.42, and the average non-medical expenses for children in other provinces and was $14,502.29 ± 10,484.86, t-test p-value = 0.011. The average transportation cost for children in Beijing and surrounding areas (Hebei, Tianjin) was $1,871.09 ± 1,428.91, other provinces was $4,909.62 ± 3,697.02. Of children in Beijing and surrounding areas the average accommodation fee was $2,788.42 ± 3,065.00, in other provinces it was $6,599.27 ± 3,065.00. Children with Rb have a heavy economic burden. Direct non-medical expenses are higher. Getting medical treatment nearby can help reduce the economic burden of the disease. Besides, work-related issues are also a major financial problem for families with Rb, and the government should properly provide economic subsidies. Simplifying the national health insurance process and purchasing commercial supplementary medical insurance will increase the family's ability to afford the cost of cancer treatment. [ABSTRACT FROM AUTHOR]

Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents' spirituality and to explore how parents discuss death with their terminally ill children in mainland China. Design: Qualitative study. Setting/participants: This study was conducted in the hematology oncology center at Beijing Children's Hospital. Participants in this study included 16 bereaved parents. Results: Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents' spiritual needs. Parents' spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism. Conclusion: Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient's personal belief in death should be assessed before discussing death with them. [ABSTRACT FROM AUTHOR]

Background: The aim of this study is to add to the current knowledge regarding extracranial malignant rhabdoid tumor (MRT), a rare and highly aggressive tumor that occurs most commonly in infants and young children. Patients and Methods: A retrospective medical record review was conducted on 53 patients with pathologically confirmed MRT in Beijing Children's Hospital between January 2007 and October 2017. Results: Fifty‐three patients were diagnosed with MRT at a median age of 16 months, including 32 cases of malignant rhabdoid tumor of the kidney (MRTK) and 21 cases of extrarenal extracranial rhabdoid tumor (EERT). Fourteen (14/32, 43.75%) patients with MRTK and five (5/21, 23.81%) patients with EERT had metastases at diagnosis, and quite a few number of cases occurred tumor rupture (26.42%). Among the 53 patients, 40 (75.47%) patients died, 10 (18.87%) patients survived, and 3 patients (5.66%) were lost to follow‐up. Among the 40 dead patients, 38 patients died from rapid progression of the disease or tumor recurrence, and 2 patients died of severe postoperative complications. Most of the recurrent or relapsed cases (94.11%) occurred within 8 months, with a median time of 76 days after diagnosis. The overall survival rates of 3 years and 5 years for the entire cohort were 23.71% and 18.44%, respectively. After survival analysis, it was clear that a younger age at diagnosis and distant stage patients had relatively poor outcomes. The effect of treatment was the most difficult to analyze because patients were not treated uniformly. Statistically significant differences in survival were noted among patients treated with standard chemotherapy, total resection, and radiotherapy. Conclusion: Extracranial MRT is still a highly aggressive tumor in children. Younger patients and those suffering from metastatic disease were most likely to have a poor outcome because of rapid progression or recurrence of the tumor. Implications for Practice: This is the largest single‐institutional report that investigates the clinical characteristics and outcomes of extracranial malignant rhabdoid tumor (MRT) in China. Our study showed that gross hematuria and tumor rupture were typical characteristics of malignant rhabdoid tumor of the kidney. After survival analysis, it was found that the advanced stage of the tumor and an age ≤12 months at diagnosis were significantly associated with poorer survival. Although extracranial MRT is still a highly aggressive tumor in children, multimodal treatment approach, including chemotherapy, surgery, and radiotherapy, should be employed for this disease. Extracranial malignant rhabdoid tumor (MRT) is a rare and aggressive tumor that occurs mainly in infants and young children. This review reports the clinical characteristics, treatment schedules, and outcomes of patients with MRT from a single institution in China. [ABSTRACT FROM AUTHOR]

Background: Pleuropulmonary blastomas (PPB) are rare aggressive paediatric lung malignancies and are among the most common DICER1-related disorders: it is estimated that 75–80% of children with a PPB have the DICER1 mutation. DICER1 mutations are responsible for familial tumour susceptibility syndrome with an increased risk of tumours. In approximately 35% of families with children manifesting PPB, further malignancies may be observed. Symptoms of DICER1 syndrome may vary, even within monozygotic twins. Preventive screening of carriers with DICER1 mutations is important and follow-up is undertaken as recommended by the 2016 International PPB Register. Case presentation: We present two pairs of monozygotic twins. In one pair of 4-year, 2-month old girls, both with DICER1 mutation, one developed PPB(II) and her identical sibling had acute transient hepatitis. In the other pair of 19-month-old female babies, one had a history of bronchopulmonary hypoplasia and developed PPB(III) without DICER1 mutation, and her identical sibling had allergic asthma. Both patients with PPB were treated with R0 resection and received 12 cycles of postoperative chemotherapy. At the most recent review, the twins had been followed up for six and eight years, respectively, and they all remained healthy. However, the height and weight of the patients with PPB were lower than those of their respective identical sister. Conclusions: PPB is rare, especially in monozygotic twins. We emphasise the importance of genetic testing and follow-up in monozygotic twins with PPB. During the follow-up, children surviving PPB should be monitored closely for growth and development disorders which caused by chemotherapy. [ABSTRACT FROM AUTHOR]