Nurses' perception of pediatric pain and pain assessment in the Japanese PICU.

BACKGROUND: Nurses play an essential role in pain management in the pediatric intensive care unit (PICU). However, their perceptions regarding pediatric pain and current practice of pain assessment in Japanese PICUs remain unknown. METHODS: In January 2021, we conducted a multicenter, cross-sectional survey across 35 PICUs in Japan. A structured questionnaire which focused on nurses' perceptions of pediatric pain and pain assessment was developed, pilot-tested, and revised. Twenty copies of the questionnaire were sent to each institution and were distributed to the nursing staff. RESULTS: A total of 356 nurses from 22 institutions responded. Median age of the respondents was 33 years and 84.6% were female. Median length of nursing experience and PICU experience were 10 and 4 years, respectively. Use of pain scales for assessing pain in children who can self-report pain, preverbal children, and children unable to self-report pain due to cognitive impairment were 90.7%, 55.9%, and 50.0%, respectively. Nurses' satisfaction regarding pain management in their PICU was 31.9% and their confidence in pain assessment and management were 32.6% and 44.9%, respectively. Lack of knowledge (95.8%), difficulty assessing pain in children (95.2%), and delay in physician's action (91.8%) were the most perceived barriers to optimal pain management. CONCLUSIONS: The use of pain scales is insufficient and nurses' satisfaction proved to be extremely low in the Japanese PICUs. Substantial effort is required to enhance the level of current pain management and improve outcomes.

Specialist Palliative Care Service for Children With Life-Threatening Conditions: A Nationwide Survey of Availability and Utilization.

CONTEXT: According to the International Observatory on End of Life Care, the level of pediatric palliative care in Japan is Level 2 (capacity building) and the current status of palliative care for children in Japan has not been clarified. OBJECTIVES: The objective of the study was to clarify the availability and utilization of specialist palliative care services among children with life-threatening conditions in Japan. METHODS: A questionnaire was administered to assess the availability of specialist palliative care services among children with life-threatening conditions. All 427 certified regional cancer centers having hospital-based adult palliative care teams, 15 certified children's cancer centers having pediatric palliative care teams, and 368 medical institutions having a certified palliative care unit were surveyed. RESULTS: Fifteen to twenty-one percent of adult palliative care teams and more than 90% of pediatric palliative care teams had experience providing palliative care to children with cancer. By contrast, only 2%-3% of adult palliative care teams and 15% of pediatric palliative care teams had experience providing care for the noncancer population. An estimated 12% of children with cancer in Japan used hospital-based palliative care teams in 2015. Eight children used a palliative care unit in 2015, and of those, seven (88%) had a solid tumor. An estimated 1.3% of children with cancer who died in Japan used a palliative care unit. CONCLUSION: An estimated 12% of children with cancer in Japan used hospital-based palliative care teams and an estimated 1.3% of children with cancer who died in Japan used a palliative care unit in 2015.

Number of Unused Medications at the Time of Last Admission: A Prospective Observational Study in a Single Palliative Care Unit.

BACKGROUND:: Unused medications (UM) are an important issue, with the waste associated with UM a burden to the health-care system. The aims of this study were to clarify the amount and costs of UM in patients with advanced cancer at the time of their last admission to a palliative care unit and to explore the factors contributing to the cost of UM and how patients dealt with UM. METHODS:: A prospective observational study was conducted in single palliative care unit. Unused medications were classified into 6 categories and the number and cost of UM by category calculated per patient. Patients were classified into 2 cost groups (high and low) based on the total cost of UM, and the number and cost of UM by category were compared between these 2 groups. RESULTS:: Of 194 consecutive hospitalized patients, data were analyzed for 90. The mean number and cost of UM per patient was 440 and US$301, respectively. Opioids accounted for 47% of the cost of UM. Comparing costs by UM category, the proportion of opioids (51% vs 21%; P < .0001) and oral anticancer drugs (14% vs 3%; P = .02) was higher in the high- than in the low-cost group. CONCLUSION:: Based on the results of the present study, the estimated annual waste cost of UM for patients with cancer who died in Japan was approximately US$110 million. Interventions to educate patients regarding UM and to eliminate barriers to opioid use may help reduce the cost of UM, particularly opioids and anticancer drugs.

Factor-associated caregiver burden in medically complex patients with special health-care needs.

BACKGROUND: Many medically complex patients with special health-care needs (PSHCN) receive home-based medical support, placing a major burden on their caregivers. We characterized the caregiving factors involved in PSHCN and their relationship with caregiver burden. METHODS: The PSHCN and their families were recruited from children's hospitals and rehabilitation centers. A medical information handbook was distributed to the families on enrollment, followed by a self-report questionnaire 1 year later. Data on the type of caregiving involved, family circumstances, and caregiver burden were collected. The Zarit caregiver burden scale (ZS) was used to evaluate caregiver burden. Logistic regression (proportional odds model) was used to determine associations between each variable and caregiver burden in each of two PSHCN age groups: <15 years old (younger group) and ≥ 15 years (older group). RESULTS: Sixty-eight PSHCN and their families were included in the analysis. The mean age of the PSHCN was 15.4 ± 11.8 years. On multivariate analysis there was a significant positive correlation between ZS score and older siblings (odds ratio [OR], 3.65), but no significant correlation between caregiver burden and type of care involved in the younger group. In the older group, a positive correlation was observed between caregiver burden and home mechanical ventilation with tracheostomy (OR, 15.16), but a negative correlation with younger siblings (OR, 0.04). CONCLUSIONS: Family circumstances play a bigger role than type of care required in increasing caregiver burden in families of PSHCN aged less than 15 years.