Association of Religious and Spiritual Factors With Patient-Reported Outcomes of Anxiety, Depressive Symptoms, Fatigue, and Pain Interference Among Adolescents and Young Adults With Cancer.

Importance: The associations of spiritual and religious factors with patient-reported outcomes among adolescents with cancer are unknown. Objective: To model the association of spiritual and religious constructs with patient-reported outcomes of anxiety, depressive symptoms, fatigue, and pain interference. Design, Setting, and Participants: This cross-sectional study used baseline data, collected from 2016 to 2019, from an ongoing 5-year randomized clinical trial being conducted at 4 tertiary-referral pediatric medical centers in the US. A total of 366 adolescents were eligible for the clinical trial, and 126 were randomized; participants had to be aged 14 to 21 years at enrollment and be diagnosed with any form of cancer. Exclusion criteria included developmental delay, scoring greater than 26 on the Beck Depression Inventory II, non-English speaking, or unaware of cancer diagnosis. Exposures: Spiritual experiences, values, and beliefs; religious practices; and overall self-ranking of spirituality's importance. Main Outcomes and Measures: Variables were taken from the Brief Multidimensional Measurement of Religiousness/Spirituality (ie, feeling God's presence, daily prayer, religious service attendance, being very religious, and being very spiritual) and the spiritual well-being subscales of the Functional Assessment of Chronic Illness Therapy (meaning/peace and faith). Predefined outcome variables were anxiety, depressive symptoms, fatigue, and pain interference from Patient-Reported Outcomes Measurement Information System pediatric measures. Results: A total of 126 individuals participated (72 [57.1%] female participants; 100 [79.4%] white participants; mean [SD] age, 16.9 [1.9] years). Structural equation modeling showed that meaning and peace were inversely associated with anxiety (ß = -7.94; 95% CI, -12.88 to -4.12), depressive symptoms (ß = -10.49; 95% CI, -15.92 to -6.50), and fatigue (ß = -8.90; 95% CI, -15.34 to -3.61). Feeling God's presence daily was indirectly associated with anxiety (ß = -3.37; 95% CI, -6.82 to -0.95), depressive symptoms (ß = -4.50; 95% CI, -8.51 to -1.40), and fatigue (ß = -3.73; 95% CI, -8.03 to -0.90) through meaning and peace. Considering oneself very religious was indirectly associated with anxiety (ß = -2.81; 95% CI, -6.06 to -0.45), depressive symptoms (ß = -3.787; 95% CI, -7.68 to -0.61), and fatigue (ß = -3.11, 95% CI, -7.31 to -0.40) through meaning and peace. Considering oneself very spiritual was indirectly associated with anxiety (ß = 2.11; 95% CI, 0.05 to 4.95) and depression (ß = 2.8, 95% CI, 0.07 to 6.29) through meaning and peace. No associations were found between spiritual scales and pain interference. Conclusions and Relevance: In this study, multiple facets of spirituality and religiousness were associated with anxiety, depression, and fatigue, all of which were indirectly associated with the participant's sense of meaning and peace, which is a modifiable process. Although these results do not establish a causal direction, they do suggest palliative interventions addressing meaning-making, possibly including a spiritual or religious dimension, as a novel focus for intervention development.

Exposure to home-based pediatric palliative and hospice care and its impact on hospital and emergency care charges at a single institution.

BACKGROUND: Pediatric palliative care (PPC) aims to promote quality of life for children and their families through prevention and relief of physical and psychosocial symptoms. Little is known about how PPC/hospice services impact health care resource utilization in an uncertain financial landscape. OBJECTIVE: The study objective was to compare pediatric hospital health care resource utilization before and after enrollment in a home PPC/hospice program. DESIGN: The study was a retrospective administrative data analysis. SETTING/SUBJECTS: The study took place in a pediatric multispecialty hospital. Data were analyzed for 425 children ages 1-21 years who received home-based PPC/hospice services between 2000 and 2010. MEASUREMENTS: Hospitalization and emergency room (ER) administrative data were examined to determine whether or not there were changes in total number of hospital admissions, length of stay (LOS), and hospital billed charges before compared to after PPC/hospice exposure. RESULTS: There was no change in average total number of admissions pre-/post-PPC/hospice exposure; however, we found a significant increase in hospital/ER admissions for children with cancer diagnoses with longer exposure to PPC/hospice services. There were statistically significant reductions in LOS and total charges for hospital-based care; reductions were more pronounced in the noncancer group. Noncancer patients with at least six months of PPC exposure showed a significant decrease in total LOS from pre- to post-program admission by an average of 38 days, and an average decrease in total hospital charges of nearly $275,000. CONCLUSION: Enrollment in home-based PPC/hospice was associated with lower hospital and ER LOS and total hospital charges as compared with the period prior to enrollment for children with noncancer diagnoses.

Best practices for pediatric palliative cancer care: a primer for clinical providers.

Cancer is the leading cause of disease-related death in children and adolescents. Pediatric patients with cancer suffer greatly at the end of life. However, palliative care interventions can reduce suffering and significantly improve the care of these patients and their families. A large percentage of pediatric deaths occur outside of the hospital setting where pediatric palliative resources may not be readily available. Patients in the home setting may be cared for by community hospice programs, which are typically staffed for adult populations. Increasingly, nonpediatric providers are asked to provide palliative care for children and adolescents at the end of life, yet they receive little formal training in this area. This review focuses on the principles of best practice in the provision of palliative care for children and adolescents with cancer. Our intent is to aid clinical providers in delivering optimal care to this patient population. Topics unique to pediatric palliative care that are addressed include: providing pain and symptom management in the broad pediatric range from neonate to adolescent; caring for and interacting with developmentally distinct groups; engaging in shared decision making with parents and adolescents; providing accommodations for prognoses that are often more uncertain than in adult patients; and delivering concurrent disease-directed therapy with palliative care.

Developing a pain and palliative care programme at a US children's hospital.

Although a number of successful adult combined pain and palliative care programmes exist worldwide, integrated paediatric pain and palliative care services are rare. This article reviews epidemiology, definition, symptom prevalence and myths in paediatric palliative care. It then describes the development of the Pediatric Pain and Palliative Care Programme at the Children's Hospitals and Clinics of Minnesota, USA. This paediatric service aims to control acute, chronic and recurrent pain in all in- and outpatients at the hospitals, with follow-up at home. The team also provides holistic, interdisciplinary care for children and teens with life-limiting or terminal diseases, and their families. It is the only paediatric hospice provider in the state of Minnesota. One of the advantages of an integrated Pain and Palliative Care Programme such as the one described in this article, may be the provision of care in a continuum from acute, chronic or recurrent pain to palliative care and hospice care. This example shows, that integrated paediatric pain medicine and palliative care programmes can be successfully implemented in a children's hospital setting.