Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria.

BACKGROUND: Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal PPC consultation using a diagnostic trigger list. MEASURES: Main outcome measure was the percentage of prenatal PPC consults completed based on diagnostic trigger list eligibility. Balancing measures included stakeholder perspectives on PPC consults and products. INTERVENTION: Interventions included creation and implementation of a diagnostic trigger list for prenatal PPC consultation, educational initiatives with stakeholders, and iterative modifications of our prenatal consultation process. OUTCOMES: Interventions increased consultation rates ≥80% during the first six months of QI implementation (baseline vs. post-interventions) although this increase was not consistently sustained over a 12-month period. CONCLUSIONS/LESSONS LEARNED: Diagnostic trigger lists improve initial rates of prenatal PPC consultation and additional interventions are likely needed to sustain this increase.

Impact of Pediatric Primary Palliative Care Education and Mentoring in Practice.

Primary palliative care education and mentoring strengthens frontline clinicians' confidence and competence in pediatric palliative care, and potentially mitigates their moral distress. The project aims were to improve the knowledge, attitudes, and skills of frontline intradisciplinary clinicians in caring for children with serious conditions and their families. We undertook an intensive educational initiative consisting of didactic and mentoring sessions, and mentored quality improvement projects. Outcomes included the following: 93.3% of participants reported comfort in discussing death, suffering, spirituality, and hope with families, and increased comfort in end-of-life care (89.5%), increased knowledge (94.7%) and skills (100%), improved communication (100%), and being better prepared to discuss and access palliative care resources (100%). Secondary outcomes included 33% increase in specialty pediatric palliative care consults and 98% increase in the integration of specialty palliative care for patients with high-risk cancers. Specialty pediatric palliative care referral became standard for patients with cystic fibrosis, high-risk solid and brain tumors, heart failure, and patients receiving a stem cell transplant. Clinician self-reported moral distress decreased by 30%. This project improved primary palliative care knowledge, attitudes, and confidence in skills, access to care, and family satisfaction, and decreased clinician self-reported moral distress. We report on the 4-year period of project implementation and sustainability.

Integrative holistic approaches for children, adolescents, and young adults with sickle cell disease: A single center experience.

CONTEXT: Painful vaso-occlusive crises (VOCs) associated with sickle cell disease (SCD) are the most common cause of morbidity, hospitalizations, and poor quality of life. Additional symptoms such as sleep disturbances, fatigue, and stress are also common. Non-traditional approaches are often used by families, but concerns remain that patients may forgo standard of care effective therapies in favor of dangerous unproven alternatives. OBJECTIVES: To describe a single center experience related to a multidisciplinary integrative medicine clinic within the division of hematology dedicated to children and young adults with SCD. METHODS: The Sickle Cell Integrative Clinic at Children's National Hospital services patients with SCD. The main goal of this clinic is to provide access to non-pharmacologic interventions, and to manage patients' symptoms in a holistic manner along with standard of care management of SCD. This IRB approved study evaluated experiences of both patients and parents who attended this clinic. RESULTS: Thirty-seven unique patients attended this clinic over 2 years and 31 participated in the study. After attending the SCD integrative clinic, the majority of patients reported integrative therapies to be an acceptable way of treating pain and believed these to be effective. Overall, the vast majority (88 %) of patients reported having a positive experience with the therapies offered in the clinic. None of the patients experienced any adverse events related to integrative therapies provided in the clinic. CONCLUSION: Our experience suggests that encouraging conversations and offering safe and potentially effective integrative therapies alongside conventional SCD therapies under medical guidance allows patients to have an open discussion about their beliefs and treatment goals, improves patient satisfaction and can improve outcomes.

Acupuncture for pain management in children with sickle cell disease.

Pain associated with sickle cell disease (SCD) is frequently treated with opioids which have many side effects. There is a need for adjuvant non-opioid therapies that can improve pain control. Acupuncture, an integrative approach, has been shown to be useful in non-SCD pain conditions but has been used to a very limited extent in SCD. In this report we present a single academic pediatric center experience showing acceptability, feasibility and improved pain experience with adjuvant acupuncture therapy in children with SCD and suggest that acupuncture should be explored as a treatment option for managing pain in SCD.

Feasibility of Early Palliative Care Consultation for Children With High-Risk Malignancies.

BACKGROUND: Children with cancer suffer significant morbidity throughout therapy and often face an uncertain prognosis. Because palliative care teams can provide an additional layer of support with symptom management and communication, we conducted a prospective study assessing the feasibility of early palliative care consultation for children with high-risk malignancies. PROCEDURE: This study was part of a larger prospective study examining the impact of early palliative care consultation. Children were eligible if they were <22 years old and had a high-risk malignancy, recurrence, or required hematopoietic stem cell transplantation (HSCT). Data were collected from the medical record on diagnosis, days to consultation, acceptability of consultation to family/staff, and overall survival. Feasibility was defined as enrollment of >75% of eligible patients, palliative care consultation within 1 month of eligibility, and patient/family satisfaction. RESULTS: Twenty of 25 (80%) eligible patients were approached and received a palliative care consultation at initial diagnosis (7), recurrence (12), or time of HSCT (1). Median age of the children was 5 years (0.1-20 years). Median time from new diagnosis/recurrence to consultation was 12 days (2-180 days); 17 (85%) received the consultation within 30 days. Eleven (55%) of the 20 children died. Median time of consultation prior to death was 128 days (10-648 days). Ten of the 11 (91%) received their consultation >30 days prior to death. No families or oncologists declined an early consultation. CONCLUSIONS: Early palliative care consultation is feasible for children with high-risk cancer and is acceptable to children, families, and pediatric oncologists.