Safety and efficacy of continuous intrathecal baclofen via cervical catheter tip: a retrospective case series.

OBJECTIVE: Intrathecal baclofen (ITB) is an effective treatment for hypertonia in children involving the implantation of a pump and catheter system. The highest concentration of ITB is at the catheter tip. The catheter tip location is most commonly within the lumbar or thoracic spine. The cervical tip location has traditionally been avoided because of concerns of hypoventilation and pneumonia; however, these complications in cervical compared with thoracic or lumbar placement have not been reliably proven. Some studies have suggested that cervical ITB location better treats upper-extremity hypertonia. There are limited data describing the safety and efficacy of cervical ITB on hypertonia. The authors present a single-institution retrospective case series highlighting the safety and efficacy of using cervical ITB location for the treatment of hypertonia. METHODS: Retrospective data analysis was performed for children who underwent continuous dosing cervical ITB between April 2022 and October 2023. Nonmodifiable risk factors, clinical variables, operative characteristics, and adverse outcomes were collected. RESULTS: This study included 25 patients (8 female). The mean age at implantation was 12.4 years, and the mean operative duration was 90 minutes. The mean Barry-Albright Dystonia Scale score decreased by 9.5 points (p = 0.01). The mean aggregated modified Ashworth scale score in the upper extremities decreased by 2.14 points (p = 0.04), and that in the lower extremities decreased by 4.98 points (p < 0.01). One patient each (4%) had infection and baclofen toxicity. Two patients (8%) had respiratory depression requiring continuous positive airway pressure. There was no incidence of pneumonia or wound dehiscence. CONCLUSIONS: The cervical catheter tip location for ITB is safe, is effective to control tone, and should be considered for the treatment of hypertonia. Larger studies with longer follow-up are necessary to further determine upper-limit dosing safety along with long-term functional benefits in these patients.

Case-based explanation of standard work tools for selective dorsal rhizotomy for cerebral palsy.

OBJECTIVE: Spasticity is a challenging feature of cerebral palsy (CP) that may be managed with selective dorsal rhizotomy (SDR). Although standard work tools (SWTs) have recently been utilized to inform a standard of care for neurosurgical procedures, no SWTs for SDR have been previously described. The authors present the multidisciplinary approach SWTs for SDR used at their institutions to promote consistency in the field and minimize complication rates. METHODS: A multidisciplinary approach was used to define all steps in the SDR pathway. Preoperative, intraoperative, and postoperative workflows were synthesized, with specific efforts to improve mobility through inpatient rehabilitation and minimize infection. RESULTS: The SWTs have been implemented at two institutions for 7 years. An illustrative case of a patient aged 3 years 10 months with a history of premature birth at 29 weeks, spastic-diplegic CP, right-sided periventricular leukomalacia, and developmental delay who underwent L2-S1 SDR is presented. CONCLUSIONS: The authors detail SWTs for SDR developed by a multidisciplinary team with specific steps at all points in the patient pathway. The illustrative case emphasizes that SWTs may help ensure the safety of SDR while maximizing its long-term efficacy for individuals with CP.

A Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois.

BACKGROUND: There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas. OBJECTIVE: Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to improve care delivery. DESIGN: A qualitative study involving focus groups (FGs) with PPC stakeholders. SETTING/PARTICIPANTS: From 4 non-metropolitan areas in Illinois, we recruited 3 stakeholder groups: healthcare providers (HPs); bereaved parents; and parents caring for a seriously ill child (SIC). MEASUREMENTS: At each site, we held an FG with people of the same stakeholder group and then an FG involving all stakeholders. Discussion topics included: availability and strengths of local PPC services, barriers to local PPC, opportunities for improving local PPC access and quality, and clinician educational needs. We analyzed data using phenomenology and directed content analysis. RESULTS: Thirty people, 12 parents and 18 HPs, participated in FGs. Identified themes related to: PPC perceptions; availability and use of local resources; and challenges associated with travel, care coordination, and finances. Participants described benefits of and limits to local PPC including pediatric-specific issues such as attending to siblings, creating child peer-support activities, providing school guidance, and financing for PPC. Recommendations included suggestions to enhance care coordination, use existing resources, improve community and provider education, develop community networks, and minimize financial challenges. CONCLUSION: Unique PPC challenges exist in non-metropolitan areas. PPC in non-metropolitan areas would benefit from enhancing local resource utilization and quality. Future work should address the challenges to providing PPC in non-metropolitan areas with a focus on pediatric-specific issues.

Evidence-Based Recommendations for the Appropriate Level of Sedation to Manage Pain in Pediatric Oncology Patients Requiring Procedures: A Systematic Review From the Children's Oncology Group [Formula: see text].

Repeated invasive and painful procedures are often necessary components of pediatric cancer treatment. Adequate pain control during procedures is essential; however, procedure-related pain may be underestimated and undertreated. Currently, there is not a standard approach for the appropriate level of sedation to manage procedure-related pain in children with cancer. A team was assembled to review the evidence and develop recommendations to determine the appropriate level of sedation necessary for pain control in patients undergoing pediatric oncology procedures. After a systematic search of the literature, 15 research-based articles were synthesized and critically appraised. A recommendation was made related to the level of sedation utilized for bone marrow aspirates and bone marrow biopsies. There is a need for further research related to the necessary level of sedation for patients undergoing pediatric oncology procedures.

A survey of chaplains' roles in pediatric palliative care: integral members of the team.

To date, the field of health care chaplaincy has had little information about how pediatric palliative care (PPC) programs meet the spiritual needs of patients and families. We conducted a qualitative study consisting of surveys of 28 well-established PPC programs in the United States followed by interviews with medical directors and professional chaplains in 8 randomly selected programs among those surveyed. In this report, we describe the PPC chaplain activities, evidence regarding chaplain integration with the PPC team, and physician and chaplain perspectives on the chaplains' contributions. Chaplains described their work in terms of processes such as presence, while physicians emphasized outcomes of chaplains' care such as improved communication. Learning to translate what they do into the language of outcomes will help chaplains improve health care colleagues' understanding of chaplains' contributions to care for PPC patients and their families. In addition, future research should describe the spiritual needs and resources of PPC patients and families and examine the contribution chaplains make to improved outcomes for families and children facing life-limiting illnesses.

The role of professional chaplains on pediatric palliative care teams: perspectives from physicians and chaplains.

CONTEXT: Pediatric palliative care (PPC) specialists recognize spiritual care as integral to the services offered to seriously ill children and their families. Little is known about how PPC programs deliver spiritual care. OBJECTIVE: The goal of this pilot study was to begin to describe the role of professional chaplains in established PPC programs in children's hospitals in the United States. METHODS: In 2009 we surveyed 28 PPC programs to ascertain how spiritual care was provided. Of the 19 programs with staff chaplains who met additional study criteria, we randomly selected eight to study in detail. Based on interviews with the medical director and staff chaplain in these eight programs, we qualitatively delineated chaplains' roles in PPC. RESULTS: Twenty-four of the 28 surveyed programs (86%) reported having a staff chaplain on their clinical team. Among the 8 interviewed programs, there was considerable variation in how chaplains functioned as members of interdisciplinary teams. Despite these variations, physicians and chaplains agreed that chaplains address patients' and families' spiritual suffering, improve family-team communication, and provide rituals valued by patients, families, and staff. CONCLUSIONS: Our survey of these PPC programs found that spiritual care was typically provided by staff chaplains, and our interviews indicated that chaplains appeared to be well-integrated members of these teams. Further research is needed to evaluate how well the spiritual needs of patients, families, and staff are being met, and the organizational factors that support the delivery of spiritual care in children's hospitals.