Quality of Outpatient Pediatric Palliative Care Telehealth: A Retrospective Chart Review.

CONTEXT: Studies suggest the feasibility and acceptability of telehealth in outpatient pediatric palliative care. However, there is a need for data that describes the implementation and quality of telehealth, relying on objective and validated measures. OBJECTIVE: We sought to compare the provision of pediatric palliative care by delivery method. METHODS: We conducted a retrospective electronic health record review of patients seen by our outpatient palliative care team over a two-year period. Demographic, diagnostic, and health utilization data as well as encounter characteristics were compared between patients seen in person (IP), through telehealth (TH), and both (IP/TH). RESULTS: Three hundred ninety-four patients were evaluated with 889 outpatient pediatric palliative care encounters. Non-English speaking patients were less likely to receive palliative care through TH, as were patients without active patient portals. Median follow-up time was longer for patients seen through TH or IP/TH. Patients with malignancies were seen more frequently IP while children with neurologic diagnoses, technology dependence, and a higher number of complex chronic conditions were seen more frequently via TH. Health outcomes, end of life quality metrics, and encounter-level quality indicators were similar across care delivery methods. Review of systems, pain, and mood management, and advance care planning happened more frequently IP while goals of care discussions and medical decision-making happened more through TH. CONCLUSION: Despite differences in patients seen and palliative interventions provided in person compared to telehealth, health outcomes, and quality indicators were similar across care delivery methods. These data support the continued practice of telehealth in palliative care and highlight the need for equity in its evolution.

Patient perception of voxelotor treatment benefit in sickle cell disease.

Patients with sickle cell disease (SCD) experience a range of clinical symptoms, including acute and chronic pain, fatigue, and respiratory problems, as well as chronic organ complications that can lead to disability and accelerated mortality. Voxelotor is a first-in-class therapy that targets sickle hemoglobin polymerization, the root cause of SCD. It is approved by the US Food and Drug Administration for treatment of SCD in patients aged 4 years and older and in the European Union and United Arab Emirates for the treatment of SCD in patients aged 12 years and older. Here, we report the single-center experience of both clinician-determined and patient-reported benefits of voxelotor in 27 consecutive patients treated for at least 8 weeks. Clinical Global Impression of Change and Patient Global Impression of Change rating scales were used to capture clinicians' and patients' perceptions of change in overall patient health-related quality-of-life with voxelotor treatment. Laboratory data were also collected to assess clinical response to treatment. As observed in previous clinical studies, hemoglobin concentrations and markers of hemolysis were improved in patients treated with voxelotor. Most patients reported marked improvement in disease symptoms, which correlated well with the clinicians' assessments. Although limited by the retrospective open-label study design, these findings suggest that voxelotor use has a positive impact on outcomes in patients with SCD.