Survey of Pediatric Palliative Care Quality Improvement Training, Activities, and Barriers

Abstract

Context Children with serious illness deserve high-quality pediatric palliative care (PPC). With expansion of PPC provision, it is important to understand the quality improvement (QI) activities of PPC clinicians and programs. Objectives To describe the 1) background, education/training, and activities in QI and 2) perceived barriers to QI efforts among PPC clinicians and programs nationally. Methods An electronic survey was sent to members of the Pediatric Palliative Improvement Network, the National Coalition for Hospice and Palliative Care Pediatric Task Force, and the PPC Research Network as part of a study to develop hospital-based, primary PPC quality measures. Surveys queried participants’ background, education/training, individual/team QI efforts, and barriers to QI work. Results were summarized descriptively. Results Of the 95 respondents; most were female (84 [88%]) and/or white (84 [88%]). The majority (57 [54%]) were physicians, although participants represented a variety of clinical disciplines, researchers (10 [9%]), and administrators (6 [6%]). One-quarter (25 [26%]) reported having <10 hours total of training in QI, yet two-third (63 [66%]) participated in QI work. About one-third (35 [37%]) reported that their program had no dedicated staff for QI activities, yet over half (56 [59%]) of participants reported that their team participated in QI work. Participants reported that lack of personnel/time, standardized measures/tools, education/training/mentoring in QI, systems to promote QI work, and financing/grants were barriers. Conclusion Over half of PPC participants in this study reported involvement in QI activities despite limited staffing/time, QI training, and standardized measures, which presents challenges to this work.