“There When We Need Them”: Assessing Patient/Family Satisfaction with a Growing Pediatric Palliative Care Program (QI414)

• Published in: Journal of pain and symptom management 2022-05, Vol.63 (5), p.892-893
• Main Authors: Robichaux, Mallory, Kearns, Tabitha, Morvant, Alexis, Kiefer, Ashley
• Format: Article
• Language: English
• Subjects: Caregivers; Children; Communication; Email; Evaluation; Family satisfaction; Palliative care; Patient satisfaction; Patients; Pediatrics; Polls & surveys; Praise; Quality of life; Symptom management; Teams
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2022.02.101

1. Describe the need to learn about the patient/family pediatric palliative care (PPC) experience 2. Explain how a growing program might develop or implement a patient/family satisfaction assessment 3. Describe the benefit of assessing patient and family satisfaction with PPC Although palliative care has been established as an important subspecialty, it remains a novel concept to many patients and families experiencing serious illness. The assessment of patient and family satisfaction with pediatric palliative care (PPC) services is crucial to ensuring that the needs of our patients and families are met. We will use a survey tool to assess at least 30 patients’ or caregivers’ satisfaction with our hospital's PPC services in 1 month. A 20-question online survey was created from core and program building questions from the Pediatric Palliative Improvement Network's patient/family satisfaction survey in addition to several program-specific questions. Participants, including eligible patients and primary caregivers, were recruited via face-to-face contact, telephone, or email communication. Anonymous responses were collected and stored in SurveyMonkey. Thirty-eight of 81 eligible participants (46.9%) completed the survey. More than half of participants agreed or strongly agreed that the PPC team improved their child's overall care (79%), quality of life (71.1%), symptom management (65.8%), and communication with the medical team (71.1%), and their understanding of their child's illness (60.5%); most other responses were neutral. No participants felt that PPC was introduced too early. An overwhelming majority (94.7%) stated that they definitely or probably would recommend the PPC team to another patient or family and would be more likely to recommend the hospital to others because of the PPC team's involvement in their care. Additional praise and suggestions for improvement were also identified in qualitative data shared via open-ended questions and opportunities for comments. These data demonstrate that a new, growing PPC team is improving the overall experience of their patients and families. Ongoing assessment of patient and family satisfaction is important as PPC programs continue to grow.