The Implementation and Feasibility of a Patient/family Satisfaction Survey at a Growing Pediatric Palliative Care Program

Background: Because of the remarkable growth of pediatric palliative care (PPC) over the past decade, many programs remain in their infancy. It is important to develop sustainable and efficient standardized operating procedure, with minimal participant burden, to assess patient and/or family satisfaction, elicit feedback about PPC services, and identify improvement opportunities.

Methods: An anonymous, online survey was developed using core and program building questions from the Pediatric Palliative Improvement Network’s Patient/ Family Satisfaction Survey tool in addition to several program-specific questions. Eligibility criteria included: patient is followed by the PPC team; participants had at least one PPC interaction in the past six months, speak English or Spanish and are not in emotional distress; patient participants are at least 13 years of age and capable of completing the survey. Eligible participants were contacted by researchers via three initial methods: in-person (if hospitalized and family present), email, or telephone with subsequent email. In-person visits were prioritized to provide a face-to-face introduction and device to complete the survey. If unsuccessful after three attempts, participants were then contacted via email or telephone. If an email address was provided within the electronic medical record (EMR), participants were initially contacted by email and received a telephone call within 24 hours to confirm survey receipt and provide verbal introduction. If an email address was not provided within the EMR, participants were initially contacted via telephone to obtain an email address in order to enable survey distribution. Email reminders were sent to non-responders at one- and three-week intervals.

Results: Sixty-two eligible participants for 48 patients were identified. Three were excluded due to unsuccessful telephone contact and an inability to obtain an email address. The overall survey response rate was 55.9% (Table 1). In-person contact was most effective (100%) followed by telephone with subsequent email contact (46.7%), and lastly by initial email contact (40%). Each communication attempt resulted in increased responses except the three-week email reminder. Sixteen participants, including all four patient participants, shared an email address with another participant/ family member, and of these, only four completed the survey.

Conclusion: Patients and families were receptive to providing feedback on their PPC experiences. Participants were more likely to respond to the survey when approached in-person. If unable to approach participants in-person, programs may consider telephone and/or email. Participants who are likely to respond will do so following a one-week reminder email; further contact does not seem beneficial. A barrier to participant response was the sharing of contact information between participants. Increased effort should be made to obtain individualized contact information. We hope these findings will guide PPC programs in implementing their own assessments to include the family’s voice in PPC program development with the goal of providing quality care.