Providing patient and caregiver feedback on the transition experience.

The Patient Experience of Care Survey (PEC Survey) is an important reporting tool for data on the Healthy People 2020 (HP2020) measure DH-5 – Transition Planning. The NHPCC is required to report data to the Health Resources and Services Administration (HRSA) as part of its federal funding grant. We encourage all HTCs to invite their patients and/or caregivers to participate in the survey.

The HP2020 measure DH-5 – Transition Planning aims to “Increase the proportion of youth with special health care needs whose health care provider has discussed transition planning from pediatric to adult health care.” Ongoing PEC Survey data builds upon a baseline that was established in 2014 for this required reporting measure.

HTC Participation
Federally funded HTCs are responsible for:

• Submitting to local IRBs and requesting that the project receive research-exempt status, as appropriate
• Administering the PEC Survey on an annual basis to unique patients/families
• Supporting this effort per regional grant deliverables
• Providing patient instruction as needed
• Enabling completion of the survey in the patient/caregiver’s method of choice: electronically via URL, QR, or on paper

PEC Survey Administration Materials
The following documents are available to assist HTCs with this initiative. Note: Processes have changed since the last time the NHPCC conducted this survey, so please be sure to reference these new materials when administering the 2019 PEC Survey.

1. How to Get Started
   Provides an overview and background history of the PEC Survey project, IRB requirements, and survey administration processes.
   Audience: HTC Staff

2. Survey Project Overview
   This project overview provides additional information about the purpose, eligibility, and format of the survey, as well as information for HTCs seeking research exemptions from local IRBs.
   Audience: HTC Staff, HTC IRB

3. Instructions for HTC Provider
   Comprehensive instructions for the daily administration of the PEC Survey for HTCs to assist patients completing the survey.
   Audience: HTC Staff

4. Patient Instructions
   Survey completion and submission instructions HTCs should give to their patients.
   Audience: HTC Patients and Caregivers
   Instructions in English
   Instructions in Spanish

5. Patient Experience of Care Survey
   Updated version of PEC Survey as of August 2019.
   Audience: HTC Patients and Caregivers
   PEC Survey in English
   PEC Survey in Spanish