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.

Reporting data for 2020 has been challenging due to the COVID-19 pandemic. Reporting data collected during in-person visits is particularly demanding. HTC staff went above and beyond in this last year in many ways, one of which is in administration of the PEC Survey. Despite limited in-person visits, HTCs still reported 849 valid survey results for the 2020 calendar year. We consider this a tremendous success. On behalf of the NHPCC, a sincere thank you to all health care providers and HTC staff. We truly appreciate all that you do to facilitate continued data collection and for the blood disorders community.

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 2021 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
  1. 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
  1. 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
  1. Patient Instructions
    Survey completion and submission instructions HTCs should give to their patients.
    Audience: HTC Patients and Caregivers
    Instructions in English
    Instructions in Spanish
  1. Patient Experience of Care Survey
    Updated version of PEC Survey
    Audience: HTC Patients and Caregivers
    PEC Survey in English
    PEC Survey in Spanish

Thank you to all HTC providers and staff for your ongoing participation in the Patient Experience of Care Survey initiative.

Please contact with the subject line “NHPCC PEC Survey” if you have any questions or need additional assistance.