Defining a patient-centered approach to cancer survivorship care: development of the patient centered survivorship care index (PC-SCI)

K Holly Mead,Sean Cleary,Yan Wang,Mandi L Pratt-Chapman,Hannah Arem

doi:10.1186/s12913-021-07356-6

K Holly Mead, Sean Cleary + Show 3 more

Open Access

https://doi.org/10.1186/s12913-021-07356-6

Copy DOI

Abstract

PurposeThis study presents the validation of an index that defines and measures a patient-centered approach to quality survivorship care.MethodsWe conducted a national survey of 1,278 survivors of breast, prostate, and colorectal cancers to identify their priorities for cancer survivorship care. We identified 42 items that were “very important or absolutely essential” to study participants. We then conducted exploratory and confirmatory factor analyses (EFA/CFA) to develop and validate the Patient-Centered Survivorship Care Index (PC-SCI).ResultsA seven-factor structure was identified based on EFA on a randomly split half sample and then validated by CFA based on the other half sample. The seven factors include: (1) information and support in survivorship (7 items), (2) having a medical home (10 items) (3) patient engagement in care (3 items), (4) care coordination (5 items), (5) insurance navigation (3 items), (6) care transitions from oncologist to primary care (3 items), and (7) prevention and wellness services (5 items). All factors have excellent composite reliabilities (Cronbach’s alpha 0.84-0.94, Coefficient of Omega: 0.81-0.94).ConclusionsProviding quality post-treatment care is critical for the long-term health and well-being of survivors. The PC-SCI defines a patient-centered approach to survivorship care to complement clinical practice guidelines. The PC-SCI has acceptable composite reliability, providing the field with a valid instrument of patient-centered survivorship care. The PC-SCI provides cancer centers with a means to guide, measure and monitor the development of their survivorship care to align with patient priorities of care.Trial registrationClinicalTrials.gov ID: NCT02362750, 13 February 2015

Highlights

Americans diagnosed with cancer today have a nearly seven in 10 chance of surviving 5 years, leaving a substantial population with unique health care needs
As survivorship care programs work to address the needs of this growing patient population, cancer researchers and providers are in need of guidelines and strategies to clearly define, measure and implement high quality, patient-centered survivorship care across all models of care [6, 9]
The purpose of this study is to develop and validate a survivorship care index to more clearly define and operationalize a patient-centered approach to survivorship care

Summary

Introduction

Americans diagnosed with cancer today have a nearly seven in 10 chance of surviving 5 years, leaving a substantial population with unique health care needs. Survivors suffer myriad physical and psycho-social consequences of cancer and its treatment, including pain, fatigue, anxiety, and depression, as well as practical concerns such as health insurance challenges and financial hardships. While some of these issues are short-lived, late-emerging and long-term effects, such as neurological sequalae, fatigue, cardiomyopathy, fertility issues, and long-term emotional distress, affect many survivors for years [3,4,5,6]. The unique challenges of cancer survivorship have created the need for a distinct, post-treatment phase of cancer care that shifts the focus from treating the disease to managing the chronic effects of cancer and focusing on the quality of life of survivors over the long term [3, 7, 8].

Objectives

Methods

Results

Conclusion