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From patient-reported outcomes (PROs) to family-reported outcomes (FROs): Acceptability and perceived usefulness of routine screening in cancer care

Published online by Cambridge University Press:  14 March 2024

Sylvie Lambert*
Affiliation:
Ingram School of Nursing, McGill University, Montreal, QC, Canada St. Mary’s Research Centre, Montreal, QC, Canada
Katya Loban
Affiliation:
Ingram School of Nursing, McGill University, Montreal, QC, Canada St. Mary’s Research Centre, Montreal, QC, Canada
Anne-Sophie Gignac
Affiliation:
St. Mary’s Research Centre, Montreal, QC, Canada
Mona Magalhaes
Affiliation:
St. Mary’s Research Centre, Montreal, QC, Canada
Lydia Ould Brahim
Affiliation:
Ingram School of Nursing, McGill University, Montreal, QC, Canada
Sarah Chehayeb
Affiliation:
Ingram School of Nursing, McGill University, Montreal, QC, Canada
Sydney Wasserman
Affiliation:
Ingram School of Nursing, McGill University, Montreal, QC, Canada
*
Corresponding author: Sylvie Lambert; Email: sylvie.lambert@mcgill.ca

Abstract

Objectives

To explore the acceptability of screening for family-reported outcomes (FROs) among cancer caregivers (unpaid family members or friends who provide support to patients with cancer) and identify from their perspective the key components of a FRO screening program.

Methods

Using a qualitative descriptive design, semi-structured interviews were undertaken with 23 adult caregivers of people with cancer between 2020 and 2021. Interview questions focused on acceptability of FRO screening, types of FROs, timing/frequency of screening, preferred resources following screening, and communication of FROs to patients and clinicians. Participants were recruited in Canada. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis and constant comparison.

Results

Almost all caregivers welcomed FRO screening in usual care and viewed it as an avenue toward obtaining more resources. Other potential benefits of FRO screening included increased self-reflection and role acknowledgment. Caregivers prioritized screening for emotional symptoms, and most preferred that the results be shared with the patient’s treating team rather than their primary care provider. Caregivers did not want results to be shared with patients, instead favoring learning how best to discuss results with patients. Many spoke of a “one stop shop” containing all relevant information on caring for the patient (first) and for themselves (second). Opinions regarding timing and frequency of FRO screening differed. Periodic administration of FRO measures, with each one not exceeding 20 minutes, was deemed appropriate.

Significance of results

This study extends the concept of patient-reported outcome measures to caregivers, and findings can be used to guide the development of FRO screening programs.

Type
Original Article
Copyright
© The Author(s), 2024. Published by Cambridge University Press.

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