Evidence map›Paper›PMID 39648229›Full record

ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2024

Engaging survivor and oncologist stakeholders to develop a patient-reported outcome assessment to use as a component of survivorship care.

Heather B Neuman, Kristine L Kwekkeboom, Amye J Tevaarwerk, Kat Phelps, Jennifer L Tucholka, Courtney Maxcy, Catherine R Breuer, Jessica R Schumacher

Abstract read
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Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

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2 · The registry

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

8 authors.

Heather B NeumanDepartment of Surgery, University of Wisconsin, Madison, WI, USA. neuman@surgery.wisc.edu.
Kristine L KwekkeboomCarbone Cancer Center, University of Wisconsin, Madison, WI, USA.
Amye J TevaarwerkDepartment of Oncology, Mayo Clinic, Rochester, MN, USA.
Kat PhelpsWisconsin Network for Research Support, University of Wisconsin, Madison, WI, USA.
Jennifer L TucholkaDepartment of Surgery, University of Wisconsin, Madison, WI, USA.
Courtney MaxcyDepartment of Surgery, University of Wisconsin, Madison, WI, USA.
Catherine R BreuerDepartment of Surgery, University of Wisconsin, Madison, WI, USA.
Jessica R SchumacherDepartment of Surgery, University of North Carolina, Chapel Hill, NC, USA.

Funding

University of Wisconsin Institute for Clinical and Translational ResearchUL1TR002373 · NCATS · UNIVERSITY OF WISCONSIN-MADISON · PI ELIZABETH S BURNSIDE, Allan R. Brasier · 2017 to 2026
$75.9M
NCATS NIH HHS UL1 TR002373Wisconsin Partnership Program 3086
6 · The paper itself

Abstract

purposeIncorporating patient-reported outcomes (PROs) into survivorship care may improve the comprehensiveness of follow-up. The objective was to engage stakeholders to develop a PRO assessment of survivors' symptoms and concerns for use during breast cancer follow-up.

methodsWe convened patient and oncologist stakeholder advisory groups to develop an initial PRO assessment including survivorship domains of importance, measurement instruments, and clinically significant thresholds, and revise the assessment based on feedback from community focus groups and two rounds of iterative pilot testing with survivors.

resultsStakeholders identified key domains and measurement instruments, including recurrence symptoms, treatment side effects, adherence, mental health, and sexual health. Ninety-four survivors completed the PRO assessment in the initial pilot test (median age 62 years, median 2 years from diagnosis). Most (89/93) reported questions were easy to understand. The level of missingness was low. The most common threshold-level symptoms/concerns were hot flashes (46%), fatigue (35%), back pain (31%), joint pain (31%), and anxiety (30%). The PRO assessment was revised to clarify symptom causality and desire to discuss with a provider. In a follow-up pilot study with 20 survivors, the most common symptoms were chest/breast discomfort (50%) and anxiety (25%).

conclusionsWe leveraged stakeholder input to develop a comprehensive PRO assessment to use to assess breast cancer survivors' well-being. Our PRO assessment is acceptable to survivors. Future research will focus on the integration of the PRO assessment into clinical care.

Indexed as

Breast NeoplasmsCancer SurvivorsPatient Reported Outcome MeasuresSurvivorshipAdultAgedFemaleFocus GroupsHumansMiddle AgedOncologistsPilot ProjectsStakeholder ParticipationSurveys and QuestionnairesBreast cancerPatient-reported outcomesStakeholder engagementSurvivorship

Identifiers

PMID39648229
PMCPMC12211988

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.