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May 29, 2026Journal of Clinical Oncology0 citations

PROgress Tracker Breast Cancer Registry: Reporting worry of illness from a longitudinal peer-led, national patient-reported outcomes (PRO) registry.

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SLShaniah LeducKCKimberly CarsonAAAlison L. Allan

Key Result

Longitudinal patient-reported outcomes in breast cancer survivors showed highest worry for hereditary risk (40.4%), with younger (<50 years) and Stage IV patients reporting greater worry intensity.

Key Points

  • This study aims to assess the nature and intensity of illness worry among breast cancer survivors based on various demographics and clinical characteristics.
  • Launched in 2023, enrolling Stage 0-IV breast cancer survivors over 10 years.
  • Participants complete validated patient-reported outcome measures via a digital platform quarterly.
  • AI-assisted real-world analysis was utilized for processing FACT-B PROM data.
  • 823 participants enrolled, with 186 participating for ≥2 years.
  • Highest worry reported regarding hereditary risk (40.4%), stress impact (31.7%), and worsening condition (17.4%).
  • Participants under age 50 showed higher worry levels compared to those over 50, with Stage IV participants exhibiting 66.7% high worry.

Study Design

Type

Observational (n=823)

Multicenter

Yes

Structured PICO

P
Population
823 Canadians with Stage 0-IV breast cancer enrolled in the PROgress Tracker Breast Cancer Registry
O
Outcome
Longitudinal worry reported using 3 factors from FACT-B PROM (hereditary risk of family members, if stress impacts illness, and if participant's condition will worsen)patient reported

Breast cancer survivors experience significant longitudinal worry regarding hereditary risk and illness progression, particularly among younger patients, those with advanced stage, and TNBC, highlighting the need for tailored psychosocial support.

Abstract

11112 Background: PROgress Tracker Breast Cancer Registry is a national, ethics approved non-interventional patient-reported outcome measure (PROMs) registry, using a peer-to-peer model directed by patient advocacy group Breast Cancer Canada. Here, initial results report breast cancer survivors nature of cancer illness worry and intensity based on age, stage and molecular subtype at diagnosis. Methods: PROgress Tracker was launched in 2023, with enrollment over 10 years of Canadians with Stage 0-IV breast cancer. Participants self-refer and complete a series of validated PROMs (demographic, socioeconomic, clinical, global wellbeing) via a digital platform, capturing current status on a quarterly basis for up to 10 years. Real-world analysis assisted by AI ( January 2026; Claude Opus 4.5, manufacturer: Anthropic; data extraction, statistical analysis with means, percentages, patient-level aggregation, stratification by clinical variables, longitudinal pattern analysis and visualization; all outputs validated against source data ) of FACT-B PROM data capture and analysis methodology was used. Results: To date, 823 participants have enrolled with 186 participating for ≥2 years. From participation start, longitudinal worry is reported using 3 factors from FACT-B PROM; hereditary risk of family members (HR), if stress impacts illness (SI), and if participant’s condition will worsen (CW). Highest degree of reported worry scores was in HR 40.4% (n = 74), SI 31.7% (n = 59) and CW at 17.4% (n = 32). Worry intensity varied by age, stage and molecular subtype. Participants diagnosed 50 years (HR 37.1% mean 1.92; SI 25.9% mean 1.63; CW 14.3% mean 1.32). Stage IV participants show 66.7% high worry (CW and HR) compared to stage I at 8.5% (CW). Molecular subpopulations show higher worry in HR- / HER2- (TNBC) n = 34 (HR 48.5% mean 2.24; SI 38.2% mean 2.00; CW 17.6% mean 1.59) compared to HR+ / HER2- n = 81 (HR 37.5% mean 2.04; SI 35.4% mean 1.90; CW 17.3% mean 1.41) and HR+ / HER2+ n = 13 (HR 30.8% mean 2.08; SI 23.1% mean 1.77; CW 7.7% mean 1.38). Non-linear trajectory over time shows 24% (n = 183) experienced high worry at registry entry, declining at 12 months to 15.8% with a secondary peak at 18 months in 21.7% of participants. Conclusions: Patient-reported outcomes show the burden of worry by breast cancer survivors for hereditary risk to family and individuals’ illness. These findings offer directional insights for psychosocial screening, care resources and tailored education throughout survivorship.

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Cite This Study

Leduc et al. (2026) conducted an observational in Breast cancer (n=823). Longitudinal patient-reported outcome measures (PROMs) tracking was evaluated on Nature and intensity of cancer illness worry (hereditary risk, stress impacts illness, condition will worsen). Longitudinal patient-reported outcomes in breast cancer survivors showed highest worry for hereditary risk (40.4%), with younger (<50 years) and Stage IV patients reporting greater worry intensity.

synapsesocial.com/papers/6a192e39fab5b468c441747chttps://doi.org/10.1200/jco.2026.44.16_suppl.11112
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