Abstract P1-10-07: PROgress Tracker Breast Cancer Registry: Feasibility of a Longitudinal Peer-Led, National Patient-Reported Outcomes (PRO) Registry
Notice bibliographique
Résumé
Abstract Objective: PROgress Tracker Breast Cancer Registry is a national longitudinal, non-interventional patient-reported outcome measure (PROMs) registry, using a novel, peer-to-peer engagement and retention model directed by patient advocacy group Breast Cancer Canada and database managed by the POET Program. Here, we report initial PROMs results, demonstrating feasibility to amplify the patient voice and inform evidence-based care across Canada. Methods: PROgress Tracker, launched in October 2023 has a 10-year enrollment goal of Canadians with Stage 0-IV breast cancer. Participants self-refer for registry inclusion and complete a series of validated PROMs via a digital platform every three months for up to 10 years. Participants self-report demographic, socioeconomic and clinical data (age, social structure, employment, stage, molecular tumor markers, treatments, treatment-related impacts (adverse events, health-related quality of life) and global measures of wellbeing (mental health, social support, financial wellbeing, sexuality, physical functioning) through a series of questionnaires and PROMs. PROMs are dynamic, tailored to the participant’s current status at each data collection timepoint. Results: To date, 485 individuals have enrolled in PROgress Tracker, representing all Canadian geographical regions, including 17% in rural/remote locations. Three-month follow up survey response was 65%. Socioeconomic data was reported by 399 participants: 94% identify as Caucasian, 28% report an active caregiving role to children or others, 61% are currently employed; 52% reported financial stress. 251 participants provided diagnostic, global functioning and treatment-specific PROMs data. Diagnoses spanned 1997-2024 (median 2021). 76% reported early/localized stage (Stage 0 - II) disease at diagnosis. 45% reported receiving BRCA mutation testing, of which 15% were positive; 7% report a recurrence, and 4% have metastatic disease. 91% received oncological resection, 71% radiation therapy to the breast (RT); 76% systemic anti-cancer therapy (SACT) (hormonal, cytotoxic, immune checkpoint inhibitors or targeted therapies). Participants reported impairment in overall health-related quality of life (median FACT-B Total score 82.6 out of 148). 16% of participants reported moderate-severe anxiety, while 22% reported moderate-severe insomnia. 36 participants currently on SACT reported at least one adverse event, with 22 (61%) reporting adverse events ‘frequently’ or ‘always’ [PRO-CTCAE Systemic Therapy Subset]. Participants ever having radiotherapy (RT) reported moderate function (median 52) and low symptom (median 28) scores [EORTC-QLQ-BR23]; 78% of participants currently receiving RT reported mild adverse events, while 44% reported serious adverse events. Conclusion: Capturing the lived experience throughout a breast cancer journey and integrating the use of validated PROMs into precision medicine is integral to driving patient-centered change in healthcare systems. Initial directional data from PROgress Tracker has demonstrated ability to capture a wide range of real-world evidence, suggesting that longitudinal digital capture, peer-to-peer involvement and real-time PROMs acquisition is feasible and can yield data of appropriate caliber to inform best practice, health care policy, and identify additional supports to improve outcomes. Efforts in recruitment and retention strategies are a current focus. Citation Format: Omar F. Khan, Doris Howell, Shaniah Leduc, Kimberly Carson, Michelle Dean, Amanda JW Gibson. Progress Tracker Breast Cancer Registry: Feasibility of a Longitudinal Peer-Led, National Patient-Reported Outcomes (PRO) Registry [abstract]. In: Proceedings of the San Antonio Breast Cancer Symposium 2024; 2024 Dec 10-13; San Antonio, TX. Philadelphia (PA): AACR; Clin Cancer Res 2025;31(12 Suppl):Abstract nr P1-10-07.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,041 | 0,049 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,004 | 0,001 |
| Communication savante | 0,003 | 0,002 |
| Science ouverte | 0,003 | 0,004 |
| Intégrité de la recherche | 0,001 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,014 | 0,005 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».