Abstract
Prognostic factors have important utility in various aspects of cancer surveillance, including research, patient care, and cancer control programmes. Nevertheless, there is heterogeneity in the collection of prognostic factors and outcomes data globally. This study aimed to investigate perspectives on the utility and application of prognostic factors and clinical outcomes in cancer control programmes. A qualitative phenomenology approach using expert interviews was taken to derive a rich description of the current state and future outlook of cancer prognostic factors and clinical outcomes. Individuals with expertise in this work and from various regions and institutions were invited to take part in one-on-one semi-structured interviews. Four areas related to infrastructure and funding challenges were identified by participants, including (1) data collection and access; (2) variability in data reporting, coding, and definitions; (3) limited coordination among databases; and (4) conceptualization and prioritization of meaningful prognostic factors and outcomes. Two areas were identified regarding important future priorities for cancer control: (1) global investment and intention in cancer surveillance and (2) data governance and exchange globally. Participants emphasized the need for better global collection of prognostic factors and clinical outcomes data and support for standardized data collection and data exchange practices by cancer registries.
Highlights
Prognosis is commonly referred to as a “probability or risk of an individual developing a particular state of health over a specific time, based on the clinical and non-clinical profile” [1]
Ten individuals, including those working in cancer registries and experts in global cancer control research, were invited to participate in semi-structured interviews
Participants suggested prioritizing the collection of outcomes, such as cancer recurrence, patient-reported outcome measures (PROs), and quality of life (QOL), rather than mortality data, which are already comprehensively collected in most regions
Summary
Prognosis is commonly referred to as a “probability or risk of an individual developing a particular state of health (an outcome) over a specific time, based on the clinical and non-clinical profile” [1]. Prognostic factors in cancer may be used to determine certain outcomes [1,2], and numerous factors can influence the clinical outcome, including the tumour profile, the anatomic disease extent, the patient characteristics—with co-morbidities and treatments—and the social determinants of health [3,4]. Treatment decisions depend on the complex interplay between disease-related factors (e.g., extent of disease), patient factors, as well as treatment risks, efficacy, and toxicity [5]. Efforts to develop a standard set of prognostic measures to improve clinical predictions for cancer remains a significant challenge [8]. Collaborative efforts between the American Joint Commission on Cancer (AJCC) and the Union for International
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