Susanne Dieroff Hay Calls for PROMs to Become a Core Part of Cancer Care

On 13 July 2026, Europa Donna Board Member and President of Bröstcancerförbundet Susanne Dieroff Hay brought a powerful patient perspective to the European Cancer Organisation’s Community 365 Roundtable on patient-reported outcome measures (PROMs). The event gathered more than 150 participants to discuss their use in clinical care, research, regulation and policy.

Susanne stressed that, as more people live longer with breast cancer and prolonged treatments, survival cannot be the only measure of success. Patients experience cancer through its impact on their ability to work, sleep, care for their families, maintain relationships and live a life they value.

PROMs capture these experiences directly, providing essential evidence on symptoms, treatment toxicity and health-related quality of life. As Susanne explained: “PROMs are the instrument; health-related quality of life is what we learn from it.”
Traditional clinical measures such as tumour size and survival do not fully reflect the effects of fatigue, pain, neuropathy, cognitive changes, anxiety, sexual health concerns or financial strain. PROMs can therefore support more meaningful shared decision-making and help balance treatment efficacy with tolerability in both curative and metastatic settings.

Susanne called for quality of life to be included more consistently as a co-primary or key secondary endpoint in clinical trials, particularly where treatment benefits are modest, toxicities are long term or treatment is palliative. Her message to decision-makers was clear: PROMs should not simply be accepted; they should be expected

Europa Donna advocates for PROMs to be routinely integrated into trials, HTA and reimbursement processes, cancer registries and clinical care. Results should be published alongside efficacy data, communicated in patient-friendly formats and used to inform decisions—not merely collected.

Susanne concluded with a powerful reminder: we should no longer ask only whether a treatment works against the tumour, but also whether it works for the person living with breast cancer.