Aims
A subset of women with recurrent ovarian cancer experience durable benefit from PARP-inhibitors (PARP-i), but no consensus exists on optimal treatment duration. We explored how exceptional responders (PARP-i long-term users for 5+ years) approached decisions to continue or cease treatment.
Methods
An inductive qualitative study design using reflexive thematic analysis was applied. English-speaking women with recurrent ovarian cancer who had received PARP-i for 5+ years were recruited internationally Jan-June 2026. Semi-structured interviews were conducted via Zoom or telephone exploring their cancer journey, experience of long-term PARP-i use, and factors influencing decisions to continue or cease treatment.
Results
Twenty-one women from six countries, aged 56-83, with higher health literacy levels participated; ten continued PARP-i, eleven had stopped. Decisions to continue or cease PARP-i were influenced by patient-driven influences (treatment tolerability, fear of recurrence, perception of PARP-i as a lifeline) and external influences (empirical evidence, peer anecdote regarding acceptable vs unacceptable risk, access to PARP-i, and clinical response), which existed across geographical contexts. These influences existed within shifting identities (cancer patient, survivor, exceptional responder), uncertainty (fear of cancer recurrence, lack of clear evidence of risks), and long-term risk tolerance (fear of known versus unknown). The patient-clinician relationship (perceived partnership, trust, likeability) was key in decision-making. While participants felt they were the decision-maker, in the final decision, they indicated deferring to clinician recommendations (illusion of autonomy). Participants felt uncertainty around long-term benefit or risk of PARP-i continuation or cessation. They pointed to an absence of available research due to the novelty of long-term PARP-I therapy use, rather than lacking access to existing information.
Conclusions
Long-term PARP-i decision-making for exceptional responders was complex, informed by patient-driven and external influences underpinned by the patient-clinician relationship, in a context of uncertainty. Decision-support resources addressing long-term benefit, late toxicity and practical considerations may support these decisions.