Patients recommend patience: ovarian cancer survivors describe the PARP inhibitor experience

Objectives: Given the multiple approvals for poly(adenosine diphosphate-ribose) polymerase inhibitors (PARPi) in treatment and maintenance for first-line and recurrent ovarian cancer, most patients diagnosed with ovarian cancer will receive a PARPi at some point during their treatment continuum. Patient-reported outcomes are increasingly considered when assessing treatment effect. The purpose of this study is explore ovarian cancer survivors’ self-reported experiences with PARPi. Methods: A 26-question survey was shared via survivor networks and social media with women with a current or prior diagnosis of ovarian cancer who had received PARPi. The survey was distributed between 12/6/2019-2/15/2020. Participants completed informed consent and all collected data were anonymous. Free-text responses were analyzed by two members of the study team to identify themes using a codebook. Both manifest and latent coding were used. Results: Two hundred and three women visited the survey site and 160 (79%) completed the survey. Twenty-nine percent (47) of participants were receiving a PARPi for front-line maintenance, 58% (92) for maintenance following recurrence and 13% (21) for treatment of recurrent disease. Among the 153 patients with genetic testing, 89 (58%) had a pathogenic mutation (BRCA1 - 56, BRCA2 - 19, other - 14). When asked about their first PARPi, 55% (88) of patients were treated with olaparib, 33% (52) niraparib, 11% (18) rucaparib and 1% (2) other PARPi. Fifteen women (9%) received more than one PARPi. During first treatment with PARPi, women reported a median of two treatment side effects (range 0-9). The most commonly reported side effects included fatigue (84, 53%), nausea (72, 45%), neutropenia (35, 22%), aches/pain (22, 14%), stomach pain (21, 13%), thrombocytopenia (20, 13%) and bowel changes (20, 13%) (Figure 1). In free-text response to the question ‘What advice would you share with someone taking a PARP inhibitor for the first time?’, ovarian cancer survivors identified patience during the acclimatization phase, early proactive management of side effects, and communication with one's medical team as critical. Download : Download high-res image (77KB) Download : Download full-size image Conclusions: Women with ovarian cancer on PARPi therapy experience a multitude of side effects, and usually more than one. Proactive management of these side effects is essential to increase tolerability and compliance. The self-reported experience of survivors on PARPi, as captured in this study, provides ‘real world’ description of the PARPi treatment course, which may be valuable when setting expectations for patients and engaging in shared decision-making about PARPi. Women who have successfully managed the acclimatization phase may be especially helpful in guiding women beginning PARPi treatment.