Abstract P3-16-02: Voice of cancer patient: Analysis of breast cancer patients' experience with PARP inhibitors
Authors: Aggarwal S , Sharma R , Singh M , Aggarwal A 
Published: May 2019

Abstract
Background:
Many breast and ovarian cancer patients have germline or somatic mutations in BRCA 1&2 genes. These proteins are important for repairing double-strand DNA breaks by homologous recombinational repair. In patients who have mutations in these genes, PARP is the major alternative for repairing single-strand DNA breaks. PARP inhibitors (PARPi) inhibit PARP, thereby causing cell death by accumulation of damaged DNA in cells. Many PARPi, including Olaparib, have been approved and used in treatment of metastatic ovarian cancer patients with BRCA 1&2 mutation.
Recently, Olaparib was also approved by the FDA for treatment of metastatic breast cancer patients with germline BRCA 1&2 mutation, and many other PARPi are in clinical trial. In this study we analyzed breast cancer patients' awareness, use and experience with PARPi s.
Many patients share their experiences on online forums which contain millions of freely shared messages. These can be used to analyze patient concerns and experiences. However, this data is unstructured and difficult to analyze. We used our automated system VoCP, that uses techniques from Big Data Science and Artificial Intelligence (deep learning, topic modeling, information retrieval, and natural language processing) to analyze these messages.
Methods:
We collected 15.13 million unique messages by 987,189 users from 37 unrestricted cancer forums that provide clinically relevant information. We built custom ontologies for breast cancer, various PARPi, chemotherapy and side effects, and then used our automated system VoCP to extract relevant information from these messages.
Results:
We found 1,536 breast cancer patients discussing PARPi. 459 patients mentioned use of PARPi whereas 706 patients shared the information about PARPi and 196 inquired about them. 176 patients mentioned that they were planning to use PARPi.
76 patients using PARPi mentioned having BRCA 1 or 2 mutation and 1 patient mentioned CHEK 2 mutation. 91 patients mentioned having triple negative cancer.
212 patients mentioned being treated on clinical trial and 10 mentioned being off trial. 162 patients mentioned use of chemotherapy with PARPi and 40 mentioned use of PARPi as single agent.
Specific PARPi: 47 mentioned Olaparib, 104 mentioned Valiparib, & Talazoparib, 6 rucaparib and 4 Niraparib. Most patient just mentioned “PARP inhibitor.” Some patients mentioned iniparib on clinical trial.
Side effects were reported by 60 patients. These include:
· Nausea: 14
· Fatigue: 15
· GI side effect: 7
· Thrombocytopenia: 5
· Anemia: 2
· Neutropenia: 2
· Neuropathy: 5
· Insomnia:2
99 patients mentioned PARPi were “effective,” 21 mentioned they were “somewhat effective” and 36 mentioned they were “ineffective.”
144 patient expressed positive sentiments, 30 patients expressed negative sentiments and 16 patients expressed neutral sentiment for PARPi.
Conclusion:
· There is increasing awareness and curiosity for PARPi in breast cancer patients as more patients are being tested for BRCA and other mutations.
· Among the users, PARPi are generally associated with low toxicity and positive sentiments.
· VoCP reliably provides meaningful insights from the patient's point of view; it also gives insight into unmet needs where more resources and research should be focused.
Citation Format: Aggarwal S, Sharma R, Singh M, Aggarwal A. Voice of cancer patient: Analysis of breast cancer patients' experience with PARP inhibitors [abstract]. In: Proceedings of the 2018 San Antonio Breast Cancer Symposium; 2018 Dec 4-8; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2019;79(4 Suppl):Abstract nr P3-16-02.