Abstract P6-11-02: Voice of cancer patients: Analysis of patient concerns regarding scalp cooling devices for prevention of chemotherapy induced alopecia
Authors: Aggarwal S , Sharma R , Sharma R , Aggarwal A 
Published: February 2018

Adjuvant chemotherapies for breast cancer cause hair loss in majority of patients. Although Chemo Induced Alopecia (CIA) is temporary, is distressing for many patients and about 7% patients treated with docetaxel experience permanent hair loss. Scalp cooling devices (SCDs) have been shown to reduce hair loss in patients receiving chemo.

Many patients share their experiences in online forums as freely shared messages and can be used to analyze concerns regarding CIA and SCDs. We use our automated system, VoCP, to analyze these messages and assess the utilization and efficacy of SCDs, concerns and associated barriers.

Method: We collected 15.13 million unique messages (987,189 patients) from 37 cancer forums that provide clinically relevant information; we built custom ontologies for chemo drugs and regimens, hair loss, SCDs, supportive therapy and efficacy. We then used VoCP (using techniques from Artificial Intelligence - deep learning, information retrieval and natural language processing) to extract relevant information.

Results: Out of 15.13 million, 17,966 messages from 4,258 patients discussed the use of SCDs during chemo. 16,527 of these were inquiring about SCDs, e.g., do SCDs work, side effects, Difficulty in use, risk of scalp and brain metastasis, cost and insurance coverage, ease of obtaining and manufacturers.

2,213 messages from 817 patients discussed SCDs with Docetaxel, 1,470 from 687 patients discussed with FEC/AC, and 517 from 249 patients discussed with AC/Taxol.

In 1,439 messages, 668 distinct patients who used SCDs mentioned that, they were able to keep 50-75% of their hair but experienced significant hair-thinning. Most users were satisfied with SCDs' use and would prefer them over loosing hair completely; comments regarding side effects, barriers and advice included:

· Headaches, shivering, frost-bite, heaviness, neck and shoulder discomfort, chills, brain freeze, scalp pain, migraine, drowsiness, dizziness and cold; May use Lorazepam, Ibuprofen and Acetaminophen.

· Use mittens/hand-gloves, scarves, blankets and heating pads to keep body warm and avoid shivering

· Use cold caps during and 3-5 hours after chemo; change them every 15-30 minutes

· Cold caps with varying temperatures - warmer in front and sides for ear and forehead protection – may help; trim long hair

· For cold caps, either the facility needs to provide a freezer or patients need to bring their own

· Penguin cold caps are most common (2,055 messages) but monthly rent is $500-$600

· Patients can buy Elastogel caps (918 messages) for about $100

· Alternatives include icepacks/wrap-arounds provided by companies such as ElastoGel

· For single cap cooling devices such as DigniCap (337 messages) and Paxman (434), facility has to provide the system

· Rapunzel Project (171 messages) can help with scalp cooling gear, freezers and counseling; 79 SCD users mentioned getting their help

Discussion: Despite significant discomfort, cost and inconvenience, many patients are satisfied with SCDs' use for CIA. More programs like Rapunzel project are needed to help patients.

By analyzing millions of messages, VoCP provides meaningful insights into patients' treatment and concerns and gives insight into unmet needs for further research and resources.

Citation Format: Aggarwal S, Sharma R, Sharma R, Aggarwal A. Voice of cancer patients: Analysis of patient concerns regarding scalp cooling devices for prevention of chemotherapy induced alopecia [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr P6-11-02.