Researched by Belong.Life and published by ASCO
Authors: Eli Sapir, Benjamin W. Corn, Lior Hasid, Irad Deutsch, Daniel A. Vorobiof
Patient-centered healthcare has focused on incorporating the values of patients (Pts) during clinical decision-making. Accordingly, assessments are often executed with patient reported outcome measurements (PROMs). In the context of tumors located in a sexual organ, life quality may be predicated on the perception of the patient’s partner when such a relational dyad exists. Therefore, we created a “partner” reported outcome measurements (pROMs). Accordingly, we sought to query the interconnection of PROMs and pROMs in the setting of early breast cancer (EBC) by using a digital health technology application.
In this ongoing study, 93 EBC Pts and 18 partners, active members of Belong.life, a social engagement platform for cancer Pts and caregivers, replied anonymously and voluntarily to a targeted survey related to sexuality and intimacy parameters in the Pts and their partners. 72% of the partners were 50-69 years of age (yoa), 61% were Caucasian. 70% of the Pts were 50-69 yoa and 72% Caucasian. 72% of the Pts and 78% of the partners had college and university degrees. At diagnosis 78% of the Pts had Stages 1-2, 44% had breast conserving surgery, and most (78%) received chemotherapy.
We report the interim results of the first 14 patients-partner dyads. At the time of diagnosis, 86% of partners and 50% of Pts were very or extremely concerned about the patient’s health. Of note, 43% of Pts were not concerned at all or slightly concerned about their own health. With the passage of time, the concern about the patient’s health had decreased to 50% among the partners and 28% among the Pts. Regarding intimacy and sexuality issues prior to the EBC diagnosis, 64% of the Pts didn’t have any complaints but it changed dramatically after diagnosis with 50% mentioning less sex drive and 40% less intimacy. In the partners group 67% didn’t have complaints before the diagnosis but 28% voiced complaints after the diagnosis. Only half of Pts and partners felt they could speak freely about their mutual feelings. Only 23% of Pts and 11% of partners indicated they would agree to seek professional help for issues related to sexuality and intimacy. Ultimately, 71% of Pts and 79% of partners felt happy with each other.
Partners were very concerned about the health of Pts; however, the dyad was not always synchronized. Notwithstanding it, the dyad adjusted their concerns during the course of treatment. Body changes had modest effect on the relationship. While dissatisfaction of sexual activity was evident it did not significantly affect the feelings of patients and partners towards each other. The development of pROMs could re-synchronize the dyad thereby creating a more meaningful cancer journey.