Patient Engagement for Metastatic Breast Cancer Patients: WhatsApp Counseling

Background: Breast cancer accounts for 1/4th of all female cancers in India. Lack of awareness, poor diagnostic facilities, low priority for women's health cause late stage presentation. Younger average age, aggressive disease, incomplete or abandoned treatment, results in large numbers of metastatic breast cancer cases (MBC). Most people have smartphones and access to the Internet. We have created a WhatsApp based counseling program where patients can be active or passive while benefiting from others’ experiences. Aim: MBC patients cannot share their fears and innermost feelings with family members. It is therefore beneficial to create a secure, nonjudgmental, empathetic group having personal experiences and knowledge about MBC. Such interactions reduce social isolation, promote hope and optimism about the future. Methods: Doctors, social workers, nurses and administrators at 5 hospitals provided phone numbers of MBC patients who were invited to join. Groups of 6-10 women were created. A 14 week program was created alternating interventions for physical and psychological problems. Results: 50% patients contacted refused to participate. They had no desire to interact with others, had sufficient information, wanted to maintain secrecy. Some joined but left due to negative comments posted by a participant. Confidentiality could not be guaranteed since software can determine phone owners' identity. Participants were given rules, but there were many infractions. Positive outcomes: Information on healthy lifestyles, yoga, inspirational and spiritual messages, recipes, fashion, makeup tips, prostheses suppliers; music, books, movies, articles from newspapers, journals, information about workshops, seminars, meetings were shared. Inputs from physiotherapists, dieticians, CBT intervention from counselors was valued. Members were reminded about exercise and care of affected arm. Financial issues, sexual problems, advice on reconstruction were some beneficial topics. Patients arranged and enjoyed physical meetings. Negative outcomes: Patients posted information on unproven cures, personal comments about doctors. Patients on treatment asked questions better directed to their doctor. One patient asked for funds. Postings through the night disturbed those who had not muted the conversation. Irrelevant forward, videos and generic messages were a distraction. Much tact was required to prevent degeneration of the conversation. Loss of a group member was a setback for all members. Conclusion: The role of a counselor has changed greatly in recent times. Side effects are minimized, hair loss is less traumatic and patients find information on the Internet. Greater acceptance, lesser stigma means that support groups are not seen to be essential. The WhatsApp group replaced physical meetings. Women with MBC experience trauma due to physical symptoms, psychological and spiritual distress. The group allowed them to share problems with other women in similar situations.