Special thanks to Marcella Origgi, Selene Vasco & Andrea Emancipato from Janssen Cilag S.p.a.
Introduction: Onco-hematological diseases are ones of the most widespread worldwide types of cancer. Affected people usually manifest different forms of distress, such as the physical, psychological, spiritual and existential ones. So, a strategic way to fully take care onco-hematological patients is to identify their unmet needs in all their quality of life dimensions and to target them with adequate interventions. In the last years, Internet has represented a revolution respect to health because it has become the principal tool used by patients to research information. Furthermore, through the Social Network, it represents a powerful communication tool, through which users can interact each other. Being online on Facebook patients can play an active role in their care process, researching information, sharing own needs, and interacting each other. Especially in the oncological field, E-health represents an opportunity for patients to narrate their illness stories and experiences in a virtual context of emotional acceptance and sharing. At the same time, E-health could be used as a precious instrument to target a wide range of patients' unmet needs and improving the quality of their care and life.
Objective: To analyze the contents of a social network page dedicated to the onco-hematological diseases, developed by Insight Generation Project, and its users' utilization, in order to evaluate their unmet needs and approach to the page.
Materials and Methods: The page contents, such as users' responses to the posts published on the page, were analyzed. Contents of the page, from its opening in January 2016 to June 2019, were considered. Descriptive statistics and content analysis were performed. Users' comments were clustered and categorical variables were created, according to the emerging themes. Statistical analysis was executed with software SPSS Statistics Version 24.0.
Results: A total of 348 comments to posts were analyzed. 117 users were identified as patients, who were most affected by multiple myeloma and acute myeloid leukemia in acute phase. Seventy-two users were caregivers, and 43 of them were caregivers of deceased patients. The most emergent unmet needs were relational (n=234), psychological (n=232) and informative/communicative (n=113). The most affected quality of life spheres were the psychological (n=237), the relational (n=228) and the physical one (n=100). Users expressed most angry, sadness and concern. They tended to address most other users with motivational messages of support, encouragement and relief. So, most were comments of sharing and support, while others were informative/communicative. The most required information regarded the course of the disease, the treatments and the lifestyles. Posts most liked, shared and commented were on chronic lymphatic leukemia, on acute myeloid leukemia, on hematological cancer diagnosis and therapies, but also on patients needs and on the management of negative emotions.
Conclusions: The social network page represents a virtual place for sharing experiences, emotions and psychological suffering, creating interpersonal relationships and group interchanges and providing reciprocal emotive support in a commonality context. Respect to palliative care, it could be also a useful resource for bereaved caregivers. Moreover, users benefited from the page to obtain medical/assistance information, playing an active role in their care process. So, the page resulted a powerful communicative tool offering opportunities of learning, interaction, and sharing of experiences and feelings. It well represents the E-health contribute to patients with life-threatening diseases and their caregivers. Finally, the analysis of the contents of virtual communities could contribute to the process of care through targeting patients' unmet needs and satisfying them with the promotion of adequate interventions.
Vitolo:Juno Therapeutics: Membership on an entity's Board of Directors or advisory committees; F. Hoffmann-La Roche: Speakers Bureau; Janssen: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Novartis: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Abbvie: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Celgene: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Kite: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Gilead: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau.
Author notes
Asterisk with author names denotes non-ASH members.
