Patient-Relevant Experiences and Impacts of Acute Myeloid Leukemia: Evidence from Online Social Networks-Based Qualitative Research

Objective:

To gather and analyze unsolicited disease experiences and needs of medical providers, patients, and caregivers' for adult Acute Myeloid Leukemia (AML) based on US Social Media conversations.

Methods:

Using treatment related and disease specific search terms, conversations from about 200 million US sources on the Internet including blogs, forums, and social network sites were gathered. The data were then grouped according to posts from patients, caregivers, physicians, nurses, and advocacy groups. Experiences, expectations, needs, and perceptions were then identified and analyzed.

Results:

About 7,000 online posts were collected for adult AML patients during 2^nd half of 2014. Additional searches were conducted in key patient and caregiver sources, and forums that led to posts from 80 adult patients and/or caregivers. The majority of adult patients referenced in online posts and discussions (80%) were under the age of 65, and 20% were older than 65 years. In caregiver forums/communities, 60% of online activity was from caregivers and 40% from patients. Caregivers assumed more of the information-seeking responsibilities when patients relapsed and/or declined physically. Patients and caregivers demonstrated the greatest need for information and support during chemo induction and remission phase. Approximately 25% of the patient and caregiver online (post) activity occurred while the patient was in the chemo induction phase, and about another 25% occurred while the patient was in remission. Remission was noted as the most emotionally challenging stage of AML, as patients and caregivers were unprepared and unsupported for the whole disease journey.

In general, patients and caregivers were seeking disease information, emotional support, setting treatment and recovery expectations, and comparing similarity of their experience with others. This information was obtained from few active online patient/caregiver forums/communities, which suggests a lack of practical patient-focused education and support via online and offline venues.

Active patients and caregivers would also seek information about treatments centers, typically related to pursuing a transplant or less frequently, clinical trials. Recommendations from patients and caregivers were based on personal experiences and overall reputation within these online communities. In these forums/communities, there was limited knowledge of ongoing clinical trials, and new treatments in development.

In this study, medical providers were active primarily on Twitter, and their posts (tweets and retweets) focused on new treatment developments, especially around medical conferences.

Conclusions:

AML patients and caregivers were active in seeking online resources and social support. The clinical community could be more actively engaged with the online AML community to support patient journey.