Preferences of Information Dissemination on Treatment for Bipolar Disorder: Patient-Centered Focus Group Study

Abstract

Background Patient education has taken center stage in successfully shared decision making between patients and health care providers. However, little is known about how patients with bipolar disorder typically obtain information on their illness and the treatment options available to them. Objective This study aimed to obtain the perspectives of patients with bipolar disorder and their family members on the preferred and most effectively used information channels on bipolar disorder and the available treatment options. Methods We conducted nine focus groups in Montana, New Mexico, and California, in which we surveyed 84 individuals including patients with bipolar disorder and family members of patients with bipolar disorder. The participants were recruited using National Alliance on Mental Illness mailing lists and websites. Written verbatim responses to semistructured questionnaires were analyzed using summative content analysis based on grounded theory. Two annotators coded and analyzed the data on the sentence or phrase level to create themes. Relationships between demographics and information channel were also examined using the Chi-square and Fisher exact tests. Results The focus group participants mentioned a broad range of information channels that were successfully used in the past and could be recommended for future information dissemination. The majority of participants used providers (74%) and internet-based resources (75%) as their main information sources. There was no association between internet use and basic demographics such as age or geographical region of the focus groups. Patients considered time constraints and the fast pace in which an overwhelming amount of information is often presented by the provider as major barriers to successful provider-patient interactions. If Web-based channels were used, the participants perceived information obtained through Web-based channels as more helpful than information received in the provider’s office (P<.05). Conclusions Web-based resources are increasingly used by patients with bipolar disorder and their family members to educate themselves about the disease and its treatment. Although provider-patient interactions are frequently perceived to be burdened with time constraints, Web-based information sources are considered reliable and helpful. Future research should explore how high-quality websites could be used to empower patients and improve provider-patient interactions with the goal of enhancing shared decision making between patients and providers.

Digital Health Literacy in Bipolar Disorder: International Web-Based Survey

“…Web and mobile-based (ie, smartphone) educational materials and self-management supports (referred to collectively as eHealth) may be accessed by individuals independently of health care services, circumventing barriers to treatment [12,13]. Unsurprisingly, individuals with BD are increasingly turning to eHealth resources: up to 75% of people with BD use the internet as a source of information regarding their illness and treatment options [14][15][16][17][18], and the majority of individuals with SMI report a willingness to receive support for mental health needs delivered via a computer or smartphone [19,20]. However, using such sources is not without risk: they may be difficult to understand, contain inaccurate or irrelevant information, be developed to sell products and services, or compromise a user's privacy [21].…”

Using Machine Learning Imputed Outcomes to Assess Drug-Dependent Risk of Self-Harm in Patients with Bipolar Disorder: A Comparative Effectiveness Study

“…The idea to include "no drug" and "no treatment" in the list of comparators in our study came from patients with BD who participated in several focus groups and were engaged in designing this research [30,31]. Doing so allowed us to address patient questions regarding the safety and effectiveness of avoiding pharmacotherapy.…”

The Current Quality of Web-Based Information on the Treatment of Bipolar Disorder: A Systematic Search

“…Information seeking is an important aspect of managing and coping with chronic disorders [36,37], and people living with BD have often expressed the need to obtain information about their illness [38][39][40][41]. Even though people living BD may prefer to get such information through face-to-face conversations with their physicians, as do patients with other mental and physical illness [40,[42][43][44], this may not always be feasible due to the limited time available for direct access to the physicians [41].…”

“…In the field of BD, several studies in the past have analyzed whether in people with BD the experience of seeking online health information had been useful and reliable [20,38,41,60]. According to some of these studies, persons living with BD and their families reported that finding relevant information is often a challenge because several guidelines provide conflicting information and the message is often couched in technical and complex terminologies [17,43,61].…”