
==== Front
Discov Ment Health
Discov Ment Health
Discover Mental Health
2731-4383
Springer International Publishing Cham

39254896
91
10.1007/s44192-024-00091-4
Research
Health concerns, access to care, and trust in research and researchers among community members with bipolar disorder
http://orcid.org/0009-0002-0909-8502
Conger Christian christianconger@ufl.edu

http://orcid.org/0000-0001-5643-8536
Cottler Linda B.
https://ror.org/02y3ad647 grid.15276.37 0000 0004 1936 8091 Department of Epidemiology, Colleges of Public Health and Health Professions and Medicine, University of Florida, Gainesville, FL USA
10 9 2024
10 9 2024
12 2024
4 1 346 12 2023
29 8 2024
© The Author(s) 2024
2024
https://creativecommons.org/licenses/by-nc-nd/4.0/ Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.
Background

Data are needed on differences in community-dwelling populations with bipolar disorder (BP) regarding trust in research and access to care. We characterized community members by lifetime history of bipolar disorder. We hypothesized that those with BP would have less trust in research, visit a health provider less, and participate less in research than those without BP. We also hypothesized that those with BP would be more likely to have a history of marijuana (MJ) use.

Methods

A cross-sectional design was used for this analysis. The study population consisted of 12,489 members (78.0%) from the HealthStreet community engagement program who were interviewed by a Community Health Worker about health history and demographics.

Results

Among the sample, the rate of BP was 10.6% (n = 1326). Those reporting BP were more likely than those who did not (n = 11,163), to report muscle, bone, and mental health problems, to be younger, female, to have visited the doctor in the past 12 months, to be interested in participating in research, and be current MJ users. Trust did not differ between BP groups.

Conclusions

Our analysis found that persons with BP had higher access to care and more interest in research, thus our primary hypothesis was rejected. Our secondary hypothesis, that persons with BP were more likely to have a history of MJ use was upheld. These findings are important because they address a crucial gap in the literature surrounding BP and lay the groundwork for future community-level research.

Keywords

Bipolar disorder
Trust
HealthStreet
Community engagement
Marijuana
issue-copyright-statement© Springer Nature Switzerland AG 2024
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pmcIntroduction

The American Psychiatric Association defines bipolar disorder (BP) as “a brain disorder that causes changes in a person’s mood, energy, and ability to function.” [1] Despite the substantial burden that BP presents to both people who have it, and society as a whole [2–4], research and treatment surrounding the disorder continue to fall behind, especially when compared to other disorders such as schizophrenia or depression [5–7]. The lifetime prevalence of this disorder is estimated to be around 2.4% in the US [8].

The cornerstone for the current clinical description of BP was coined by nineteenth century German psychiatrist Emil Kraepelin in his description of mania [9]. The International Classification of Diseases (ICD) and the Diagnostic and Statistical Manual of Mental Disorders (DSM) followed Kraepelin’s description for some time, until in 1994, where the DSM-IV separated BP into two major categories, BP-I and BP-II. BP-II was a separate diagnosis to that of BP-I, and while the diagnostic criteria between the two are similar, the primary difference is that BP-II required a shorter minimal duration for symptoms, and there was no need for significant role impairment during hypomania. While this criterion remains somewhat controversial, it has been largely accepted, and was even included as a diagnostic category in the ICD-11 in 2019 [9]. The modern diagnostic systems of the ICD-11 and the DSM-V additionally differ in their approach to mixed symptoms in BP. In this case, the ICD-11 still classifies mixed states as an episode, requiring only several prominent symptoms of the countervailing mood state. The DSM-V, however, is stricter, and requires a week or more with full syndromic criteria for both manic and depressive episode, and encompasses a broad conception of mixed symptoms in either hypomanic, manic, or depressive episodes. These competing definitions are important to keep in mind, as the report of BP in this analysis is self-reported and could encompass either or both of these major diagnostic systems.

While current literature examines BP in clinical populations, there is sparse literature that examines BP at the community level to develop interventions for BP. Proven interventions are likely to be less effective on a population that is uncooperative and unwilling to access healthcare. While socio-economic indicators are often used in conceptual models to help us understand these determinants, lifestyle risk factors have also been used in past models regarding predictive factors of health [10].

It was hypothesized that those who place less trust in research and have less access to healthcare and healthcare research would be more likely to report a history of BP than their counterparts. This hypothesis was based on treatment non-adherence as an ongoing problem in those with BP [11]. These behaviors may similarly lead people with BP to have less trust and participate less in established healthcare systems than those without BP. Additionally, we hypothesized that those who reported BP would be more likely to have a history of MJ use, compared to those who did not report BP. This hypothesis was based on the comorbidity between BP and MJ use found in the literature [12–14]. Exploring this hypothesis would show whether the literature surrounding these comorbid conditions was found among persons in the community, rather than only among patients. While this analysis may be limited in its lack of a temporal association, it is an important first step to further research and highlight the importance of community-level mental health.

Methods

Sample and procedures

To address our proposed hypothesis, we adopted a cross-sectional design for this analysis. The sample for these analyses consists of adult members in the HealthStreet cohort interviewed between 2011 and 2023. HealthStreet is a community engagement program of the University of Florida that seeks to reduce disparities in healthcare and health research through direct community outreach [15, 16]. Community Health Workers (CHWs) recruit potential participants in local community locations, such as malls, churches, health fairs, or any other place with our Health Needs Assessment. Potential participants who provide written consent are interviewed by a CHW and linked to health and social services within their community based on their specific needs [15, 16]. Ethical clearance for the HealthStreet project protocols/procedures was received from the University of Florida Institutional Review Board (IRB201600459).

Measures

The HealthStreet survey on health needs and concerns covers access to healthcare, healthcare utilization, and social determinants of health [15, 16]. The primary outcome variable in this analysis is lifetime bipolar disorder, which was assessed by the question: “Have you ever been told you had, or have you ever had, a problem with bipolar disorder?”, where responses are “No” or “Yes”. Demographic and health questions were assessed in the following way: “How old are you?”, with the respondent replying with their age in years. “What gender do you identify as?”, where responses are either “Male”, “Female”, “Transgender, “Non-binary/third gender” or “Refused”. For these analyses, participants were only included if they respond as “Male” or “Female” due to the small sample size of the other categories (0.26%). Afterwards, members were asked “Have you seen a doctor for any reason in the last 12 months?” where the respondent would answer with either “No” or “Yes”. Members were then asked a series of questions about research including: “How interested are you in being in a research study?” with responses “Definitely”, “Maybe”, or “Not at all”. They were also asked “On a scale of 1 to 10, where 1 is ‘Not at All’ and 10 is ‘Completely’, how much do you trust research? How much do you trust researchers?”, where the respondent would provide a number between 1 and 10 relative to their level of trust.

Regarding their health concerns, HealthStreet members were asked “What are your top three health concerns?”, and this open-ended question elicited whatever was salient to the participant. A “roll-up” code is used here for ease of analysis. For example, elbow pain received a “roll-up” code of “muscle and bone problems”. Concerns in this analysis included: “Hypertension”, “Diabetes”, “Muscle and Bone Problems”, “Weight Problems”, “Cancer”, “Heart Problems”, and “Mental Health”. Finally, members were asked about their use of substances. For this analysis, we focused on MJ only. Each participant was asked, “Have you ever used marijuana?”. Participants who answered “Yes” were then asked if they used marijuana in the last 30 days. For this variable, participants who answered “No” to the initial question were labeled as “Never”, participants who answered “Yes” to the ever question and “No” to the past 30 days question were labeled as “Past”, and participants who answered “Yes” to the initial question and “Yes” to the follow-up question were labeled as “Current”.

Data analysis

The data were analyzed using SAS 9.4. For “Average age”, “Average trust in research”, and “Average trust in researchers”, a means procedure was used with a class statement that subsetted the data by reported BP. This procedure was then used to generate the mean and standard deviation, which was then used in a two-tailed t-test to produce the P-value for these variables. For the rest of the demographic variables, chi-square analyses were used.

For health concern data, the specific concerns of all HealthStreet members were elicited for three different concerns and coded. Any participants who did not report a health concern were considered missing for this variable. P-values for these variables were considered significant at the P < 0.05 level. Very slight missingness was present within the demographic variables, however in all cases, this missingness comprised less than 0.5% of the total sample population.

Results

Demographic characteristics of participants

The demographic differences of HealthStreet members by BP status are shown in Table 1. As shown, 10.6% reported a history of BP. The BP group vs. the non-BP group was younger (42.60 years vs. 45.41 years) and more likely to be female (63.1% vs 59.4%), more likely to have visited a doctor in the past 12 months (76.9% vs 69.3%), and more likely to be “definitely” interested in participating in research (70.7% vs 49.9%). Additionally, the BP group vs the No BP group was more likely to report “current” (31.3% vs 15.7%) or “past” (40.4% vs 32.9%) MJ use. Of note, 71.7% vs. 48.6% of persons with BP vs No BP reported lifetime MJ use. Trust in research and in researcher average scores did not vary by bipolar status and were at a high level overall. Table 1 Demographics of HealthStreet members, by self-reported bipolar disorder

	No BP	BP	P-Value	
n = 11,163 (89.4%)	n = 1326 (10.6%)	
Average age (years) (SD)	45.41 (17.38)	42.60 (13.85)	< 0.0001	
Gender	
 Male	4532 (40.6%)	489 (36.9%)	0.009	
 Female	6631 (59.4%)	837 (63.1%)	
Visited doctor in past 12 months (yes)	7729 (69.3%)	1020 (76.9%)	< 0.0001	
Interested in Participating in Research	
 Definitely	5559 (49.9%)	937 (70.7%)	< 0.0001	
 Maybe	4793 (43.1%)	364 (27.4%)		
 Not at all	781 (7.0%)	25 (1.9%)		
Marijuana use pattern	
 Current	1750 (15.7%)	414 (31.3%)	< 0.0001	
 Past	3656 (32.9%)	534 (40.4%)		
 Never	5714 (51.4%)	374 (28.3%)		
Average trust in research (1–10, 10 = highest) (SD)	8.14 (8.69)	7.93 (7.11)	0.4105	
Average trust in researchers (1–10, 10 = highest) (SD)	8.30 (9.95)	8.31 (9.34)	0.9739	
Significance is indicated by: P < 0.05

Health concerns of participants

The top three health concerns of HealthStreet members were recorded at the time of their interview, they are shown by BP status in Table 2. Among those with a concern (n = 11,481), over one-third of the BP with mental health (34.4%); one-quarter was concerned about muscle and bone problems (25.4%). No other concerns were statistically different by BP status. Table 2 Top health concerns of HealthStreet members, by self-reported bipolar disorder, among those with a health concern (n = 11,481)

Among those with at least 1 concern	No BP	BP	P-Value	
n = 10,209 (88.9%)	n = 1272 (11.1%)	
Hypertension	2982 (29.2%)	281 (22.1%)	< 0.0001	
Diabetes	2202 (21.6%)	216 (17.0%)	0.0002	
Muscle and Bone Problems	1992 (19.5%)	324 (25.5%)	< 0.0001	
Weight Problems	1709 (16.7%)	161 (12.7%)	< 0.0001	
Cancer	1506 (14.8%)	112 (8.8%)	< 0.0001	
Heart Problems	1529 (15.0%)	149 (11.7%)	0.0019	
Mental Health	1146 (11.2%)	438 (34.4%)	< 0.0001	
Significance is indicated by: P < 0.05

Discussion

We examined how social determinants of health were associated with BP. Table 2 shows top health concerns. Muscle and bone problems, as well as mental health were associated with BP. A major finding of this analysis is that 10.62% of the HealthStreet members in the sample population self-reported BP. This prevalence is significantly higher than the lifetime reported prevalence of BP in the US which is 2.4% [8]. Differences may be attributed to the sample pool, the definition of the disorder, self-report vs patient record, or by question wording. Among the factors assessed were trust in the research enterprise. The initial hypothesis, that those who have less trust and accessed healthcare less would be more likely to report a history of BP than their counterparts, was rejected. There were no differences in trust by BP status. Although our hypothesis was rejected, it means that persons with BP have no bias in trust. This is especially important as trust can predict access to healthcare [17]. High trust and participation in healthcare research within the BP group is noteworthy. Our secondary hypothesis, that those who reported BP would be more likely to be current and past MJ users, compared to those that did not report BP, was upheld. The prevalence of lifetime MJ use among those with BP was nearly twice as high as those without BP (71.7% vs 48.6%). This is consistent with the current literature [12], however, we can see that this pattern is consistent at the community level as well. This reinforces the importance that interventions related to BP may also be effective against MJ use [18].

Additionally those with BP were on average more concerned with mental health than those without BP. They were also more likely to have recently visited the doctor. These findings are contrary to the current literature regarding this population and its high risk for adverse health effects within the context of healthcare systems [11, 19]. While the data is not sufficient to make claims regarding risk in this population, it may indicate that people with BP are likely to be aware of the risks that their condition confers, as well as take steps to reduce that risk. Despite this, those with BP tend to report both recent and former MJ use patterns than those without BP.

Another key finding is that those with BP are more interested in research participation than those without BP. This finding highlights that even though BP is not as well understood as other mental disorders, this cannot be attributed to low willingness to participate in healthcare research [8]. This shows that the current gap in the literature can be filled if researchers would be willing to take advantage of this high interest in research participation that is present within these communities and seek their agreement to participate. HealthStreet is one program that can offer people with mental illness a link to research and researchers.

Limitations of this work include a lack of a temporal association with variables. This prevents us from examining which variables came first within this analysis. Variables within this analysis, including the main outcome variable, BP status, are all self-reported as well, which is important to consider, as the wording of the question means it is possible that false positives may be included in the self-reported BP group, potentially explaining why the group consists of a larger proportion of the sample than we tend to see in the literature. The current sample may suffer from some amount of selection bias, as many of HealthStreet’s members may have been recruited from health fairs or other health-related events. This can be another explanation as to why the proportion of people who self-report BP in this study is significantly higher than that of the general population, and why people with BP are significantly younger than those who do not self-report BP. The authors can present no evidence of interaction between BP status and age, so this could also potentially be a confounding factor when examining the difference in health concerns between the two groups. This population is from only one geographic region (i.e. North Central Florida), so its findings may not be generalizable on a large scale. However, this weakness is also considered a strength in our study, as, despite its low generalizability, the geographic region surveyed here is mostly rural areas. Most of the current data regarding BP comes from surveys of major metropolitan areas, which excludes more rural areas. This analysis is also based around a community-dwelling sample, so participants are not chosen for their specific tie to any one health care setting or chosen because the person had been seen by a provider.

Acknowledgements

Research reported in this publication was supported by funding from the National Institute of Drug Abuse of the National Institutes of Health under Award Number T32DA035167 (PI: Cottler) and by the University of Florida Clinical and Translational Science Institute, which is supported in part by the NIH National Center for Advancing Translational Sciences under the award number UL1TR001427. This content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Health. The authors wish to thank the HealthStreet members who participated in this research.

Author contributions

C.C. wrote the bulk of the main manuscript text, prepared all the figures, as well as conducted the analysis shown in the paper. L.C. contributed significantly to the conceptual design of the paper, and made significant edits and suggestions to the main manuscript text whenever and whereever necessary during the lifecycle of the paper. All authors reviewed the manuscript.

Data availability

Data used in the manuscript can be found stored on HealthStreet servers. Data cannot be shared openly as it contains PHI, such as names, DOBs, and zip codes.

Declarations

Ethics approval and consent to participate

All participants were taken from the HealthStreet database, and all analyses were performed in accordance with IRB-approved guidelines and regulations pertaining to HealthStreet. All participants in the HealthStreet database have given appropriate informed consent before having their data added to the database and used in this analysis.

Competing interests

The authors declare no competing interests.

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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