Abstract
Purpose
Few efforts have been made to inform intervention design for increasing the uptake of cancer screening in individuals living with serious mental illness (ILSMI), who have lower cancer screening rates than the general population. This qualitative study explored ILSMI’s and their care team member’s (CTM) recommendations on the design of a breast, colorectal, and cervical cancer screening intervention for ILSMI.
Methods
Twenty-five ILSMI (mean age: 71.4 years; 60% female) and 15 CTM (mean age: 45.3 years; 80% female) were recruited through purposive sampling. Semi-structured in-depth interviews were used to collect participants’ intervention suggestions. Interviews were recorded, transcribed verbatim, and imported into NVivo. Content analysis and the constant comparison method were used to analyze interview data.
Results
ILSMI and CTMs provided several salient recommendations. ILSMI should receive disease-specific, logistical, and screening education, and primary care staff should receive education on psychopathology. Mental health providers and patient navigators should be considered as the primary interventionist. The intervention should be delivered where ILSMI receive medical or mental health services, receive community and government services, and/or via various digital media. The intervention should improve the collaboration, communication, and coordination between primary and mental health care. Findings also pointed to the implementation of trauma-informed cancer care and integrated care models comprising mental health care and primary cancer care.
Conclusion
These findings bring the skills, knowledge, and expertise of ILSM and their care team to intervention design for increasing colorectal, breast, and cervical cancer screening in ILSMI attending an intensive outpatient program.
Similar content being viewed by others
Explore related subjects
Discover the latest articles, news and stories from top researchers in related subjects.Avoid common mistakes on your manuscript.
Introduction
Worldwide, individuals living with serious mental illness (ILSMI) are more likely to die from cancer than the general population, despite similar rates of cancer incidence [1]. For example, a global systematic review with meta-analysis of 19 studies conducted in Europe, Australia, North America, and East Asia found that people living with schizophrenia have a risk of cancer mortality 40% higher than the general population while controlling for salient covariates (e.g., geographical location and gender) [2]. According to the Substance Abuse and Mental Health Service Administration and the National Institute of Mental Health, the identifier serious mental illness is assigned to a psychiatric disorder when it significantly impairs functioning in basic daily living skills (e.g., eating); instrumental living skills (e.g., managing money); or in social, family, and vocational/educational contexts [3]. In other words, as diagnosed with the Diagnostic and Statistical Manual of Mental Disorders [4] or with the International Statistical Classification of Diseases and Related Health Problems (ICD-10), any mental, behavioral, or emotional disorder (e.g., major depressive disorder, schizophrenia) can be a serious mental illness when it causes significant disability [5]. Due to their mental illness, ILSMI can face several barriers to adequate cancer care that indirectly increases their risk of cancer mortality [1, 6,7,8,9,10,11,12].
ILSMI have significantly lower rates of cancer screening as compared to the general population [13]. This might explain ILSMI’s higher rates of cancer mortality. Non-adherence to cancer screening may indirectly increase ILSMI’s cancer mortality by increasing their risk of advanced cancer when the likelihood of surviving is already poor [1, 14]. Evidence suggests that ILSMI have lower rates of cancer screening because of several individual, interpersonal, and community factors (poverty, low knowledge of cancer screening, lack of support, and discrimination) [1, 6,7,8,9,10,11,12]. In light of their numerous barriers to cancer screening, ILSMI who are at risk of cancer could benefit from interventions that can promote their cancer screening as recommended by the US Preventive Services Task Force [11, 15,16,17]. A 2022 scoping review showed that patient-, provider-, or health system-focused interventions may be promising approaches that could increase access to multiple types of physical health care services in ILSMI [18].
Despite the fact that various types of interventions could improve access to physical health care among ILSMI, a 2016 Cochrane review found no studies evaluating patient-, caregiver-, or provider-focused interventions for improving adherence to recommended cancer screening among ILSMI [19]. Since then, only three studies have been published and informed on barrier-focused interventions: patient navigation and case management. A two-arm randomized controlled trial found that compared to treatment as usual (n = 125), patient navigation (n = 126) improves the uptake of colorectal cancer screening among adults living with mental illness and/or substance use disorder in Boston, Massachusetts [20]. Although no significant changes in knowledge, attitudes, and intention to obtain screening were observed, a one-arm pilot trial found that decision counseling supplemented with patient navigation (n = 21) reduced decision conflict to obtain mammography and was acceptable and feasible in women living with severe mental illness in Philadelphia, Pennsylvania [21]. A two-arm, randomized controlled trial found that compared to a treatment as usual group (n = 85), case management (n = 85) improves the uptake of colorectal cancer screening among adults living with schizophrenia or schizoaffective disorder in Okayama, Japan [22, 23]. In a follow-up study with the same data, evidence supported the acceptability of this case management intervention [24]. There are also no known national initiatives in the United States focused on increasing access to cancer screening among ILSMI. The scarcity of this literature highlights a need for studies to inform the development of interventions for increasing cancer screening among ILSMI.
Multiple approaches to intervention development, including Intervention Mapping, recommend eliciting feedback from the intended audience (i.e., ILSMI) and their care team members (i.e., CTM, people who provide health care and support services to ILSMI). Engagement of these stakeholders enables those developing interventions to gain relevant skills, knowledge, and expertise to better recognize the needs of the target population and, in turn, improve intervention development [25]. To date, only one qualitative study has interviewed both women living with severe mental illness and mental health providers on strategies to promote breast and cervical cancer screening [10]. Participants recommended enhancing coordination of care using electronic medical records, improving communication between primary care and mental health care providers, and using case managers to help ILSMI navigate the healthcare system. Qualitative studies can expand on these findings by including ILSMI of any gender and focusing on other types of cancer screening (e.g., colorectal).
Therefore, grounded in Intervention Mapping [25], the present qualitative study elicited male and female ILSMIs’ and CTMs’ recommendations for the development of an intervention to improve breast, cervical, and colorectal cancer screening. Participants provided feedback on the ideal person to deliver the intervention, the ideal location for the intervention to take place, intervention content, and approaches to maximize intervention effectiveness. Study findings can inform the design of high-quality interventions for improving uptake of breast, cervical, and colorectal cancer screening in ILSMI.
Methods
Overview
The present study used a cross-sectional, qualitative design and followed COREQ (Consolidated criteria for Reporting Qualitative research) guidelines for the reporting of qualitative studies [26, 27] (see Appendix). Data were collected in a larger project that used Intervention Mapping [25] to design a cancer screening promotion intervention for ILSMI. Aligned with Intervention Mapping’s ecological approach, the project used the Social-Ecological Model [28, 29] and collaborated with ILSMI and CTMs to assess the needs and assets of ILSMI for obtaining breast, cervical, and colorectal cancer screening. ILSMI and CTMs provided their perspectives on ILSMI’s barriers and facilitators to cancer screening as well as their recommendations on the design of the intervention. The present study reports the qualitative data on the intervention recommendations. All participants provided written informed consent before taking part in the study, also consenting to their data being published. The study was approved by a non-profit psychiatric hospital’s Institutional Review Board.
Participants
Twenty-five ILSMI and 15 CTMs were recruited from a non-profit psychiatric hospital with inpatient and outpatient treatment in San Diego County, California. At the psychiatric hospital, ILSMI were attending either an adult intensive outpatient program for patients with severe mental illness or a senior intensive outpatient program for patients at least 60 years of age living with a mood disorder. Both programs treat patients who need intensive structured treatment without inpatient hospitalization. ILSMI participants were included in the study if they were: 1) diagnosed with a severe mental illness; 2) able to speak English; 3) able to provide informed consent; and 4) 50 years of age or older in consideration of the U.S. Preventive Services Task Force’s age guidelines for recommended breast, cervical, and colorectal cancer screening at the time [17, 30, 31]. CTMs were defined as “people who provide health care and support services to ILSMI at the adult intensive outpatient program or senior intensive outpatient program.” To be included, CTMs were required to: 1) be 18 years of age or older; 2) be able to speak English, and 3) have experience with working with ILSMI for at least 1 year.
Procedures
Purposive sampling [32] was used to recruit ILSMI and CTMs that met the above inclusion criteria. That is, the study aimed to specifically recruit two groups of participants: 1) patients (i.e., ILSMI) who were attending the two intensive outpatient programs who had a severe mental illness and, based on the cancer screening guidelines at the time [17, 30, 31], could have sought screening for cervical, colorectal, and/or breast cancer; and 2) employees (i.e., CTMs) of the psychiatric hospital who had at least 1 year of experience working with ILSMI. These two groups of individuals were selected based on their ability to provide information about barriers and facilitators to cancer screening, along with potential intervention suggestions for a cancer screening intervention.
ILSMI and CTMs were interviewed separately and individually according to their availability. A psychiatric hospital’s employee who was also a study team member identified potential ILSMI and CTMs for the study. For potential ILSMI participants, the psychiatric hospital employee brought interested ILSMI participants to meet with a graduate research coordinator in a private room at the psychiatric hospital where the intensive outpatient programs were being conducted. If the ILSMI confirmed interest in participating, the graduate research coordinator provided additional study information, confirmed study eligibility, and obtained informed consent. After informed consent, the graduate research coordinator began the individual semi-structured, in-depth interview to assess eligible ILSMI’s perspectives on barriers and facilitators to cancer screening in ILSMI as well as their recommendations on the development of a cancer screening intervention. The graduate research coordinator met with each ILSMI participant alone in the private room.
As for potential CTM participants, they were first contacted by the psychiatric hospital’s employee who was also a study team member via email, telephone, and/or in-person inquire about their interest in the study. An in-person meeting was scheduled with a graduate research coordinator for CTMs who agreed to participate. The in-person meeting with each CTM took place in a private room in the psychiatric hospital where the graduate research coordinator provided additional study information, confirmed study eligibility, and obtained informed consent. After informed consent, the graduate research coordinator began the individual semi-structured, in-depth interview to assess eligible CTMs’ perspectives on barriers and facilitators to cancer screening in ILSMI as well as their recommendations on the development of a cancer screening intervention. The graduate research coordinator met with each CTM participant alone in the private room. Interviews were conducted by two graduate research coordinators (JRG, EA) who identified as female, had graduate education in psychology, had previous experience with qualitative data collection, were trained in all study procedures, and were not related to the study participants. Repeat interviews were not conducted. Each interview was audio recorded.
Three members (KJW, JRG, EA) of the study team developed the interview guides based on the five levels of the Social-Ecological Model (i.e., individual, interpersonal, institutional, community, and public policy) [28, 29], while incorporating items to assess for intervention suggestions from the members of the community per Intervention Mapping [25]. Three members of the study team reviewed the interview guide; the interview guide was not piloted. ILSMI and CTMs also completed a standardized, self-report questionnaire to collect demographic data (e.g., age and gender). ILSMI also provided information about family history of cancer via self-report. At study conclusion, all participants received a $25 gift card.
Data Analysis
During the in-depth interviews, ILSMI and CTMs provided their perspectives on ILSMI’s barriers and facilitators to cancer screening as well as their recommendations on the design of a cancer screening intervention. Twenty-five ILSMI interviews (mean: 31.7 min, standard deviation [SD]: 9.6 min) and 15 CTM interviews (mean: 38.4 min, SD: 9.8 min) were completed in English between 15 May 2017 and 2 May 2018. Thematic saturation was achieved as indicated when no new information about a priori themes was provided [32]. Interviews were transcribed verbatim but were not provided to participants for comments or corrections. Through direct content analysis [33], two authors (RACA, CGA) developed the preliminary codebook with a priori themes based on the five levels of the Social-Ecological Model [28, 29] and intervention suggestions (i.e., intervention content, intervention place, preference of interventionist, and intervention approaches). The present study reports only the data obtained during interviews regarding study participants’ recommendations on the design of a cancer screening intervention for ILSMI. Two team members (RACA, CGA) independently reviewed each transcript and assigned sections of text to specific codes (i.e., intervention content, preference for the interventionist, intervention location, and intervention approaches). These two team members had in-person meetings to assess for discrepancies in coding. They resolved coding discrepancies (e.g., differently coding interview text that offered a suggestion as intervention content versus intervention approach) thorough discussion about coding until consensus was reached. When it was difficult to reach consensus, another team member (JRG) provided her input to help the two team members reach a decision about how to best code the text. The data were coded using NVivo. Three authors (AB, DK, RACA) created summaries for each subtheme. We used SPSS to conduct descriptive analysis of demographic data (i.e., frequencies, measures of central tendency, and variation).
Results
Participant characteristics
ILSMI participants had a mean age of 71.4 years (SD: 6.8), 60% were female, 84% identified as non-Hispanic White, 68% had less than or equal to some college education, 20% were married, 16% had no children, 16% were living with family, and 32% had an annual income below $9999 (U.S. dollars [USD]). Importantly, 24% reported that their mother had cancer, and 20% reported that their father had cancer. CTMs had a mean age of 45.3 years (SD: 11.2), 80% were female, 80% identified as non-Hispanic White, 86.6% had a graduate-level education, and 87.7% identified as a mental health provider (e.g., social worker). Tables 1 and 2 present demographic characteristics for ILSMI and CTMs.
ILSMIs and CTMs provided recommendations on the design of a colorectal, breast, and cervical cancer screening intervention for ILSMI. These recommendations are presented below based on the following four themes: preferences for interventionist, intervention location, intervention content, and intervention approaches. Table 3 summarizes each recommendation, its description, and supporting participant quotes.
Preference for interventionist
Several ILSMI and CTMs agreed that mental health providers (e.g., psychiatrists and counselors) could be the interventionist, given that they possess the clinical skills to help ILSMI overcome potential discomfort with cancer screening. One CTM mentioned, “A mental health professional can also be involved to help them overcome and manage some of those symptoms prior to the screening.” Other possible interventionists included nurses, case managers, peer support specialists, health coaches, family and/or friends, patient navigators, “medical providers,” physicians assistants, or generally someone whom an ILSMI trusts. One ILSMI mentioned, “It’s always good to have encouragement from friends and family.”
Intervention location
The majority of CTMs and ILSMI agreed that the intervention would be best delivered at sites with medical or mental health services (i.e., medical offices, clubhouses, crisis centers; Alcoholics Anonymous; adult intensive outpatient program or a senior intensive outpatient program), sites with community and government services (i.e., shelters, social services offices, welfare offices, insurance company offices, and food banks), and/or be delivered via different communication channels (i.e., television, radio, phones, websites, newspapers, billboards, or mail). One CTM and one ILSMI emphasized that the intervention should take place in sites that are highly frequented by ILSMI (e.g., food banks, homeless shelters). The CTM mentioned, “It is going to the food banks, medical offices, clubhouses, homeless shelters, some poor village and the downtown senior residency hotels. They are not going to come to you,” and the ILSMI mentioned, “just notices in places where people are likely to be, especially women.”
Intervention content
Several ILSMI and CTMs agreed that education would be an important component of the cancer screening intervention. They stated that ILSMI should be provided with disease-specific education on what cancer is, how cancer can be asymptomatic, how genetic predisposition increases the risk for certain types of cancer, and how cancer can be prevented. Furthermore, ILSMI should receive screening-specific education on the benefits and risks (e.g., physical harm) of cancer screening as well as on the different types of cancer screening available. One CTM stated,
“I think maybe their primary care or somebody really discussing with them the risks and the benefits of getting those screenings done. And I guess talking about how they could start with the more non-invasive one first, and then see. And just talking about the importance of getting that screening because I think, often times, they sort of brush it off like, I’m not having any symptoms…educating them on the fact that there are treatments available that were never available before.”
CTMs and ILSMI also noted that ILSMI should receive logistical information on where to obtain cancer screening, how to initiate the screening process, how to get screening covered by insurance, and the importance of attending medical appointments.
Also, a few CTMs indicated that primary care staff (e.g., nurses) should receive education on psychopathology and best approaches to providing cancer screening to ILSMI. They stated that certain symptoms of mental illness could complicate screening procedures. One CTM mentioned,
“Some type of coaching of sorts where providers had more understanding of sexual trauma and what that looks like when someone is having these procedures so I think that would take some medical staff education as well as patient education…I think screening for sexual trauma would really help kind of understand the conversations that need to happen beforehand, for level of comfort, or even just material that can be provided to help them understand that they may have increased symptoms arise during this and this is what they can do after.”
Intervention approaches
A few CTMs and ILSMI stated that clinical strategies (e.g., motivational interviewing and group therapy) should be implemented to change ILSMI’s negative attitudes and fear toward cancer screening, increase their motivation for self-care, help them consolidate health information and recommendations, and ameliorate their mental health symptoms before cancer screening. One CTM stated, “the therapist in the program should really help them understand and weigh the pros and cons of getting screenings… Motivational interviewing could maybe be used to get them to be comfortable with the screening” and an ILSMI mentioned when suggesting group therapy, “the idea here is as I call group therapy… Will help you come together to heal some way. But you’re not alone…You’re not battling this by yourself.” In the same vein, many CTMs believed that efforts should be made to reduce the stigma around mental illness and cancer care (e.g., colorectal cancer screening), especially to help get family involved in ILMSI’ cancer care and to help ILSMI’s care team provide better trauma-informed cancer care. When discussing how to involve family members in ILSMI’s cancer care, one CTM stated,
“If you know that they have involved family, and again this goes back to the stigma of mental health illness, a lot of people don’t wanna talk about it, so they're kind of like the black sheep of the family sometimes. But if you know if they have a supportive family member, get their family member involved.”
To improve quality of cancer care for ILSMI, several CTMs alluded to implementation of integrated care by recommending improvements in communication, collaboration, and coordination between primary care and mental health care systems. One CTM stated, “I think we need better collaboration as mental health providers with medical providers, especially for our patients.” Several CTMs and some ILSMI also underscored that cancer screening interventions should provide ILSMI with insurance, incentives, and/or free clinics to relieve the economic burden of getting cancer screening. One ILSMI mentioned, “give them money or insurance.” Lastly, CTMs and ILSMI agreed on the deployment of interventionists to take patients to appointments, provide emotional and peer support, provide education, encourage self-care, provide transportation, follow-up on care, and navigate them through the healthcare system.
Discussion
The present qualitative study explored ILSMI’s and CTMs’ recommendations on the design of an intervention to increase uptake of cervical, breast, and colorectal cancer screening in ILSMI. Intervention Mapping recommends using feedback from the intended audience (i.e., ILSMI) and CTMs to inform intervention design. This feedback can improve interventions by better recognizing the needs of the target population and offering a greater breadth of relevant skills, knowledge, and expertise [25]. ILSMIs’ and CTMs’ recommendations informed on the ideal person to deliver a cancer screening intervention; the ideal place where the cancer screening intervention should take place; content that should be included in the cancer screening intervention; and strategies that should be taken to make the cancer screening intervention effective.
Similar to the conclusions of the only published study that has previously probed the perspective of ILSMI and CTMs in this regard [10], this study recommends that interventionists should be deployed to help ILSMI navigate the complex healthcare system by performing tasks related to health care support (e.g., provide emotional support), care coordination (e.g., provide transportation to appointments), and basic navigation (e.g., check-ins). Our findings revealed that the primary preference for an interventionist is a mental health provider (e.g., psychiatrist, counselors) because they possess clinical skills that could help facilitate screening in ILSMI. However, interventions should also consider patient navigators, case managers, and social workers as other viable options. Not only were they also recommended as possible interventionists in the present study, but these health workers are often already engaged in tasks to help patients navigate the healthcare system [34,35,36]. Plus, two studies revealed that patient navigation [20] and case management [23] may help improve the uptake of cancer screening in ILSMI. In general, the interventionist was described as someone whom an ILSMI trusts, which can also include friends, family members, and/or others.
Consistent with the previous qualitative study [10], implementation of integrated care was recommended to improve the collaboration, communication, and coordination between the primary care and mental health care systems. In fact, it was recommended that a cancer screening intervention for ILSMI should take place in sites where they receive mental health services (e.g., intensive treatment programs), receive community and government services (e.g., shelters), and receive primary care. Based on prior research on behavioral health integration for ILSMI, Gerrity (2014) stated that integrated care models can be conceptualized along a continuum of six levels of collaboration and fragmentation, ranging from separate care systems with little communication to full integration until the health care systems are perceived as a single system [37]. However, there are several barriers to developing integrated care models, such as financial challenges, resistance to change, and privacy laws. Prior work [37,38,39] has described state-based and project-based strategies to help overcome these obstacles, for example, using standardized, multi-provider consent forms to facilitate the between-system exchange of information and seeking available state, federal, and foundation grants (e.g., those offered by the Substance Abuse and Mental Health Services Administration [39]). While there are several options to facilitate integrated care models, it is still critical that federal policymakers find better ways of supporting integrative care for ILSMI.
Study results recommend that interventions should provide medical staff with education on psychopathology. In a different qualitative study on barriers to cancer in ILSMI, healthcare staff also underscore the need for medical staff to have mental health expertise when delivering cancer care to ILSMI [40]. This recommendation could be one way to address medical staff’s stigmatizing attitudes towards mental illness, a barrier to cancer screening among ILSMI [12]. In the same vein, it was broadly recommended that efforts should be made to specifically reduce stigma around mental illness and cancer care, which are also known barriers to cancer screening in ILSMI [1, 12]. It was also recommended that the intervention should incorporate clinical strategies (e.g., motivational interviewing and group therapy) to ameliorate ILSMI’s psychopathology symptoms before screening and to improve their consolidation of health information and cancer screening recommendations. Previous evidence has revealed that uncontrolled psychopathology symptoms hinder uptake and adherence to cancer care among ILSMI by impairing their judgement or organizational skills and, subsequently, compromising their ability to adhere to cancer screening appointments and communicate with their providers [12]. These recommendations, the use of therapists as the interventionist, and deployment of integrated care models allude to the implementation of trauma-informed cancer screening in accordance with the principles and goal of trauma-informed care [41].
The Substance Abuse and Mental Health Services Administration has published a manual with the definition of trauma-informed care and a framework for becoming a trauma-informed organization, system, or service sector [41]. Cancer screening interventions should understand that trauma-informed care is defined as care that:
realizes the widespread impact of trauma and understands potential paths for recovery; recognizes the signs and symptoms of trauma in clients, families, staff, and others involved with the system; and responds by fully integrating knowledge about trauma into policies, procedures, and practices, and seeks to actively resist re-traumatization. (p. 9)
Cancer screening interventions should attempt to align different organizational levels with the following principles described in the Substance Abuse and Mental Health Services Administration’s manual: 1) safety, 2) trustworthiness and transparency, 3) peer support, 4) collaboration and mutuality, 5) empowerment, voice, and choice, and 6) cultural, historical, and gender issues. The organizational levels are described in the Substance Abuse and Mental Health Services Administration’s manual and include: 1) governance and leadership, 2) policy, 3) physical, 4) engagement and involvement, 5) cross sector collaboration, 6) screening, assessment, treatment services, 7) training and workforce development, 8) progress monitoring and quality assurance, 9) financing, and 10) evaluation. A 2022 scoping review found that trauma-informed care is growing in oncology since the 2014 publication of the Substance Abuse and Mental Health Services Administration’s manual, but substantial efforts are still required for the oncology field to fully integrate trauma-informed cancer care [42]. Integrating the framework of trauma-informed care in cancer screening interventions is a crucial step towards promoting the receipt of cancer screening in ILSMI, given that it may help target unique psychopathology-related barriers in this population (e.g., trauma symptoms, mental health stigma) [1, 12].
There are other novel recommendations. The intervention should contain an education module that provides ILSMI with disease-specific, screening-specific, and logistical information. This recommendation could help address ILSMI’s low knowledge of cancer and cancer screening [12]. Participants stated that a cancer screening intervention for ILSMI could also be delivered via different communication channels, such as through television, radio, phones, websites, newspapers, billboards, or mail. Results reported in a systematic review [43] support the acceptability and feasibility of informational technology (e.g., smartphone) interventions for ILSMI. For instance, one recent study reported that 75% of ILSMI expressed willingness to participate in digital interventions for health, mental health, and stress [44].
The purpose of the study was to gather information from ILSMI and CTM regarding their suggestions for intervention approaches. We did not attempt to evaluate these suggestions for feasibility. Some of the recommendations may not be feasible in all settings. Although some may not be currently feasible, various stakeholders, including policy makers, can still use them to inform interventions (including legislation) that support equitable cancer care for ILSMI and that in the future, might turn unfeasible recommendations into feasible recommendations. For example, after recognizing the efficacy of patient navigation in facilitating cancer screening, various states have passed Medicaid waivers to fund/reimburse for services performed by navigators and/or community health workers [45]. While it is true that some recommendations may not be currently feasible in all settings, it is also true that ILSMI and CTM still provided other recommendations that are currently feasible, such as educating primary care providers about the impact of cancer screening on psychopathology symptoms. Despite limitations in the study, the present recommendations represent the perspectives of ILSMI receiving care in an intensive outpatient program and of CTM on how to help ILSMI obtain cancer screening.
The present qualitative study had limitations. The sample of ILSMI was unique in that while most participants had low incomes, most also were predominantly non-Hispanic White, their mean age was 71.8 years (SD = 6.8), all had health insurance, and all participants were already receiving psychiatric care at an intensive outpatient program in a psychiatric hospital. While, on average, most participants were in the age range for at least one of the U.S. Preventive Services Task Force cancer screening guidelines [17, 30, 31], it is possible that some participants may have been older than recommended to receive the cancer screening for which they were interviewed, especially for women interviewed about cervical cancer screening. Nevertheless, it is likely that participants who provided information regarding suggestions for cancer screening interventions for cancers where their age exceeded the screening recommendation would likely be able to provide valuable information based on their experiences in the recent past. Homelessness and type of mental illness were not assessed. The findings may not represent the perspective of ethnically and racially diverse groups of ILSMI, homeless individuals living with severe mental illness, ILSMI subgroups with certain disorders or who are younger, and of ILSMI who have not been connected to care and do not have insurance. These subgroups of ILSMI may require different approaches for increasing adherence to cancer screening recommendations. Study findings may not represent the perspective of primary care staff, given that 86.7% of CTM participants were social workers or marriage and family therapists. To further expand on the present findings, future studies should address these limitations and obtain the perspectives of primary care staff (e.g., nurses, physicians) and of other diverse groups of ILSMI (e.g., Mexican Americans living with a severe mental illness).
In sum, as recommended by Intervention Mapping [25], the present article provides ILSMIs’ and CTMs’ recommendations for the design of future interventions to promote cervical, colorectal, and breast cancer screening in ILSMI. Some of these recommendations suggest the use of patient-, provider-, community-, and health system-focused interventions to increase cancer screening in ILSMI; evidence already supports these types of interventions as effective at increasing access to health care in ILSMI [18]. Further, important recommendations included the use of case managers or patient navigators as the interventionist; implementation of integrated care models comprising mental health care and primary care; and providing trauma-informed cancer care for ILSMI. The present set of recommendations from ILSMIs and CTMs can help develop an intervention to promote cancer screening among ILSMI attending intensive outpatient mental health programs.
Data availability
The dataset analyzed during the current study are not publicly available because a) the Institutional Review Board was not informed that the data would be shared, b) participants were not informed that their data would be shared, and c) the research team is actively working on additional manuscripts from these data. The corresponding author can answer further questions about data availability.
References
Grassi L, Riba M (2020) Cancer and severe mental illness: Bi-directional problems and potential solutions. Psychooncology 29:1445–1451. https://doi.org/10.1002/pon.5534
Zhuo C, Tao R, Jiang R, Lin X, Shao M (2017) Cancer mortality in patients with schizophrenia: Systematic review and meta-analysis. Br J Psychiatry 211:7–13. https://doi.org/10.1192/bjp.bp.116.195776
National Institute of Mental Health (2021) Mental health information. https://www.nimh.nih.gov/health/statistics/mental-illness. Accessed 20 Aug 2022
American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders : DSM-5. American Psychiatric Association, Arlington, VA
World Health Organization (1992) The ICD-10 Classification of Mental and Behavioural Disorders: Clinical descriptions and diagnostic guidelines. https://www.who.int/publications/i/item/9241544228. Accessed May 17 2023
Irwin KE, Park ER, Fields LE, Corveleyn AE, Greer JA, Perez GK et al (2019) Bridge: Person-centered collaborative care for patients with serious mental illness and cancer. Oncologist 24:901–910. https://doi.org/10.1634/theoncologist.2018-0488
Clifton A, Burgess C, Clement S, Ohlsen R, Ramluggun P, Sturt J et al (2016) Influences on uptake of cancer screening in mental health service users: A qualitative study. BMC Health Serv Res 16:257. https://doi.org/10.1186/s12913-016-1505-4
Kahn LS, Fox CH, Krause-Kelly J, Berdine DE, Cadzow RB (2005) Identifying barriers and facilitating factors to improve screening mammography rates in women diagnosed with mental illness and substance use disorders. Women Health 42:111–126. https://doi.org/10.1300/j013v42n03_07
Owen C, Jessie D, De Vries RM (2002) Barriers to cancer screening amongst women with mental health problems. Health Care Women Int 23:561–566. https://doi.org/10.1080/07399330290107322
Miller E, Lasser KE, Becker AE (2007) Breast and cervical cancer screening for women with mental illness: Patient and provider perspectives on improving linkages between primary care and mental health. Arch Womens Ment Health 10:189–197. https://doi.org/10.1007/s00737-007-0198-4
Weinstein LC, LaNoue M, Hurley K, Sifri R, Myers R (2015) Using concept mapping to explore barriers and facilitators to breast cancer screening in formerly homeless women with serious mental illness. J Health Care Poor Underserved 26:908–925. https://doi.org/10.1353/hpu.2015.0104
Leahy D, Donnelly A, Irwin K, D’Alton P (2021) Barriers and facilitators to accessing cancer care for people with significant mental health difficulties: A qualitative review and narrative synthesis. Psychooncology 30:2012–2022. https://doi.org/10.1002/pon.5848
Solmi M, Firth J, Miola A, Fornaro M, Frison E, Fusar-Poli P et al (2020) Disparities in cancer screening in people with mental illness across the world versus the general population: Prevalence and comparative meta-analysis including 4 717 839 people. Lancet Psychiatry 7:52–63. https://doi.org/10.1016/s2215-0366(19)30414-6
Kisely S, Crowe E, Lawrence D (2013) Cancer-related mortality in people with mental illness. JAMA Psychiat 70:209–217. https://doi.org/10.1001/jamapsychiatry.2013.278
U.S Preventive Services Task Force (2021) Colorectal cancer: Screening. https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/colorectal-cancer-screening. Accessed 22 Feb 2022
U.S Preventive Services Task Force (2021) Cervical cancer: Screening. https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/cervical-cancer-screening. Accessed 22 Feb 2022
U.S Preventive Services Task Force (2016) Breast cancer: Screening. https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/breast-cancer-screening. Accessed 22 Feb 2022
Strunz M, Jiménez NP, Gregorius L, Hewer W, Pollmanns J, Viehmann K et al (2022) Interventions to promote the utilization of physical health care for people with severe mental illness: a scoping review. Int J Environ Res Public Health. https://doi.org/10.3390/ijerph20010126
Barley EA, Borschmann RD, Walters P, Tylee A (2016) Interventions to encourage uptake of cancer screening for people with severe mental illness. Cochrane Database Syst Rev 9:CD009641–CD009641. https://doi.org/10.1002/14651858.CD009641.pub3
Abuelo C, Ashburner JM, Atlas SJ, Knudsen A, Morrill J, Corona P et al (2020) Colorectal cancer screening patient navigation for patients with mental illness and/or substance use disorder: Pilot randomized control trial. J Dual Diagn 16:438–446. https://doi.org/10.1080/15504263.2020.1802542
Weinstein L, LaNoue M, Hurley K, Payton C, Sifri R, Myers R (2019) Feasibility pilot outcomes of a mammography decision support and navigation intervention for women with serious mental illness living in supportive housing settings. J Prim Care Community Health 10:2150132719867587. https://doi.org/10.1177/2150132719867587
Fujiwara M, Inagaki M, Shimazu T, Kodama M, So R, Matsushita T et al (2019) A randomised controlled trial of a case management approach to encourage participation in colorectal cancer screening for people with schizophrenia in psychiatric outpatient clinics: Study protocol for the J-SUPPORT 1901 (ACCESS) study. BMJ Open 9:e032955–e032955. https://doi.org/10.1136/bmjopen-2019-032955
Fujiwara M, Yamada Y, Shimazu T, Kodama M, So R, Matsushita T et al (2021) Encouraging participation in colorectal cancer screening for people with schizophrenia: A randomized controlled trial. Acta Psychiatr Scand 144:318–328. https://doi.org/10.1111/acps.13348
Yamada Y, Fujiwara M, Shimazu T, Etoh T, Kodama M, So R et al (2022) Patients’ acceptability and implementation outcomes of a case management approach to encourage participation in colorectal cancer screening for people with schizophrenia: A qualitative secondary analysis of a mixed-method randomised clinical trial. BMJ Open 12:e060621. https://doi.org/10.1136/bmjopen-2021-060621
Bartholomew Eldredge LK, Markham CM, Ruiter RAC, Fernández ME, Kok G, Parcel GS (2016) Planning health promotion programs : An intervention mapping approach. Jossey-Bass, San Francisco, CA
Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int J Qual Health Care 19:349–357. https://doi.org/10.1093/intqhc/mzm042
Booth A, Hannes K, Harden A, Noyes J, Harris J, Tong A (2014) COREQ (Consolidated criteria for reporting qualitative studies). In: Moher D, Altman DG, Schulz KF, Simera I, Wager E (eds) Guidelines for reporting health research: a user’s manual. Wiley, West Sussex, UK, pp 214–226
McLeroy KR, Bibeau D, Steckler A, Glanz K (1988) An ecological perspective on health promotion programs. Health Educ Q 15:351–377. https://doi.org/10.1177/109019818801500401
Weinstein LC, Stefancic A, Cunningham AT, Hurley KE, Cabassa LJ, Wender RC (2016) Cancer screening, prevention, and treatment in people with mental illness. CA Cancer J Clin 66:134–151. https://doi.org/10.3322/caac.21334
U.S Preventive Services Task Force (2016) Colorectal Cancer: Screening. https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/colorectal-cancer-screening-june-2016
U.S Preventive Services Task Force (2012) Cervical Cancer: Screening. https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/cervical-cancer-screening-2012
Patton MQ (2002) Qualitative research and evaluation methods Sage Publications, London
Hsieh HF, Shannon SE (2005) Three approaches to qualitative content analysis. Qual Health Res 15:1277–1288. https://doi.org/10.1177/1049732305276687
Lukersmith S, Millington M, Salvador-Carulla L (2016) What is case management? A scoping and mapping review. Int J Integr Care 16:2. https://doi.org/10.5334/ijic.2477
Wells KJ, Valverde P, Ustjanauskas AE, Calhoun EA, Risendal BC (2018) What are patient navigators doing, for whom, and where? A national survey evaluating the types of services provided by patient navigators. Patient Educ Couns 101:285–294. https://doi.org/10.1016/j.pec.2017.08.017
Peterson EB, Chou WS, Falisi A, Ferrer R, Mollica MA (2018) The role of medical social workers in cancer clinical trial teams: A group case study of multidisciplinary perspectives. Soc Work Health Care 57:688–704. https://doi.org/10.1080/00981389.2018.1477899
Gerrity M (2014) Integrating primary care into behavioral health settings: What works for individuals with serious mental illness. https://www.milbank.org/publications/integrating-primary-care-into-behavioral-health-settings-what-works-for-individuals-with-serious-mental-illness/. Accessed 3 Mar 2022
Bachrach D, Anthony S, Detty A (2014) State strategies for integrating physical and behavioral health services in a changing Medicaid environment. https://www.commonwealthfund.org/publications/fund-reports/2014/aug/state-strategies-integrating-physical-and-behavioral-health. Accessed 21 Mar 2022
Docherty M, Spaeth-Rublee B, Scharf D, Ferenchick EK, Humensky J, Goldman ML, et al. (2020) How practices can advance the implementation of integrated care in the COVID-19 era. https://www.commonwealthfund.org/publications/issue-briefs/2020/nov/practices-advance-implementation-integrated-care-covid. Accessed 26 Jun 2022
D’Alton P, O’Meara R, Langford S, McDonnell Z, Nuzum A, Murthy VE et al (2021) Barriers to cancer care for people with significant mental health difficulties: What healthcare staff say? Psychooncology 30:2032–2038. https://doi.org/10.1002/pon.5790
The Substance Abuse and Mental Health Services Administration (2014) SAMHSA’s concept of trauma and guidance for a trauma-informed approach. https://store.samhsa.gov/product/SAMHSA-s-Concept-of-Trauma-and-Guidance-for-a-Trauma-Informed-Approach/SMA14-4884. Accessed 5 Aug 2022
Davidson CA, Kennedy K, Jackson KT (2022) Trauma-informed approaches in the context of cancer care in Canada and the United States: a scoping review. Trauma Violence Abuse. https://doi.org/10.1177/15248380221120836
Batra S, Baker RA, Wang T, Forma F, DiBiasi F, Peters-Strickland T (2017) Digital health technology for use in patients with serious mental illness: a systematic review of the literature. Med Devices (Auckl) 10:237–251. https://doi.org/10.2147/mder.S144158
Brunette MF, Achtyes E, Pratt S, Stilwell K, Opperman M, Guarino S et al (2019) Use of smartphones, computers and social media among people with SMI: Opportunity for intervention. Community Ment Health J 55:973–978. https://doi.org/10.1007/s10597-019-00431-7
California Health Care Foundation (2023) Summary of Medicaid state plan amendments for community health workers. https://www.chcf.org/publication/summary-medicaid-state-plan-amendments-chws/. Accessed May 17 2023
Acknowledgements
The authors would like to thank the patients and their care team who took the time to speak with us.
Funding
Mr. Cristian Garcia-Alcaraz’s and Ms. Rosa A. Cobian Aguilar’s efforts were supported by the UC San Diego Strategic Enhancement of Excellence through Diversity (SEED) Fellowship and the San Diego State University (SDSU) University Graduate Fellowship. Ms. Aleigha Binda’s efforts were supported by the National Cancer Institute’s Multidisciplinary Educational Approach to Reducing Cancer Disparities Program (YES) Grant R25CA2217779 and National Cancer Institute Creating Scientists Program (CSP) Grant R25CA132699. Mr. Nicholas C. Lucido’s efforts were supported by the National Cancer Institute of the National Institutes of Health under award numbers U54CA12384 and U54CA132379. Dr. Kristen Wells’ efforts were supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health under award number U54MD012397. The content is solely the responsibility of the authors and does not necessarily represent the official views of any funding organization.
Author information
Authors and Affiliations
Contributions
CGA: Validation, Formal analysis, Investigation, Data Curation, Writing––Original Draft, Writing––Review & Editing, Visualization; AB: Formal analysis, Investigation, Data Curation, Writing––Original Draft, Writing––Review & Editing, Visualization; JRG: Conceptualization, Methodology, Validation, Investigation, Writing––Review & Editing; ENA: Conceptualization, Methodology, Writing––Review & Editing; KLG: Conceptualization, Methodology, Resources, Writing––Review & Editing, Project administration; RACA: Validation, Formal analysis, Investigation, Data Curation, Writing––Review & Editing; NCL: Formal analysis, Investigation, Writing––Review & Editing; DK: Formal analysis, Writing––Review & Editing; CA: Conceptualization, Methodology, Investigation, Writing––Review & Editing; MGP: Conceptualization, Methodology, Investigation, Project administration, Writing––Review & Editing; KJW: Conceptualization, Methodology, Resources, Writing––Original Draft, Writing––Review & Editing, Visualization, Supervision, Project administration, Funding acquisition.
Corresponding author
Ethics declarations
Conflict of interest
The authors have no relevant financial or non-financial interests to disclose.
Ethical approval
The study procedures were approved by a non-profit psychiatric hospital’s Institutional Review Board.
Consent to participate
Written informed consent was obtained from all individual participants included in the study.
Consent to publish
The authors affirm that participants provided informed consent for publication of their de-identified data.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Supplementary Information
Below is the link to the electronic supplementary material.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Garcia-Alcaraz, C., Binda, A., Gordon, J.R. et al. Intervention recommendations to improve uptake of breast, cervical, and colorectal cancer screening among individuals living with serious mental illness. Cancer Causes Control 35, 451–463 (2024). https://doi.org/10.1007/s10552-023-01791-y
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10552-023-01791-y