Growing evidence suggests individuals with major mental disorders (e.g., schizophrenia, bipolar disorder, major depression) live with chronic health conditions that impact their quality of life and lead to premature death. Some studies suggest that, on average, these individuals die 25 years earlier than the general population (Parks, Svedsen, Singer, & Foti, 2006). The leading causes of mortality among this population are associated with cardiovascular disease and metabolic disorders. Underlying factors linked to these health disparities include socioeconomic conditions, chronic stress, traumatic events, medications, and lack of access to preventive medical service (Druss, Zhao, Von Esenwein, Morrato, & Marcus, 2011; Lawrence & Kisely, 2010). Studies specific to the nature of cancer prevention among New Jersey residents served by the state's mental health system showed poor use of cancer and non-cancer risk assessments (Swarbrick et al., 2013). To address the low cancer and preventive service use rates, a peer-led wellness agency in New Jersey has been organizing advocacy and education efforts as well as engaging in research on this health disparity (Swarbrick et al., 2013).
The goal of the current study was to assess the use rates of preventive services and identify barriers to the use of these services among individuals with mental disorders participating in peer-led community wellness centers. Peer-led refers to centers operated by individuals who identify as having mental disorders and are former or current recipients of public mental health services.
The U.S. Preventive Services Task Force (2010, 2012, 2014) made recommendations on the frequency of use of cancer screening services. The Task Force recommends women ages 50 to 75 receive mammography screening once every 2 years, with women younger than 50 beginning screening based on their personal medical and family histories (U.S. Preventive Services Task Force, 2010). For cervical cancer, the Task Force recommends Pap smears with human papillomavirus co-testing every 3 years for women ages 21 to 65. It is not recommended that women younger than 21 and older than 65 with no history of cervical abnormalities participate in routine screening (U.S. Preventive Services Task Force, 2012). Screening for colorectal cancer should happen between age 50 and 75, with either colonoscopy, sigmoidoscopy, or fecal occult blood testing (U.S. Preventive Services Task Force, 2014). Reports show that, nationally, the cervical cancer screening rate is 83%, with screening rates of 72% and 59% for breast and colorectal cancer, respectively (U.S. Department of Health and Human Services [USDHHS], 2012).
The literature on the use of cancer preventive services among individuals with mental disorders is sparse. Studies report the use of services, such as Pap smears, mammograms, and fecal occult blood tests/colonoscopies, are varied, with certain services used more than others (Carney & Jones, 2006; Lindamer et al., 2003; Martens, Chochinov, Prior, Fransoo, & Burland, 2009; Miller, Lasser, & Becker, 2007; Xiong, Bermudes, Torres, & Hales, 2008). Studies suggest individuals with conditions such as schizophrenia, bipolar disorder, and major depression are less likely to receive pelvic examinations and Pap smears than the general population (Lindamer et al., 2003; Martens et al., 2009). Other studies report low rates for breast (30%) and colorectal (12%) cancer screening in individuals with mental disorders (Xiong et al., 2008). Other studies show lower screening rates for breast cancer than for cervical and colorectal cancers (Carney & Jones, 2006; Miller et al., 2007). Reported rates are as low as 69% to 71% for cervical cancer and 30% and 12% for mammography and colorectal cancer screening, respectively (Carney & Jones, 2006; Lindamer et al., 2003; Xiong et al., 2008). Reported overall barriers to receiving care include embarrassment, lack of transportation, history of sexual abuse, and poor communication with health care providers (Miller et al., 2007; Owen, Jessie, & De Vries Robbe, 2002).
The nature of cancer screening among individuals with mental disorders is of interest to those designing, delivering, and funding public mental health services, as well as nursing practice. The incidence rate for cancer in New Jersey is higher than the national rate for all cancers combined (Cancer Epidemiology Services of New Jersey, 2012). In 2011, New Jersey's Mental Health Authority reported a total of 316,261 individuals with mental illness (Substance Abuse and Mental Health Services Administration, 2011).
The current study was a collaborative effort between the Rutgers University Departments of Clinical Laboratory Sciences (Cytotechnology Program) and Psychiatric Rehabilitation and Counseling Professions, and a statewide service agency, Collaborative Support Programs of New Jersey (CSPNJ). The project was supported with a grant from the American Society of Cytopathology, which had no role in the study's design, analysis, or manuscript preparation. The current study aimed to increase awareness on the importance of cancer screening. Recognizing trends and barriers to cancer screening in this population may encourage development of better strategies that could be used by peers and health care providers (including nurses) to facilitate access and increase use of these services for improved health and wellness.
Rutgers University Institutional Review Board approval was received before the study's inception. Participants were recruited from CSPNJ's statewide network of peer-led community wellness centers. Participants were asked to complete a survey developed to assess recency of preventive medical services and barriers. The cancer screening section of the instrument collected data on cancer awareness and use of mammograms, Pap smears, fecal occult blood testing, and colonoscopies. Questions on the use of non-cancer screening services, such as blood pressure screenings, cholesterol levels, and body mass index, as well as barriers to the use of both types of services, were included in the survey. Demographic information, including race and ethnicity, gender, primary mental health diagnosis, and marital status, was obtained. Data on barriers to screening services were also collected. Two authors (L.E.R., M.A.S.) scheduled and conducted visits to these peer-led community wellness centers between July and October 2013. Surveys were distributed to participants who met inclusion criteria and then were completed on their own. Results on the use of non-cancer screening services are reported separately (Swarbrick, Rockson, Pratt, Yudof, & Nemec, 2015). Data analysis was performed using SPSS version 21.
One hundred forty-seven peer-led community wellness center members participated in the current study. African American (39%) and White (39%) individuals were equally represented. Mean age of participants was 45 years, with more males (53%) than females participating in the study. Most participants (74%) said they were single and never married and most (43%) had received a high school diploma or GED. Only 8% of participants worked full-time, with most (45%) reporting their employment status as disabled. Most participants (68%) used Medicaid as their health insurance. The three main mental health disorders reported were bipolar disorder (26%), major depression (22%), and schizophrenia and associated disorders (29%).
Responses to the cancer screening section of the survey showed 71% of female participants had received a mammogram, whereas 89% had never received a Pap smear. Colorectal screening with either sigmoidoscopy or fecal occult blood testing was reported by 42% of participants.
Chi-square goodness of fit tests were performed to compare participant screening rates with the general population. The results suggest this population received significantly fewer screenings than the general population (p = 0.018) for colorectal cancer but similar screening rates for breast and cervical cancers.
Reasons for not receiving screening tests varied. The main reported reason (55%) why participants stated they did not receive recommended screenings was, “My doctor did not tell me to complete these tests.” The second major reason (41%) reported for not receiving screenings was, “My psychiatrist did not tell me to complete these tests.” The third main reason (31%) for not getting screened was, “I am scared about getting cancer treatments.” Other reasons for not having cancer screenings included: “I do not have a primary care doctor” (26%), “I don't want to know even if I have cancer” (25%), and “I do not have transportation to go and get these tests” (25%).
The data suggest cancer screening rates for participants enrolled in New Jersey's publicly funded, peer-led community wellness centers were the same as those for the general population (except for colorectal cancer screening). These rates may be partly attributable to wellness initiatives designed to increase the use of preventive services among individuals with mental disorders (Razzano et al., 2015; Swarbrick et al., 2013), but further study is needed to explore this possibility.
The rate for colorectal cancer screening nationally is 57%, with a comparable rate of 55% in New Jersey's general population (Centers for Disease Control and Prevention, 2010). The colorectal cancer screening rate of 42% among participants was less than the national and state rates, but higher than rates among those with mental illness reported in other studies (Lindamer et al., 2003; Martens et al., 2009; Xiong et al., 2008). Colon cancer is the second most common cause of cancer death in the United States and it is therefore critical to make assertive efforts to increase access to timely screenings and address barriers (American Cancer Society, 2013). Mental health professionals can serve a major role in educating individuals with mental disorders about the specifics of colorectal cancer and colorectal cancer screenings in addition to other types of cancer screening.
Participants also reported higher screening rates for breast and cervical cancers than those for individuals with mental illness in other studies (Xiong et al., 2008).
This population of peer-led community wellness center enrollees may be more aware of the importance of screening tests than comparable populations due to wellness initiatives organized through this network of peer-led community wellness centers. Given the lower screening rates for colorectal cancers, the current authors believe increased attention to health literacy (i.e., the ability to obtain, process, and understand basic health information and services) specific to colorectal cancer screening is important for this population. Even if the current sample is more knowledgeable about cancer screening tests, health literacy to make appropriate health decisions is important. Health literacy is lower among vulnerable members of the community and has adverse impacts on cancer screening, mortality, and quality of life (USDHHS, 2010). Individuals impacted by low health literacy often struggle to understand health conditions and need for treatment and screenings. Practitioners (including psychiatric nurses) serving this population should be versed in health literacy strategies to engage patients in dialogues related to recommending screening as well as attending to emotional concerns and related barriers.
Barriers to cancer screening in the general population include poor communication, lack of test awareness, fear, and poverty, and the current study identified similar findings (Blake et al., 2014; Daley et al., 2011; Davis et al., 2013). Physicians not suggesting cancer screenings emerged as the main barrier to screening. Failure to communicate the importance of screening could explain the lower screening rates among this group. Communication barriers with physicians were reported as the main barrier to care in other studies on screening among individuals with mental disorders (Miller et al., 2007). The fact that more than one half of participants reported a lack of discussion by primary care and psychiatric physicians on the importance of cancer screening tests may not only explain the lower screening rates but also the rates in the types of cancer screening. The current findings raise the possibility that, with limited consultation time, physicians may need to find alternative strategies to convey the importance of access to preventive screenings outlined by the U.S. Preventive Services Task Force. Physicians may focus on other health issues, such as metabolic disorders, which are also known to be prevalent in this population (Citrome, Blonde, & Damatarca, 2005).
Approximately two thirds of the current sample reported they had a primary care physician, suggesting not having access to physician care was not the only cause of low test use. Only a few participants responded that they did not follow a physician's advice to have screening tests, suggesting this was not a major barrier to screening. Other self-reported barriers to receiving the tests, such as fear of cancer, cancer treatment, and lack of transportation, seemed to have less impact on screening than poor communication.
Given the trends, as well as barriers to cancer screening in this population, the current authors believe there are opportunities to facilitate access and increase use of these services for improved health and wellness. Psychiatric nurses can play an important role in helping this population access cancer-related screenings. The Health Improvement Profile (Hardy, White, & Gray, 2015) can be a valuable guide for nurses working in community mental health settings.
Limitations of the current study are due to using a self-report strategy relying on participants' memories of screening procedures.
Results of the current pilot study highlight the need for improved communication between all providers of care and individuals with mental disorders on the importance of cancer screening, health literacy, and healthy lifestyle behaviors. Psychiatric nurses, primary care physicians, and psychiatrists treating this population should discuss recommended screening guidelines with patients to encourage increased screening participation; it is important that they consider health literacy principles and strategies in the design and delivery of engagement and health education materials. Community-based, peer-led wellness centers are also a valuable resource where information on wellness habits and behaviors and the importance of cancer screening can be disseminated (Swarbrick et al., 2013).
The current study was a unique collaboration between the Departments of Clinical Laboratory Sciences and Psychiatric Rehabilitation and Counseling Professions and a community agency. Psychosocial nurses can play an important role as members of collaborative participatory research and integrated treatment to address this unacceptable disparity.
- American Cancer Society. (2013). Cancer prevention and early detection: Facts and figures 2013. Retrieved from http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-037535.pdf
- Blake, S.C., Andes, K., Hilb, L., Gaska, K., Chien, L., Flowers, L. & Adams, E.K. (2014). Facilitators and barriers to cervical cancer screening, diagnosis, and enrollment in Medicaid: Experiences of Georgia's women's health Medicaid program enrollees. Journal of Cancer Education, 30, 45–52. doi:10.1007/s13187-014-0685-z [CrossRef]
- Cancer Epidemiology Services of New Jersey. (2012). Cancer incidence and mortality in New Jersey 2005–2009. Retrieved from http://www.nj.gov/health/ces/documents/report05-09.pdf
- Carney, C.P. & Jones, L.E. (2006). The influence of type and severity of mental illness on receipt of screening mammography. Journal of General Internal Medicine, 21, 1097–1104. doi:10.1111/j.1525-1497.2006.00565.x [CrossRef]
- Centers for Disease Control and Prevention. (2010). Health, United States, 2010. Retrieved from http://www.cdc.gov/nchs/data/hus/hus10.pdf
- Citrome, L., Blonde, L. & Damatarca, C. (2005). Metabolic issues in patients with severe mental illness. Southern Medical Journal, 98, 714–720. doi:10.1097/01.smj.0000167621.49292.11 [CrossRef]
- Daley, E., Alio, A., Anstey, E., Chandler, R., Dyer, K. & Helmy, H. (2011). Examining barriers to cervical cancer screening and treatment in Florida through a socio-ecological lens. Journal of Community Health, 36, 121–131. doi:10.1007/s10900-010-9289-7 [CrossRef]
- Davis, T.C., Rademaker, A., Bailey, S.C., Platt, D., Esparza, J., Wolf, M.S. & Arnold, C.L. (2013). Contrasts in rural and urban barriers to colorectal cancer screening. American Journal of Health Behavior, 37, 289–298. doi:10.5993/AJHB.37.3.1 [CrossRef]
- Druss, B.G., Zhao, L., Von Esenwein, S., Morrato, E.H. & Marcus, S.C. (2011). Understanding excess mortality in persons with mental illness: 17-year follow up of a nationally representative US survey. Medical Care, 49, 599–604. doi:10.1097/MLR.0b013e31820bf86e [CrossRef]
- Hardy, S., White, J. & Gray, R. (2015). The Health Improvement Profile: A manual to promote physical wellbeing in people with severe mental illness. Keswick, UK: M&K Publishing.
- Lawrence, D. & Kisely, S. (2010). Inequalities in healthcare provision for people with severe mental illness. Journal of Psychopharmacology, 24, 61–68. doi:10.1177/1359786810382058 [CrossRef]
- Lindamer, L.A., Buse, D.C., Auslander, L., Unützer, J., Bartels, S.J. & Jeste, D.V. (2003). A comparison of gynecological variables and service use among older women with and without schizophrenia. Psychiatric Services, 54, 902–904. doi:10.1176/appi.ps.54.6.902 [CrossRef]
- Martens, P.J., Chochinov, H.M., Prior, H.J., Fransoo, R. & Burland, E. (2009). Are cervical cancer screening rates different for women with schizophrenia? A Manitoba population-based study. Schizophrenia Research, 113, 101–106. doi:10.1016/j.schres.2009.04.015 [CrossRef]
- Miller, E., Lasser, K.E. & Becker, A.E. (2007). Breast and cervical cancer screening for women with mental illness: Patient and provider perspectives on improving linkages between primary care and mental health. Archives of Womens' Mental Health, 10, 189–197. doi:10.1007/s00737-007-0198-4 [CrossRef]
- Owen, C., Jessie, D. & De Vries Robbe, M. (2002). Barriers to cancer screening amongst women with mental health problems. Health Care for Women International, 23, 561–566. doi:10.1080/07399330290107322 [CrossRef]
- Parks, J., Svendsen, D., Singer, P. & Foti, M.E. (2006). Morbidity and mortality in people with serious mental illness. Retrieved from http://www.nasmhpd.org/sites/default/files/Mortality%20and%20Morbidity%20Final%20Report%208.18.08.pdf
- Razzano, L.A., Cook, J.A., Yost, C., Jonikas, J.A., Swarbrick, M.A., Carter, T.M. & Santos, A. (2015). Factors associated with co-occurring medical conditions among adults with serious mental disorders. Schizophrenia Research, 161, 458–464. doi:10.1016/j.schres.2014.11.021 [CrossRef]
- Substance Abuse and Mental Health Services Administration. (2011). 2011 CMHS uniform reporting output table New Jersey. Retrieved from http://www.samhsa.gov/data/sites/default/files/URSTables2011/NewJersey.pdf
- Swarbrick, M., Cook, J., Razzano, L., Yudof, J., Cohn, J., Fitzgerald, C. & Yost, C. (2013). Health screening dialogues. Journal of Psychosocial Nursing and Mental Health Services, 51(12), 22–28. doi:10.3928/02793695-20130930-02 [CrossRef]
- Swarbrick, M., Rockson, L., Pratt, C., Yudof, J. & Nemec, P. (2015). Perceptions of overall health and recency of screenings. American Journal of Psychiatric Rehabilitation, 18, 5–18. doi:10.1080/15487768.2015.1001703 [CrossRef]
- U.S. Department of Health and Human Services. (2010). National action plan to improve health literacy. Retrieved from http://www.health.gov/communication/hlactionplan/pdf/Health_Literacy_Action_Plan.pdf
- U.S. Department of Health and Human Services. (2012). Cancer screening—United States, 2010. Morbidity and Mortality Weekly Report, 61, 41–45.
- U.S. Preventive Services Task Force. (2010). Breast cancer: Screening. Retrieved from http://www.uspreventiveservicestaskforce.org/uspstf/uspsbrca.htm
- U.S. Preventive Services Task Force. (2012). Cervical cancer: Screening. Retrieved from http://www.uspreventiveservicestaskforce.org/uspstf/uspscerv.htm
- U.S. Preventive Services Task Force. (2014). Colorectal cancer: Screening. Retrieved from http://www.uspreventiveservicestaskforce.org/uspstf/uspscolo.htm
- Xiong, G.L., Bermudes, R.A., Torres, S.N. & Hales, R.E. (2008). Use of cancer-screening services among persons with serious mental illness in Sacramento County. Psychiatric Services, 59, 929–932. doi:10.1176/ps.2008.59.8.929 [CrossRef]