Examining Aspects of Successful Community-Based Programs Promoting Cancer Screening Uptake to Reduce Cancer Health Disparity: a Systematic Review

Abstract

Certain minorities in the US are disproportionately burdened with higher cancer incidence and mortality rates. Programs encouraging timely uptake of cancer screening measures serve to reduce cancer health disparities. A systematic literature review was conducted to assess the effectiveness and the qualities of these programs, and to elucidate characteristics of success programs to aid in designing of future ones. We focused on community-based programs rather than clinic-based programs as the former are more likely to reach disadvantaged populations, and on prevention programs for breast, cervical, and/or colon cancers as longstanding screening recommendations for these cancers exist. PubMed, CINAHL and EBSCO databases were searched for articles that utilized community organizations and community health workers. Fourteen programs described in 34 manuscripts were identified. While 10 of 14 programs reported statistically significant increases in cancer prevention knowledge and/or increase in screening rates, only 7 of them enrolled large number of participants (defined as ≥1000). Only 7 programs had control groups, only 4 programs independently verified screening uptake, and 2 programs had long-term follow-up (defined as more than one screening cycle). Only one program demonstrated elimination of cancer health disparity at a population level. While most community-based cancer prevention programs have demonstrated efficacy in terms of increased knowledge and/or screening uptake, scalability and demonstration in reduction at a population level remain a challenge.

Introduction

The overall incidence and mortality for many cancers are declining. However, cancer disparities in the United States (US) exist for certain ethnic minorities,¹ women,² sexual minorities,³ and in populations with lower health literacy and socioeconomic status (SES).⁴ Cancer disparities are multifactorial and reflect an interplay between access to healthcare resources, SES, genetic constitution, environmental exposures, cultural background, behaviors associated with high risk of cancers, stress, and most notably, level of utilization of cancer screening measures.^5,6 The community-based participatory research (CBPR) approach has been widely adopted in cancer prevention programs to address lower cancer screening uptake among racial/ethnic minorities. Community health workers (CHWs) were almost always deployed to reach these vulnerable and hard to reach populations. A study of low SES individuals in a Baltimore, MD, US smoking cessation program achieved a 23.7% 12-week quit rate in a community-based program, compared to 9.4% in a clinic-based program,⁷ supporting the idea that community-based programs may reach target minorities more efficiently than clinic-based programs. However, characteristics of CBPR-based cancer prevention programs that contribute to screening uptake are not well understood.

Therefore, to identify features of successful CBPR-based cancer prevention programs, we conducted a systematic literature review focusing on community-based cancer prevention programs in order to study programs that are more likely to reach disadvantaged populations. We focused on programs promoting prevention of breast, cervical, and colorectal cancers, as general population screening guidelines have been available for many years. The programs identified by the systematic literature review were evaluated in terms of significance of the results, sample size, verification of results, length of follow-up, the presence of control groups, and whether population-level reductions in disparity were demonstrated. While most programs demonstrated significant increases in cancer prevention knowledge and/or uptake in screening, scalability and demonstration in reduction of disparity at a population level remain a challenge.

Materials and Methods

We selected studies which utilized community organizations and CHWs in order to focus on an underserved population experiencing barriers for cancer screening uptake. A literature search was conducted in 2020 using PubMed (content coverage from 1946 to the current year), CINAHL (content coverage from 1937 to the current year), and other databases covered under EBSCO. The search terms utilized were “Cancer prevention and early detection and community health workers”, “community based participatory research and breast cancer”, “community based participatory research and cervical cancer”, “community based participatory research and colorectal cancer”, “health literacy and breast cancer”, “health literacy and cervical cancer” or “health literacy and colorectal cancer”. Duplicates were removed, and relevant manuscripts referenced in these papers which promoted screening uptake of breast, cervical, and/or colorectal cancer were added (Figure 1). Studies following outdated recommendations such as breast self-exam (BSE) and clinical breast exam (CBE) were included if they were recommended at the time the studies were performed. Being “open access” was not a requirement. The following objective criteria were established to evaluate strengths and weaknesses of the selected articles: sample size, control group, independent verification of screening uptake, and long-term follow-up. Having a participant size of less than 200 was considered a weakness, while having 1,000 or more participants was considered a strength. Having a control group for comparison of intervention results was regarded as a strength. Performing independent verification of self-reported screening measure uptake or performing the actual screening was considered to be another strength. A long-term following-up defined more than one screening cycle for respective screening method was considered to be a strength. For example, studies conducted by Clark et al. followed up with women until women received repeat mammograms⁸ or received repeat Pap smears at recommended intervals.⁹ Finally, whether the findings were reported in the respective manuscripts to be statistically significant were recorded.

Figure 1.

Schematic of systematic literature search.

Results and Discussion

Programs Identified in the Systematic Review

A literature search of PubMed, CINAHL and EBSCO databases, and other sources yielded 655, 75, 79, and 29 articles, respectively, for a total of 838 identified articles. After removing 177 duplicates and excluding 429 articles not targeting a healthy population or targeting cancer types outside the focus of this review, 232 articles were assessed for eligibility. After excluding 198 articles whose cancer prevention programs were not conducted in a community setting (i.e., programs performed in clinical settings) and did not involve a community advisory board (CAB) or CHWs, 34 articles were included in the final qualitative synthesis (Figure 1). The 34 articles identified described 14 different programs (Table 1).^8-42

Table 1.

Characteristics of studies that have utilized community-based participatory approach to increase cancer screening uptake to address cancer health disparity.

Program Name/Description	Cancer type	Target population	Study design	Program duration	Effectiveness	Funding	Ref.
Dallas Cancer Disparities Community Research Coalition	Breast cancer	Women aged 40 years or older without any personal history of cancer and residing in South and West Dallas, TX, US area.	Nonrandomized controlled trial using CBPR approach. The intervention group received more detailed educational materials.	< 1 yeara	In comparison with the control group, the intervention group was more likely to participate in screening mammogram (51% vs 80%) and perform a breast self-examination (39% vs 63%).	NCI	26
Helping Her Live	Breast cancer	Black or Hispanic women aged 40 years or older, un- or under-insured and not adherent with mammogram screenings guidelines.	CHWs provided navigation services in addition to health education about breast cancer delivered during workshops, health fairs and in person.	January 2010 – December 2014	Provision of navigation services to underserved community members helped increase mammogram completion rate (35% in 2010 vs 72% in 2014).	Susan G. Komen Foundation, Lynn Sage Cancer Research Foundation and Barbara Bates Foundation.	15,39
Cancer Prevention and Treatment Demonstration Screening trial	Breast cancer	African-American women aged 65 years or older, enrolled in fee-for-service Medicare Parts A & B and residents of Baltimore, MD, US.	Participants were randomized 1:1 to either printed educational material only (control) or to educational material and patient navigation services (intervention).	April 2006 – December 2010	Participants in the intervention group were more likely to receive a mammogram as compared to the control group (73.4% vs 45.6%).	Centers for Medicare and Medicaid Services and NCI.	17
Women’s Health Demonstration Project	Breast cancer	Women of African descent aged 18 – 75 years, not adherent with mammogram screening guidelines and residents of Boston, MA, US.	CBPR approach: Case managers provided educational material on breast cancer and navigation services.	January 2002 – February 2007	A significant increase in mammogram uptake was observed since the adoption of case management intervention (28% in 2010 to 67% in 2014).	CDC	8
	Cervical cancer	Women of Black or African descent aged 18 – 75 years, not pregnant, not adherent with Pap test guidelines and residents of Boston, MA, US.	CBPR approach: Case managers provided educational material on cervical cancer and navigation services.	January 2002 – February 2007	A significant increase in Pap test uptake was observed since the adoption of case management intervention (45% in 2010 to 74% in 2014).	CDC	9
Promotora-led program	Cervical cancer	Hispanic women 18-65 years old residing in South Philadelphia, PA, US and not adherent with Pap test guidelines.	CBPR approach: Promotoras provided cervical cancer education to the intervention group and usual care to the control group.	2010	Compared to the control group, the intervention group displayed improved cervical cancer knowledge score (3.5 vs. 5.4) and increased uptake of Pap testing (36% vs. 65%).	National Center for Research Resources.	38
		Latinas aged 21-64 years old non-adherent with Pap test guidelines and residing in Lower Yakima Valley, WA, US.	Randomized control trial with 3 arms: high-intensity arm (didactic video in Spanish language + Promotora-led home visits), low-intensity arm (video only) and control arm (usual care).	September 2011 – April 2015	Higher Pap testing uptake was observed in the high-intensity arm (53.4%) compared to low-intensity and control arms (38.7% vs. 34%, respectively). No difference was observed between low-intensity and usual care arms.	NIH	37
Bilingual CHW-led program	Cervical cancer	Vietnamese-American women aged 21 years or older non-adherent with Pap test guidelines and with no current or prior history of cervical abnormality.	Bilingual Vietnamese CHWs provided education (audio-visual and printed material in Vietnamese and English) about cervical cancer to the intervention group and the control group received printed material (in Vietnamese and English) about physical activity and a pedometer.	2006 – 2007	Higher cervical cancer screening rates were observed in the intervention group compared to control group (15% vs. 7%). Increase in Pap smear uptake was reported in the intervention group at the 6-month follow-up (21% vs. 9% in the control group).	NCI	14
		Korean American women aged 20-69 years non-adherent with cervical cancer screening guidelines and resident of Southern Pennsylvania and New Jersey, US.	Bilingual community health educators provided information about cancers and cancer screenings, and navigation to low-cost or free screening services. The control group received information about general preventive healthcare and navigation services.	February 2009 – December 2014	Screening rate in the intervention group was 72% compared to only 10% in the control group.	ACS and NCI.	31
	Breast and cervical cancer	Korean American women aged 21 to 65 years non-adherent with breast and cervical cancer screening guidelines (MD, US and DC, US area).	The intervention group received customized cancer screening brochures, health literacy trainings, telephone counseling, and navigation services. The control group received publicly available educational brochures on breast and cervical cancer.	March 2010 – November 2014.	During the post-intervention 6-month follow-up, 56.1% obtained a mammogram and 54.5 % obtained a Pap smear in the intervention group. Screening receipt rate in the control group was 10% and 9.2% for mammogram and Pap smear respectively.	NCI	36
Esperanza y Vida (Hope and Life)	Breast and cervical cancer	Latina women and their partners (a cluster-randomized peer-lead educational program was conducted in 3 US regions: Arkansas, New York City, Western New York state).	The intervention group received education about cancers and the control group received education about diabetes. Follow-up assessments were done at 2 and 8 months. Navigation support for women non-adherent with cancer screening guidelines was provided at 2 months.	November 2005 – February 2007;23 August 2007 – December 200925,40	As compared to the control group, the intervention group displayed increased BSE (45% vs 27%), CBE (48% vs 31%), Pap test (51% vs 30%) and mammography (67% vs 58%);23 Increased rate of mammography (O.R.=2.16), CBE (O R.=2.14), and Pap tests (O R.=2.14) uptake at 2 months from baseline in all participants.25	Susan G. Komen Foundation, ACS, and Oishei Foundation.	23-25,40
National Witness Project	Breast and cervical cancer	Underserved AA women	Community based, culturally sensitive health educational program targeting AA women at multiple locations [>40 sites in 22 states (2017)].	1992,21 1993-1994,22 1997-2001,19 July 2001 to January 200810	Increases in BSE21,22 and mammography;22 43.4% increase in mammography use in women aged 40 and older.19 Improved LHA training by incorporating non-traditional educational methods (57% vs. 22%)32	Arkansas Department of Health, University of Arkansas for Medical Sciences, ACS, Susan G. Komen Foundation, NCI, and Roswell Park Cancer Institute	10-12,19,21,22,32-34,41,42
Juntos en la Salud (Together in Health)	Breast, cervical, and colorectal cancer	Hispanic women aged 18 or older due for one or more cancer screenings (cervical, breast, or colorectal cancers) and residing in Phoenix, AZ, US.	Group randomized trial with CBPR approach: Promotora-led intervention delivered in Spanish language individually or in social support groups.	2004 – 2007	Higher rates of screening were observed in the social support group as well as the individual intervention group.	ACS	28,29
Health belief model based education-plus-navigation program	Breast, cervical, and colorectal cancer	Latina women (1) 40 to 74 years non-adherent with mammogram, (2) aged 18 to 65 years non-adherent with Pap test (3) aged 50 to 75 years non-adherent with CRC screening guidelines.	A single-arm, nonrandomized, pre-post design was used to evaluate the effect of the education-plus-navigation intervention.	January 2011 – July 2012	Women were more likely to obtain mammography, Pap testing, or stool blood test after attending at least 1 educational session (OR=1.7; 95% CI=1.03-2.82)	Cancer Prevention and Research Institute of Texas and NCI.	30
Healthy Colon, Healthy Life	Colorectal cancer	Vietnamese and Latino (male and female) patients aged 50-79 years with no history of cancer and residing in Santa Clara county, CA, US.	High intensity intervention group received FOBT kits, brochures (in Spanish and Vietnamese language), and tailored phone calls (by Latino and Vietnamese LHAs), the low intensity intervention group received FOBT kits and brochures only, and the control arm received usual care.	2005 – 2007	The low intensity group showed a significantly higher uptake of any colorectal cancer screening method from baseline (64.6% vs. 76.5% post-intervention). Similarly, the high-intensity group showed increased uptake of any CRC screening method (60.4% vs. 81.8% post-intervention).	NCI	18
Colorectal cancer screening promotion program	Colorectal cancer	AA or Black aged 50-75 years old non-adherent with CRC screening guidelines and at average risk of cancer with no symptoms of CRC.	Intervention group received Photonovella (culturally tailored brochures for AA population) + FIT kits, and control group received Brochure (CDC’s “Screen for Life” brochure) + FIT kits.	< 1 yeara	The FIT kit return rates were high (81.9% for the intervention group and 90.3% for the control group), but there was no significant difference in return rate between intervention and control.	ACS and NCI	13
Community outreach and education program	Colorectal cancer	Residents of Kentucky, US aged 50 years or older.	Study population received cancer prevention education face-to-face during home or office visit.	2006	More patients asked their physicians about the screening test during follow-up compared to baseline (34.1% vs. 27.6%). There were declines in the rates of worries about having cancer (2.4% to 1.1%), concerns about discomfort (8.5% to 4.6%), and embarrassment (2.5% to 0.6%).	Not specified	20
		Chinese-American aged 50–75 years non-adherent with CRC screening guidelines and residents of San Francisco, CA, US.	The intervention group received brochures (printed in English and Chinese) in addition to didactic sessions conducted by LHWs. The control group received the printed brochures only.	August 2010 – September 2013	Both groups reported an increased uptake of CRC screening. Screening uptake in the intervention group was higher as compared to the control group (88.3% vs 79.5%). (Screening uptake in intervention group pre-intervention was 73.9% and post-intervention was 88.3%, in the control group pre-intervention was 72.3% and post-intervention was 79.5%).	NCI	27
Delaware Cancer Consortium cancer control program	Colorectal cancer	All Delawareans (aged 50 or older) with a special emphasis on AA population.	Cancer screening nurse navigators and care coordinators provided navigation for both insured and uninsured patients for cancer screening and coordination of care.	2002 – 2009	The overall cancer screening rates increased from 57% to 74%, and from 48% to 74% for AAs. Incidence rate/100,000 declined from 66.9 and 58.2 for AAs and Caucasians respectively to 44.3 and 43.2 respectively. Mortality rate/100,000 declined from 31.2 and 19.5 for AAs and Caucasians to 18 and 16.9, respectively	Delaware state budget	16

Note: Characteristics of studies utilizing community-based participatory approach to address cancer health disparities are listed in this table.

Boldface values indicate statistically significance differences (p < 0.05) (or appropriate value)

^aStudy dates unspecified

Abbreviations: AA, African American; CBPR, community-based participatory research; NCI, National Cancer Institute; CRC, colorectal cancer; CHW, community health worker; CDC, US Centers for Disease Control; Pap, Papanicolaou; NIH, US National Institutes of Health; ACS, American Cancer Society; BSE, breast self exam; CBE; clinical breast exam; O.R., odds ratio; LHA, lay health advisor; LHW, Lay Health Worker; FOBT, fecal occult blood test; FIT, fecal immunochemical test; Ref., citation reference number

Four of the 14 identified programs were featured in more than one publication and are here described, in brief. The National Witness Project (NWP) provides education and navigation for breast and cervical cancer prevention among African American (AA) women through use of lay health advisors (LHAs), termed “Witnesses;” many of whom are themselves survivors of these cancers.¹⁹ The NWP educational programming is delivered in a culturally-tailored manner, using Witness testimonials and faith-based elements that can be resonant with the AA community.¹² It is a particularly long-lived program, having originated in 1990 and still active today.²¹ The success of the NWP gave rise to a similar program, Esperanza y Vida (“Hope and Life”), which targets Latina women. Though culturally distinct from AA women reached through NWP, Latina women are reached through Esperanza y Vida programs using LHAs (consejeros, “counselors”) and cancer survivor role model survivors (Sobrevivientes), an analog of NWP Witnesses.²⁴ Interventions were delivered in English and in Spanish, and being Spanish-English bilingual was required to be an LHA or sobreviviente. The Esperanza y Vida program randomized participants into two groups: the intervention, which received breast and/or cervical cancer education, and control, which received diabetes education (see the “Analyses of Program Effectiveness” section below for results). A third program, Juntos en la Salud (“Together in Health”), aimed to increase cervical, breast, or colorectal cancer (CRC) screening uptake in Latina women by employing two intervention methods in a randomized fashion led by promotoras (Latina community health educators). One intervention was delivered in one-on-one sessions, and the other was a group intervention emphasizing social support and participant interaction.²⁹ A fourth program, “Helping Her Live,” targeted Chicago, IL, US-area AA and/or Hispanic women who were un-/under-insured and not adherent with mammography screening. Helping Her Live used CHWs to meet two primary objectives: perform breast health education outreach in the community, and serve as navigators to ensure mammography uptake and follow-up, as needed.¹⁵

Qualitative Analysis of Objective Criteria

Sample Size

Of the articles and cancer prevention programs surveyed in this article, two programs reached the largest number of participants: the Delaware Cancer Consortium cancer control program, which provided >10,000 navigations and 5,000 CRC screenings; and NWP, which has reached over 10,000 participants, and continues to the present day (Table 2). Other programs meeting the criteria for large studies (N≥1,000 participants) include Helping Her Live, the Cancer Prevention and Treatment Demonstration Screening Trial, Esperanza y Vida, Juntos en la Salud, and Healthy Colon, Healthy Life (Table 2). Participant sample sizes of all programs are presented in Table 2.

Table 2.

Characteristics of studies that have utilized community-based participatory approach to increase cancer screening uptake to address cancer health disparity

Large (≥1,000 participants)
Program Name/Description	n	Ref
Helping Her Live	4461 total approached; 3291 requested navigation	15
Cancer Prevention and Treatment Demonstration Screening Trial	638 (intervention group), 720 (control group)	17
Esperanza y Vida (Hope and Life)	1179 women, 225 men (intervention group), 789 women, 349 men (control group)	25
	1073 women, 160 men	40
	487 women, 163 men, 19 unreported gender	23
National Witness Project	>10,000	19
	~2700	10
	216	22
	78	21
Juntos en la Salud (Together in Health)	604 (social support group) 402 (individualized intervention group)	28,29
Healthy Colon, Healthy Life	765 (Low-intensity group), 768 (High-intensity group), 256 (usual care group)	18
Delaware Cancer Consortium cancer control program	>10,000 navigations, >5,000 colorectal cancer screenings	16
Moderate (200-999 participants)
Program	n	Ref
Women’s Health Demonstration Project	437	8
	732	9
Promotora-led program	146 (high-intensity group), 150 (low-intensity group), 147 (control group)	37
Bilingual CHW-led programs (Korean CHW-based interventions)	290 (intervention group), 298 (control group)	31
	278 (intervention arm), 282 (control group)	36
Health belief model based education-plus-navigation program	691	30
CRC Screening Promotion program (Culturally-targeted photonovella+FIT kit intervention)	144 (intervention group), 186 (control group)	13
Community outreach and education program	637	20
	383 (intervention group), 373 (control group)	27
Small (<200 participants)
Program	n	Ref
Dallas Cancer Disparities Community Research Coalition	59 (intervention group), 60 (control group)	26
Promotora-led program	34 (intervention group), 36 (control group)	38
Bilingual CHW-led programs (Vietnamese LHW-based intervention)	84 (intervention group), 90 (control group)	14

Abbreviations: CHW, community health worker; CRC, colorectal cancer; LHW, lay health worker; FIT, fecal immunochemical test; Ref., citation reference number

Independent Verification of Screening Uptake

Three programs (Women’s Health Demonstration Project, Promotora-led program, and Bilingual CHW-led program) independently verified whether participants underwent screening measures by reviewing the medical records of the study participants, which ensures greater validity over self-reported screening uptake. One program, the Delaware Cancer Consortium cancer control program actually performed the screening measure itself (Table 3).

Table 3.

Summary of strengths of surveyed CBPR-based cancer prevention programs.

Program Name/Description	Results statistically significant	Large sample size	Verification of screening uptake	Use of control group	Follow-up for more than one screening cycle	Other
Dallas Cancer Disparities Community Research Coalition	☆			☆
Helping Her Live		☆
Cancer Prevention and Treatment Demonstration Screening Trial	☆	☆		☆
Women’s Health Demonstration Project	☆		☆		☆
Promotora-led program	☆		☆	☆
Bilingual CHW-led program	☆		☆	☆
Esperanza y Vida (Hope and Life)	☆	☆		☆
National Witness Project		☆				Many programs at various locations in the US
Juntos en la Salud (Together in Health)		☆		☆	☆
Healthy Colon, Healthy Life	☆	☆		☆
Health belief model based education-plus-navigation program	☆
Colorectal cancer screening promotion program	☆	☆		☆
Community outreach and education program	☆
Delaware Cancer Consortium cancer control program	☆	☆	☆			Disparity in CRC screening rates between Caucasians and African Americans eliminated

Note: Five-pointed stars indicate meeting “strength” objective criteria

Abbreviations: CHW, community health worker; CRC, colorectal cancer;

Control Groups

Sorting of participants into control groups was widespread; 7 of 14 programs included such a design (Table 3). Control groups were comprised of interventions with varying levels of intensity,³⁷ one-on-one vs. group-based delivery,²⁸ informational brochures with or without LHW-led didactic sessions,²⁷ and studies that focused on health disparities other than cancer, such as diabetes.²³

Long-term Follow-up

Only two of the surveyed programs performed follow-up of more than one screening cycle: the Women’s Health Demonstration Project⁹ and Juntos en la Salud (Table 3).²⁸

Analyses of Program Effectiveness

The primary means of delivering the programs reviewed here involves educational materials with or without in-person educational sessions. Educational materials utilized in the reviewed articles were customized brochures^14,26,27 and/or audio-visual content.^14,37 One CHW-led program administered in-person education on CRC knowledge, prevention, and screening in either home or office visits. This program, designed to increase knowledge about CRC, reported that a larger number of participants were inquiring about the screenings to their providers post-intervention (27.6% to 34.1%, p=0.013).²⁰ The Dallas Cancer Disparities Community Research Coalition program provided AA women written breast health educational materials-alone (control) or in combination with once-weekly didactic sessions (intervention). Women in the intervention group who attended 6 or more sessions were 15.5 times (95% confidence interval, CI=3.86–62.15) more likely to report completing a mammogram compared to control.²⁶ The study reported by O’Brien and colleagues, which utilized promotoras to increase Pap testing uptake in Philadelphia, PA, US, again demonstrated the utility of didactic educational sessions. Participants in this program were randomized to receive a promotora-led intervention, or usual care (control). A significant increase from baseline in cervical cancer knowledge was reported in the intervention group (2.2 score vs. 0.2 score, p<0.001). Similarly, a significant increase in Pap test completion at 6 months was observed in the intervention group compared to control (71% vs. 22%, p=0.004).³⁸ These studies suggest that in-person sessions appear to augment the effectiveness of educational materials alone, in regards to both increased cancer knowledge and screening measure uptake. Thus, in-person didactic sessions appear to confer greater benefit than educational materials alone in cancer prevention programs. In lieu of in-person sessions, the Healthy Colon, Healthy Life program utilized telephone counseling, and provided participants with fecal occult blood test (FOBT) kits to encourage CRC screening in resource-poor settings. Latino and Vietnamese residents of Santa Clara County, CA, US were randomized to receive usual care (Group 1, control), FOBT kit plus brochures (Group 2), or FOBT kit plus brochures and tailored telephone counseling (Group 3). They noted that the odds of being up-to-date with FOBT test was 1.89 (95% CI=1.34–2.66) for Group 3 compared to control. They also reported that the uptake of any CRC screening method was higher in Group 3 (21.4%) compared to Group 2 (11.9%) and the control arm (4.1%).¹⁸ A similar randomized, controlled study of a CRC screening promotion program targeted AA individuals, a population that is more susceptible to CRC.⁴³ The program provided fecal immunochemical test (FIT) kits and either a culturally-tailored Photonovella (intervention) or a generic “Screen for Life” brochure (control) to AA individuals in the Tampa Bay, FL, US area. They reported that the odds of failure to return FIT kits were higher for those with stronger religious beliefs (odds ratio, OR=1.09; 95% CI=1.02–1.16, p=0.015), and for those with lower health literacy (OR=1.18, 95% CI=1.06–1.33; p=0.003).¹³ Taken together, educational materials alone may be difficult to increase cancer screening uptake; however, supplemental, in-person didactic sessions appear to augment the effects of education alone.

A secondary means of delivering cancer prevention interventions involves the use of patient navigators to augment the effects of education. Navigation services provided by the selected programs involved providing information about local healthcare resources,^15,16,25,30 making appointments for participants,^{8,9,15-17,25,30,31} accompanying them to appointments,^17,19,25 or even performing the screening measures themselves.¹⁶ Of the programs surveyed in this review, the Delaware Cancer Consortium cancer control program utilized multiple navigation approaches. This program aimed to increase CRC screening, provide treatment for the uninsured, and reduce CRC disparity for AA Delawareans.¹⁶ A nurse navigation system was developed, which provided navigation and care coordination at five acute care hospitals. The nurses handled over 10,000 navigations and completed 5,000 CRC screenings over 7 years. The statewide CRC screening rate increased from 57% to 74% between 2001 and 2009, which became virtually equal for Caucasians (74.7%) and AAs (73.5%). The mortality rate (per 100,000) for AA declined from 31.2 to 18.0 (p<0.001) and that for Caucasians declined from 19.5 to 16.9 (p=0.002).¹⁶ Taken together, this program suggests that navigation is instrumental in screening uptake and mortality reduction for CRC in a vulnerable population. Another program, the Cancer Prevention and Treatment Demonstration Screening trial, examined the effects of education and navigation on mammography uptake in AA female Medicare beneficiaries in Baltimore, MD, US. This study randomized participants into either printed educational materials-only or printed educational materials plus navigation. They reported that education and navigation significantly increased cancer screening uptake (OR=2.26; 95% CI=1.59–3.22) compared to educational materials-only.¹⁷ On the other hand, simply participating in an in-person didactic session may be beneficial on its own, as is the case with Esperanza y Vida studies. Esperanza y Vida program participation (i.e. attending group educational sessions, either cervical/breast [intervention] or diabetes [control]) was associated with significant increases in mammography (OR=2.16), CBE (OR=2.14), and Pap smears (OR=2.14) at the 2-month follow-up period in both groups. However, screening measure uptake did not vary between the intervention and control.²⁵ One possible explanation is that simply attending a health education program and navigation assistance can help improve uptake of cancer screening measures. Another prolific education plus navigation program, “Helping Her Live,” achieved contact with 4,461 women through outreach; 3,291 of which requested navigation support. Helping Her Live achieved an increase in annual completion rate of mammography from 35% in 2010 to 72% in 2014.¹⁵ Han et al. conducted a bilingual CHW-led program which incorporated health literacy-focused education and navigation intervention targeting Korean American women.³⁶ Their intervention group received cancer screening brochures, health literacy skills training, and telephone navigation assistance; and their control group received publicly available educational brochures related to breast and cervical cancer. Participants in the intervention group not only had a 7-point score increase in average health literacy (95% CI=4.9-9), but also greater likelihood of completing a mammogram (OR=18.5; 95% CI=9.2–37.4) and Pap smear (OR=13.3; 95% CI=7.9–22.3). A final program utilizing navigation services, the Women’s Health Demonstration Project, targeted AA women at high risk for inadequate cancer screening defined as a history of missed follow-up and frequent urgent care use. This program’s “multipronged” approach aimed to address social/logistic health status barriers, patient-clinician communication barriers, and health systems barriers in a case management and navigation-based intervention.⁸ A commendable characteristic of this program is that participants were tracked for up to 4 years after program completion to evaluate screening adherence, which was independently verified.^8,9 This program demonstrated a higher proportion of participants completing at least one screening mammogram after 4 or more years of participation (67%) compared to 28% at study entry.⁸ The same program reported a higher proportion of participants completing a Pap smear after 4 or more years of participation (74%) compared to 45% at study entry. On the other hand, Pap smear uptake was reduced for those who were uninsured (OR=0.27; 95% CI=0.08–0.86) or had public insurance (OR=0.36; 95% CI=0.13–0.99).⁹ Collectively, these studies emphasize the importance of navigation services as a part of any cancer prevention program, either alone or in conjunction with educational materials.

In order to better reach the minority populations most subject to cancer health disparities, many of the surveyed programs incorporated culturally-tailored educational materials and/or bilingual LHWs. Numerous lines of evidence, principally misconceptions about cancers, support the notion that interventions incorporating sociocultural sensitivities/tailoring may better reach a program’s target population. It has been reported that some AA women believe that breast cancer “is a white woman’s disease;” a belief that may contribute to lower screening uptake and a higher breast cancer-associated mortality.⁴⁴ Like AA women, Hispanic/Latina women also face cultural hurdles. Beliefs such as a Pap test is required only in cases of poor hygiene, certain sexual activities, or symptoms, might contribute to poor uptake of Pap testing amongst Latina women,⁴⁵ which may be a contributing factor of higher cervical cancer incidence in Hispanic women.⁴⁶ In addition to the cultural hurdles, language can also be a distinct hurdle for some Latina women hindering cancer screening uptake.⁴⁷ One example of cultural tailoring was the CRC screening promotion program providing Photonovellas targeting AA individuals.¹³ Each of the two groups of the study received a FIT kit. The intervention group’s Photonovella was designed to appeal to AA audiences, and was reported to contain little text in favor of graphics and photos. The primary efficacy endpoint of the intervention, CRC screening uptake, was high in both groups; however, this increase in screening uptake did not differ between intervention and control.¹³ While 81.9% in the Photonovella group returned FIT kits within 6 months, a slightly higher proportion of participants in the control group (90.3%) returned FIT kits within 6 months.¹³ An exemplar program incorporating socioethnically-tailored approaches to program administration was the NWP. Intentionally referring to LHAs in this program as “Witnesses” connotes spirituality in AA communities (particularly in fundamentalist Christian churches), whereby a congregant witnesses a particular event and how that individual was subsequently changed.²¹ Witness moments, offered by AA cancer survivors themselves in NWP, are also recapitulated through other program elements that resonate deeply with AA cultural norms, such as hymn singing and group prayers.¹² In 1992, significantly more women performed BSE after the intervention (n=33, 53.2%, p<0.001).²¹ In 1996, there was a significant rise in the number of women completing mammograms (p<0.01) and regular BSE (p<0.001).²² By 2003, of the previously unscreened women (n=223), 72% (n=161) completed a mammogram after attending the program.¹⁹ The NWP is still active and has been successful in engaging a large community population. The related Esperanza y Vida program targeted not only diverse immigrant Latinas, but also their male partners, through incorporation of family values, religious themes, and gender roles that can be characteristic of Latin American culture. Although Esperanza y Vida, as was the case with NWP, did not systematically study the effects of sociocultural tailoring, the program demonstrated positive results. In 2008, the OR for completing a Pap smear was 3.9 (p=0.0437), 2.2 for CBE (p=0.0213), and 2.3 for BSE (p=0.0409).²³ By 2014, the intervention was successful in increasing the adherence to CBE, mammography and Pap smear in a large number of community members (OR=4.05; 95% CI=3.39–4.85, OR=8.56; 95% CI=5.85–12.53, and OR=2.35; 95% CI=2.00–2.76 respectively).²⁵ The study performed by Thompson and colleagues had a culturally-tailored design. Female participants that were nonadherent with Pap testing guidelines were randomized to receive usual care (control), a culturally-tailored Spanish language video delivered to the participants’ homes (low-intensity), or the same video plus an in-home visit by a promotora who presented cervical screening educational information (high-intensity). While more women in the high-intensity arm obtained Pap testing (53.4%) compared to both low-intensity (38.7%, p<0.01) and usual care (34.0%, p<0.001) arms, no difference was observed between the low-intensity and usual care arms (p=0.40).³⁷ These results suggest that in-home visits were effective in increasing Pap test uptake, but not the culturally-tailored material. As demonstrated by the Photonovella study mentioned above, while providing health education material is effective, making it culturally tailored has not been demonstrated to yield significant additional benefit.

Other programs were designed to reach non-native speakers of English by delivering interventions in the target population’s language.^{14,18,23-25,27-31,36,38,40,48} One such program recruited lay health workers (LHWs) who grew up in Vietnam or were well-versed in Vietnamese culture to promote cervical cancer screening uptake among Vietnamese immigrant women. Pap smear uptake was higher in the intervention group (which received audiovisual content and printed educational material) (33%) compared to control (18%), which received a pamphlet and fact sheet (p=0.02).¹⁴ Similar increases in screening uptake after participation in bilingual cancer prevention programs have been demonstrated in Chinese Americans,²⁷ Korean Americans,³¹ and Latina American women.³⁰ The ability of a participant to benefit from a cancer prevention program implicitly depends on delivery in the participant’s preferred language. However, we did not identify any studies which tried to demonstrate the effectiveness of multilingual delivery vs. English only. Therefore, the effectiveness of providing materials and navigators in the language the participant can understand has not been formally evaluated.

Although much emphasis is placed on the design and implementation of a CBPR-based cancer prevention program, one of the ultimate determining factors of scalability and longevity is funding. As illustrative examples of the importance of funding, programs have reported eliminating a control group,⁸ or having difficulty retaining working staff¹² due to lapses or loss of funding. Of the surveyed programs, funding consisted of one or more of the following: Centers for Disease Control, intramural government grants (e.g. National Institutes of Health), grants from private agencies (e.g. American Cancer Society), state budgets,¹⁶ and academic healthcare center support. Perhaps the most instrumental aspect of the Delaware Cancer Consortium cancer control program’s success was generous funding through the Delaware state budget.¹⁶ Other programs, such as NWP and Helping Her Live,^{11,12,15,19,21,22,32,34,42} maintained program funding from multiple funding sources. Their availability may have made the programs resistant to extinction from shifts in program funding priorities of the funding agencies as well as reduced amounts of funding. Although it is difficult to associate funding with program success, both of these programs reached large numbers of participants. On the other hand, studies with a singular funding source tend to be active only for a shorter period.^26,38 Taken together, these studies suggest that multiple funding sources, or funding by local/state governments, may contribute to a program’s success and/or longevity.

A defining feature of the CBPR approach is the partnership of academic research teams and community stakeholders, which facilitates bi-directional learning. Community organizations relay information to the research team about the community- or minority-specific social determinants of health,^8,9 and research teams can demonstrate the research process to communities with limited experience participating in research.⁴⁹ One mechanism of including community input is through a CAB. Community leaders and CABs provide assistance with planning and implementation,²⁷ leadership and guidance,¹⁶ preparation of intervention material,¹³ and participant recruitment.³¹ The CAB formed in the Dallas Cancer Disparities Community Research Coalition program was a diverse mix of 10 community leaders who were residents, political leaders, and local non-profit organization members. As co-investigators, they participated in intervention/methodology planning and implementation, and helped with data acquisition, interpretation, and dissemination.²⁶ In contrast, the CAB in the CRC Screening Promotion program consisted of three LHAs and one physician who was knowledgeable of the community’s health care issues and could access healthcare records.¹³ The Juntos en la Salud program formed a Hispanic Advisory Board (HAB), analogous to a CAB in functionality. The HAB reviewed the study design according to Hispanic cultural norms and contributed to the development of didactic materials.²⁸ It also aided participant recruitment by establishing referral relationships with clinics.^28,29 As evidenced by these various aspects of designing, planning, and implementing a cancer prevention program, CABs serve many pivotal functions. However, it is less clear whether community input is a direct contributor to the success of a program, owing to the lack of studies comparing the efficacy of programs with community input and those without. A second mechanism for including community input is employing CHWs, also known as LHAs or promotoras de salud (health promoters).²⁹ CHWs are not necessarily healthcare providers, but instead link medical providers and the underserved community.²⁰ They serve as community health educators, and also may provide navigation services.¹⁹ An ongoing barrier to success of these programs is that CHW services are neither billable nor reimbursable.⁵⁰ While compensation may be useful for recruiting CHWs, appropriately training CHWs can increase an intervention’s effectiveness, as was shown in NWP.³² CHW training intensity varied across the surveyed programs. The Health belief model based education-plus-navigation program trained promotoras for two weeks to educate them about cancer risk factors, and to teach study procedures.³⁰ Another similar program, Healthy Colon, Healthy Life, trained CHWs for counseling delivery skills.¹⁸ CHWs in NWP received practical training using role-playing scenarios.³² The NWP reported that educating LHAs about breast and cervical cancer led to a 79% improvement in mastering the intervention’s didactic information.¹⁹ Training not only ensures precision in the administration of the intervention,³⁶ but it may also help with CHW retention and reduce burnout,¹² which is associated with loss of time and resources. In conclusion, and given the important role of the CHW in attaining program objectives, providing financial support (stipend or salary) and training may be necessary for sustained program delivery.

Study Limitations

The process of anonymous peer review, standard in the review process for both scientific publications and grant funding, places a strong emphasis on program novelty. Thus, an inherent limitation of our review is a possible undersampling of cancer prevention programs due to a publication bias of novel work. Cancer prevention programs that demonstrate effectiveness are published initially. However, it would be less likely to publish additional articles or receive continued/additional funding due to lack of novel contributions to the scientific community. Therefore, sustainability of particular programs are extremely difficult to discern.

Conclusions

In conclusion, most of the community-based cancer prevention programs surveyed in this review have demonstrated efficacy, and programs not demonstrating efficacy still provide useful insight as to other facets of CBPR-based programs, such as CHW training and retention. Educational materials alone are difficult to increase screening rates; however, the addition of in-person didactic sessions or navigation services can increase a program’s efficacy. We only found a few programs that incorporated culturally-tailored material, and they did not result in enhanced uptake beyond what was achieved by providing navigation. Further studies are warranted in this area. Other program characteristics, such as the participation of community institutions and community members, could contribute to improved program delivery, but were not evaluated. Aspects such as input from community organizations and CHWs provide valuable insight for CBPR-based programs.^51,52 Other key characteristics contributing to the success of any behavioral change intervention, including scalability and sustainability, are likely linked with consistent funding from diverse sources. The contribution of program funding to a programs scalability and sustainability can be approximated by the results reported in Delaware Cancer Consortium cancer control program, and the NWP. State funding, in part, enabled the Delaware intervention to successfully address racial cancer health disparities on a large scale.¹⁶ Similarly, multiple funding sources may have allowed the NWP to sustain for >10 years.⁵³ An immense heterogeneity in cancer prevention programs utilizing the CBPR approach exists; few programs and publications share multiple design characteristics. Health disparities is a complex issue and coordinated efforts from government bodies, healthcare institutions, local organizations, and community members is imperative to successfully address these issues in a community, not only to enhance cancer prevention measures but availabilities of treatments and clinical trials. We suggest that cancer prevention programs incorporating a comprehensive approach, including education, navigation, and actually performing the screening is ideal for reducing cancer morbidity and would likely be more effective.

Preventive Medicine Highlights.

• Education programs with navigation can increase cancer screening

• Program sustainability depends highly on diverse funding sources

• Cultural tailoring does not appear to increase program effectiveness

• Study design input from local community organizations is desireable