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Standardized Global Behavioral and 
Epidemiological Measures for Prostate 
Cancer Studies in Black Men 
Folakemi T. Odedina,1§+* Camille Ragin,2§++ Damali Martin,3 Richard P. Moser, 3 JoAnn S. Oliver,4++ Alicia C. 
McDonald,5++ Elise L. Rice,3 Jennifer Nguyen,6+ Frank Chinegwundoh,7+ Belinda Morrison Blidgen,8++Ernest 
T. Kaninjing,9+ Mohamed Jalloh,10 R. Renee Reams11+ 

1Department of Pharmacotherapy and Translational Research, University of Florida, Orlando, Florida, USA; 2Cancer 
Prevention and Control program, Fox Chase Cancer Center, Philadelphia, PA, 19111, USA; 3Division of Cancer Control 
and Population Sciences, National Cancer Institute, Rockville, MD 20850; 4The University of Alabama, Capstone 
College of Nursing, Box 870358, Tuscaloosa, AL 35487, USA; 5Department of Public Health Sciences, Pennsylvania 
State University College of Medicine, Hershey, PA 17033, USA; 6 College of Pharmacy, Mercer University 3001 Mercer 
University Drive, Atlanta, GA 30341, USA; 7Barts Health NHS Trust & Harley Street, London, UK; 8Department of 
Surgery, University of the West Indies, Mona, Kingston 7, Jamaica; 9 School of Health and Human Performance, 
Georgia College, Campus Box 112, Milledgeville, GA 31061, USA; 10Hopital General De Grand Yoff, Dakar Senegal; 
11College of Pharmacy and Pharmaceutical Sciences, Florida A&M University, Tallahassee, FL, USA;  
 +Member of Prostate Cancer Transatlantic Consortium (CaPTC)  
++Member of African Caribbean Cancer Consortium (AC3) 
§ Both Dr. Folakemi Odedina and Dr. Camille Ragin are first authors.  
*Corresponding author: Folakemi Odedina. Fodedina@cop.ufl.edu 
 

ABSTRACT: Multicenter trans-national studies may be required to understand the complex causes of and solutions 
to prostate cancer disparities in Black men. In 2014, two cancer epidemiology consortia supported by the US 
National Cancer Institute (NCI), the Prostate Cancer Transatlantic Consortium (CaPTC) and African-Caribbean 
Cancer Consortium (AC3), formed a consortia alliance to address the disproportionate burden of prostate cancer 
in Black men. As part of the alliance, this global study focused on developing standardized and culturally tailored 
data elements and measures for prostate cancer research in these populations. The study objective was achieved 
by a Consensus Working Group using the NCI–Grid-Enable Measures (GEM) platform. The Consensus Working 
Group members were assigned to two Special Interest Groups to focus on behavioral and epidemiology topics. 
Based on crowd-sourcing methodology, the initial standardization decisions were made by each group using 
GEM. This was followed using nominal group technique to build consensus. Finally, a one-day consensus 
development conference was held to facilitate the input of the scientific community. The use of the GEM platform, 
nominal group technique and a consensus development conference resulted in agreement among stakeholders 
for a recommended set of measures that included 25 behavioral scales and 24 epidemiological scales. The 
measures developed in this process will facilitate data harmonization and data sharing for multiethnic studies of 
Black men globally and these measures can be used by other researchers in this area. 
 
KEYWORDS: Prostate Cancer; Black Men, Behavioral Measures, Epidemiological Measures, Cancer Disparity 

Citation: Odedina FT (2019) Standardized Global Behavioral and Epidemiological Measures for Prostate 
Cancer Studies in Black Men. 4: e1-e16. doi:10.9777/chd.2019.1014 
  

mailto:Fodedina@cop.ufl.edu


 
 
 
 
 

 
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INTRODUCTION 

Globally, prostate cancer is the second most 
frequently diagnosed cancer in men and the fifth 
leading cause of cancer deaths among men 
(Ferlay et al., 2013). While little is known about 
prevention and risk reduction for prostate cancer, 
three risk factors have been long-established: age, 
family history and African descent (American 
Cancer Society, 2018). US Black men have been 
reported to have the highest incidence, highest 
mortality and lowest 5-year relative survival rates 
compared to other US racial/ethnic groups 
(American Cancer Society, 2018). The growing 
literature supporting the unequal burden of 
prostate cancer among men of African descent in 
Africa and the Caribbean underscores the 
significance of this public health issue (Akang, 
Aligbe, & Olisa, 1996; Ben-Shlomo et al., 2008; 
Chinegwundoh et al., 2006; Dawam, Rafindadi, & 
Kalayi, 2000; Eke & Sapira, 2002; Ekwere & Egbe, 
2002; Jackson et al.,1980; Magoha, 1995; 
Mohammed, Alhassan, Edino, & Ochicha, 2003; 
Nwana, Mohammed, & Anjorin, 2005; Ogunbiyi & 
Shittu, 1999; Ogunbiyi, 2000; Oranusi, 2004; 
Osegbe, 1997; Udeh, 1981; Ukoli et al., 2003) 

The multifactorial risk factors of prostate cancer 
disparity in men of African descent and the need 
for a unique approach to better understand and 
address this disease has resulted in many 
researchers opting for a team-science approach 
that is multilevel, collaborative, transdisciplinary, 
translational, and global. Facilitated by the United 
States (US) National Cancer Institute (NCI) 
Epidemiology & Genomics Research Program 
(EGRP), a number of cancer consortia have 
emerged to effectively address the environmental, 
lifestyle, and genetic risk factors underlying 
prostate (Burgio et al., 2013). Two independently 

led cancer consortia supported by the NCI/EGRP, 
the Prostate Cancer Transatlantic Consortium 
(CaPTC; https://epi.grants.cancer.gov/captc), and 
African-Caribbean Cancer Consortium (AC3; 
http://ac3online.org) collaborated in 2014 to 
effectively address prostate cancer disparity 
among Black men. 

The CaPTC was formed in 2005 to address the 
global disproportionate burden of prostate cancer 
among Black men. CaPTC members focus on 
studying Blacks who are connected by the 
Transatlantic Slave Trade, with the goal to explore 
and quantify the magnitude of prostate cancer 
morbidity and mortality variance. Additional goals 
of CaPTC includes the investigation of: genetic and 
environmental etiology of prostate cancer, using 
valid and reliable instruments and biomarkers; and 
the development of ethnically sensitive, targeted 
approaches that will contribute to the elimination 
of prostate cancer disparities. The AC3, formed in 
May 2006, investigates the viral, genetic, 
environmental, and lifestyle risk factors for cancer 
in populations of African descent populations in 
the US, Africa and the Caribbean. The primary 
aims of AC3 are to conduct multi-centered 
research studies within an international research 
network through collaboration, capacity building, 
and training. In addition, investigators in AC3 aim 
to translate the study findings to targeted 
interventions that will reduce the incidence and 
mortality of cancer in African descent populations. 

To accelerate the pace of implementing 
population-based interdisciplinary research aimed 
at eliminating the disproportionate burden of 
prostate cancer in Black men globally, CaPTC and 
AC3 agreed to a consortia collaboration in 2014. A 
primary challenge for this large–scale research 
collaboration is the differences in study measures 

https://epi.grants.cancer.gov/captc
http://ac3online.org/


 
 
 
 
 

 
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employed by consortia investigators. These 
differences created the additional challenge of 
pooling of existing data to generate findings that 
will move the science forward. Thus, the primary 
goal of this study was to develop standardized 
global CaPTC-AC3 Behavioral and Epidemiological 
(CABE) constructs and measures that are culturally 
tailored for studying prostate cancer in Black men. 

MATERIALS AND METHODS 

The study objective was achieved by a Consensus 
Working Group comprising members of the 
CaPTC and AC3 (Table 1). In addition, an NCI 
Epidemiology and Genomic Research Program 
(EGRP) program director and two representatives 
from the NCI’s Behavioral Research Program (BRP) 
provided their expertise on the Consensus working 
groups. The Consensus working groups achieved 
consensus using the NCI Grid-Enabled Measures 
(GEM) platform, nominal group technique, and a 
consensus-development conference. For this 
study, consensus was defined as the extent to 
which members of the Consensus working groups 
agree with each other on the appropriateness of 
the data collection tools and procedures. 

Initial standardization decisions through GEM. 
GEM is a dynamic, web-based collaborative tool 
used to gain consensus on the use of common  

measures for prospective research (Moser et al., 
2011). This platform enables a variety of 
stakeholders to evaluate measures by providing 
qualitative and quantitative feedback through 
collaborative workspaces. GEM is a publicly-
available resource (see: https://www.gem-
measures.org/Public/Home.aspx). The ultimate 
goal is to achieve harmonized data that can be 
shared and analyzed. With the support of NCI’s 
BRP’s, CaPTC-AC3 virtual workspaces were set up 
for the behavioral and epidemiological consortia 
measures to foster standardization of study 
constructs and measures. 

In April 2016, a series of web conferences was 
conducted to discuss and finalize the 
methodologies for the initial standardization 
through GEM, the nominal group technique and 
consensus development meetings. Web 
conferences were also used to train Consensus 
Working Group members on the use of GEM and 
the nominal group technique process. In addition, 
Consensus Working Group members were 
assigned to two Special Interest Groups (SIGs), 
behavioral SIG and epidemiology SIG. The SIGs 
were chaired by the CaPTC and AC3 principal 
investigators (see Table 1). 

Table 1: Behavioral and Epidemiology Consensus Working Group. 
Behavioral Special Interest Group (SIG) Epidemiology Special Interest Group (SIG) 
Folakemi T. Odedina, PhD (Moderator, CaPTC) Camille Ragin, PhD (Moderator, AC3) 
JoAnn Oliver, PhD (AC3) Renee Reams, PhD (CaPTC) 
Elsie Rice, PhD (NCI) Damali Martin, PhD (NCI) 
Catherine Oladoyinbo, PhD –(CaPTC) Alicia McDonald, PhD (AC3) 
 Mohammed Jalloh, MD (MADCaP) 
 

Following the web conferencing, GEM was used 
for the initial standardization decisions based on 

crowd-sourcing methodology. First, the consortia 
principal investigators populated the GEM 

https://www.gem-measures.org/Public/Home.aspx
https://www.gem-measures.org/Public/Home.aspx


 
 
 
 
 

 
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consortia workspaces with their existing consortia 
study constructs and measures for prostate cancer 
behavioral and epidemiological constructs. 
Subsequently, the Consensus Working Group 
members worked in their respective SIGs to rate 
and provide critical feedback that drove initial 
consensus for the CABE constructs and measures. 
Consensus Working Group members met within 
their respective SIGs to review all CABE constructs 
and measures uploaded by the consortia; 
discussed supporting literature for the measures; 
conducted literature reviews for additional 
measures when necessary; and provided 
recommendations for consortia CABE constructs 
and measures for prostate cancer. Discussion 
boards in the GEM workspace and 
videoconferences were utilized for discussions and 
notes. The initial standardization was completed 
on October 2016. 

Nominal group technique 
Nominal group technique involves the use of 
expert panels to build consensus. We adapted the 
nominal group technique methodology proposed 
by Jones and Hunter (1995) for the second phase 
of consensus for the consortia CABE constructs 
and measures. All members of the Consensus 
Working Group met in person on Nov 8, 2016 
prior to the Science of Global Prostate Cancer 
Disparities in Black Men conference, in Orlando, 
Florida, USA. Prior to the meeting, Consensus 
Working Group members provided pre-meeting 
rankings on the appropriateness of data elements 
for all the CABE constructs and measures on a 
ranking sheet using a scale ranging from 1 
(inappropriate) to 9 (appropriate). 

The nominal group meeting was used to forge 
consensus for the constructs and measures. For 
the measures, the Consensus Working Group 
strongly weighed the reliability and validity 

evidence of the measures as well as cultural 
relevance of the measures in African Americans 
(US Black men), Caribbean Black men, and African 
Black men. The following steps were employed to 
reach consensus: 

1. Presentation of the median scores and ranges 
of pre-meeting data element ranking, which 
enabled Consensus Working Group members 
to assess their initial rankings relative to that of 
others. With the 9-point scale: scores of 1-3 
represented a region where Consensus 
Working Group members felt that the data 
element/measurement scale was inappropriate 
for Black men, 4-6 represented an equivocal 
region, and 7-9 represented appropriate data 
element/measurement scale. We concluded 
that there was strict agreement if all members’ 
ratings fall within one of these three regions. 

2. Group discussion of data 
elements/measurement scales, including 
discussion of supporting literature. 

3. Revision of data elements/measurement scales 
when necessary. 

4. Re-ranking by Consensus Working Group 
members followed by data analyses to assess 
agreement. 

5. Summary of re-rankings to assess degree of 
consensus. The process ended with an 
acceptable degree of consensus by Consensus 
Working Group members. The scorings were 
between 7 and 9, indicating strict agreement 
on the scoring. 

After the nominal group meeting, the final 
consortia CABE constructs and measures were 
assembled for presentation to the open scientific 
community. 



 
 
 
 
 

 
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Consensus development meeting 
The final phase of the consensus methodology 
was the consensus development meeting, which 
was held on November 11, 2016 during the Science 
of Global Prostate Cancer Disparities in Black Men 
conference. The consensus development meeting 
was open to conference participants to facilitate 
the input of the prostate cancer scientific 
community. The CABE constructs and measures 
were presented by members of the Consensus 
Working Group, followed by discussion, invited 
comments, and presentation of additional data 
from the public. Finally, there was a vote to adopt 
the CABE constructs and measures for the study of 
prostate cancer in Black men globally. 

RESULTS 

The goal of this project was to reach consensus for 
the CABE data elements and measures, which was 
achieved using the GEM platform, nominal group 
technique and face-to-face meetings for 
consensus development. The CABE measures 
focus on both behavioral and epidemiological 
measures, including demographic and risk factors 
impacting prostate cancer. The  nominal 
group members deliberated intensely on items 
included in the CABE measures and made a 
decision to be more comprehensive in its 
approach with the inclusion of items that may 
impact prostate cancer, including co-morbidities 
and  polypharmacy. It is expected that 
investigators will choose CABE items that are 
relevant for their research. 

Standardized Global Behavioral Measures for 
Prostate in Black Men 
The CaPTC-AC3 Consensus Working Group 
reached a consensus on and approved 25 
behavioral constructs for the CABE measures (see 

Table 2). Of the 25 constructs, the measures for 
the following 15 constructs were based on existing 
generic instruments in the literature Acculturation 
(Klonoff & Landrine, 2000; Zane & Mak, 2003), 
Attitude toward screening (Fishbein & Ajzen, 1975), 
Cancer Fatalism (Powe, 1995a, 1995b; Powe & 
Finnie, 2003), Cues to Action (Hochbaum, 1958; 
Rosenstock, 1974a, 1974b), Health Literacy (U.S. 
Department of Health and Human Services, Office 
of Disease Prevention and Health Promotion 
(2010), National Action Plan to Improve Health 
Literacy. Washington, n.d.), Perceived Behavioral 
Control (Ajzen, 1985), Perceived Benefits 
(Hochbaum, 1958; Rosenstock, 1974a, 1974b), 
Perceived Health Status (Hochbaum, 1958; 
Rosenstock, 1974a, 1974b)Perceived Severity 
(Hochbaum, 1958; Rosenstock, 1974a, 1974b), 
Perceived Susceptibility (Hochbaum, 1958; 
Rosenstock, 1974a, 1974b),  Subjective Norm 
(Fishbein & Ajzen, 1975), Shared Decision Making 
(Rimer, Briss, Zeller, Chan, & Woolf, 2004), 
Perceived Barriers, (Hochbaum, 1958; Rosenstock, 
1974a, 1974b), Religiosity/Spirituality (Carver, 
Scheier, & Weintraub, 1989; Thoresen, 1998), and 
Temporal Orientation (Brown & Segal, 1996; Brown 
& Segal, 1997; Holman & Silver, 1998). It is 
important to note that these measures had been 
tailored for prostate cancer research and culturally 
tailored for Black men in prior CaPTC (Cobran et 
al., 2014; Kaninjing et al., 2017; Kumar, Yu, 
Akinremi, & Odedina, 2009; Morhason-Bello et al., 
2013; Odedina et al., 2009; Odedina, Dagne, et al., 
2011; Odedina, Scrivens, et al., 2011; Ogunsanya, 
Brown, Odedina, Barner, & Adedipe, 2017) and 
AC3 studies (Blackman, et al., 2017). Three of the 
25 measures were originally developed by CaPTC 
- Prostate Cancer Information Seeking Behavior 
(Odedina, Scrivens., et al., 2011), Prostate Cancer 
Screening Behavior (Odedina, Scrivens, et al., 

https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1497&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1494&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1524&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1542&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1527&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1495&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1495&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1541&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1547&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1520&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1519&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1620&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1496&cat=1


 
 
 
 
 

 
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2011), and Screening Controversy Scale (Odedina, 
Segal, Kimberlin, Lee, 2011); two were originally 
developed by AC3 - Prostate Medical Procedures 
(Blackman, et al., 2017; Jackson et al., 2010) and 
Trust of Health Care Providers (Blackman, et al., 
2017); three were developed by both CaPTC and 
AC3 - Knowledge (Odedina, Scrivens, et al., 2011), 
Medical Care Access (Blackman, et al., 2017) and 
Prostate Cancer Health (Odedina, Dagne, et al., 

2011); and two were new measures developed by 
the Consensus Working Group Behavioral SIG 
(Diversity of Residence and Patient-Provider 
Concordance). The two new measures were 
proposed by CaPTC and AC3 investigators based 
on two ongoing qualitative prostate cancer 
studies, which found two unique themes of racial 
concordance and socio-demographically diverse 
residence from interview transcripts. 

Table 2. CaPTC-AC3-MADCaP Standardized Global Behavioral Measures for Prostate in Black Men. 
Constructs Description of Measures Source 

Acculturation Cross-cultural psychology concept that “reflects the 
extent to which individuals (from a non-dominant 
culture) learn the values, behaviors, lifestyles, and 
language of the host (dominant) culture. 

Adapted from Acculturation 
Construct by Zane and Mark (Zane 
& Mak, 2003) and further refined by 
the CWG. 

Attitude Toward 
Screening 

Positive or negative evaluations about prostate 
cancer screening. 

Adapted from the Theory of 
Reasoned Action model (Fishbein & 
Ajzen, 1975) and further refined by 
the CWG. 

Cancer Fatalism Individual’s belief that death is bound to happen 
when diagnosed with cancer, is a major barrier to 
cancer detection and control 

Adapted from the Cancer Fatalism 
construct by(Powe & Finnie, 2003) 
and further refined by the CWG. 

Cues to Action Strategies to inform about and activate prostate 
cancer screening action. 

Adapted from the (Hochbaum; 
United States. Public Health Service. 
Division of Special Health, 1958; 
Rosenstock, 1974a) and further 
refined by the CWG. 

Diversity of Residence Participants’ perception of how diverse their 
residence is based on socio-demographic factors. 

Developed by CaPTC (Odedina, 
Dagne, et al., 2011; Odedina, 
Scrivens, et al., 2011) and AC3 CWG 
for Behavioral Measures. 

Health Literacy The degree to which individuals have the capacity 
to obtain, process, and understand basic health 
information and services needed to make 
appropriate health decisions. 

Adapted from the National Action 
Plan to Improve Health (U.S. 
Department of Health and Human 
Services, Office of Disease 
Prevention and Health Promotion. 
(2010). National Action Plan to 
Improve Health Literacy. 
Washington, n.d.)  

Knowledge Participants’ understanding of prostate cancer 
disease, prevention and detection. 

Adapted from CaPTC and AC3 
measures (Odedina et al., 2014)  

Medical Care Access Access to medical care and medical care services 
received 

Adapted from CaPTC and AC3 
measures (Blackman et al., 2017) 

https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1497&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1494&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1494&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1524&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1524&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1542&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1498&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1527&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1540&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1545&cat=1


 
 
 
 
 

 
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Patient-Provider 
Concordance 

Participants’ perception of their similarity to their 
provider based on race, ethnicity, gender, and age. 

Developed by CaPTC and AC3 CWG 
for Behavioral Measures. 

Perceived Barriers Belief about the potential negative aspects of a 
particular health action  

Adapted from Health Belief Model 
construct (Hochbaum, 1958; 
Rosenstock, 1974a) and further 
refined by the CWG. 

Perceived Behavioral 
Control 

Confidence of participants’ ability to screen for 
prostate cancer.  

Adapted from Theory of Planned 
Behavior (Ajzen, 1985) and further 
refined by the CWG 

Perceived Benefits Belief about the potential positive aspects of 
prostate cancer screening. 

Adapted from Health Belief Model 
construct (Hochbaum, 1958; 
Rosenstock, 1974b) and further 
refined by the CWG. 

Perceived Health 
Status 

Perception of overall health in terms of physical, 
emotional, psychological and social well being. 
Physical well-being is defined as the absence of 
disease or infirmity. Emotional well-being includes 
perceived life satisfaction, happiness, cheerfulness, 
peacefulness. Psychological well-being includes self-
acceptance, personal growth including openness to 
new experiences, optimism, hopefulness, purpose in 
life, control of one’s environment, spirituality, self-
direction, and positive relationships. Social well-
being includes social acceptance, beliefs in the 
potential of people and society as a whole, personal 
self-worth and usefulness to society, sense of 
community. 

Adapted from Physical, Emotional, 
Psychological and Social well-being 
(CDC, 2013; Keyes, 1998; Ryff, 1989; 
Ryff & Keyes, 1995). 

Perceived Severity Belief about the seriousness of prostate cancer, or 
leaving it untreated and its consequences. 

Adapted from Health Belief Model 
construct (Hochbaum, 1958; 
Rosenstock, 1974b) and further 
refined by the CWG. 

Perceived 
Susceptibility 

Belief about getting prostate cancer. Adapted from Health Belief Model 
construct (Hochbaum, 1958; 
Rosenstock, 1974b) and further 
refined by the CWG. 

Prostate Cancer 
Health 

Perceived physical signs and symptoms of prostate 
cancer. 

Adapted from CaPTC (Odedina et 
al., 2014) and AC3 measures 
(Blackman et al., 2017) 

Prostate Cancer 
Information Seeking 
Behavior 

Proactive information seeking about prostate 
cancer. 

Adapted from CaPTC measure 
(Odedina et al., 2014) 

Prostate Cancer 
Screening 

Participants self-report on prostate cancer screening 
activities within the last five years, including the 
Prostate Specific Antigen (PSA) and Digital Rectal 
Examination (DRE) diagnostic tests. 

Adapted from CaPTC measure 
(Odedina et al., 2014) 

https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1546&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1546&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1496&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1495&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1495&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1541&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1547&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1547&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1520&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1519&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1519&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1492&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1492&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1537&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1537&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1537&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1539&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1539&cat=1


 
 
 
 
 

 
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Prostate Cancer 
Subjective Norm 

Perceived social pressure arising from one's 
perception  

Adapted from Theory of Reasoned 
Action (Ajzen, 1991; Fishbein & Ajzen, 
1975) and further refined by the 
CWG 

Prostate Medical 
Procedures 

Participant’s recollection of diagnostic and 
treatment procedures that he has done in the past. 

Adapted from AC3 measure 
(Blackman et al., 2017) 

Religiosity/Spirituality Defined as organized system of beliefs, practices, 
rituals, and symbols (1). 

Adapted from CaPTC measure 
(Odedina et al., 2014) 

Screening 
Controversy Scale 

Knowledge of controversies about prostate cancer 
prevention, screening, and treatment. 

Adapted from CaPTC measure 
(Odedina, Segal, Kimberlin, & Lee, 
2011).  

Shared Decision 
Making (Screening) 

Shared decision making involves the patient, 
provider and family being informed with the best 
available evidence about options, benefits, harms, 
preferences and values (Rimer et. al., 2004) 

Adapted from Shared Decision 
Making measure (Rimer, Briss, Zeller, 
Chan, & Woolf, 2004) measure.  

Temporal Orientation An individual’s perception of time as being in the 
past, present or future (1, 2). 

Adapted from CaPTC measure (F. 
Odedina et al., 2014) 

Trust of Health Care 
Providers 

Participants' expression of valuing their providers 
recommendations relative to their care, including 
screening and treatment decision-making. 

Adapted from AC3 measure 
(Blackman et al., 2017) 

 

The CaPTC-AC3 Behavioral measures are ideal for 
studies focused on identifying behavioral factors 
impacting prostate cancer across the continuum of 
care; intervention studies to improve prostate 
cancer prevention, screening, detection, treatment 
and survivorship in Black men; migration and 
immigrant health studies; and comparative studies 
of prostate cancer among ethnically-diverse Black 
men. Behavioral measures are very important in 
identifying modifiable variables, which can be 
targeted to effectively reduce health disparities in 
minority and underserved populations. According 
to the Institute of Medicine, the potential sources 
of disparities in health care occur at individual 
(personal or provider), institutional or health 
systems levels (Nelson, 2003). The modification of 
individual behaviors of Black men with respect to 
prostate cancer risk reduction, informed decision 
making for prostate cancer screening, and 

adherence to prostate cancer treatment and 
survivorship strategies remains a key weapon to 
eliminate prostate cancer health disparity in this 
population. The CaPTC-AC3 behavioral measures 
are thus important tools in identifying behavioral 
factors impacting prostate cancer prevention, 
screening, detection, treatment and survivorship in 
Black men. In addition, these measures will provide 
a means of testing the fidelity of intervention 
programs targeting Black men’s behavior. 
Uniquely, these measures will provide an 
opportunity to compare behavioral factors among 
ethnically-diverse Black men globally. The CaPTC-
AC3 instrument is provided in the Appendix. 

Standardized Global Epidemiological Measures for 
Prostate in Black Men 
The CaPTC-AC3 Consensus Working Group 
reached a consensus on and approved 24 
epidemiological data elements for the CABE 

https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1620&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1620&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1493&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1493&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1543&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1526&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1526&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1491&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1491&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1523&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1544&cat=1
https://www.gem-beta.org/public/ConstructDetail.aspx?cid=1544&cat=1


 
 
 
 
 

 
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measures (Table 3). For each construct, the 
measures were either adapted or new measures. 
Adapted measures were from existing instruments 
of Behavioral Risk Factors Surveillance System 
(BRFSS), National Health and Nutrition Examination 
Survey (NHANES), the Southern Community 
Cohort Study (SCCS), and AC3 and/or CaPTC 
studies. Baldness was adapted from the Norwood 
Hamilton Scale (Norwood, 1975). These measures 
were either generic measures that did not need to 
be culturally tailored (e.g. demographics, country 
of birth, smoking cessation, environmental tobacco 
exposure and anthropometrics) or were already 
culturally tailored for Black men in Africa, US and 
Caribbean and had been included in prior AC3 
and CaPTC studies (e.g. languages and fluency, 
sun habits, personal history of cancer, 
environmental exposures and social environment). 

New measures were created from existing 
instruments of BRFSS and SCCS and were further 
refined and culturally tailored in order to ensure 
that the data capture was specific and responsive 
to the cultural and lifestyle heterogeneity between 
Black men born in Africa, the Caribbean and US. 
The reason for choosing the BRFSS and SCCS for 
adaptation over other study instruments was 
because (a) the BRFSS and NHANES instruments 
are already national and standardized instruments 
established by the Centers for Disease Control and 
Prevention  (CDC 2012a, CDC 2012b) and (b) the 
instrument from the SCCS (Signorello et al., 2005) 
is also standardized, was developed for the 
recruitment of adults from southeastern US, and 
among existing US cohorts the SCCS has the 
largest representation of Blacks. 

 

Table 3: CaPTC-AC3-MADCaP Standardized Global Epidemiological Measures for Prostate in Black Men. 
Constructs Description of Measures Source 

Demographics Participants’ age, family status and religion.  Adapted from AC3 measure 
(Blackman et al., 2017) 

Race/ethnicity Self-defined race as well as self, maternal and paternal 
ethnicity defined as country of origin and citizenship or 
immigrant status (for US participants), Hispanic/Latino. 
Country-specific measures for ethnic groups in, Ghana, 
Kenya, Liberia, Nigeria, South Africa, Senegal and 
Trinidad and Tobago are also included.  

Adapted from BRFSS (CDC 
2012a) and SCCS (Signorello et 
al., 2005) measures and was 
further refined by the CWG. 

Socioeconomic status 
(SES) 

Subjective social status, community ladders (Adler, Adler, 
Epel, Castellazzo, & Ickovics, 2000) (Adler et al., 2000) as 
well as educational attainment, income, employment 
status and occupation, home ownership and household 
information including number and relationships with 
persons living in the household 

Adapted from BRFSS (CDC 
2012a) and SCCS (Signorello et 
al., 2005) measures and was 
further refined by the CWG. 

Residency Participant’s current country and duration of residence, 
it defines whether the participant lived in a rural 
community, as well as historical residence. 
Documentation of geospatial coordinates based on 
participants address are also recommended. 

Adapted from BRFSS (CDC 
2012a) and SCCS (Signorello et 
al., 2005) measures and was 
further refined by the CWG. 

Country of birth Birth country and the number of years lived in that 
country for participants as well as for mother, father, 
maternal and paternal grandmother/grandfather. 

Adapted from AC3 measure 
(Blackman et al., 2017) 



 
 
 
 
 

 
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Languages and 
fluency 

Participant’s native language and comfort level speaking 
their ethnic dialect compared to other languages; as well 
as measures of fluency and amount of time speaking the 
country’s official language at home, school, work, prayer 
and with friends for participants living in countries where 
the official language is their second language. 

Adapted from AC3 (Blackman et 
al., 2017) and CaPTC (Odedina 
et al., 2014) measures. 
 

Nutrition Dietary measures as well as a culturally tailored food 
frequency questionnaire These include participants’ 
dietary intake, food portions described as general plate 
portions of meat, starches and vegetables as well as a) 
current intake (past 30 days) frequency and b) average 
annual intake frequency of: heterocyclic amines based 
on food preparation methods, dietary fats, meat organs, 
grains, starchy foods and tubers, lycopene rich fruits, 
beans, glucosinolate-rich cruciferous vegetables, 
antioxidant-rich fruits and vegetables, sources of refined 
sugar such as sweets and sweeteners, non-alcoholic 
beverages. 

Adapted from BRFSS measure 
(CDC, 2012a) and was further 
refined by the CWG. 

Physical activity Duration, frequency and intensity for the past year and 
frequency of strengthening exercises in the past month 
only. 

Adapted from BRFSS measure 
(CDC, 2012a) and was further 
refined by the CWG. 

Sun habits Participants’ exposure and duration in the sun during 
the months of summer, on weekdays and weekends as 
well as sun protection habits on sunny days. Skin 
pigmentation based on skin tone on the inside part of 
their upper arm (Ho Chien-Ju, 2015) and latitude 
obtained from participants’ residence location are also 
included. 

Adapted from AC3 
(Blackman et al., 2017) and 
CaPTC (Odedina, 2011) 
measures. 

Smoking habits Participants’ smoking status and history of tobacco use 
including smoking initiation age, type of tobacco used 
and frequency of use a measure of Marijuana use 

Adapted from BRFSS and 
NHANES (CDC 2012a, 2012b) 
measures and was further 
refined by the CWG. 

Smoking cessation Length of time since last cigarette was smoked Adapted from BRFSS measure 
(CDC, 2012a) 

Environmental 
tobacco exposure 

Participants’ exposure to second hand cigarette smoke 
at home, workplace, indoor public place or vehicle and 
includes documentation of in-home or vehicle cigarette 
smoking policy 

Adapted from BRFSS measure  
(CDC, 2012a) 

Alcohol use Participants’ history of alcohol use and includes age of 
first drink, duration of alcohol use and number of drinks 
on average as well as for specific alcohol products such 
as beer, wine, liquor and common alcoholic drinks 
consumed in Caribbean and African settings. 

Adapted from BRFSS (CDC 
2012a) and SCCS (Signorello et 
al., 2005) measures and was 
further refined by the CWG. 

Health care access Type of health care coverage and method of payment 
for health care. 

Adapted from SCCS measure 
(Signorello et al., 2005) and was 
further refined by the CWG. 

Personal History of 
Cancer 

Participants’ history of any cancer and of recurrence (for 
men with a history of prostate cancer). 

Adapted from AC3 measure 
(Blackman et al., 2017) 

Family History of Participants’ family history of cancer, with responses Adapted from SCCS measure 



 
 
 
 
 

 
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Cancer indicating if sons, daughters, wife, birth parents, full/half 
siblings, uncles, cousins, maternal and paternal 
grandparents have been diagnosed with cancer. The 
specific type of cancer, smoking status and diagnosis 
before age 50 is also documented. 

(Signorello et al., 2005) and was 
further refined by the CWG. 

Medication use Participants’ duration of use of anti-inflammatory and 
cholesterol-reducing medications in the past year as well 
as current use and duration of use of urinary retention 
medicines and other medications. 

Adapted from SCCS measure 
(Signorello et al., 2005) and was 
further refined by the CWG. 

Vitamin and 
Supplement Use 

Participants’ past year duration of use of vitamins and 
supplements including commonly used supplements 
and herbs to promote prostate health 

Adapted from SCCS measure 
(Signorello et al., 2005) and was 
further refined by the CWG. 

Baldness Norwood-Hamilton Scale of Male Pattern Baldness at 
ages 30 and 45 years old 

Adapted from Norwood 
measure (Norwood, 1975) 

Anthropometrics Participants’ self-reported weight loss or gain in the past 
five years, previous heaviest weight, as well as 
measurements of current weight, waist and hip/buttocks 
reported in inches in triplicate with notations taken with 
or without clothing and thickness of clothing Current 
and previous body shape is measured with a rating scale 
from Stunkard visual figures for five decades of life from 
20 years old to 50 years old (Cheung et al., 2011; 
Stunkard, Sorensen, & Schlusinger F, 1983)  

Adapted from AC3 measure 
(Blackman et al., 2017).  

Personal History of 
Chronic Conditions 
and Risk Factors 

Participants’ history of prostatic diseases and other 
chronic conditions and age at diagnosis 

Adapted from SCCS measure 
(Signorello et al., 2005) and was 
further refined by the CWG. 

Family History of 
Chronic Conditions 
and Risk Factors 

Participants’ family history of prostatic diseases and age 
at diagnosis for father and full/half-brother as well as 
family history of other chronic conditions and age at 
diagnosis for birth father, birth mother, full/half-sister 
and full/half-brother. 

Adapted from SCCS measure 
(Signorello et al., 2005) and was 
further refined by the CWG..  

Environmental 
exposures 

Participants’ history and age worked as an 
agricultural/groundsman, pesticide worker or exposure 
to chemical fertilizers or pesticides used on the farm 
these measures were 

Adapted from AC3 measure 
(Blackman et al., 2017). 

Social environment Participants’ perception of personal social environment 
such as neighborhood interactions, physical 
environment and personal safety.  

Adapted from AC3 measure 
(Blackman et al., 2017). 

 

CaPTC-AC3 Epidemiological measures will support 
research questions that require comparative 
analysis between US-born, Africa-born and 
Caribbean-born men whether within the US or 
between geographic populations in the Caribbean 
and Africa. Furthermore, the CaPTC-AC3 
Epidemiological measures can also be easily 

adapted and implemented in research studies that 
also involve Black women since these constructs 
are not gender-specific. The CaPTC-AC3 
instrument is provided in the Appendix. 

DISCUSSION 



 
 
 
 
 

 
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The CABE measures are currently being used as 
standard data collection tools in multiple countries 
globally. The CaPTC consortium adopted the 
measures in March 2017 for the West Africa 
Prostate Cancer Familial Cohort Study, which will 
recruit 2,000 West African men in United States, 
Nigeria, Cameroon and England. Supported by the 
NCI P20 award (P20CA192992), the Geographic 
Management of Cancer Health Disparities (GMaP) 
Program award and the Carnegie African Diaspora 
Fellowship program, this CaPTC study has 
recruited over 1,000 participants administering the 
CABE measures in English language and Pidgin 
English in the United States, Nigeria, and 
Cameroon. On average, it takes about 1 hour to 
complete all the measures. In addition to the 
behavioral, epidemiological and clinical data, the 
study includes biological data collection in form of 
saliva and formalin-fixed paraffin-embedded 
prostate tissue. CaPTC is currently developing a 
methodology to integrate and harmonize the 
CABE data with existing CaPTC database of over 
5,000 participants. 

AC3 adopted the measures for use in an existing 
US-based multi-ethnic cohort of African descent 
(Cancer Prevention Project of Philadelphia – 
CAP3). This cohort is funded by the American 
Cancer Society (RSG-14-033-01-CPPB) and Fox 
Chase Cancer Center and includes 946 (female 
and male) participants. Integration of the CABE 
measures for the current (N=326) and prospective 
male participants in this cohort is in progress. 
Genomic data are currently being generated from 
DNA collected from saliva and biomarker data are 
being generated from urine samples. Expansion of 
this multi-ethnic cohort to two US sites and two 
Caribbean sites is in development. One Caribbean 
site in Jamaica  will begin in October 2019 and we 
will recruit 8,000 participants affected and 

unaffected by cancer (3,200 males and 4,800 
females). The second Caribbean site in the 
Bahamas was  established in September 2017 and 
the first round of enrollment includes 380 Black 
men unaffected and affected with prostate cancer. 
Approximately 600 males are anticipated to be 
enrolled annually. Further expansion of this and 
other Caribbean sites are planned through 
supported activities of an NCI P20 award in 
planning for a Regional Center for Cancer and 
Cardiometabolic Research in the Caribbean 
(1P20CA210294-01). In addition to the CABE data, 
saliva and paraffin-embedded samples (from 
prostate cancer cases) will be collected for 
genomic and epigenetic studies. 

Data sharing is essential for expedited translation 
of research results into knowledge that can be 
used to accelerate the pace of research. The NIH 
has implemented policies that require investigators 
to share their data and resources, including the 
2003 NIH Data Sharing policy and the 2015 NIH 
Genomic Data Sharing Policy 
(https://grants.nih.gov/grants/policy/data_sharing/
). In addition, NCI is moving towards methods that 
will enhance data sharing and encourage the 
broad sharing of data (beyond current scientific 
collaborations). The GEM database is one such 
example, the publicly available CABE measures are 
easily downloaded and access in different formats 
to enhance data sharing (Moser et al., 2011). 

The CABE measures provide global access to 
culturally appropriate data collection tools for the 
study of prostate cancer in Black men. Specifically, 
the use of standardized and common measures 
will facilitate data pooling and harmonization 
across several populations. The long-term impact 
of the CABE measures is catalyzed progress for 
prostate cancer disparity research through 

https://grants.nih.gov/grants/policy/data_sharing/
https://grants.nih.gov/grants/policy/data_sharing/


 
 
 
 
 

 
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RESEARCH 

harmonized data. For example, the prostate 
cancer research community will be able to create 
Big Data from all the studies using the CABE 
measures. Access to Big Data provides the ability 
to do analyses that cannot be done with single 
studies, including exploring the influence of 
genetic and lifestyle factors on prostate cancer, 
fostering the identification of genetic changes for 
cancer growth, accurate prediction of cancer 
health outcomes, guiding treatment decision 
making, and predicting behavioral risk factors for 
cancer. Ultimately, the CABE measures will 
contribute to the goal of understanding and 
ultimately reducing the disproportionate effects of 
prostate cancer in Black men. 

Acknowledgements 
This work is supported in part by the National 
Institutes of Health/National Cancer Institute 
(P20CA192992, P30CA006927, P20CA210294, 
R13CA189451, R13CA210494, and R13CA192672-03) 
and the 2017 Carnegie African Diaspora Fellowship 
Program. The authors are grateful to the members 
of the African Caribbean Cancer Consortium and the 
Prostate Cancer Transatlantic Consortium who 
provided support and feedback during this project. 

Conflict of interest 
The authors declare that no competing or conflict of 
interests exist. The funders had no role in study 
design, writing of the manuscript, or decision to 
publish. 

Authors’ contributions 
Odedina conceptualized the project, participated in 
the review and development of Behavioral measures, 
actively participated in the writing of the manuscript;   
Ragin participated in the review and development of 
epidemiological measures and actively participated 
in the writing of the manuscript; Martin participated 

in the review and development of epidemiological 
measures and actively participated in the writing of 
the manuscript; Moser coordinated the GEM 
platform consensus process and actively participated 
in the writing of the manuscript; Oliver participated in 
the review and development of Behavioral measures 
and actively participated in the writing of the 
manuscript; McDonald participated in the review and 
development of epidemiological measures and 
actively participated in the writing of the manuscript; 
Rise assisted with the GEM platform consensus 
process and participated in the writing of the 
manuscript; Nguyen participated in the review and 
organization of the Behavioral measures and 
participated in the review of the manuscript; 
Chinegwundoh actively participated in the writing of 
the manuscript; Morrison-Blidgen actively 
participated in the writing of the manuscript; 
Kaninjing actively participated in the writing and 
editing of the manuscript.; Jalloh participated in the 
review and development of epidemiological 
measures, and participated in the editing of the 
manuscript; Reams participated in the review of 
measures on GEM platform and review of the 
manuscript. 

 

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