Design and Development of a Prostate Cancer Survivor Self-Reported Registry

December 2018 Vol 9, No 12


Original Research
Antoine Richards, MPH
Clark Atlanta University
Center for Cancer Research & Therapeutic Development
Atlanta, GA
Kimberly E Davis, PhD
Clark Atlanta University
Center for Cancer Research & Therapeutic Development
Atlanta, GA
Reginald O Gooden, MPH, ORISE Fellow
Centers for Disease Control and Prevention
Atlanta, GA

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Background: Prostate cancer (PCa) incidence and survival rates continue to rise among African American men. An estimated 161,360 new cases were expected to occur in 2017. With increased survival rates, individuals are living longer, thus increasing the risk of experiencing adverse physical and psychosocial long-term effects of the cancer and its treatment. This study explores how minorities affected by PCa can become more informed and active in the decision-making process in the context of a support community.

Methods: An online registry was created by researchers from the Center for Cancer Research & Therapeutic Development. The registry captures participants’ demographics and clinical disease information throughout the PCa continuum. The registry was made available online at, required registration and informed consent, and included mechanisms to maintain confidentiality. A voluntary response sample was utilized. Conceptual framework from Andersen’s version of the Behavioral Model of Health Services Utilization and Wilson and Cleary’s Model of Health-Related Quality of Life were used as the basis for the survey. Key consultants were engaged as community relations advisory board members. Comprehensive recruitment strategies were employed yielding a response rate of over 1000 registered survivors, surpassing the goal of 500.

Conclusion: The PCa registry targets a specific group of survivors, exploring subsets that may be underserved or high-risk for distress. The registry is not linked to treatment location, thus respondents are more compelled to share their experience. A comprehensive database system provides ongoing information on health and issues facing ethnic PCa survivors and identifies gaps to determine areas of future research while developing a consensus on implications survivors may face.

The number of people affected by cancer, both individuals diagnosed with the disease and their families and friends, is staggering. Although all individuals are at risk of a cancer diagnosis in their lifetime, there has been a remarkable reduction in deaths associated with cancer. This is largely due to the implementation of prevention and early detection efforts for certain cancers, increased screening of the general population and those at highest risk for developing these diseases, and advances in research and clinical care. The number of adult cancer survivors in the United States has grown to approximately 15.5 million in 2017 and will increase to 19 million by 2024.1

One understudied cancer for which both the incidence and survival rates are increasing is prostate cancer (PCa), specifically among African American men. When survival rates are broken down by race/ethnicity with respect to the risk of developing and dying of PCa, it is clear that significant differences exist across racial/ethnic minorities and medically underserved populations. For all cancer sites combined, African Americans are more likely to develop and die of cancer than persons of any other racial or ethnic group, and specifically PCa.2 An estimated 29,530 cases of PCa were expected to occur among African American men in 2016, accounting for 31% of all cancers diagnosed in this population.1 It is estimated that 1 in 5 African American men will be diagnosed with PCa in their lifetime.3 The overall 5-year relative survival rate for PCa among African American men is 97%, compared with nearly 99% among Caucasians.1 The 5-year survival rate drops to 28% for African American men when the cancer is diagnosed at a distant stage.1 While individuals diagnosed with cancer are living longer, they are at risk of experiencing late and long-term adverse physical and psychosocial effects of their cancer and its treatment.4

Because the 5-year relative survival rate for PCa is roughly 100%, the experience of diagnosis and treatment of PCa can have long-term effects on men physically, psychologically, and emotionally.5 PCa survivors must cope with the stresses induced by physically demanding (and also often life-threatening) treatments for the illness and the permanent health impairment and disability, fatigue, and pain that can result, even when there are no longer any signs of the disease.6 Studies have shown that PCa and its treatment affect both disease-specific health-related quality of life (HRQOL) (ie, urinary, sexual, and bowel function) as well as general HRQOL (ie, energy/vitality and performance in physical and social roles).7

Physically, urinary issues, sexual function (including erectile dysfunction), and bowel function impact psychosocial effects of PCa. Psychologically, sexual function impacts perceptions of masculinity along with the stress of coping, which has emotional impacts. Emotionally, effects of PCa and its treatment can influence stress both on men and their partners coping with diagnosis, treatment, and the aforementioned sexual function. Sexual function also has a dynamic impact on the emotional stability of relationships, as erectile dysfunction may decrease sexual performance. In fact, treatment-related decreases in HRQOL of PCa, particularly those associated with sexual function and urinary symptoms, distressed partner satisfaction.8 Furthermore, the psychosocial effects of PCa also impact mental and emotional stability concerned with risk of recurrence and adapting to new lifestyles among PCa survivors. Given this information, population-based assessments of cancer survivors that systematically examine their long-term quality of life are essential to understanding the individual and societal burdens of PCa.

Previous studies of PCa survivors rarely included a representative sample, one that was truly generalized and that mirrored the population of society as a whole. Increasing the capacity of surveillance systems to capture information on health topics of interest can lead to a better understanding of PCa and the African American men affected by this disease. Effective survivorship research is dependent on the integration and interaction of many information sources that serve as a strong and comprehensive infrastructure for this project. A comprehensive database system provides information on the ongoing health and other issues facing ethnic PCa survivors. It also provides the opportunity to follow survivors for many years after the cancer diagnosis to better understand the long-term effects of having this disease, and specifically, assessing data on PCa survivors to identify gaps to determine areas of future research and developing consensus on a set of data indicators used in the collection and analysis of PCa survivorship data, including data needed for long-term follow-up on survivors.

This need was addressed through the design and development of a self-reported PCa registry that identifies challenges faced by PCa survivors, including perceptions of access to resources, cognitive health appraisal, impact of health-related behaviors, HRQOL, functional status, and overall health perceptions. The goal of the Prostate Cancer Registry is to use findings to assist in providing support and empowering survivors as they transition from active treatment to posttreatment. This paper describes the process of design and development of the Prostate Cancer Registry to achieve that goal.


About the Registry

The researchers at Clark Atlanta University (CAU) Center for Cancer Research & Therapeutic Development (CCRTD) created a unique PCa registry for African American men that captures survivors’ demographic and clinical disease information and data regarding their epidemiological, social, emotional, and clinical experiences throughout the PCa continuum. The PCa registry is accessible online at, ensuring that it is easily accessible to the majority of PCa survivors. The registry format was selected for its ability to capture and maintain survivor data and as a way to interact and generate new data. Specifically, the registry is designed to address research questions by following a patient population over a period of time. Survivor experiences are monitored at monthly intervals, potentially bringing to light critical trends or changes in PCa survivorship needs. The PCa registry serves as an information system designed for the collection, management, and analysis of data on African American survivors.

Design and Development

CCRTD researchers designed an online registry at The researchers worked with CAU’s Institutional Review Board to develop consent forms that outline the purpose of the project and procedures, risks, and benefits of participation. To ensure that this unique registry is scientifically and clinically relevant, a team of key consultants were engaged to participate as community relations advisory board members. These individuals represented a wide range of expertise, including medical oncology, psycho-oncology research, and community-based research. Based on their individual areas of expertise, they assisted in guiding the research and determined the structure of the registry questions.

The researchers engaged in a strategic process to focus registry questions on priority survivorship areas. The conceptual framework for the Prostate Cancer Registry was adapted from Andersen’s version of the Behavioral Model of Health Services Utilization9 and Wilson and Cleary’s Conceptual Model of Health-Related Quality of Life.10 These models were used as the basis for the questionnaire sets developed by the researchers. Building on these models, the questionnaire captures predisposing characteristics, enabling resources, mediating factors, and HRQOL experiences. Enabling resources included access to means and perceptions of support associated with treatment decisions and subsequent treatment. Mediating factors included questions on cognitive health appraisal and health-related behaviors. HRQOL questions included questions on symptomology, functional status (including sexual function), and overall health perceptions.

Respondents were encouraged to complete the registry throughout their PCa continuum to monitor trends and changes in their epidemiological, emotional, and health status. Registry questions were designed to delve into each of the priority cancer survivorship areas and validated measures to analyze subsets of the PCa survivor population.


A comprehensive recruitment strategy was developed to reach the target population and encourage the participation of PCa survivors throughout their process. Key outreach and recruitment elements of the campaign included: (a) a traditional media campaign, including print and online outlets coordinated with a comprehensive social media strategy via Facebook and Twitter; (b) communication via CCRTD’s expansive network, including the online community and affiliates; and (c) efforts led by patient advocacy organizations, specifically the Georgia Prostate Cancer Coalition, Blue Flowers Org, and the comprehensive Men’s Health Initiative. Eligible participants included males above the age of 18 years.

Participation was entirely voluntary and required completion of the consent form upon registration. Once respondent consent was obtained, they created a unique username and password. To ensure the safety of the data collected, the registry utilizes technology with CAU, which includes a firewall and routine security checks of the computer resources. Following registration and account setup, respondents have access to the member site, where they can complete questions about their PCa experience.


The Prostate Cancer Registry provides several benefits. In addition to providing opportunities to investigate key questions, this registry targets specific groups of survivors based on their self-reported demographic, or medical profile, to explore subsets that may be underserved or high-risk for distress. Future analysis of data can be used to examine a variety of factors, including frequency distribution of responses to determine high priorities and perceptions of men dealing with PCa. In addition, correlational analysis can be done to identify the effect of certain variables on perceptions of overall health. Through both, needs can be identified that are deemed most important by PCa survivors themselves.

The goal of the Prostate Cancer Registry is to use findings to assist in providing support and empowering survivors as they transition from active treatment to posttreatment. Through the registry, we will be able to better monitor trends and changes in the epidemiological, emotional, and health status of PCa survivors. A growing registry has immense potential to increase public awareness and address the often misunderstood and underserved needs of minority PCa survivors. The Prostate Cancer Registry allows researchers to report annually on trends and changes in the emotional health status of PCa survivors. Such data collection and tracking can serve as the basis for increasing public awareness and in developing effective programs to address the often misunderstood and underserved needs of African American PCa survivors. The registry will fill a critical gap by providing a mechanism to directly learn from the issues PCa survivors face. Data from the registry will be analyzed continuously and utilized to identify the needs of PCa survivors. Data will effectively help develop and implement PCa research and facilitate community outreach mechanisms that meet the needs of survivors, including community outreach programs, evidence-based strategies for survivorship care plans, PCa support groups, and research initiatives for future PCa research. To date, the response from the PCa survivor community has been significant. As of November 2017, over 1000 survivors have registered, exceeding the researchers’ goal of 500 participants.


There are limitations to conducting this type of research. While the researchers are able to recruit and follow survivors over time, there are cohort factors, such as changes in healthcare delivery and availability of treatment options, that may affect the data. In addition, the data collected are self-reported. As a result, they are subject to recall bias and are difficult to verify without access to medical records. As the data are collected completely online, they are limited to those with Internet access. This factor may skew the results by attracting a younger and more educated demographic.


The Minority Men’s Health Initiative is supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health, award number U54MD008621-01.


  1. American Cancer Society. Cancer Facts & Figures 2017. Atlanta, GA: American Cancer Society. 2017.
  2. Miller K, Siegel RL, Lin CS, et al. Cancer treatment and survivorship statistics, 2016. CA Cancer J Clin. 2016;66:271-289.
  3. Shenoy D, Packianathan S, Chen AM, et al. Do African-American men need separate prostate cancer screening guidelines? BMC Urol. 2016;16:19.
  4. De Sousa A, Sonavane S, Mehta J. Psychological aspects of prostate cancer: a clinical review. Prostate Cancer Prost Dis. 2012;15:120-127.
  5. Galbreith ME, Arechiga A, Ramirez J, Pedro LW. Self reports of health-related quality of life, treatment symptoms, and marital satisfaction 2.5-5.5 years after treatment. Oncol Nurs Forum. 2005;32:E30-E41.
  6. Nam RK, Cheung P, Herschorn S, et al. Incidence of complications other than urinary incontinence or erectile dysfunction after radical prostatectomy or radiotherapy for prostate cancer: a population-based cohort study. Lancet Oncol. 2014;15:223-231.
  7. Namiki S, Arai Y. Health-related quality of life in men with localized prostate cancer. Int J Urol. 2010;17:125-138.
  8. Sanda MG, Dunn RL, Michalski J, et al. Quality of life and satisfaction with outcome among prostate cancer survivors. N Engl J Med. 2008; 358:1250-1261.
  9. Andersen R. Revising the behavioral model and access to medical care: does it matter? J Health Soc Behav. 1995;36:1-10.
  10. Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA. 1995;273:59-65.
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