Abstract
Purpose
This formative research study describes the development and preliminary evaluation of a theory-guided, online multimedia psycho-educational program (PROGRESS) designed to facilitate adaptive coping among prostate cancer patients transitioning from treatment into long-term survivorship.
Methods
Guided by the Cognitive-Social Health Information Processing Model (C-SHIP) and using health communications best practices, we conducted a two-phase, qualitative formative research study with early stage prostate cancer patients (n = 29) to inform the Web program development. Phase 1 included individual (n = 5) and group (n = 12) interviews to help determine intervention content and interface. Phase 2 employed iterative user/usability testing (n = 12) to finalize the intervention. Interview data were independently coded and collectively analyzed to achieve consensus.
Results
Survivors expressed interest in action-oriented content on (1) managing treatment side effects, (2) handling body image and comorbidities related to overweight/obesity, (3) coping with emotional and communication issues, (4) tips to reduce disruptions of daily living activities, and (5) health skills training tools. Patients also desired the use of realistic and diverse survivor images.
Conclusions
Incorporation of an established theoretical framework, application of multimedia intervention development best practices, and an evidence-based approach to content and format resulted in a psycho-educational tool that comprehensively addresses survivors’ needs in a tailored fashion.
Implications for Cancer Survivors
The results suggest that an interactive Web-based multimedia program is useful for survivors if it covers the key topics of symptom control, emotional well-being, and coping skills training; this tool has the potential to be disseminated and implemented as an adjunct to routine clinical care.
References
American Cancer Society. Cancer Facts & Figures 2014. Atlanta, Georgia: American Cancer Society; 2014.
Jemal A et al. Cancer statistics, 2009. CA Cancer J Clin. 2009;59(4):225–49.
Siegel R et al. Cancer treatment and survivorship statistics, 2012. CA Cancer J Clin. 2012;62(4):220–41.
American Cancer Society. Cancer Treatment and Survivorship Facts & Figures 2014–2015. Atlanta, Georgia: American Cancer Society; 2014.
Anandadas CN et al. Early prostate cancer—which treatment do men prefer and why? BJU Int. 2011;107(11):1762–8.
Singer EA et al. Active surveillance for prostate cancer: past, present and future. Curr Opin Oncol. 2012;24(3):243–50.
Skolarus TA et al. American cancer society prostate cancer survivorship care guidelines. CA Cancer J Clin. 2014;64(4):225–49.
Bacon CG et al. The association of treatment-related symptoms with quality-of-life outcomes for localized prostate carcinoma patients. Cancer. 2002;94(3):862–71.
Lintz K et al. Prostate cancer patients’ support and psychological care needs: survey from a non-surgical oncology clinic. Psychooncology. 2003;12(8):769–83.
Wootten AC et al. Psychological adjustment of survivors of localised prostate cancer: investigating the role of dyadic adjustment, cognitive appraisal and coping style. Psychooncology. 2007;16(11):994–1002.
Bennett G, Badger TA. Depression in men with prostate cancer. Oncol Nurs Forum. 2005;32(3):545–56.
Chipperfield K et al. Factors associated with adherence to physical activity guidelines in patients with prostate cancer. Psychooncology. 2013;22(11):2478–86.
Badger TA et al. Who benefits from a psychosocial counselling versus educational intervention to improve psychological quality of life in prostate cancer survivors? Psychol Health. 2013;28(3):336–54.
Cegala DJ, Post DM. The impact of patients‘ participation on physicians’ patient-centered communication. Patient Educ Couns. 2009;77(2):202–8.
Grunfeld E, Earle CC. The interface between primary and oncology specialty care: treatment through survivorship. J Natl Cancer Inst Monogr. 2010;2010(40):25–30.
Grant M et al. Educating health care professionals to provide institutional changes in cancer survivorship care. J Cancer Educ. 2012;27(2):226–32.
Bradley CJ et al. Employment and cancer: findings from a longitudinal study of breast and prostate cancer survivors. Cancer Invest. 2007;25(1):47–54.
Grunfeld EA et al. “The only way I know how to live is to work”: a qualitative study of work following treatment for prostate cancer. Health Psychol. 2013;32(1):75–82.
Boberg EW et al. Assessing the unmet information, support and care delivery needs of men with prostate cancer. Patient Educ Couns. 2003;49(3):233–42.
Smith DP et al. Age, health, and education determine supportive care needs of men younger than 70 years with prostate cancer. J Clin Oncol. 2007;25(18):2560–6.
Stanton AL. What happens now? psychosocial care for cancer survivors after medical treatment completion. J Clin Oncol. 2012;30(11):1215–20.
Miller SM, Diefenbach MA. The Cognitive-Social Health Information-Processing (C-SHIP model: A theoretical Framework for Research in Behavioral Oncology. In: Krantz DS, Baum A, editors. Technology and Methods in Behavioral Medicine. Mahwah, NJ: Lawrence Erlbaum Associates, Inc; 1998. p. 219–44.
Miller SM et al. Tailoring psychosocial interventions to the individual’s health information-processing style: The influence of monitoring versus blunting in cancer risk and disease. In: Baum A, Andersen B, editors. Psychosocial interventions for cancer. Washington, DC: American Psychological Association; 2001. p. 343–62.
Project, P.R.I. Internet User Demographics, As of January 2014, 87 % of American adults use the internet. Internet and Tech 2014 [cited 2014 April]; Available from: http://www.pewinternet.org/data-trend/internet-use/latest-stats
Sanchez MA et al. A systematic review of eHealth cancer prevention and control interventions: new technology, same methods and designs? Transl Behav Med. 2013;3(4):392–401.
Carpenter, K.M., et al., An online stress management workbook for breast cancer. J Behav Med, 2012
Pauwels E et al. Design and process evaluation of an informative website tailored to breast cancer survivors ‘and intimate partners’ post-treatment care needs. BMC Res Notes. 2012;5:548.
Wen KY et al. The development and preliminary testing of a multimedia patient-provider survivorship communication module for breast cancer survivors. Patient Educ Couns. 2012;88(2):344–9.
Marcus AC et al. Cancer patient and survivor research from the cancer information service research consortium: a preview of three large randomized trials and initial lessons learned. J Health Commun. 2013;18(5):543–62.
Schover LR et al. A randomized trial of internet-based versus traditional sexual counseling for couples after localized prostate cancer treatment. Cancer. 2012;118(2):500–9.
Van Bogaert D et al. The development of an eHealth tool suite for prostate cancer patients and their partners. J Support Oncol. 2012;10(5):202–8.
McPherson, D.A. and D.A. Herxheimer. healthtalk.org. [cited 2014; Available from: http://www.healthtalk.org/.
Wootten A et al. Development, feasibility and usability of an online psychological intervention for men with prostate cancwer: My road ahead. Internet Interv. 2014;1.
Burns SM, Mahalik JR. Understanding how masculine gender scripts may contribute to men’s adjustment following treatment for prostate cancer. Am J Mens Health. 2007;1(4):250–61.
Wall D, Kristjanson L. Men, culture and hegemonic masculinity: understanding the experience of prostate cancer. Nurs Inq. 2005;12(2):87–97.
Mankowski ES, Maton KI. A community psychology of men and masculinity: historical and conceptual review. Am J Community Psychol. 2010;45(1–2):73–86.
Mroz LW, Oliffe JL, Davison BJ. Masculinities and patient perspectives of communication about active surveillance for prostate cancer. Health Psychol. 2013;32(1):83–90.
Rudd, R.E. Guidelines for Creating Materials-Resources for Developing and Assessing Materials. 2014; Available from: www.hsph.harvard.edu/healthliteracy.edu.
Osborne H. Health literacy from a to Z, second edition: practical ways to communicate your health message. Burlington: Jones&Bartlett Learning; 2011.
Doak, C., L. Doak, and J. Root, Teaching patients with low literacy skills. 1985, Philadelphia: JB Lippincott.
Venderbos, L.D., et al., A longitudinal study on the impact of active surveillance for prostate cancer on anxiety and distress levels. Psychooncology, 2014
Hudson SV et al. Cancer survivors and the patient-centered medical home. Transl Behav Med. 2012;2(3):322–31.
Hudson SV et al. Adult cancer survivors discuss follow-up in primary care: ‘not what i want, but maybe what i need’. Ann Fam Med. 2012;10(5):418–27.
Diefenbach MA et al. Acceptability and preliminary feasibility of an internet/CD-ROM-based education and decision program for early-stage prostate cancer patients: randomized pilot study. J Med Internet Res. 2012;14(1):e6.
Fleisher L et al. Application of best practice approaches for designing decision support tools: the preparatory education about clinical trials (PRE-ACT) study. Patient Educ Couns. 2014;96(1):63–71.
Neilsen J. Usability engineering. Cambridge: Elsevier; 1994.
Jaspers MW et al. The think aloud method: a guide to user interface design. Int J Med Inform. 2004;73(11–12):781–95.
Crabtree, B.F. and W.L. Miller, Doing qualitative research. 2nd ed. 1999, Thousand Oaks, Calif.: Sage Publications. xvii, 406 p.
Miles, M.B., A.M. Huberman, and J. Saldaña, Qualitative data analysis : a methods sourcebook. Third edition. ed. 2014, Thousand Oaks, Califorinia: SAGE Publications, Inc. xxiii, 381 pages.
Connell R. Gender, health and theory: conceptualizing the issue, in local and world perspective. Soc Sci Med. 2012;74(11):1675–83.
Connell RW. Masculinities. Berkeley: University of California Press; 1995.
Connell RW, Messerschmidt JW. Hegemonic masculinity: rethinking the concept gender. Society. 2005;19(6):829–59.
Buzaglo JS et al. Evaluation of the efficacy and usability of NCI’s facing forward booklet in the cancer community setting. J Cancer Surviv. 2013;7(1):63–73.
Coleman MT, Newton KS. Supporting self-management in patients with chronic illness. Am Fam Physician. 2005;72(8):1503–10.
Weiss, D.S. and C.R. Marmar, The Impact of Event Scale-Revised, in Assessing psychological trauma and PTSD, J.P. Wilson and T.M. Keane, Editors. 1996, Guilford: New York.
Perez M et al. A novel intervention using interactive technology and personal narratives to reduce cancer disparities: African American breast cancer survivor stories. J Cancer Surviv. 2014;8(1):21–30.
Acknowledgments
This research was supported by the National Cancer Institute grants, R01 CA158019 to Dr. Miller and the Fox Chase Cancer Center Behavioral Research Core Facility P30-CA06927. Dr. Hudson was supported by the following awards from the National Cancer Institute: K01 CA 131500, R03 CA154063, and R01 CA176838. Dr. Hui was supported by the National Cancer Institute grant R03 CA159903. Dr. Diefenbach was supported by the following awards from the National Cancer Institute: 1R01 CA158019-01, 1R21 CA155963, 1R21 CA164807; and W81XWH-11-1-0604, from the Department of Defense. We would like to acknowledge the contribution of James Williams and the patients who participated in this study or appeared in the patient videos for the Web program development. We thank the clinicians who appeared in the videos, Drs. Natan Bar-Chama, Neil Grafstein, and Christian Nelson. Other research team members, including Margaret Atchison, Javier Muniz, Craig Walt, Megan Grau, Eric Shaw, Sean O’Sullivan, Martin Cohen, Jennifer Burns, and Matt Hall, also made contributions to this study. We also thank Mary Anne Ryan for her technical and administrative assistance. Last but not least, we thank the team members from NotSoldSeparately.com, Kevin Durr, Joe Ifi, Mayr Budny, Dan Alvare, and Anthony Wojtkowiak, for their help in the technical process of the website development and implementation.
Conflict of interest
The authors declare that they have no conflict of interest.
Author information
Authors and Affiliations
Corresponding author
Electronic supplementary material
Below is the link to the electronic supplementary material.
ESM 1
(PDF 1050 kb)
Rights and permissions
About this article
Cite this article
Miller, S.M., Hudson, S.V., Hui, Sk.A. et al. Development and preliminary testing of PROGRESS: a Web-based education program for prostate cancer survivors transitioning from active treatment. J Cancer Surviv 9, 541–553 (2015). https://doi.org/10.1007/s11764-015-0431-5
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11764-015-0431-5