Abstract
Context
Advances in screening and treatment of prostate cancer have dramatically increased the number of survivors in the US population. Yet the effect of screening is controversial, and in some instances may not be beneficial. Previous studies have typically only reported outcomes of treatment and symptoms within a short time frame following treatment. The persistence of such symptoms over time necessitates an improvement of survivor care so that the medical and support needs of these patients are met.
Objective
This study aims to perform a patient-centered survey of prostate cancer survivors in the Michigan Cancer Registry to identify treatment side effect rates, evaluate survivors' access to preventive care services post-prostate cancer treatment, and assess the informational needs of these survivors regarding their prostate cancer.
Design, setting, and patients
Linking case files of the Michigan Cancer Registry with records from the National Death Index, we identified prostate cancer patients diagnosed between 1985 and 2004 and alive on 31 December 2005. Participants were selected using a stratified cross-sectional sampling strategy to ensure adequate inclusion of survivors based upon race and ethnicity, urban versus rural location, and number of years since diagnosis of prostate cancer. A total of 2,499 surveys were completed and returned.
Main outcome measures
(1) Physical symptoms—assessing bowel, sexual, urinary, and vitality symptoms by treatment modality. (2) Access to care—identifying whether diagnostic tests for prostate cancer (prostate-specific antigen (PSA) and digital rectal examination) were performed. Determining whether the survivors had knowledge of the “watchful waiting” paradigm for prostate cancer surveillance. (3) Informational needs—assessing whether the informational needs of patients were addressed by providers. Evaluating the significant predictors associated with seeking information about prostate cancer from any other source. Identifying what factors influenced a person to actively seek out information and what factors guide which primary information source a survivor would use.
Results
Median duration between prostate cancer diagnosis and survey response was 9 years. Of the study population, 80 % was diagnosed at an early stage. Survivors had reported significant problems in the 4 weeks prior to survey. Of the survivors, 88.1 % reported having a PSA test since diagnosis of prostate cancer, with 93 % of them having it done at least once per year. Of the survivors, 82.6 % reported that a healthcare provider gave them information on prostate cancer. Of this 82.6 %, 86.4 % had this information provided by a urologist, 45.4 % by a primary care physician, and 29.2 % by an oncologist. The primary source of information for these survivors was “healthcare provider” (59.2 %).
Conclusion
Persistent symptoms subsequent to prostate cancer treatment suggest a gap in symptom management. Future research should support long-term studies of active surveillance versus active treatment outcomes to understand the feasibility of minimizing the burden of long-term physical symptoms arising from prostate cancer treatment. Clinicians must assess post-treatment distress long after treatment has ended to identify when supportive care is needed. More informational resources should be allocated to prostate cancer survivors to ensure that they are well-educated about their prognosis.
Implications for Cancer Survivors
This study is needed to ensure that the post-treatment symptoms of prostate cancer survivors are properly addressed and managed by healthcare providers over the long term.
Similar content being viewed by others
Notes
In response to the needs of prostate cancer survivors and providers alike, MDCH, in collaboration with MPHI and the Michigan Cancer Consortium Prostate Cancer Action Committee, developed and disseminated a series of 12 fact sheets with guidelines for use by primary care providers who are managing prostate cancer survivors’ ongoing symptoms. The same collaborative partners developed a companion set of 14 symptom management fact sheets in English, Spanish, and Arabic versions for survivors and their families [31].
References
Surveillance, Epidemiology, and End Results (SEER) Program. limited-use data (1973–2006), National Cancer Institute, Division of Cancer Control and Population Sciences, Surveillance Research Program, Cancer Statistics Branch; released April 2009, based on the November 2007 submission. www.seer.cancer.gov. Accessed 23 Nov 2009.
American Cancer Society. Prostate cancer overview: what is prostate cancer? www.cancer.org/Cancer/ProstateCancer/OverviewGuide/prostate-cancer-overview-key-statistics. Accessed 11 July 2011.
Mariotto AB, Yabroff KR, Shao Y, Feuer EJ, Brown ML. Projections of the cost of cancer care in the United States: 2010–2020. J Natl Cancer Inst. 2011;103(2):117–28.
Surveillance, Epidemiology, and End Results (SEER) Program. Research data (1973–2008), Division of Cancer Control and Population Sciences, Surveillance Research Program, Cancer Statistics Branch; released April 2011, based on the November 2010 submission. www.seer.cancer.gov. Accessed 7 June 2011.
Deimling GT, Bowman KF, Sterns S, Wagner LJ, Kahana B. Cancer-related health worries and psychological distress among older adult, long-term cancer survivors. Psychooncology. 2006;15(4):306–20.
Aziz NM, Rowland JH. Trends and advances in cancer survivorship research: challenge and opportunity. Semin Radiat Oncol. 2003;13(3):248–66.
Potosky AL, Davis WW, Hoffman RM, Stanford JL, Stephenson RA, Penson DF, et al. Five-year outcomes after prostatectomy or radiotherapy for prostate cancer: the prostate cancer outcomes study. J Natl Cancer Inst. 2004;96(18):1358–67.
Shrader-Bogen CL, Kjellberg JL, McPherson CP, Murray CL. Quality of life and treatment outcomes: prostate carcinoma patients' perspectives after prostatectomy or radiation therapy. Cancer. 1997;79(10):1977–86.
Litwin MS. Health-related quality of life after treatment for localized prostate cancer. Cancer. 1995;75 Suppl 7:2000–3.
Litwin MS, Hays RD, Fink A, et al. Quality-of-life outcomes in men treated for localized prostate cancer. JAMA. 1995;273(2):129–35.
Miller DC, Sanda MG, Dunn RL, Montie JE, Pimentel H, Sandler HM, et al. Long-term outcomes among localized prostate cancer survivors: health-related quality-of-life changes after radical prostatectomy, external radiation, and brachytherapy. J Clin Oncol. 2005;23(12):2772–80.
Dobs A, Darkes MJM. Incidence and management of gynecomastia in men treated for prostate cancer. J Urol. 2005;174(5):1737–42.
Potosky AL, Knopf K, Clegg LX, Albertsen PC, Stanford JL, Hamilton AS, et al. Quality-of-life outcomes after primary androgen deprivation therapy: results from the prostate cancer outcomes study. J Clin Oncol. 2001;19(17):3750–7.
Berruti A, Dogliotti L, Terrone C, Cerutti S, Isaia G, Tarabuzzi R, et al. Changes in bone mineral density, lean body mass and fat content as measured by dual energy X-ray absorptiometry in patients with prostate cancer without apparent bone metastases given androgen deprivation therapy. J Urol. 2002;167(6):2361–7.
Boxer RS, Kenny AM, Dowsett R, Taxel P. The effect of 6 months of androgen deprivation therapy on muscle and fat mass in older men with localized prostate cancer. The Aging Male. 2005;8(3–4):207–12.
Smith JC, Bennett S, Evans LM, Kynaston HG, Parmar M, Mason MD, et al. The effects of induced hypogonadism on arterial stiffness, body composition, and metabolic parameters in males with prostate cancer. J Clin Endocrinol Metab. 2001;86(9):4261–7.
Daniell HW, Dunn SR, Ferguson DW, Lomas G, Niazi Z, Stratte PT. Progressive osteoporosis during androgen deprivation therapy or prostate cancer. J Urol. 2000;163(1):181–6.
Higano C, Shields A, Wood N, Brown J, Tangen C. Bone mineral density in patients with prostate cancer without bone metastases treated with intermittent androgen suppression. Urology. 2004;64(6):1182–6.
Shahinian VB, Kuo Y-F, Freeman JL, Goodwin JS. Risk of fracture after androgen deprivation for prostate cancer. N Engl J Med. 2005;352(2):154–64.
Braga-Basaria M, Dobs AS, Muller DC, Carducci MA, John M, Egan J, et al. Metabolic syndrome in men with prostate cancer undergoing long-term androgen-deprivation therapy. J Clin Oncol. 2006;24(24):3979–83.
Muller M, Grobbee DE, den Tonkelaar I, Lamberts SW, van der Schouw YT. Endogenous sex hormones and metabolic syndrome in aging men. J Clin Endocrinol Metab. 2005;90(5):2618–23.
Dockey F, Bulpitt CJ, Agarwal S, Donaldson M, Rajkumar C. Testosterone suppression in men with prostate cancer leads to an increase in arterial stiffness and hyperinsulinaemia. Clin Sci (Lond). 2003;104(2):195–201.
Keating NL, O'Malley AJ, Smith MR. Diabetes and cardiovascular disease during androgen deprivation therapy for prostate cancer. J Clin Oncol. 2006;24(27):4448–56.
Leaksonen DE, Niskanen L, Punnonen K, Nyyssönen K, Tuomainen TP, Valkonen VP, et al. Testosterone and sex hormone-binding globulin predict the metabolic syndrome and diabetes in middle-aged men. Diabetes Care. 2004;27(5):1036–41.
Satariano WA, Ragland KE, Van Den Eeden SK. Cause of death in men diagnosed with prostate carcinoma. Cancer. 1998;83(6):1180–8.
Smith MR, McGovern FJ, Fallon MA, Schoenfeld D, Kantoff PW, Finkelstein JS. Low bone mineral density in hormone-naïve men with prostate carcinoma. Cancer. 2001;91(12):2238–45.
Poon SA, Silberstein JL, Savage C, Maschino AC, Lowrance WT, Sandhu JS. Surgical practice patterns for male urinary incontinence: analysis of case logs from certifying American urologists. J Urol. 2012;188(1):205–10.
Faucheron JL, Chodez M, Boillot B. Neuromodulation for fecal and urinary incontinence: functional results in 57 consecutive patients from a single institution. Dis Colon Rectum. 2012;55(12):1278–83.
Chung E, Brock G. Sexual rehabilitation and cancer survivorship: a state of art review of current literature and management strategies in male sexual dysfunction among prostate cancer survivors. J Sex Med. 2013;10 Suppl 1:102–11.
Skolarus TA, Zhang Y, Miller DC, Wei JT, Hollenbeck BK. The economic burden of prostate cancer survivorship. J Urol. 2010;184(2):532–8.
Wei JT, Dunn RL, Litwin MS, Sandler HM, Sanda MG. Development and validation of the expanded prostate cancer index composite (EPIC) for comprehensive assessment of health-related quality of life in men with prostate cancer. Urology. 2000;56(6):899–905.
Grunkemeier MN, Vollmer RT. Predicting prostate biopsy results: the importance of PSA, age, and race. Am J Clin Pathol. 2006;126(1):110–2.
American Cancer Society. Survivorship: during and after treatment: survivorship care plans. www.cancer.org/Treatment/SurvivorshipDuringandAfterTreatment/SurvivorshipCarePlans/index. Accessed 7 Jun 2011.
Bober SL, Recklitis CJ, Campbell EG, Park ER, Kutner JS, Najita JS, et al. Caring for cancer survivors: a survey of primary care physicians. Cancer. 2009;115 Suppl 18:4409–18.
Skolarus TA, Holmes-Rovner M, Northouse LL, Fagerlin A, Garlinghouse C, Demers RY, et al. Primary care perspectives on prostate cancer survivorship: implications for improving quality of care. Urol Oncol. 2013;31(6):727–32.
Wei JT, Dunn RL, Sandler HM, McLaughlin PW, Montie JE, Litwin MS, et al. Comprehensive comparison of health-related quality of life after contemporary therapies for localized prostate cancer. J Clin Oncol. 2002;20(2):557–66.
Smith T, Stein KD, Mehta CC, Kaw C, Kepner JL, Buskirk T, et al. The rationale, design, and implementation of the American Cancer Society's studies of cancer survivors. Cancer. 2007;109(1):1–12.
Michigan Cancer Consortium. MCC prostate cancer resources. www.michigancancer.org/CancerPlan/ProstateCancer_Resources.cfm. Accessed 7 Jun 2011.
Acknowledgments
The Michigan Prostate Cancer Survivor Study was conducted by MPHI in collaboration with MDCH and funding from the Centers for Disease Control and Prevention (CDC) Cooperative Agreement 5U58DP000812. The contents of this publication do not necessarily represent the official views of the CDC.
The authors would like to express their sincere appreciation to the Michigan prostate cancer survivors who participated in our survey and to the Prostate Cancer Coalition of Michigan for its review of the survey instrument and assistance in pilot testing it. Lastly, we would like to express our deepest gratitude to the former chair of the Prostate Cancer Coalition of Michigan, the late Brigadier General Michael J. Rice, Retired, who facilitated the focus testing for this project and who lost his own life to advanced stage prostate cancer in July 2007 at age 64 after fighting a courageous battle against the disease for more than a decade.
Author information
Authors and Affiliations
Corresponding author
Additional information
Informed consent was obtained from the study subjects.
Rights and permissions
About this article
Cite this article
Darwish-Yassine, M., Berenji, M., Wing, D. et al. Evaluating long-term patient-centered outcomes following prostate cancer treatment: findings from the Michigan Prostate Cancer Survivor study. J Cancer Surviv 8, 121–130 (2014). https://doi.org/10.1007/s11764-013-0312-8
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11764-013-0312-8