Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Review Article
  • Published:

Implementation of patient-reported outcome measures into health care for men with localized prostate cancer

Nature Reviews Urology volume 19, pages 263–279 (2022)Cite this article

Subjects

Abstract

Measuring treatment-related quality of life (QOL) has become an increasingly requisite component of delivering high-quality care for patients with prostate cancer. Patient-reported outcome measures (PROMs) have, therefore, become an important tool for understanding the adverse effects of radical prostate cancer treatment and have been widely integrated into clinical practice. By providing real-time symptom monitoring and improved clinical feedback to patients and providers, PRO assessment has led to meaningful gains in prostate cancer care delivery and quality improvement worldwide. By providing an avenue for benchmarking, collaboration and population health monitoring, PROMs have delivered substantial improvements beyond providing individual symptom feedback. However, multilevel barriers exist that need to be addressed before the routine implementation of PROMs is achieved. Improvements in collection, interpretation, standardization and reporting will be crucial for the continued implementation of PROM instruments in prostate cancer pathways.

Key points

  • Physician-reported assessments of patient symptoms during prostate cancer management are highly variable and substantially underestimate the impact of treatment compared with patient-reported outcome measures (PROMs).

  • PROMs have become an important tool for understanding the adverse effects of radical prostate cancer treatment and are increasingly becoming incorporated into routine clinical practice.

  • Multiple PROM instruments exist for symptom assessment related to urinary, sexual, bowel and hormonal function in the clinical setting in localized and advanced prostate cancer.

  • In addition to providing feedback about individual patient recovery after prostate cancer treatment, PROMs also broadly highlight target areas for quality improvement initiatives to improve care delivery.

  • Challenges that impede the implementation of PROMs into routine clinical practice include barriers in collection, interpretation, standardization and reporting.

  • Further assimilation of PROMs will require application of digital platforms for collection and interpretation, integration into electronic health record systems, improved psychometric tools for analysis and an increased awareness of the functionality of PROM assessment along the prostate cancer treatment continuum.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on SpringerLink
  • Instant access to the full article PDF.

USD 39.95

Prices may be subject to local taxes which are calculated during checkout

Fig. 1: The chronological emergence of PROMs in prostate cancer.
Fig. 2: Domains measured by PRO instruments in prostate cancer.
Fig. 3: Patient-reported outcome dashboards.

Similar content being viewed by others

References

  1. Sung, H. et al. Global cancer statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 Cancers in 185 Countries. Ca. Cancer J. Clin. 71, 209–249 (2021).

    Article  PubMed  Google Scholar 

  2. Fowler, J. F. Jr. et al. Effect of radical prostatectomy for prostate cancer on patient quality of life: results from a Medicare survey. Urology 45, 1005–1013 (1995).

    Article  Google Scholar 

  3. Litwin, M. S., Lubeck, D. P., Henning, J. M. & Carroll, P. R. Differences in urologist and patient assessments of health related quality of life in men with prostate cancer: results of the CAPSURE database. J. Urol. 159, 1988–1992 (1998).

    Article  CAS  PubMed  Google Scholar 

  4. Sonn, G. A., Sadetsky, N., Presti, J. C. & Litwin, M. S. Differing perceptions of quality of life in patients with prostate cancer and their doctors. J. Urol. 182, 2296–2302 (2009).

    Article  PubMed  Google Scholar 

  5. Silva, F. C. da Quality of life in prostatic carcinoma. Eur. Urol. 24, 113–117 (1993).

    Article  PubMed  Google Scholar 

  6. Fromme, E. K., Eilers, K. M., Mori, M., Hsieh, Y.-C. & Beer, T. M. How accurate is clinician reporting of chemotherapy adverse effects? A comparison with patient-reported symptoms from the quality-of-life questionnaire C30. J. Clin. Oncol. 22, 3485–3490 (2004).

    Article  PubMed  Google Scholar 

  7. Wilson, K. A., Dowling, A. J., Abdolell, M. & Tannock, I. F. Perception of quality of life by patients, partners and treating physicians. Qual. Life Res. 9, 1041–1052 (2000).

    Article  CAS  PubMed  Google Scholar 

  8. Lee, P. Y., Alexander, K. P., Hammill, B. G., Pasquali, S. K. & Peterson, E. D. Representation of elderly persons and women in published randomized trials of acute coronary syndromes. JAMA 286, 708–713 (2001).

    Article  CAS  PubMed  Google Scholar 

  9. J., E. W. Jr & Sherbourne, C. D. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med. Care 30, 473–483 (1998).

    Google Scholar 

  10. Sveistrup, J. et al. Prospective assessment of the quality of life before, during and after image guided intensity modulated radiotherapy for prostate cancer. Radiat. Oncol. 11, 117 (2016).

    Article  PubMed  PubMed Central  Google Scholar 

  11. Cheung, A. S. et al. Quality of life decrements in men with prostate cancer undergoing androgen deprivation therapy. Clin. Endocrinol. 86, 388–394 (2017).

    Article  CAS  Google Scholar 

  12. Litwin, M. S. et al. The UCLA Prostate Cancer Index: development, reliability, and validity of a health-related quality of life measure. Med. Care 36, 1002–1012 (1998).

    Article  CAS  PubMed  Google Scholar 

  13. Wei, J. T., Dunn, R. L., Litwin, M. S., Sandler, H. M. & Sanda, M. G. 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 56, 899–905 (2000).

    Article  CAS  PubMed  Google Scholar 

  14. Flynn, K. E., Lin, L. & Cyranowski, J. M. Development of the NIH PROMIS® Sexual Function and Satisfaction measures in patients with cancer. J. Sex. Med. 1, 43–52 (2013).

    Article  CAS  Google Scholar 

  15. Cella, D. et al. The patient-reported outcomes measurement information system (PROMIS): progress of an NIH Roadmap cooperative group during its first two years. Med. Care 45, S3–S11 (2007).

    Article  PubMed  PubMed Central  Google Scholar 

  16. Hedestig, O., Sandman, P. O., Tomic, R. & Widmark, A. Living after radical prostatectomy for localized prostate cancer: a qualitative analysis of patient narratives. Acta Oncol. 44, 679–686 (2005).

    Article  PubMed  Google Scholar 

  17. Bokhour, B. G., Clark, J. A., Inui, T. S., Silliman, R. A. & Talcott, J. A. Sexuality after treatment for early prostate cancer: exploring the meanings of ‘erectile dysfunction’. J. Gen. Intern. Med. 16, 649–655 (2001).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  18. Wittmann, D., Carolan, M. & Given, B. Exploring the role of the partner in couples’ sexual recovery after surgery for prostate cancer. Support. Care Cancer 22, 2509–2515 (2014).

    Article  PubMed  Google Scholar 

  19. Bernat, J. K., Wittman, D. A. & Hawley, S. T. Symptom burden and information needs in prostate cancer survivors: a case for tailored long-term survivorship care. BJU Int. 118, 372–378 (2016).

    Article  PubMed  Google Scholar 

  20. Sanders, S., Pedro, L. W., Bantum, E. O. & Galbraith, M. E. Couples surviving prostate cancer: long-term intimacy needs and concerns following treatment. Clin. J. Oncol. Nurs. 10, 503–508 (2006).

    Article  PubMed  Google Scholar 

  21. Wittmann, D. & Koontz, B. F. Evidence supporting couple-based interventions for the recovery of sexual intimacy after prostate cancer treatment. Curr. Sex. Health Rep. 9, 32–41 (2017).

    Article  Google Scholar 

  22. Whiting, P. F., Moore, T. H. & Jameson, C. M. Symptomatic and quality-of-life outcomes after treatment for clinically localised prostate cancer: a systematic review. BJU Int. 118, 193–204 (2016).

    Article  PubMed  Google Scholar 

  23. Mottet, N. et. al. EAU-ESTRO-ESUR-SIOG Guidelines on Prostate Cancer (UroWeb, 2018).

  24. Sanda Martin, G. et al. Clinically localized prostate cancer: AUA/ASTRO/SUO Guideline. Part I: risk stratification, shared decision making, and care options. J. Urol. 199, 683–690 (2018).

    Article  CAS  PubMed  Google Scholar 

  25. Hoffman, K. E. et al. Patient-reported outcomes through 5 years for active surveillance, surgery, brachytherapy, or external beam radiation with or without androgen deprivation therapy for localized prostate cancer. JAMA 323, 149–163 (2020).

    Article  PubMed  PubMed Central  Google Scholar 

  26. Chen, R. C., Chang, P. & Vetter, R. J. Recommended patient-reported core set of symptoms to measure in prostate cancer treatment trials. J. Natl Cancer Inst. 106, dju132 (2014).

    Article  PubMed  PubMed Central  Google Scholar 

  27. Szymanski, K. M., Wei, J. T., Dunn, R. L. & Sanda, M. G. Development and validation of an abbreviated version of the expanded prostate cancer index composite instrument for measuring health-related quality of life among prostate cancer survivors. Urology 76, 1245–1250 (2010).

    Article  PubMed  Google Scholar 

  28. Sanda, M. G. et al. Quality of Life and Satisfaction with Outcome among Prostate-Cancer Survivors. N. Engl. J. Med. 358, 1250–1261 (2008).

    Article  CAS  PubMed  Google Scholar 

  29. Rnic, K., Linden, W., Tudor, I., Pullmer, R. & Vodermaier, A. Measuring symptoms in localized prostate cancer: a systematic review of assessment instruments. Prostate Cancer Prostatic Dis. 16, 111–122 (2013).

    Article  CAS  PubMed  Google Scholar 

  30. Schmidt, S. et al. Assessing quality of life in patients with prostate cancer: a systematic and standardized comparison of available instruments. Qual. Life Res. 23, 2169–2181 (2014).

    Article  PubMed  PubMed Central  Google Scholar 

  31. Valderas, J. M. et al. Development of EMPRO: a tool for the standardized assessment of patient-reported outcome measures. Value Health 11, 700–708 (2008).

    Article  PubMed  Google Scholar 

  32. Chang, P., Szymanski, K. M. & Dunn, R. L. Expanded prostate cancer index composite for clinical practice: development and validation of a practical health related quality of life instrument for use in the routine clinical care of patients with prostate cancer. J. Urol. 186, 865–872 (2011).

    Article  PubMed  Google Scholar 

  33. Axcrona, K. et al. Psychometric properties of the expanded prostate cancer index composite - 26 instrument in a cohort of radical prostatectomy patients: theoretical and practical examinations. BMC Urol. 17, 111 (2017).

    Article  PubMed  PubMed Central  Google Scholar 

  34. Clark, J. A. & Talcott, J. A. Symptom indexes to assess outcomes of treatment for early prostate cancer. Med. Care 39, 1118–1130 (2001).

    Article  CAS  PubMed  Google Scholar 

  35. Andel, G. V. et al. An international field study of the EORTC QLQ-PR25: A questionnaire for assessing the health-related quality of life of patients with prostate cancer. Eur. J. Cancer 44, 2418–2424 (2008).

    Article  PubMed  Google Scholar 

  36. Esper, P. et al. Measuring quality of life in men with prostate cancer using the Functional Assessment of Cancer Therapy-prostate instrument. Urology 50, 920–928 (1997).

    Article  CAS  PubMed  Google Scholar 

  37. Yount, S., Cella, D., Banik, D., Ashraf, T. & Shevrin, D. Brief assessment of priority symptoms in hormone refractory prostate cancer: The FACT Advanced Prostate Symptom Index (FAPSI). Health Qual. Life Outcomes 1, 69 (2003).

    Article  PubMed  PubMed Central  Google Scholar 

  38. Ritvo, P. et al. Reliability and validity of the PORPUS, a combined psychometric and utility-based quality-of-life instrument for prostate cancer. J. Clin. Epidemiol. 58, 466–474 (2005).

    Article  PubMed  Google Scholar 

  39. Aaronson, N. K., Ahmedzai, S. & Bergman, B. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J. Natl Cancer Inst. 85, 365–376 (1993).

    Article  CAS  PubMed  Google Scholar 

  40. Cella, D. F. et al. The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J. Clin. Oncol. 11, 570–579 (1993).

    Article  CAS  PubMed  Google Scholar 

  41. Barry, M. J., Fowler, F. J. & O’Leary, M. P. The American Urological Association symptom index for benign prostatic hyperplasia. The Measurement Committee of the American Urological Association. J. Urol. 148, 1549–1557 (1992).

    Article  CAS  PubMed  Google Scholar 

  42. Rosen, R. C., Cappelleri, J. C., Smith, M. D., Lipsky, J. & Pena, B. M. Development and evaluation of an abridged, 5-item version of the International Index of Erectile Function (IIEF-5) as a diagnostic tool for erectile dysfunction. Int. J. Impot. Res. 11, 319–326 (1999).

    Article  CAS  PubMed  Google Scholar 

  43. Rosen, R. C. et al. The international index of erectile function (IIEF): a multidimensional scale for assessment of erectile dysfunction. Urology 49, 822–830 (1997).

    Article  CAS  PubMed  Google Scholar 

  44. Donovan, J. L., Hamdy, F. C. & Lane, J. A. Patient-reported outcomes after monitoring, surgery, or radiotherapy for prostate cancer. N. Engl. J. Med. 375, 1425–1437 (2016).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  45. Hamdy, F. C. et al. 10-year outcomes after monitoring, surgery, or radiotherapy for localized prostate cancer. N. Engl. J. Med. 375, 1415–1424 (2016).

    Article  PubMed  Google Scholar 

  46. Resnick, M. J. et al. Long-term functional outcomes after treatment for localized prostate cancer. N. Engl. J. Med. 368, 436–445 (2013).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  47. Hoffman, R. M. et al. Treatment decision regret among long-term survivors of localized prostate cancer: results from the prostate cancer outcomes study. J. Clin. Oncol. 35, 2306–2314 (2017).

    Article  PubMed  PubMed Central  Google Scholar 

  48. Stam, M.-A. V. et al. Patient-reported outcomes following treatment of localised prostate cancer and their association with regret about treatment choices. Eur. Urol. Oncol. 3, 21–31 (2020).

    Article  PubMed  Google Scholar 

  49. Venderbos, L. D. F. et al. A longitudinal study on the impact of active surveillance for prostate cancer on anxiety and distress levels. Psychooncology 24, 348–354 (2015).

    Article  PubMed  Google Scholar 

  50. Naha, U., Freedland, S. J., Abern, M. R. & Moreira, D. M. The association of cancer-specific anxiety with disease aggressiveness in men on active surveillance of prostate cancer. Prostate Cancer Prostatic Dis. 24, 335–340 (2021).

    Article  CAS  PubMed  Google Scholar 

  51. Bergh, R. C. N. V. D. et al. Anxiety and distress during active surveillance for early prostate cancer. Cancer 115, 3868–3878 (2009).

    Article  PubMed  Google Scholar 

  52. Karim, M., Melissa, A., Behfar, E. & Andrew, V. Long-term cancer specific anxiety in men undergoing active surveillance of prostate cancer: findings from a large prospective cohort. J. Urol. 200, 1250–1255 (2018).

    Article  Google Scholar 

  53. Auffenberg, G. B. et al. Evaluation of patient- and surgeon-specific variations in patient-reported urinary outcomes 3 months after radical prostatectomy from a statewide improvement collaborative. JAMA Surg. 156, e206359–e206359 (2021).

    Article  PubMed  PubMed Central  Google Scholar 

  54. Basch, E., Barbera, L., Kerrigan, C. L. & Velikova, G. Implementation of patient-reported outcomes in routine medical care. Am. Soc. Clin. Oncol. Educ. Book 38, 122–134 (2018).

    Article  PubMed  Google Scholar 

  55. Diao, K., Lobos, E. A. & Yirmibesoglu, E. Patient-reported quality of life during definitive and postprostatectomy image-guided radiation therapy for prostate cancer. Pr. Radiat. Oncol. 7, e117–e124 (2017).

    Article  Google Scholar 

  56. Giesler, R. B., Miles, B. J., Cowen, M. E. & Kattan, M. W. Assessing Quality of Life in Men with clinically localized prostate cancer: development of a new instrument for use in multiple settings. Qual. Life Res. 9, 645–665 (2000).

    Article  CAS  PubMed  Google Scholar 

  57. Vickers, A. J. et al. Validation study of a web-based assessment of functional recovery after radical prostatectomy. Health Qual. Life Outcomes 8, 82 (2010).

    Article  PubMed  PubMed Central  Google Scholar 

  58. Protopapa, E., Meulen, J., Moore, C. M. & Smith, S. C. Patient-reported outcome (PRO) questionnaires for men who have radical surgery for prostate cancer: a conceptual review of existing instruments. BJU Int. 120, 468–481 (2017).

    Article  PubMed  Google Scholar 

  59. Petrillo, J., Cano, S. J., McLeod, L. D. & Coon, C. D. Using classical test theory, item response theory, and Rasch measurement theory to evaluate patient-reported outcome measures: a comparison of worked examples. Value Health 18, 25–34 (2015).

    Article  PubMed  Google Scholar 

  60. Davison, B. J. & Degner, L. F. Empowerment of men newly diagnosed with prostate cancer. Cancer Nurs. 20, 187–196 (1997).

    Article  CAS  PubMed  Google Scholar 

  61. A., V. E. et al. Interpreting patient reported urinary and sexual function outcomes across multiple validated instruments. J. Urol. 198, 671–677 (2017).

    Article  Google Scholar 

  62. Singh, K., Tin, A. L., Dunn, R. L., Kim, T. & Vickers, A. J. Development and validation of crosswalks for patient-reported sexual and urinary outcomes between commonly used instruments. Eur. Urol. 75, 723–730 (2019).

    Article  PubMed  Google Scholar 

  63. Hartzler, A. L., Izard, J. P., Dalkin, B. L., Mikles, S. P. & Gore, J. L. Design and feasibility of integrating personalized PRO dashboards into prostate cancer care. J. Am. Med. Inform. Assoc. 23, 38–47 (2016).

    Article  PubMed  Google Scholar 

  64. Wolpin, S. & Stewart, M. A deliberate and rigorous approach to development of patient-centered technologies. Semin. Oncol. Nurs. 27, 183–191 (2011).

    Article  PubMed  PubMed Central  Google Scholar 

  65. Izard, J. et al. User-centered design of quality of life reports for clinical care of patients with prostate cancer. Surgery 155, 789–796 (2014).

    Article  PubMed  Google Scholar 

  66. Galesic, M. & Garcia-Retamero, R. Graph literacy: a cross-cultural comparison. Med. Decis. Making 31, 444–457 (2011).

    Article  PubMed  Google Scholar 

  67. Hobart, J. C., Cano, S. J., Zajicek, J. P. & Thompson, A. J. Rating scales as outcome measures for clinical trials in neurology: problems, solutions, and recommendations. Lancet Neurol. 6, 1094–1105 (2007).

    Article  PubMed  Google Scholar 

  68. Martin, N. E., Massey, L. & Stowell, C. Defining a standard set of patient-centered outcomes for men with localized prostate cancer. Eur. Urol. 67, 460–467 (2015).

    Article  PubMed  Google Scholar 

  69. Punnen, S., Cowan, J. E., Chan, J. M., Carroll, P. R. & Cooperberg, M. R. Long-term health-related quality of life after primary treatment for localized prostate cancer: results from the CaPSURE registry. Eur. Urol. 68, 600–608 (2015).

    Article  PubMed  Google Scholar 

  70. Skolarus, T. A., Ragnoni, J. A. & Garlinghouse, C. Multilingual self-management resources for prostate cancer survivors and their partners: results of a long-term academic-state health department partnership to promote survivorship care. Urology 110, 92–97 (2017).

    Article  PubMed  Google Scholar 

  71. Prebay, Z. J., Peabody, J. O., Miller, D. C. & Ghani, K. R. Video review for measuring and improving skill in urological surgery. Nat. Rev. Urol. 16, 261–267 (2019).

    Article  PubMed  Google Scholar 

  72. Fund, K. The UK Private Health Market (Persistence Market Research, 2014).

  73. NPCA. Results of the NPCA Prospective Audit in England and Wales for men diagnosed from 1 April 2018 to 31 March 2019 (NPCA, 2021).

  74. Spiegelhalter, D. J. Funnel plots for comparing institutional performance. Stat. Med. 24, 1185–1202 (2005).

    Article  PubMed  Google Scholar 

  75. Nossiter, J., Sujenthiran, A. & Cowling, T. E. Patient-reported functional outcomes after hypofractionated or conventionally fractionated radiation for prostate cancer: a National Cohort Study in England. J. Clin. Oncol. 38, 744–752 (2020).

    Article  PubMed  PubMed Central  Google Scholar 

  76. Parry, M. G., Sujenthiran, A. & Cowling, T. E. Treatment-related toxicity using prostate-only versus prostate and pelvic lymph node intensity-modulated radiation therapy: a national population-based study. J. Clin. Oncol. 37, 1828–1835 (2019).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  77. Nossiter, J., Sujenthiran, A. & Charman, S. C. Robot-assisted radical prostatectomy vs laparoscopic and open retropubic radical prostatectomy: functional outcomes 18 months after diagnosis from a national cohort study in England. Br. J. Cancer 118, 489–494 (2018).

    Article  PubMed  PubMed Central  Google Scholar 

  78. Donnelly, D. W., Gavin, A. & Downing, A. Regional variations in quality of survival among men with prostate cancer across the United Kingdom. Eur. Urol. 76, 228–237 (2019).

    Article  PubMed  Google Scholar 

  79. Corsini, N. et al. Cancer survivorship monitoring systems for the collection of patient-reported outcomes: a systematic narrative review of international approaches. J. Cancer Surviv. 11, 486–497 (2017).

    Article  CAS  PubMed  Google Scholar 

  80. Evans, S. M. et al. Development of an international prostate cancer outcomes registry. BJU Int. 117, 60–67 (2016).

    Article  PubMed  Google Scholar 

  81. Nag, N. et al. Development of indicators to assess quality of care for prostate cancer. Eur. Urol. Focus. 4, 57–63 (2018).

    Article  PubMed  Google Scholar 

  82. Ruseckaite, R. et al. Development of South Australian-Victorian prostate cancer health outcomes research dataset. BMC Res. Notes 9, 37 (2016).

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  83. CDN. PCOR_ANZ Annual Report 2016. CDN https://cdn.movember.com/uploads/images/Our%20Work/Prostate%20Cancer/PCOR-ANZ%20Annual%20Report_2016_FINAL%5B3%5D.pdf (2016).

  84. Marwick, C. Survey says patients expect little physician help on sex. JAMA 281, 2173–2174 (1999).

    Article  CAS  PubMed  Google Scholar 

  85. Hughes, A. K. & Wittmann, D. Aging sexuality: knowledge and perceptions of preparation among U.S. primary care providers. J. Sex. Marital. Ther. 41, 304–313 (2015).

    Article  PubMed  Google Scholar 

  86. Agochukwu, N. Q., Skolarus, T. A. & Wittmann, D. Telemedicine and prostate cancer survivorship: a narrative review. Mhealth 4, 45 (2018).

    Article  PubMed  PubMed Central  Google Scholar 

  87. Northouse, L. L., Mood, D. W. & Schafenacker, A. Randomized clinical trial of a family intervention for prostate cancer patients and their spouses. Cancer 110, 2809–2818 (2007).

    Article  PubMed  Google Scholar 

  88. Northouse, L., Schafenacker, A. & Barr, K. L. A tailored Web-based psychoeducational intervention for cancer patients and their family caregivers. Cancer Nurs. 37, 321–330 (2014).

    Article  PubMed  PubMed Central  Google Scholar 

  89. Skolarus, T. A., Metreger, T. & Wittmann, D. Self-management in long-term prostate cancer survivors: a randomized. Control. Trial J. Clin. Oncol. 37, 1326–1335 (2019).

    Article  Google Scholar 

  90. Chambers, S. K., Occhipinti, S. & Schover, L. A randomised controlled trial of a couples-based sexuality intervention for men with localised prostate cancer and their female partners. Psychooncology 24, 748–756 (2015).

    Article  PubMed  Google Scholar 

  91. Schover, L. R., Canada, A. L. & Yuan, Y. A randomized trial of internet-based versus traditional sexual counseling for couples after localized prostate cancer treatment. Cancer 118, 500–509 (2012).

    Article  PubMed  Google Scholar 

  92. Wittmann, D., Mehta, A. & Northouse, L. TrueNTH sexual recovery study protocol: a multi-institutional collaborative approach to developing and testing a web-based intervention for couples coping with the side-effects of prostate cancer treatment in a randomized controlled trial. BMC Cancer 17, 664 (2017).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  93. Wittmann, D. et al. TrueNTH Sexual Recovery Intervention for couples coping with prostate cancer: Randomized controlled trial results. Cancer https://doi.org/10.1002/cncr.34076 (2022).

  94. Walker, L. M., Wassersug, R. J. & Robinson, J. W. Psychosocial perspectives on sexual recovery after prostate cancer treatment. Nat. Rev. Urol. 12, 167–176 (2015).

    Article  PubMed  Google Scholar 

  95. Wittmann, D. et al. The psychosocial aspects of sexual recovery after prostate cancer treatment. Int. J. Impot. Res. 21, 99–106 (2009).

    Article  CAS  PubMed  Google Scholar 

  96. Sadovsky, R. et al. Cancer and sexual problems. J. Sex. Med. 7, 349–373 (2010).

    Article  PubMed  Google Scholar 

  97. Wittmann, D. et al. What couples say about their recovery of sexual intimacy after prostatectomy: toward the development of a conceptual model of couples’ sexual recovery after surgery for prostate cancer. J. Sex. Med. 12, 494–504 (2015).

    Article  PubMed  Google Scholar 

  98. Garos, S., Kluck, A. & Aronoff, D. Couples’ sexual dysfunctions: prostate cancer patients and their partners: differences in satisfaction indices and psychological variables. J. Sex. Med. 4, 1394–1403 (2007).

    Article  PubMed  Google Scholar 

  99. Badr, H. & Taylor, C. L. C. Sexual dysfunction and spousal communication in couples coping with prostate cancer. Psychooncology 18, 735–746 (2009).

    Article  PubMed  PubMed Central  Google Scholar 

  100. 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. 10, 102–111 (2013).

    Article  PubMed  Google Scholar 

  101. Lopes, M. H. & Higa, R. The role of the clinical nurse specialist in caring for patients with prostate cancer: a narrative review. Nurs. Res. Rev. 2014, 77 (2014).

    Article  Google Scholar 

  102. King, A. J. L. et al. Prostate cancer and supportive care: a systematic review and qualitative synthesis of men’s experiences and unmet needs. Eur. J. Cancer Care 24, 618–634 (2015).

    Article  CAS  Google Scholar 

  103. Tarrant, C., Sinfield, P., Agarwal, S. & Baker, R. Is seeing a specialist nurse associated with positive experiences of care? The role and value of specialist nurses in prostate cancer care. BMC Health Serv. Res. 8, 65 (2008).

    Article  PubMed  PubMed Central  Google Scholar 

  104. Parker, P. A. et al. The effects of a presurgical stress management intervention for men with prostate cancer undergoing radical prostatectomy. J. Clin. Oncol. 27, 3169–3176 (2009).

    Article  PubMed  PubMed Central  Google Scholar 

  105. Resnick, M. J. & Penson, D. F. Quality of life with advanced metastatic prostate cancer. Urol. Clin. North. Am. 39, 505–515 (2012).

    Article  PubMed  Google Scholar 

  106. EuroQol Group. EuroQol — a new facility for the measurement of health-related quality of life. Health Policy 16, 199–208 (1990).

    Article  Google Scholar 

  107. Sullivan, P. W., Mulani, P. M., Fishman, M. & Sleep, D. Quality of life findings from a multicenter, multinational, observational study of patients with metastatic hormone-refractory prostate cancer. Qual. Life Res. 16, 571 (2007).

    Article  PubMed  Google Scholar 

  108. Gotay, C. C., Kawamoto, C. T., Bottomley, A. & Efficace, F. The prognostic significance of patient-reported outcomes in cancer clinical trials. J. Clin. Oncol. 26, 1355–1363 (2008).

    Article  PubMed  Google Scholar 

  109. Vodicka, E. et al. Inclusion of patient-reported outcome measures in registered clinical trials: Evidence from ClinicalTrials.gov (2007–2013). Contemp. Clin. Trials 43, 1–9 (2015).

    Article  CAS  PubMed  Google Scholar 

  110. European Medicines Agency, Committee for Medicinal Products for Human Use. Appendix 2 to the guideline on the evaluation of anticancer medicinal products in man. The use of patient-reported outcome (PRO) measures in oncology studies (EMA/CHMP, 2016).

  111. FDA. Patient-reported outcome measures: use in medical product development to support labelling claims (FDA, 2009).

  112. Robson, M. et al. Olaparib for metastatic breast cancer in patients with a germline BRCA Mutation. N. Engl. J. Med. 377, 523–533 (2017).

    Article  CAS  PubMed  Google Scholar 

  113. Ryan, C. J. et al. Abiraterone in metastatic prostate cancer without previous chemotherapy. N. Engl. J. Med. 368, 138–148 (2013).

    Article  CAS  PubMed  Google Scholar 

  114. Scher, H. I. et al. Trial design and objectives for castration-resistant prostate cancer: updated recommendations from the prostate cancer clinical trials Working Group 3. J. Clin. Oncol. 34, 1402–1418 (2016).

    Article  PubMed  PubMed Central  Google Scholar 

  115. Fallowfield, L., Payne, H. & Jenkins, V. Patient-reported outcomes in metastatic castration-resistant prostate cancer. Nat. Rev. Clin. Oncol. 13, 643–650 (2016).

    Article  PubMed  Google Scholar 

  116. Coens, C. et al. International standards for the analysis of quality-of-life and patient-reported outcome endpoints in cancer randomised controlled trials: recommendations of the SISAQOL Consortium. Lancet Oncol. 21, e83–e96 (2020).

    Article  PubMed  Google Scholar 

  117. Morgans, A. K. et al. Development of a standardized set of patient-centered outcomes for advanced prostate cancer: an international effort for a unified approach. Eur. Urol. 68, 891–898 (2015).

    Article  PubMed  Google Scholar 

  118. Centers for Medicare and Medicaid Services. Oncology Care First Model: Informal Request for Information (Centers for Medicare and Medicaid Services, 2021).

Download references

Acknowledgements

U.S. is supported by an American Urological Association – Urology Care Foundation Research Scholar Award sponsored by the Society of Urologic Oncology and SPORE and a National Institutes of Health Loan Repayment Program award (L30 CA264387). T.A.S. is supported by National Cancer Institute R37CA222885.

Author information

Author notes

  1. These authors contributed equally: Udit Singhal, Ted A. Skolarus

Authors and Affiliations

  1. Dow Division of Health Services Research, Department of Urology, University of Michigan, Ann Arbor, MI, USA

    Udit Singhal, Ted A. Skolarus, Alan Paniagua-Cruz, Arvin K. George & Daniela A. Wittmann

  2. Department of Urology, Mayo Clinic, Rochester, MN, USA

    Udit Singhal

  3. VA HSR&D Center for Clinical Management Research, VA Ann Arbor Healthcare System, Ann Arbor, MI, USA

    Ted A. Skolarus

  4. Department of Urology, University of Washington, Seattle, WA, USA

    John L. Gore

  5. Clinical Effectiveness Unit, Royal College of Surgeons of England, London, UK

    Matthew G. Parry & Jan van der Meulen

  6. Department of Health Services Research & Policy, London School of Hygiene and Tropical Medicine, London, UK

    Matthew G. Parry, Julie Nossiter & Jan van der Meulen

  7. Department of Radiation Oncology, University of Kansas, Kansas City, KS, USA

    Ronald C. Chen

  8. Department of Urology, Guy’s & St Thomas’ NHS Foundation Trust, London, UK

    Paul Cathcart

Authors
  1. Udit Singhal
    View author publications

    Search author on:PubMed Google Scholar

  2. Ted A. Skolarus
    View author publications

    Search author on:PubMed Google Scholar

  3. John L. Gore
    View author publications

    Search author on:PubMed Google Scholar

  4. Matthew G. Parry
    View author publications

    Search author on:PubMed Google Scholar

  5. Ronald C. Chen
    View author publications

    Search author on:PubMed Google Scholar

  6. Julie Nossiter
    View author publications

    Search author on:PubMed Google Scholar

  7. Alan Paniagua-Cruz
    View author publications

    Search author on:PubMed Google Scholar

  8. Arvin K. George
    View author publications

    Search author on:PubMed Google Scholar

  9. Paul Cathcart
    View author publications

    Search author on:PubMed Google Scholar

  10. Jan van der Meulen
    View author publications

    Search author on:PubMed Google Scholar

  11. Daniela A. Wittmann
    View author publications

    Search author on:PubMed Google Scholar

Contributions

U.S., T.A.S. and D.A.W. researched data for the article. All authors contributed substantially to discussion of the content, wrote the article and reviewed and/or edited the manuscript before submission.

Corresponding author

Correspondence to Udit Singhal.

Ethics declarations

Competing interests

The authors declare no competing interests.

Peer review

Peer review information

Nature Reviews Urology thanks the anonymous reviewers for their contribution to the peer review of this work.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Related links

Movember TrueNTH Symptom Tracker: https://truenorth.movember.com/en-us

MUSIC Urology web-based system: https://musicurology.com/pro/

Glossary

Cancer of the Prostate Strategic Urologic Research Endeavor

(CaPSURE). A longitudinal, observational prostate cancer registry consisting of >15,000 men from 43 community, academic and Veterans Affairs-based practices throughout the USA.

European Organization for Research and Treatment of Cancer

(EORTC). An international non-profit cancer research organization developed to improve quality of life and survival across multiple tumour types.

Patient-Reported Outcomes Measurement Information System

(PROMIS). An initiative developed by the United States’ National Institutes of Health to develop, validate and standardize item banks for the measurement of patient-reported outcomes for a range of chronic medical conditions

Comparative Effectiveness Analysis of Surgery and Radiation

(CEASER). A multi-institutional prostate cancer registry consisting of >3,600 men with localized prostate cancer diagnosed between 2010 and 2012 in the USA.

International Prostate Symptom Score

A validated scoring system for the measurement of the severity of lower urinary tract symptoms associated with benign prostatic hypertrophy.

Sexual Health Inventory for Men

(SHIM). A validated questionnaire used for screening and diagnosis of erectile dysfunction in men.

International Index of Erectile Function

(IIEF). A validated, self-administered measure of sexual function, including erectile function, orgasmic function, sexual desire, intercourse satisfaction, and overall satisfaction.

Rasch measurement theory

A psychometric family of statistical models that are used to assess the quality of tests and questionnaires and to measure latent traits such as attitude or ability.

Item response theory

A family of mathematical and statistical models that are used to understand and explain the relationship between unobservable traits (items within a questionnaire) and their observed outcomes.

Classic test theory

A psychometric and mathematical model that is used to improve and assess test reliability and validity.

Movember Foundation

An international charity organization that seeks to raise awareness and funding for men’s health initiatives, including for prostate cancer, testicular cancer, mental health and suicide prevention.

IRONMAN

International Registry for Men with Advanced Prostate Cancer. A prospective, international cohort of >2,000 men with metastatic hormone-sensitive and castrate-resistant prostate cancer that started in 2017, with the goal of the collection of prospective data on survival, adverse effects, comorbidities, treatment and patient-reported outcome measures in advanced prostate cancer.

National Prostate Cancer Audit

(NPCA). A national clinical audit commissioned to gain information regarding characteristics, outcomes and patterns in care delivery for patients with prostate cancer in England and Wales.

Brief Coping Orientation to Problems Experienced Scale

A self-reported questionnaire that assesses coping responses, including acceptance, emotional support, humour, positive reframing, religion, active coping, instrumental support, planning, denial, substance use and venting, among others.

Lewis Mutuality and Interpersonal Sensitivity Scale

A measure of dyadic communication between patient and caregiver about cancer, with higher scores perceiving more open communication.

Female Sexual Function Index

(FSFI). A validated questionnaire developed to assess sexual functioning domains in clinical trials for women, including sexual arousal, orgasm, satisfaction and pain.

Prostate Cancer Clinical Trials Working Group

An international group of prostate cancer experts, including translational and clinical researchers, convened to develop recommendations and guidelines for collection, reporting and assessment of outcomes in prostate cancer clinical trials.

Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events

(PRO-CTAE). A system developed by the National Cancer Institute of the National Institutes of Health in the United States to capture symptomatic adverse events in patients on clinical trials in cancer.

Brief Pain Inventory — short form

(BPI-SF). A validated questionnaire to rapidly assess the severity and impact of pain on daily functioning from chronic conditions, such as cancer.

Brief Fatigue Inventory

(BFI). A validated questionnaire to rapidly assess the severity and impact of fatigue on daily functioning from cancer-related symptoms or treatment.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Singhal, U., Skolarus, T.A., Gore, J.L. et al. Implementation of patient-reported outcome measures into health care for men with localized prostate cancer. Nat Rev Urol 19, 263–279 (2022). https://doi.org/10.1038/s41585-022-00575-4

Download citation

  • Accepted:

  • Published:

  • Version of record:

  • Issue date:

  • DOI: https://doi.org/10.1038/s41585-022-00575-4

This article is cited by

Search

Advanced search

Quick links

Nature Briefing

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

Get the most important science stories of the day, free in your inbox. Sign up for Nature Briefing