Skip to main content
Log in

Use of patient-reported experience and outcome measures within the colorectal cancer care continuum: a scoping review

  • Review
  • Published:
Journal of Cancer Survivorship Aims and scope Submit manuscript

Abstract

Objective

Patient-reported outcome measures (PROM) are frequently adopted to evaluate colorectal cancer (CRC) care, but the use of patient-reported experience measures (PREM) appears to be underdeveloped and not widely validated. This scoping review aims to understand the contexts for deployment of PREMs in CRC care, reliability of measures, gaps in current use of PREMs, and how PREMs are associated with PROMs when deployed together.

Methods

Four scientific databases (PubMed, CINAHL, PsycINFO, Scopus) were systematically searched from January 2011 to December 2023. Observational or interventional studies involving quantitative or mixed methodology with samples consisting CRC patients undergoing screening, treatment, or cancer surveillance and utilizing at least one PREM as an exposure or outcome were included.

Results

The initial search resulted in 10,400 records. Only 13 relevant studies (consisting of 17,105 participants) met the eligibility criteria. Utilization of PREMs was heterogenous across our sample and the CRC care continuum, and about half of the studies (53.8%) evaluated the relationship between PREMs and PROMs. PREM usage across the CRC care continuum largely focused on treatment/survivorship. Better care experience was positively associated with improved patient-reported outcomes.

Conclusions

Future work in CRC PREM development should focus on (1) establishing validated measures that aim to either capture disease/treatment-specific granularity or capitalize on applicability across care settings, (2) localizing novel or existing PREMs to consider different cultural contexts in healthcare, and (3) benchmarking associations between PREMs, PROMs, and other outcomes of interest.

Implications for Cancer Survivors

Individuals progressing through the CRC care continuum often undergo a multitude of procedures from detection and diagnosis to treatment and surveillance. The establishment of validated PREMs specific to CRC would help to benchmark and further improve the quality of care received—which should translate to better patient-reported outcomes—and serve as process indicators for institutions and providers to maintain rigorous health service delivery standard for CRC survivors.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1

Similar content being viewed by others

Data availability

All data supporting the findings can be found within our article.

References

  1. Weldring T, Smith SM. Patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs). Health Serv Insights. 2013;6:61–8.

    PubMed  PubMed Central  Google Scholar 

  2. Kingsley C, Patel S. Patient-reported outcome measures and patient-reported experience measures. BJA Education. 2017;17(4):137–44.

    Article  Google Scholar 

  3. Kaplan RS, Porter ME. How to solve the cost crisis in health care. Harv Bus Rev. 2011;89(9):46–52 (56-61 passim).

    PubMed  Google Scholar 

  4. Withers K, Palmer R, Lewis S, Carolan-Rees G. First steps in PROMs and PREMs collection in Wales as part of the prudent and value-based healthcare agenda. Qual Life Res. 2021;30(11):3157–70.

    Article  PubMed  Google Scholar 

  5. Colorectal cancer statistics. https://www.wcrf.org/dietandcancer/cancer-trends/colorectal-cancer-statistics. Accessed 6 Dec 2023.

  6. Rudolph C, Petersen GS, Pritzkuleit R, Storm H, Katalinic A. The acceptance and applicability of a patient-reported experience measurement tool in oncological care: a descriptive feasibility study in northern Germany. BMC Health Serv Res. 2019;19(1):786.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Geessink NH, Schoon Y, Olde Rikkert MG, van Goor H. Training surgeons in shared decision-making with cancer patients aged 65 years and older: a pilot study. Cancer Manag Res. 2017;9:591–600.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Neilson LJ, Patterson J, von Wagner C, Hewitson P, McGregor LM, Sharp L, Rees CJ. Patient experience of gastrointestinal endoscopy: informing the development of the Newcastle ENDOPREM. Frontline Gastroenterol. 2020;11(3):209–17.

    Article  PubMed  PubMed Central  Google Scholar 

  9. The Cancer Continuum. https://canceratlas.cancer.org/taking-action/cancer-continuum/. Accessed 6 Dec 2023.

  10. Scanlon B, Brough M, Wyld D, Durham J. Equity across the cancer care continuum for culturally and linguistically diverse migrants living in Australia: a scoping review. Global Health. 2021;17(1):87.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Jackson GL, Zullig LL, Phelan SM, Provenzale D, Griffin JM, Clauser SB, Haggstrom DA, Jindal RM, van Ryn M. Patient characteristics associated with the level of patient-reported care coordination among male patients with colorectal cancer in the Veterans Affairs health care system. Cancer. 2015;121(13):2207–13.

    Article  PubMed  Google Scholar 

  12. Napoles AM, Santoyo-Olsson J, Stewart AL, Olmstead J, Gregorich SE, Farren G, Cabral R, Freudman A, Perez-Stable EJ. Physician counseling on colorectal cancer screening and receipt of screening among Latino patients. J Gen Intern Med. 2015;30(4):483–9.

    Article  PubMed  Google Scholar 

  13. Pollack CE, Rastegar A, Keating NL, Adams JL, Pisu M, Kahn KL. Is self-referral associated with higher quality care? Health Serv Res. 2015;50(5):1472–90.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Roydhouse JK, Gutman R, Keating NL, Mor V, Wilson IB. Differences between proxy and patient assessments of cancer care experiences and quality ratings. Health Serv Res. 2018;53(2):919–43.

    Article  PubMed  Google Scholar 

  15. Treiman K, McCormack L, Wagner L, Roach N, Moultrie R, Sanoff H, Bann C, Street RL Jr, Ashok M, Reeve BB. Factors affecting the communication experiences of newly diagnosed colorectal cancer patients. Patient Educ Couns. 2018;101(9):1585–93.

    Article  PubMed  Google Scholar 

  16. van Ryn M, Phelan SM, Arora NK, Haggstrom DA, Jackson GL, Zafar SY, Griffin JM, Zullig LL, Provenzale D, Yeazel MW, et al. Patient-reported quality of supportive care among patients with colorectal cancer in the Veterans Affairs Health Care System. J Clin Oncol. 2014;32(8):809–15.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Burton-Chase AM, Parker WM, Polivka KM, Gritz ER, Amos CI, Lu KH, Lynch PM, Rodriguez-Bigas MA, Nancy You Y, Peterson SK. A comparison between Lynch syndrome and sporadic colorectal cancer survivors’ satisfaction with their healthcare providers. Cancer Med. 2017;6(3):698–707.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Havyer RD, van Ryn M, Wilson PM, Bangerter LR, Griffin JM. Concordance of patient and caregiver reports on the quality of colorectal cancer care. J Oncol Pract. 2019;15(11):e979–88.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Durcinoska I, Young JM, Solomon MJ. Patterns and predictors of colorectal cancer care coordination: a population-based survey of Australian patients. Cancer. 2017;123(2):319–26.

    Article  PubMed  Google Scholar 

  20. Young JM, Durcinoska I, DeLoyde K, Solomon MJ. Patterns of follow up and survivorship care for people with colorectal cancer in new South Wales, Australia: a population-based survey. BMC Cancer. 2018;18(1):339.

    Article  PubMed  PubMed Central  Google Scholar 

  21. Brotons A, Guilabert M, Lacueva FJ, et al. The colonoscopy satisfaction and safety questionnaire (CSSQP) for colorectal cancer screening: a development and validation study. Int J Environ Res Public Health. 2019;16(3):392. https://doi.org/10.3390/ijerph16030392.

  22. Koreli A, Briassoulis G, Sideris M, Philalithis A, Papagrigoriadis S. Transanal endoscopic microsurgery (TEMS) for rectal cancer: patient decision-making, postoperative experience and quality of life. In Vivo. 2021;35(2):1235–45.

    Article  PubMed  PubMed Central  Google Scholar 

  23. Drury A, Payne S, Brady AM. Identifying associations between quality of life outcomes and healthcare-related variables among colorectal cancer survivors: a cross-sectional survey study. Int J Nurs Stud. 2020;101:103434.

    Article  PubMed  Google Scholar 

  24. Jamieson Gilmore K, Corazza I, Coletta L, Allin S. The uses of Patient Reported Experience Measures in health systems: a systematic narrative review. Health Policy. 2023;128:1–10.

    Article  PubMed  Google Scholar 

  25. Hodson M, Andrew S, Michael Roberts C. Towards an understanding of PREMS and PROMS in COPD. Breathe. 2013;9(5):358–64.

    Article  Google Scholar 

  26. Mooney K, Berry DL, Whisenant M, Sjoberg D. Improving cancer care through the patient experience: how to use patient-reported outcomes in clinical practice. Am Soc Clin Oncol Educ Book. 2017;37:695–704.

    Article  PubMed  Google Scholar 

  27. Modules. https://qol.eortc.org/modules/. Accessed 6 Dec 2023.

  28. Pun JKH, Chan EA, Wang S, Slade D. Health professional-patient communication practices in East Asia: an integrative review of an emerging field of research and practice in Hong Kong, South Korea, Japan, Taiwan, and Mainland China. Patient Educ Couns. 2018;101(7):1193–206.

    Article  PubMed  Google Scholar 

  29. Foo C, Tan YL, Shrestha P, Eh KX, Ang IYH, Nurjono M, Toh SA, Shiraz F. Exploring the dimensions of patient experience for community-based care programmes in a multi-ethnic Asian context. PLoS One. 2020;15(11):e0242610.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  30. Bull C, Callander EJ. Current PROM and PREM use in health system performance measurement: still a way to go. Patient Experience Journal. 2022;9(1):12–8.

    Article  Google Scholar 

  31. Black N, Varaganum M, Hutchings A. Relationship between patient reported experience (PREMs) and patient reported outcomes (PROMs) in elective surgery. BMJ Qual Saf. 2014;23(7):534–42.

    Article  PubMed  Google Scholar 

  32. Athanatos L, Sandean DP, Burgula M, Lee B, Pandey R, Singh HP. Use of patient reported experience measure and patient reported outcome measures to evaluate differences in surgical or non-surgical management of humeral shaft fractures. Shoulder Elbow. 2023;15(2):140–50.

    Article  PubMed  Google Scholar 

  33. Bull C, Teede H, Watson D, Callander EJ. Selecting and implementing patient-reported outcome and experience measures to assess health system performance. JAMA Health Forum. 2022;3(4):e220326.

    Article  PubMed  Google Scholar 

  34. Bozic KJ. Improving value in healthcare. Clin Orthop Relat Res. 2013;471(2):368–70.

    Article  PubMed  Google Scholar 

  35. Male L, Noble A, Atkinson J, Marson T. Measuring patient experience: a systematic review to evaluate psychometric properties of patient reported experience measures (PREMs) for emergency care service provision. Int J Qual Health Care. 2017;29(3):314–26.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Funding

The authors declare that no funds, grants, or other support was received during the preparation of this manuscript.

Author information

Authors and Affiliations

Authors

Contributions

Jerrald Lau, Janelle Ng, Ning-Qi Pang, and Ker-Kan Tan conceptualized the study. Jerrald Lau, Janelle Ng, and Shi-Ying Tham contributed to the study design and search protocol. Lydia Li-Yeh Tan, Shi-Ying Tham, and Chee-Kee Ng performed the initial database search and screening of titles and abstracts. Jerrald Lau, Janelle Shaina Ng, and Daphne Lee reviewed the full texts and performed data extraction. Janelle Shaina Ng and Daphne Lee extracted and analyzed the data. Jerrald Lau, Janelle Shaina Ng, and Jarrod K-H Tan wrote and edited the first draft. All authors read, edited, and approved subsequent drafts and the final manuscript.

Corresponding author

Correspondence to Ker-Kan Tan.

Ethics declarations

Ethics approval

Not applicable.

Consent for publication

Not applicable.

Consent to participate

Not applicable.

Competing interests

The authors have no relevant financial or non-financial interests to disclose.

Additional information

Publisher's Note

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

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Lau, J., Ng, J.S., Lee, D. et al. Use of patient-reported experience and outcome measures within the colorectal cancer care continuum: a scoping review. J Cancer Surviv (2024). https://doi.org/10.1007/s11764-024-01595-2

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1007/s11764-024-01595-2

Keywords

Navigation