Survivor-driven development of a PROM for use in routine colorectal cancer care
DOI:
https://doi.org/10.2340/1651-226X.2025.42032Keywords:
Late effects, Unmet needs, patient-reported-outcomes, screening, patient and public involvement, patient engagementAbstract
Background and purpose: Despite the availability of patient reported outcome (PRO) measures (PROMs) for assessing survivorship care needs, their successful implementation remains limited. This study aimed to improve the likelihood of implementation success by actively engaging end-users in developing a PROM designed to address implementation barriers.
Patients and methods: Selected barriers for implementation were: (1) PROMs do not adequately address relevant issues, (2) PROMs can inhibit patient-clinician interaction, and (3) PROMs are not suitable for all patients. Management of these barriers were discussed at two 1-day workshops at Vejle Hospital with in-person attendance by colorectal cancer (CRC) survivors and informal caregivers (ICs). Relevant issues of CRC survivorship care (barrier 1) were defined based on data from four distinct sources. Solutions to overcoming barriers 2 and 3 were discussed at the workshops. Workshop data were guided by the Qualitative Analysis Guide of Leuven (QUAGOL) guide.
Results: The four distinct sources provided data from 4,545 CRC survivors. Thirteen individuals attended the in-person workshops. The following constructs were identified as relevant (barrier 1): self-rated well-being relative to pre-diagnosis, late effects encompassing both psychological and physical aspects, the role of caregivers, identity considerations, support systems, economic impacts, rehabilitation needs, and information provision. Specific element (e.g., keywords, prioritisation and agenda-setting) were incorporated to facilitate patient-clinician interactions (barrier 2). All constructs were considered relevant across all stages of CRC survivorship (barrier 3). The final PROM comprised 34 items.
Interpretation: This dialogue-tool is designed to address implementation barriers by providing direct feedback on relevant late effects and supportive care needs from CRC survivors to clinicians.
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References
Jefford M, Ward AC, Lisy K, Lacey K, Emery JD, Glaser AW, et al. Patient-reported outcomes in cancer survivors: a population-wide cross-sectional study. Support Care Cancer. 2017;25(10):3171–9.
https://doi.org/10.1007/s00520-017-3725-5 DOI: https://doi.org/10.1007/s00520-017-3725-5
Simard S, Thewes B, Humphris G, Dixon M, Hayden C, Mireskandari S, et al. Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies. J Cancer Surviv. 2013;7(3):300–22.
https://doi.org/10.1007/s11764-013-0272-z DOI: https://doi.org/10.1007/s11764-013-0272-z
Glaser AW, Fraser LK, Corner J, Feltbower R, Morris EJ, Hartwell G, et al. Patient-reported outcomes of cancer survivors in England 1–5 years after diagnosis: a cross-sectional survey. BMJ Open. 2013;3(4): e002317.
https://doi.org/10.1136/bmjopen-2012-002317 DOI: https://doi.org/10.1136/bmjopen-2012-002317
Downing A, Morris EJ, Richards M, Corner J, Wright P, Sebag-Montefiore D, et al. Health-related quality of life after colorectal cancer in England: a patient-reported outcomes study of individuals 12 to 36 months after diagnosis. J Clin Oncol. 2015;33(6):616–24.
https://doi.org/10.1200/jco.2014.56.6539 DOI: https://doi.org/10.1200/JCO.2014.56.6539
Sundhedsstyrelsen. Senfølger efter kræft hos voksne. [cited September 26th 2024] Available from: https://www.sst.dk/da/viden/sygdomme/kraeft/rehabilitering-og-palliation-paa-kraeftomraadet/senfoelger-efter-kraeft-hos-voksne
Bekæmpelse K. Kræftpatienternes behov og oplevelse med sundhedsvæsenet i opfølgnings- og efterforløbet. Kræftens Bekæmpelses Barometerundersøgelse. 2019. [cited September 26th 2024] Available from: https://www.cancer.dk/dyn/resources/File/file/3/8373/1574778638/kraeftens-bekaempelses-barometerundersoegelse-2019.pdf
Vaz-Luis I, Masiero M, Cavaletti G, Cervantes A, Chlebowski RT, Curigliano G, et al. ESMO Expert Consensus Statements on Cancer Survivorship: promoting high-quality survivorship care and research in Europe. Ann Oncol. 2022;33(11):1119–33.
https://doi.org/10.1016/j.annonc.2022.07.1941 DOI: https://doi.org/10.1016/j.annonc.2022.07.1941
Hart NH, Nekhlyudov L, Smith TJ, Yee J, Fitch MI, Crawford GB, et al. Survivorship care for people affected by advanced or metastatic cancer: MASCC-ASCO standards and practice recommendations. Support Care Cancer. 2024;32(5):313.
https://doi.org/10.1007/s00520-024-08465-8 DOI: https://doi.org/10.1007/s00520-024-08465-8
Sundhedsstyrelsen. Pakkeforløb for kræft i tyk- og endetarm. [cited September 26th 2024] Available from: https://www.sst.dk/da/udgivelser/2022/pakkeforloeb-for-kraeft-i-tyk-og-endetarm
Graupner C, Kimman ML, Mul S, Slok AHM, Claessens D, Kleijnen J, et al. Patient outcomes, patient experiences and process indicators associated with the routine use of patient-reported outcome measures (PROMs) in cancer care: a systematic review. Support Care Cancer. 2021;29(2):573–93.
https://doi.org/10.1007/s00520-020-05695-4 DOI: https://doi.org/10.1007/s00520-020-05695-4
Di Maio M, Basch E, Denis F, Fallowfield LJ, Ganz PA, Howell D, et al. The role of patient-reported outcome measures in the continuum of cancer clinical care: ESMO Clinical Practice Guideline. Ann Oncol. 2022;33(9):878–92.
https://doi.org/10.1016/j.annonc.2022.04.007 DOI: https://doi.org/10.1016/j.annonc.2022.04.007
Campbell R, Ju A, King MT, Rutherford C. Perceived benefits and limitations of using patient-reported outcome measures in clinical practice with individual patients: a systematic review of qualitative studies. Qual Life Res. 2022;31(6):1597–620.
https://doi.org/10.1007/s11136-021-03003-z DOI: https://doi.org/10.1007/s11136-021-03003-z
Yang LY, Manhas DS, Howard AF, Olson RA. Patient-reported outcome use in oncology: a systematic review of the impact on patient-clinician communication. Support Care Cancer. 2018;26(1):41–60.
https://doi.org/10.1007/s00520-017-3865-7 DOI: https://doi.org/10.1007/s00520-017-3865-7
Licqurish SM, Cook OY, Pattuwage LP, Saunders C, Jefford M, Koczwara B, et al. Tools to facilitate communication during physician-patient consultations in cancer care: an overview of systematic reviews. CA Cancer J Clin. 2019;69(6):497–520.
https://doi.org/10.3322/caac.21573 DOI: https://doi.org/10.3322/caac.21573
Lai-Kwon J, Rutherford C, Jefford M, Gore C, Best S. Using implementation science frameworks to guide the use of electronic patient-reported outcome symptom monitoring in routine cancer care. JCO Oncol Pract. 2024;20(3):335-349.
https://doi.org/10.1200/op.23.00462 DOI: https://doi.org/10.1200/OP.23.00462
Roberts NA, Alexander K, Wyld D, Janda M. What is needed by staff to implement PROMs into routine oncology care? A qualitative study with the multi-disciplinary team. Eur J Cancer Care. 2019;28(6):e13167.
https://doi.org/10.1111/ecc.13167 DOI: https://doi.org/10.1111/ecc.13167
Briggs MS, Rethman KK, Crookes J, Cheek F, Pottkotter K, McGrath S,
et al. Implementing patient-reported outcome measures in outpatient rehabilitation settings: a systematic review of facilitators and barriers using the consolidated framework for implementation research. Arch Phys Med Rehabil. 2020;101(10):1796–812.
https://doi.org/10.1016/j.apmr.2020.04.007 DOI: https://doi.org/10.1016/j.apmr.2020.04.007
Howell D, Molloy S, Wilkinson K, Green E, Orchard K, Wang K, et al. Patient-reported outcomes in routine cancer clinical practice: a scoping review of use, impact on health outcomes, and implementation factors. Ann Oncol. 2015;26(9):1846–58.
https://doi.org/10.1093/annonc/mdv181 DOI: https://doi.org/10.1093/annonc/mdv181
Pappot H, Taarnhøj GA, Bentsen L, Friis RB, Bæksted C, Christiansen MG, et al. Patient-reported outcomes used actively in cancer patients undergoing antineoplastic treatment: a mini-review of the Danish landscape. Comput Struct Biotechnol J. 2024;24:23–30.
https://doi.org/10.1016/j.csbj.2023.11.054 DOI: https://doi.org/10.1016/j.csbj.2023.11.054
Hodgkinson K, Butow P, Hunt GE, Pendlebury S, Hobbs KM, Lo SK, et al. The development and evaluation of a measure to assess cancer survivors’ unmet supportive care needs: the CaSUN (Cancer Survivors’ Unmet Needs measure). Psycho-oncology. 2007;16(9):796–804.
https://doi.org/10.1002/pon.1137 DOI: https://doi.org/10.1002/pon.1137
Boyes A, Girgis A, Lecathelinais C. Brief assessment of adult cancer patients’ perceived needs: development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34). J Evaluation Clin Pract. 2009;15(4):602–6.
https://doi.org/10.1111/j.1365-2753.2008.01057.x DOI: https://doi.org/10.1111/j.1365-2753.2008.01057.x
Groenvold M, Petersen MA, Aaronson NK, Arraras JI, Blazeby JM, Bottomley A, et al. The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer. 2006;42(1):55–64.
https://doi.org/10.1016/j.ejca.2005.06.022 DOI: https://doi.org/10.1016/j.ejca.2005.06.022
Whistance R, Conroy T, Chie W, Costantini A, Sezer O, Koller M, et al. Clinical and psychometric validation of the EORTC QLQ-CR29 questionnaire module to assess health-related quality of life in patients with colorectal cancer. Eur J Cancer. 2009;45(17):3017–26. DOI: https://doi.org/10.1016/j.ejca.2009.08.014
Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. 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. 1993;85(5):365–76.
https://doi.org/10.1093/jnci/85.5.365 DOI: https://doi.org/10.1093/jnci/85.5.365
Institute P-COR. Engagement in research: foundational expectations for partnerships 2024. [cited September 26th 2024] Available from: https://www.pcori.org/sites/default/files/PCORI-Engagement-in-Research-Foundational-Expectations-for-Partnerships.pdf
Aiyegbusi OL, Cruz Rivera S, Roydhouse J, Kamudoni P, Alder Y, Anderson N, et al. Recommendations to address respondent burden associated with patient-reported outcome assessment. Nat Med. 2024;30(3):650-659.
https://doi.org/10.1038/s41591-024-02827-9 DOI: https://doi.org/10.1038/s41591-024-02827-9
Kirkham JJ, Davis K, Altman DG, Blazeby JM, Clarke M, Tunis S, et al. Core outcome Set-STAndards for development: the COS-STAD recommendations. PLoS Med. 2017;14(11):e1002447.
https://doi.org/10.1371/journal.pmed.1002447 DOI: https://doi.org/10.1371/journal.pmed.1002447
Dierckx de Casterlé B, Gastmans C, Bryon E, Denier Y. QUAGOL: a guide for qualitative data analysis. Int J Nurs Stud. 2012;49(3):360–71.
https://doi.org/10.1016/j.ijnurstu.2011.09.012 DOI: https://doi.org/10.1016/j.ijnurstu.2011.09.012
Simard S, Savard J. Fear of Cancer Recurrence Inventory: development and initial validation of a multidimensional measure of fear of cancer recurrence. Support Care Cancer. 2009;17(3):241–51.
https://doi.org/10.1007/s00520-008-0444-y DOI: https://doi.org/10.1007/s00520-008-0444-y
Christensen KS, Fink P, Toft T, Frostholm L, Ornbøl E, Olesen F. A brief case-finding questionnaire for common mental disorders: the CMDQ. Fam Pract. 2005;22(4):448–57.
https://doi.org/10.1093/fampra/cmi025 DOI: https://doi.org/10.1093/fampra/cmi025
Rimmer B, Crowe L, Todd A, Sharp L. Assessing unmet needs in advanced cancer patients: a systematic review of the development, content, and quality of available instruments. J Cancer Surviv. 2022;16(5):960–75.
https://doi.org/10.1007/s11764-021-01088-6 DOI: https://doi.org/10.1007/s11764-021-01088-6
Aminisani N, Nikbakht H, Asghari Jafarabadi M, Shamshirgaran SM. Depression, anxiety, and health related quality of life among colorectal cancer survivors. J Gastrointest Oncol. 2017;8(1):81–8.
https://doi.org/10.21037/jgo.2017.01.12 DOI: https://doi.org/10.21037/jgo.2017.01.12
Brandenbarg D, Maass S, Geerse OP, Stegmann ME, Handberg C, Schroevers MJ, et al. A systematic review on the prevalence of symptoms of depression, anxiety and distress in long-term cancer survivors: implications for primary care. Eur J Cancer Care. 2019;28(3):e13086.
https://doi.org/10.1111/ecc.13086 DOI: https://doi.org/10.1111/ecc.13086
Mitchell AJ, Ferguson DW, Gill J, Paul J, Symonds P. Depression and anxiety in long-term cancer survivors compared with spouses and healthy controls: a systematic review and meta-analysis. Lancet Oncol. 2013;14(8):721–32.
https://doi.org/10.1016/s1470-2045(13)70244-4 DOI: https://doi.org/10.1016/S1470-2045(13)70244-4
Mols F, Schoormans D, de Hingh I, Oerlemans S, Husson O. Symptoms of anxiety and depression among colorectal cancer survivors from the population-based, longitudinal PROFILES Registry: prevalence, predictors, and impact on quality of life. Cancer. 2018;124(12):2621–8.
https://doi.org/10.1002/cncr.31369 DOI: https://doi.org/10.1002/cncr.31369
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Copyright (c) 2025 Johanne D. Lyhne, Lise Gade , Laila Hansen , Anne Johansen , Allan 'Ben' Smith, Lars Henrik Jensen, Lise Ventzel
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