Patient-Reported Outcomes as a Tool for Involvement in Metastatic Melanoma Care

Authors

  • Pernille Christiansen Skovlund Department of Oncology, Aarhus University Hospital, Aarhus, Denmark https://orcid.org/0000-0001-5310-651X
  • Ditte Minet Karkov Department of Public Health, Aarhus University, Aarhus, Denmark
  • Charlotte Gjørup Pedersen Department of Public Health, Aarhus University, Aarhus, Denmark; Steno Diabetes Center Aarhus, Aarhus University Hospital, Aarhus, Denmark https://orcid.org/0000-0003-1116-8389
  • Annesofie Lunde Jensen Steno Diabetes Center Aarhus, Aarhus University Hospital, Aarhus, Denmark; Department of Clinical Medicine, Aarhus University, Aarhus, Denmark https://orcid.org/0000-0003-2025-6663

DOI:

https://doi.org/10.2340/1651-226X.2025.43465

Keywords:

Patient reported outcome, Advanced melanoma, patient involvement, health communication, relationships

Abstract

Background and purpose: Patients with metastatic melanoma live longer than a decade ago and have limited contact with the healthcare system. This requires a focus on their ability to manage their health. Patient involvement can contribute to this. The use of Patient-Reported Outcome (PRO) may facilitate patient involvement in clinical encounters, especially in the form of enhanced communication between patient and clinician. The purpose of the study was to investigate the association between active use of PRO and patient involvement for patients with metastatic melanoma.

Patient/material and methods: This study was based on data from a non-randomized controlled study, in which Danish patients with metastatic melanoma were assigned to either an intervention (PRO actively used as a dialog tool in consultations throughout a year) or control group (standard treatment), based on geographic affiliation. The outcome in the present study was patient involvement, measured with five indicators of patient involvement. Linear regression models were used to estimate the crude and adjusted association between intervention and patient involvement at 3, 6, and 12 months.

Results: A total of 237 patients were included, 114 patients in the intervention group and 123 patients in the control group. Adjusted mean difference between intervention and control group was 1.54 (0.24; 2.83) at 6 months and 1.32 (0.06; 2.59) at 12 months (p < 0.05). Improvement was observed in just one indicator of patient involvement, specifically ‘dialog between patient and physician’.

Interpretation: Using PRO actively as a dialog tool in consultations can contribute to improved patient involvement for patients with metastatic melanoma.

Downloads

Download data is not yet available.

References

Saginala K, Barsouk A, Aluru JS, Rawla P, Barsouk A. Epidemiology of melanoma. Med Sci (Basel). 2021;9(4):63.

https://doi.org/10.3390/medsci9040063 DOI: https://doi.org/10.3390/medsci9040063

Michielin O, van Akkooi ACJ, Ascierto PA, Dummer R, Keilholz U. Cutaneous melanoma: ESMO Clinical Practice guidelines for diagnosis, treatment and follow-up†. Ann Oncol. 2019;30(12):1884–901.

https://doi.org/10.1093/annonc/mdz411 DOI: https://doi.org/10.1093/annonc/mdz411

Larkin J, Chiarion-Sileni V, Gonzalez R, Grob J-J, Rutkowski P, Lao CD, et al. Five-year survival with combined nivolumab and ipilimumab in advanced melanoma. N Engl J Med. 2019;381(16):1535–46.

https://doi.org/10.1056/NEJMoa1910836 DOI: https://doi.org/10.1056/NEJMoa1910836

Weitman ES, Perez M, Thompson JF, Andtbacka RHI, Dalton J, Martin ML, et al. Quality of life patient-reported outcomes for locally advanced cutaneous melanoma. Melanoma Res. 2018;28(2):134–42.

https://doi.org/10.1097/CMR.0000000000000425 DOI: https://doi.org/10.1097/CMR.0000000000000425

Skovlund PC, Vind Thaysen H, Schmidt H, Alsner J, Hjollund NH, Lomborg K, et al. Effect of patient-reported outcomes as a dialogue-based tool in cancer consultations on patient self-management and health-related quality of life: a clinical, controlled trial. Acta Oncol. 2021;60(12):1668–77.

https://doi.org/10.1080/0284186X.2021.1962972 DOI: https://doi.org/10.1080/0284186X.2021.1962972

Cribb A. Involvement, shared decision-making and medicines. Royal Pharmaceutical Society of Great Britain; 2011.

European Commission. Eurobarometer qualitative study on patient involvement. 2012.

Epstein RM, Street RL. Patient-centered communication in cancer care: promoting healing and reducing suffering. Bethesda: National Cancer Institute; 2007. DOI: https://doi.org/10.1037/e481972008-001

Noteboom EA, May AM, van der Wall E, de Wit NJ, Helsper CW. Patients’ preferred and perceived level of involvement in decision making for cancer treatment: a systematic review. Psychooncology. 2021;30(10):1663–79.

https://doi.org/10.1002/pon.5750 DOI: https://doi.org/10.1002/pon.5750

Albrecht KJ, Nashan D, Meiss F, Bengel J, Reuter K. Shared decision making in dermato-oncology: preference for involvement of melanoma patients. Melanoma Res. 2014;24(1):68–74.

https://doi.org/10.1097/CMR.0000000000000030 DOI: https://doi.org/10.1097/CMR.0000000000000030

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

Kargo AS, Jensen PT, Lindemann K, Hjollund NHI, Lund B, Haee M, et al. The PROMova study comparing active and passive use of patient-

reported outcome measures in ovarian cancer follow-up: effect on patient-perceived involvement, satisfaction with care, and usefulness. Acta Oncol. 2021;60(4):434–43.

https://doi.org/10.1080/0284186X.2021.1891281 DOI: https://doi.org/10.1080/0284186X.2021.1891281

Hjollund NHI, Larsen LP, Biering K, Johnsen SP, Riiskjær E, Schougaard LM. Use of Patient-Reported Outcome (PRO) Measures at Group and patient levels: experiences from the generic integrated PRO system, WestChronic. Interact J Med Res. 2014;3(1):e5.

https://doi.org/10.2196/ijmr.2885 DOI: https://doi.org/10.2196/ijmr.2885

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

Detmar SB, Muller MJ, Schornagel JH, Wever LDV, Aaronson NK. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. JAMA. 2002;288(23):3027–34.

https://doi.org/10.1001/jama.288.23.3027 DOI: https://doi.org/10.1001/jama.288.23.3027

Ravn S, Thaysen HV, Verwaal VJ, Seibæk L, Iversen LH. Cancer follow-up supported by patient-reported outcomes in patients undergoing intended curative complex surgery for advanced cancer. J Patient-Rep Outcomes. 2021;5(1):120.

https://doi.org/10.1186/s41687-021-00391-1 DOI: https://doi.org/10.1186/s41687-021-00391-1

Erlang AS, Schjødt K, Linde JKS, Jensen AL. An observational study of older patients’ experiences of involvement in discharge planning. Geriatr Nurs (New York). 2021;42(4):855–62.

https://doi.org/10.1016/j.gerinurse.2021.04.002 DOI: https://doi.org/10.1016/j.gerinurse.2021.04.002

Erickson N, Schinkoethe T, Eckhardt C, Storck L, Joos A, Liu L, et al. Patient-reported outcome measures obtained via E-Health tools ease the assessment burden and encourage patient participation in cancer care (PaCC Study). Support Care Cancer. 2021;29(12):7715–24.

https://doi.org/10.1007/s00520-021-06351-1 DOI: https://doi.org/10.1007/s00520-021-06351-1

Basch E, Stover AM, Schrag D, Chung A, Jansen J, Henson S, et al. Clinical utility and user perceptions of a digital system for electronic patient-

reported symptom monitoring during routine cancer care: Findings from the PRO-TECT trial. JCO Clin Cancer Inform. 2020;4(4):947–57.

https://doi.org/10.1200/CCI.20.00081 DOI: https://doi.org/10.1200/CCI.20.00081

Greenhalgh J, Gooding K, Gibbons E, Dalkin S, Wright J, Valderas J, et al. How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis. J Patient-Rep Outcomes. 2018;2:42.

https://doi.org/10.1186/s41687-018-0061-6 DOI: https://doi.org/10.1186/s41687-018-0061-6

Skovlund PC, Ravn S, Seibaek L, Thaysen HV, Lomborg K, Nielsen BK. The development of PROmunication: a training-tool for clinicians using patient-reported outcomes to promote patient-centred communication in clinical cancer settings. J Patient Rep Outcomes. 2020;4(1):10.

https://doi.org/10.1186/s41687-020-0174-6 DOI: https://doi.org/10.1186/s41687-020-0174-6

DEFACTUM®. Udvælgelse af inddragelsesspørgsmål til patienter: Validitet, reliabilitet og accept. Aarhus N: Defactum; 2016. Contract No.: 20.03.2023.

Laurberg T, Schougaard LMV, Hjollund NHI, Lomborg KE, Hansen TK, Jensen AL. Randomized controlled study to evaluate the impact of flexible patient-controlled visits in people with type 1 diabetes: the DiabetesFlex Trial. Diabet Med. 2022;39(5):e14791.

https://doi.org/10.1111/dme.14791 DOI: https://doi.org/10.1111/dme.14791

Spencer HE. How to analyze Likert and other rating scale data. Curr Pharm Teach Learn. 2015;7(6):836–50.

https://doi.org/10.1016/j.cptl.2015.08.001 DOI: https://doi.org/10.1016/j.cptl.2015.08.001

Xu RH, Wong EL. Involvement in shared decision-making for patients in public specialist outpatient clinics in Hong Kong. Patient Prefer Adherence. 2017;11:505–12.

https://doi.org/10.2147/PPA.S126316 DOI: https://doi.org/10.2147/PPA.S126316

Mirzaei A, Carter SR, Patanwala AE, Schneider CR. Missing data in surveys: key concepts, approaches, and applications. Res Soc Adm Pharm. 2022;18(2):2308–16.

https://doi.org/10.1016/j.sapharm.2021.03.009 DOI: https://doi.org/10.1016/j.sapharm.2021.03.009

Harrell FE, Jr., Lee KL, Matchar DB, Reichert TA. Regression models for prognostic prediction: advantages, problems, and suggested solutions. Cancer Treat Rep. 1985;69(10):1071–77.

Peduzzi P, Concato J, Kemper E, Holford TR, Feinstein AR. A simulation study of the number of events per variable in logistic regression analysis. J Clin Epidemiol. 1996;49(12):1373–9.

https://doi.org/10.1016/S0895-4356(96)00236-3 DOI: https://doi.org/10.1016/S0895-4356(96)00236-3

StataCorp. Stata 1996–2021 [statistical software for data science] [Internet]. Available from: https://www.stata.com/ [Cited date: May 2nd 2025]

Santana MJ, Haverman L, Absolom K, Takeuchi E, Feeny D, Grootenhuis M, et al. Training clinicians in how to use patient-reported outcome measures in routine clinical practice. Qual Life Res. 2015;24(7):1707–18.

https://doi.org/10.1007/s11136-014-0903-5 DOI: https://doi.org/10.1007/s11136-014-0903-5

Porter I, Gonçalves-Bradley D, Ricci-Cabello I, Gibbons C, Gangannagaripalli J, Fitzpatrick R, et al. Framework and guidance for implementing patient-reported outcomes in clinical practice: evidence, challenges and opportunities. J Comparat Effect Res. 2016;5(5):507–19.

https://doi.org/10.2217/cer-2015-0014 DOI: https://doi.org/10.2217/cer-2015-0014

Skovlund PC, Nielsen BK, Thaysen HV, Schmidt H, Finset A, Hansen KA, et al. The impact of patient involvement in research: a case study of the planning, conduct and dissemination of a clinical, controlled trial. Res Involv Engagem. 2020;6:43.

https://doi.org/10.1186/s40900-020-00214-5 DOI: https://doi.org/10.1186/s40900-020-00214-5

Santana M-J, Feeny D. Framework to assess the effects of using patient-reported outcome measures in chronic care management. Qual Life Res. 2014;23(5):1505–13.

https://doi.org/10.1007/s11136-013-0596-1 DOI: https://doi.org/10.1007/s11136-013-0596-1

Cramer D, Howitt D. The SAGE dictionary of statistics a practical resource for students in the social sciences. London: SAGE; 2004. DOI: https://doi.org/10.4135/9780857020123

Nguyen H, Butow P, Dhillon H, Sundaresan P. A review of the barriers to using patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs) in routine cancer care. J Med Radiat Sci. 2021;68(2):186–95.

https://doi.org/10.1002/jmrs.421 DOI: https://doi.org/10.1002/jmrs.421

Steding-Jessen M, Engberg H, Øster I, Jensen JW, Hölmich LR, Møller H. Regional and socioeconomic variation in survival of melanoma patients in Denmark. Dan Med J. 2019;66(11):A5572.

Additional Files

Published

2025-08-12

How to Cite

Skovlund, P. C., Karkov, D. M., Pedersen, C. G., & Jensen, A. L. (2025). Patient-Reported Outcomes as a Tool for Involvement in Metastatic Melanoma Care. Acta Oncologica, 64, 1053–1060. https://doi.org/10.2340/1651-226X.2025.43465