Utilisation de cartes de parcours pour comprendre les mesures des résultats rapportés par les patients tout au long de l’expérience du cancer

Jae-Yung Kwon, Melissa Moynihan, Angela C. Wolff, Geraldine Irlbacher, Amanda L. Joseph, Lorraine Wilson, Hilary Horlock, Lillian Hung, Leah K. Lambert, Francis Lau, Richard Sawatzky

Abstract


Objectif : L’objectif de la présente étude qualitative est de montrer que l’utilisation de cartes de parcours établies à partir des résultats rapportés par les patients facilite la communication entre les cliniciens et les patients lorsqu’il est question de bien-être, à toutes les étapes de l’expérience du cancer.

Méthodologie : Des entrevues semi-structurées ont été menées en ligne et par téléphone auprès de 6 personnes âgées de la Colombie-Britannique, au Canada. Elles devaient décrire leur expérience du cancer et l’associer à un score de bien-être en utilisant le questionnaire révisé de l’échelle d’évaluation des symptômes d’Edmonton (revised Edmonton Symptom Assessment Scale ou ESAS-r) tout au long de la trajectoire des soins (pré-diagnostic, diagnostic, traitement, post-traitement).

Résultats : En tout, 6 personnes âgées ayant reçu un traitement oncologique ont participé aux entrevues, et 6 cartes de parcours ont été créées; on y constate une fluctuation du niveau de bien-être pendant l’expérience du cancer.

Conclusion : Les cartes de parcours facilitent la communication entre le patient et le clinicien, permettent d’adapter les interventions et attirent l’attention des cliniciens sur différents signes afin qu’ils comprennent mieux le bien-être des patients tout au long de l’expérience du cancer.

Mots-clés : mesures des résultats rapportés par les patients, cartes de parcours, radiothérapie, soins oncologiques, personnes âgées

DOI:10.5737/23688076344460


Full Text:

PDF

References


Bottomley, A., Reijneveld, J. C., Koller, M., Flechtner, H., Tomaszewski, K. A., Greimel, E., Ganz, P. A., Ringash, J., O’Connor, D., Kluetz, P. G., Tafuri, G., Grønvold, M., Snyder, C., Gotay, C., Fallowfield, D. L., Apostolidis, K., Wilson, R., Stephens, R., Schünemann, H., … van de Poll-Franse, L. (2019). Current state of quality of life and patient-reported outcomes research. European Journal of Cancer, 121, 55–63. https://doi.org/10.1016/j.ejca.2019.08.016

Bradshaw, C., Atkinson, S., & Doody, O. (2017). Employing a qualitative description approach in health care research. Global Qualitative Nursing Research, 4, 2333393617742282. https://doi.org/10.1177/2333393617742282

Chang, V. T., Hwang, S. S., & Feuerman, M. (2000). Validation of the Edmonton Symptom Assessment Scale. Cancer, 88(9), 2164–2171. https://doi.org/10.1002/(sici)1097-0142(20000501)88:9<2164::aid-cncr24>3.0.co;2-5

Chen, A. M., Hsu, S., Felix, C., Garst, J., & Yoshizaki, T. (2018). Effect of psychosocial distress on outcome for head and neck cancer patients undergoing radiation. The Laryngoscope, 128(3), 641–645. https://doi.org/10.1002/lary.26751

Davies, E. L., Bulto, L. N., Walsh, A., Pollock, D., Langton, V. M., Laing, R. E., Graham, A., Arnold-Chamney, M., & Kelly, J. (2023). Reporting and conducting patient journey mapping research in healthcare: A scoping review. Journal of Advanced Nursing, 79(1), 83–100. https://doi.org/10.1111/jan.15479

Diener, E. (1984). Subjective well-being (SSRN Scholarly Paper ID 2162125). Social Science Research Network. https://papers.ssrn.com/abstract=2162125

Dinesh, A. A., Helena Pagani Soares Pinto, S., Brunckhorst, O., Dasgupta, P., & Ahmed, K. (2021). Anxiety, depression and urological cancer outcomes: A systematic review. Urologic Oncology: Seminars and Original Investigations. https://doi.org/10.1016/j.urolonc.2021.08.003

Ferlay, J., Colombet, M., Soerjomataram, I., Parkin, D. M., Piñeros, M., Znaor, A., & Bray, F. (2021). Cancer statistics for the year 2020: An overview. International Journal of Cancer. https://doi.org/10.1002/ijc.33588

Gagliardi, A. R., Berta, W., Kothari, A., Boyko, J., & Urquhart, R. (2016). Integrated knowledge translation (IKT) in health care: A scoping review. Implementation Science, 11(1), 38. https://doi.org/10.1186/s13012-016-0399-1

Gibbons, S. (2018). Journey Mapping 101. Nielsen Norman Group. https://www.nngroup.com/articles/journey-mapping-101/

Graupner, C., Kimman, M. L., Mul, S., Slok, A. H. M., Claessens, D., Kleijnen, J., Dirksen, C. D., & Breukink, S. O. (2021). Patient outcomes, patient experiences and process indicators associated with the routine use of patient-reported outcome measures (PROMs) in cancer care: A systematic review. Supportive Care in Cancer, 29(2), 573–593. https://doi.org/10.1007/s00520-020-05695-4

Gray, D., Brown, S., & Macanufo, J. (2010). Gamestorming: A playbook for innovators, rulebreakers, and changemakers. O’Reilly. https://www.amazon.com/gp/product/0596804172/ref=as_li_qf_sp_asin_il_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=

&linkCode=as2&tag=gamestormingc-20

Greenhalgh, J., & Meadows, K. (1999). The effectiveness of the use of patient-based measures of health in routine practice in improving the process and outcomes of patient care: A literature review. Journal of Evaluation in Clinical Practice, 5(4), 401–416. https://doi.org/10.1046/j.1365-2753.1999.00209.x

Joseph, A., Monkman, H., MacDonald, L., & Kushniruk, A. (2022). Contextualizing online laboratory (lab) results and mapping the patient journey. Studies in Health Technology and Informatics, 295, 175–178. https://doi.org/10.3233/SHTI220690

Kwon, J.-Y., Moynihan, M., Lau, F., Wolff, A. C., Torrejon, M.-J., Irlbacher, G., Hung, L., Lambert, L., & Sawatzky, R. (2023). Seeing the person before the numbers: Personas for understanding patients’ life stories when using patient-reported outcome measures in practice settings. International Journal of Medical Informatics, 172, 105016. https://doi.org/10.1016/j.ijmedinf.2023.105016

Kwon, J.-Y., Phillips, C., & Currie, L. M. (2014). Appreciating the Persona paradox: Lessons from participatory design sessions with HIV+ gay men. Studies in Health Technology and Informatics, 201, 133–139.

Lavallee, D. C., Chenok, K. E., Love, R. M., Petersen, C., Holve, E., Segal, C. D., & Franklin, P. D. (2016). Incorporating patient-reported outcomes into health care to engage patients and enhance care. Health Affairs (Project Hope), 35(4), 575–582. https://doi.org/10.1377/hlthaff.2015.1362

Maddox, K., Baggetta, D., Herout, J., & Ruark, K. (2019). Lessons learned from journey mapping in health care. Proceedings of the International Symposium on Human Factors and Ergonomics in Health Care, 8(1), 105–109. https://doi.org/10.1177/2327857919081024

Mausbach, B. T., Decastro, G., Schwab, R. B., Tiamson-Kassab, M., & Irwin, S. A. (2020). Healthcare use and costs in adult cancer patients with anxiety and depression. Depression and Anxiety, 37(9), 908–915. https://doi.org/10.1002/da.23059

McCarthy, S., O’Raghallaigh, P., Woodworth, S., Lim, Y. L., Kenny, L. C., & Adam, F. (2016). An integrated patient journey mapping tool for embedding quality in healthcare service reform. Journal of Decision Systems, 25(sup1), 354–368. https://doi.org/10.1080/12460125.2016.1187394

Mols, F., Husson, O., Roukema, J.-A., & Poll-Franse, L. V. (2013). Depressive symptoms are a risk factor for all-cause mortality: Results from a prospective population-based study among 3,080 cancer survivors from the PROFILES registry. Journal of Cancer Survivorship, 7(3), 484–492. https://doi.org/10.1007/s11764-013-0286-6

Niedzwiedz, C. L., Knifton, L., Robb, K. A., Katikireddi, S. V., & Smith, D. J. (2019). Depression and anxiety among people living with and beyond cancer: A growing clinical and research priority. BMC Cancer, 19(1), 943. https://doi.org/10.1186/s12885-019-6181-4

Philpot, L. M., Khokhar, B. A., DeZutter, M. A., Loftus, C. G., Stehr, H. I., Ramar, P., Madson, L. P., & Ebbert, J. O. (2019). Creation of a patient-centered journey map to improve the patient experience: A mixed methods approach. Mayo Clinic Proceedings: Innovations, Quality & Outcomes, 3(4), 466–475. https://doi.org/10.1016/j.mayocpiqo.2019.07.004

Pilleron, S., Sarfati, D., Janssen-Heijnen, M., Vignat, J., Ferlay, J., Bray, F., & Soerjomataram, I. (2019). Global cancer incidence in older adults, 2012 and 2035: A population-based study. International Journal of Cancer, 144(1), 49–58. https://doi.org/10.1002/ijc.31664

Rutherford, C., Müller, F., Faiz, N., King, M. T., & White, K. (2020). Patient-reported outcomes and experiences from the perspective of colorectal cancer survivors: Meta-synthesis of qualitative studies. Journal of Patient-Reported Outcomes, 4(1), 27. https://doi.org/10.1186/s41687-020-00195-9

Selby, D., Cascella, A., Gardiner, K., Do, R., Moravan, V., Myers, J., & Chow, E. (2010). A single set of numerical cutpoints to define moderate and severe symptoms for the Edmonton Symptom Assessment System. Journal of Pain and Symptom Management, 39(2), 241–249. https://doi.org/10.1016/j.jpainsymman.2009.06.010

Sibeoni, J., Picard, C., Orri, M., Labey, M., Bousquet, G., Verneuil, L., & Revah-Levy, A. (2018). Patients’ quality of life during active cancer treatment: A qualitative study. BMC Cancer, 18(1), 951. https://doi.org/10.1186/s12885-018-4868-6

Siegel, R. L., Miller, K. D., Fuchs, H. E., & Jemal, A. (2022). Cancer statistics, 2022. CA: A Cancer Journal for Clinicians, 72(1), 7–33. https://doi.org/10.3322/caac.21708

Skovlund, P. C., Ravn, S., Seibaek, L., Thaysen, H. V., Lomborg, K., & Nielsen, B. K. (2020). The development of PROmunication: A training-tool for clinicians using patient-reported outcomes to promote patient-centred communication in clinical cancer settings. Journal of Patient-Reported Outcomes, 4(1), 10. https://doi.org/10.1186/s41687-020-0174-6

Sung, H., Ferlay, J., Siegel, R. L., Laversanne, M., Soerjomataram, I., Jemal, A., & Bray, F. (2021). Global cancer statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA: A Cancer Journal for Clinicians, 71(3), 209–249. https://doi.org/10.3322/caac.21660

Yang, L. Y., Manhas, D. S., Howard, A. F., & Olson, R. A. (2018). Patient-reported outcome use in oncology: A systematic review of the impact on patient-clinician communication. Supportive Care in Cancer, 26(1), 41–60. https://doi.org/10.1007/s00520-017-3865-7


Refbacks

  • There are currently no refbacks.