Engaging patients as partners in cancer care: An innovative strategy to implement screening for distress?

Jacynthe Rivest, Véronique Desbaumes Jodoin, Irène Leboeuf, Nathalie Folch, Joé T. Martineau, Geneviève Beaudet-Hillman, Claudine Tremblay


Patient distress is frequently missed in everyday cancer care, yet can be associated with decreased quality of life and satisfaction with care, as well as increased risk for comorbidity and morbidity. Considered as an aspect of a patient-centred approach, screening for distress is now an international standard of practice and constitutes an accreditation criterion for cancer centers in the USA and Canada. Inspired by existing health partnership models, the Centre Hospitalier de l’Université de Montréal’s (CHUM) Integrative Cancer Care Center recruited patients to act as partners during the creation and implementation of its screening for distress program. Patient partner roles in the program included becoming a member of a specialized psychosocial oncology team, contributing to a healthcare professional training program and helping to select tools to detect distress. This paper describes why and how the CHUM cancer care centre developed an innovative screening for distress program, using a patient partnership approach, to better meet the needs of patients with cancer.

Full Text:



Bernardo, B. M., Zhang, X., Beverly Hery, C. M., Meadows, R. J., & Paskett, E. D. (2019). The efficacy and cost-effectiveness of patient navigation programs across the cancer continuum: A systematic review. Cancer, 125(16), 2747–2761. http://doi.org/10.1002/cncr.32147

Blais, M.-C., St-Hilaire, A., Fillion, L., De Serres, M., & Tremblay, A. (2014). What to do with screening for distress scores? Integrating descriptive data into clinical practice. Palliative and Supportive Care, 12(1), 25–38. http://doi.org/10.1017/S1478951513000059

Bombard, Y., Baker, G. R., Orlando, E., Fancott, C., Bhatia, P., Casalino, S., & Pomey, M. P. (2018). Engaging patients to improve quality of care: A systematic review. Implementation Science : IS, 13(1), 98. http://doi.org/10.1186/s13012-018-0784-z

Bultz, B. D., & Carlson, L. E. (2006). Emotional distress: the sixth vital sign – future directions in cancer care. Psycho-Oncology, 15(2), 93–95. http://doi.org/10.1002/pon.1022

Bultz, B. D., Groff, S. L., Fitch, M. (2011). Implementing screening for distress, the 6th vital sign: A Canadian strategy for changing practice. Psycho-oncology, 20, 463–9. http://doi.org/10.1002/PON.1932.

Bultz, B. D. (2017). Lessons learned from the science of caring: Extending the reach of psychosocial oncology: The International Psycho-Oncology Society 2016 Sutherland Award Lecture. Psycho-Oncology, 26(6), 721–723. http://doi.org/10.1002/pon.4398

Canadian Partnership Against Cancer. (2018, Nov.). The 2018 Cancer System Performance Report. Canadian Partnership Against Cancer.

Carlson, L. E., Angen, M., Cullum, J., Goodey, E., Koopmans, J., Lamont, L., et al. (2004). High levels of untreated distress and fatigue in cancer patients. British Journal of Cancer, 90(12), 2297–2304. http://doi.org/10.1038/sj.bjc.6601887

Carlson, L. E., Waller, A., Groff, S. L., Giese-Davis, J., & Bultz, B. D. (2013). What goes up does not always come down: Patterns of distress, physical and psychosocial morbidity in people with cancer over a one year period. Psycho-Oncology, 22(1), 168–176. http://doi.org/10.1002/pon.2068

Clavel, N., Pomey, M. P., & Ghadiri, D. (2019). Partnering with patients in quality improvement: towards renewed practices for healthcare organization managers? BMC Health Services Research, 19(1), 815. http://doi.org/10.1186/s12913-019-4618-8

Clover, K. A., Mitchell, A. J., Britton, B., & Carter, G. (2015). Why do oncology outpatients who report emotional distress decline help? Psycho-Oncology, 24(7), 812–818. http://doi.org/10.1002/pon.3729

Coyne, I., O’Mathúna, D. P., Gibson, F., Shields, L., & Sheaf, G. (2013). Interventions for promoting participation in shared decision-making for children with cancer. The Cochrane Database of Systematic Reviews, (6), CD008970. http://doi.org/10.1002/14651858.CD008970.pub2

Donovan, K. A., Grassi, L., McGinty, H. L., & Jacobsen, P. B. (2014). Validation of the distress thermometer worldwide: State of the science. Psycho-Oncology, 23, 241–250. http://doi.org/10.1002/pon.3430

Donovan, K. A., Deshields, T.L., Corbett, C., & Riba M.B. (2019). Update on the implementation of NCCN guidelines for distress management by NCCN member institutions. Journal of National Comprehensive Cancer Network, 17(10), 1251–1256. http:// doi/10.6004/jnccn.2019.7358

Ehlers, S. L., Davis, K., Bluethmann, S. M., Quintiliani, L. M., Kendall, J., Ratwani, R. M., … Graves, K. D. (2019). Screening for psychosocial distress among patients with cancer: Implications for clinical practice, healthcare policy, and dissemination to enhance cancer survivorship. Translational behavioral medicine, 9(2), 282–291. doi:10.1093/tbm/iby123

Ercolano, E., Hoffman, E., Tan, H., Pasacreta, N., Lazenby, M., & McCorkle, R. (2018). Managing psychosocial distress: Lessons learned in optimizing screening program implementation. Oncology, 32(10), 488–493.

Ewalds Mulliez, A. P., Pomey, M. P., Bordeleau, J., Desbiens, F., & Pelletier, J. F. (2018). A voice for the patients: Evaluation of the implementation of a strategic organizational committee for patient engagement in mental health. PloS one, 13(10), e0205173. http://doi.org/10.1371/journal.pone.0205173

Expérience globale du cancer (2012). Dépistage de la détresse, le 6e signe vital : guide d’adoption de pratiques exemplaires pour des soins centrés sur la personne.

Fitch, M. I., & McAndrew, A. (2011). A performance measurement tool for cancer patient information and satisfaction. Journal of Cancer Education: the Official Journal of the American Association for Cancer Education, 26(4), 612–618. http://doi.org/10.1007/s13187-011-0260-9

Flora, L., Lebel, P., Dumez, V., Bell, C., Lamoureux, J., St-Laurent, D. (2015). L’expérimentation du Programme partenaires de soins en psychiatrie : le modèle de Montréal, Santé mentale au Québec. XL, no 1, 101-117

Group, C. J. A. (2009). Guide to implementing screening for distress, the 6th vital sign moving towards person-centered care. (C. P. A. C. cancer, Ed.).

Howell, D., Hack, T. F., Green, E., & Fitch, M. (2013). Cancer distress screening data: Translating knowledge into clinical action for a quality response. Palliative and Supportive Care, 12(1), 39–51. http://doi.org/10.1017/S1478951513000382

Howell, D., Keshavarz, H., Broadfield, L., Hack, T., Hamel, M., Harth, T., et al. (2015). A pan Canadian practice guideline for screening, assessment, and management of cancer-related fatigue in adults (Version 2). http://doi.org/10.7939/R33R6N

Howell, D., Bultz, B., Fitch, M., Groff, S., Oncology, A. W., 2012. (n.d.). Ensuring a high quality response to Screening for Distress data. Oncologyex.com.

Karazivan, P., Dumez, V., Flora, L., et al. (2015). The patient-as-partner approach in health care. Academic Medicine, 90(4), 437–441. http://doi.org/10.1097/ACM.0000000000000603

Mitchell, A. J. (2013). Screening for cancer-related distress: When is implementation successful and when is it unsuccessful? Acta Oncologica (Stockholm, Sweden), 52(2), 216–224. http://doi.org/10.3109/0284186X.2012.745949

McCarter, K., Britton, B., Baker, A. L., Halpin, S. A., Beck, A. K., Carter, G., … Wolfenden, L. (2018). Interventions to improve screening and appropriate referral of patients with cancer for psychosocial distress: Systematic review. BMJ open, 8(1), e017959. http://doi.org/10.1136/bmjopen-2017-017959

Pirl, W. F., Fann, J. R., Greer, J. A., Braun, I., Deshields, T., Fulcher, C., et al. (2014). Recommendations for the implementation of distress screening programs in cancer centers: Report from the American Psychosocial Oncology Society (APOS), Association of Oncology Social Work (AOSW), and Oncology Nursing Society (ONS) joint task force. Cancer, 120(19), 2946–2954. http://doi.org/10.1002/cncr.28750

Qmentum, A. A. C. (2016). NORMES Traitement du cancer, 1–141. https://www.comp-ocpm.ca/download.php?id=858

Riba, M. B., Donovan, K. A., Andersen, B., et al. (2019). Distress Management, Version 3.2019, NCCN Clinical Practice Guidelines in Oncology. Journal of the National Comprehensive Cancer Network, 17(10), 1229–1249. http://doi.org/10.6004/jnccn.2019.0048

Rivest, J., Robitaille, M.-A., & Joannette, S. (2017). La détresse des personnes atteintes de cancer : un incontournable dans les soins, Recommandations de Comité ad hoc sur la détection de la détresse du Comité national des cogestionnaires de la Direction générale de cancérologie. Ministère de la Santé et des Services sociaux, Gouvernement du Québec, 1–88.

Savard, J., & Ivers, H. (2019). Screening for clinical insomnia in cancer patients with the Edmonton Symptom Assessment System-Revised: A specific sleep item is needed. Support Care Cancer, 27(10), 3777–83. http://doi.org/10.1007/s00520-019-4662-2.

Watanabe, S. M., Nekolaichuk, C. L., & Beaumont, C. (2012). The Edmonton Symptom Assessment System, a proposed tool for distress screening in cancer patients: Development and refinement. Psycho-oncology, 21(9), 977–85. http://doi.org/10.1002/PON.1996.

Werner, A., Stenner, C., & Schüz, J. (2012). Patient versus clinician symptom reporting: How accurate is the detection of distress in the oncologic after-care? Psycho-Oncology, 21(8), 818–826. http://doi.org/10.1002/pon.1975

Zabora, J., BrintzenhofeSzoc, K., Curbow, B., Hooker, C., & Piantadosi, S. (2001). The prevalence of psychological distress by cancer site. Psycho-Oncology, 10(1), 19–28.

Zebrack, B., Kayser, K., Sundstrom, L., Savas, S. A., Henrickson, C., Acquati, C., & Tamas, R. L. (2015). Psychosocial distress screening implementation in cancer care: An analysis of adherence, responsiveness, and acceptability. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, 33(10), 1165–1170. http://doi.org/10.1200/JCO.2014.57.4020


  • There are currently no refbacks.