PAROLE-Onco
- ALL.CAN CANADA
- Oct 24, 2024
- 7 min read
Updated: Mar 14
THEMES:
• Accompanying patients (peer navigation)
• Peer support
• Improved patient experience
• Improved patient-provider communication
• Integrated clinical teams • Psychosocial support
• Patient information & education • Health equity
SUMMARY
Cancer is the leading cause of death in Canada1 with Quebec having some of the highest incidence and prevalence rates in the country.2
1 in 2 of Canadians will be diagnosed with cancer during their lifetime, with cancer incidence projected to increase 83% until 2042.3
With the support of Canadian Institutes of Health Research and Quebec’s cancer directorate within the Ministry of Health and Social Services, the PAROLE-Onco was implemented in 2019 in four healthcare organizations (HCOs) across Quebec to improve the experience of cancer patients through the integration of accompanying patients (APs) into clinical oncology teams.4
"From the initial shock of the news (diagnostic), my accompanying patient proved to be essential support. His (the AP) regular telephone contact, weekly or at key moments, was particularly soothing. His telephone support was very effective, instantly dissipating stress, and his kind words were comforting.
- Accompanied patient
PAROLE-Onco currently has eight HCOs and is recognized as a novel and complementary cancer care model that offers cancer patients:
Comprehensive emotional, informational, and educational support
Navigation support throughout the care journey, including the diagnosis phase5
Individualized interventions to support patients and their caregivers
Assistance in clarifying medical information Facilitation of effective communication between patients and clinical professionals6
By integrating APs into the clinical teams, the model ensures that patients have continuous support from diagnosis through treatment and beyond, helping to alleviate the stress and anxiety associated with cancer care; but also to better understand the disease, the treatments and their side effects, as well as the activities that can help reduce these effects.
CHALLENGE
Half of Canadians can expect cancer diagnosis during their lifetime.7
In 2022, an estimated 60,000 Quebecers were diagnosed with cancer, averaging 158 new cases daily.8
This trend has been increasing and is expected to continue due to testing delays and backlogs from the pandemic.9 Along with an abrupt increase in cancer care costs of the significant challenges identified is the lack of emotional support for cancer patients, a need that has intensified during the pandemic.10 Socio-economic disparities require adequate resource allocation, patient advocacy and stakeholder engagement.11
Patients experience substantial emotional distress, including depression, anxiety, and feelings of hopelessness, yet there is a lack of structured emotional support within the healthcare system. Oncology nurses, who often play a crucial role in providing emotional care, report being overwhelmed and underprepared to address these needs effectively due to limited training and time constraints.12 Moreover, not all patients have access to these nurses, the fragmented nature of current support services often leads to inconsistent care experiences, further exacerbating the emotional burden on patients. Without addressing the lack of comprehensive services, early cancer diagnosis initiatives are unlikely to achieve their intended impact. Enhancing patient empowerment and advocacy is crucial for achieving healthcare equity, particularly for women and other vulnerable populations who face significant challenges navigating the healthcare system and managing the burdens associated with a cancer diagnosis or genetic predisposition. Effective advocacy efforts and policies are essential to provide the necessary resources and assistance, ensuring that all patients receive equitable care and support throughout their healthcare journey.12
SOLUTION
Targeted interventions and resource allocation are viable solutions to supporting all patients having equitable access to early diagnosis services, which will improve overall cancer outcomes and reduce mortality rates.10 In particular, streamlining these processes to ensure that they are inclusive and accessible to all patients is crucial for addressing disparities in care.
The PAROLE-Onco program supports individuals diagnosed with cancer by connecting them with an accompanying patient (AP) who has undergone a similar experience. 6
ACHIEVEMENTS
Multiple studies demonstrated the efficiency and efficacy of the APs on the patients, their families, the oncology teams and the overall cancer care system as a service provider that often lacks the necessary resources to successfully address the patients’ needs.4,5,6,16,17
The most important achievements of this intervention are:
Practical advice
Patient empowerment
Improved quality of life
Improved quality and safety of care
Patient provider communication
Reduced health inequities 16
Recent studies highlight that APs enhance patients' sense of empowerment and self-efficacy, and reduce psychological distress, contributing to a more positive cancer care experience. 20, 21 APs play a significant role in helping patients understand medical information, manage their emotions, and feel more in control of their care journey. Additionally, it was found that multiple encounters with APs, as opposed to a single meeting, significantly improve the patients' understanding and emotional well-being. Similarly, APs facilitate better communication between patients and healthcare providers, and help patients articulate their concerns and needs more effectively, which is crucial for improving patient satisfaction and outcomes.21
APs were particularly beneficial for patients from disadvantaged socio-economic backgrounds who often struggle more with communicating with healthcare professionals, navigating their care pathway, accessing comprehensible information about their health issues, and expressing their needs during consultations.17,18 However, these patients don't always recognize their needs and do not ask for additional help.
It should be noted that some patients reported difficulties in accessing APs due to a lack of awareness and systematic integration into the care process while others were not aware of the services APs could offer.
While legal concerns were identified in relation to the professional status of the APs who are not bound by the deontological code applicable to the medical professionals and in some clinical sites, APs are not allowed to participate in clinical team discussions without the express prior authorization of the patients, but they can exchange information with healthcare professionals that can help professionals better meet patients' needs.
Overall, PAROLE-Onco represents a significant and innovative approach to improving the patient experience and the effectiveness of clinical teams. List of key themes/From a clinical perspective, the implementation of PAROLE-Onco emphasized the importance of care
environments where patients feel safe expressing their needs and concerns. This underscores the value of implementing tailored support in case study interventions that address the specific needs of cancer patients, ultimately contributing to improved patient experiences and outcomes in the clinical setting.
"I find it positive for patients to be with other people who have had cancer from which they have recovered, that there is long‐term healing that exists. I find it encourages them to continue."
- Accompanied patient
NEXT STEPS
Moving forward, it is essential to delve deeper into the impact of the PAROLE-Onco program and explore strategies to seamlessly integrate APs into clinical teams. Future efforts should focus on securing an adequate selection, high-quality training of APs, and implementing communication campaigns within healthcare institutions to inform patients about the PAROLE-Onco program.22 The program should be systematically offered to all patients throughout their care pathway, providing a personalized approach to cancer navigation that promotes direct communication between patients and accompanying patients to enhance the patient experience and the professional quality of practice.
The program is currently being rolled out in Belgium and France, and will soon be implemented in Switzerland and Sweden.
Sources:
1 Yao, C., & Billette, J.-M. (2022). Short-term cancer prevalence in Canada, 2018. Statistics Canada. https://doi.org/10.25318/82-003-x202200300002-eng
2 Thouez, J., Emard, J.-F., Beaupré, M., Latreille, J., & Ghadirian, P. (1997). Analyse
espace/temps de l’incidence de certains sièges de cancer au Québec: 1984–1986 et 1989–1991. Canadian Journal of Public Health, 88(1), 20-25. https://doi.org/10.1007/BF03403859
3 Poirier, A. E., Ruan, Y., Walter, S. D., Franco, E. L., Villeneuve, P. J., King, W. D., Volesky, K. D., O’Sullivan, D. E., Friedenreich, C. M., & Brenner, D. R. (2019). The future burden of cancer in Canada: Long-term cancer incidence projections 2013-2042. Cancer Epidemiology, 59, 199-207. https://doi.org/10.1016/j.canep.2019.02.011
4 Pomey, M.-P., de Guise, M., Desforges, M., et al. (2021). The patient advisor, an organizational resource as a lever for an enhanced oncology patient experience
(PAROLE-onco): A longitudinal multiple case study protocol. BMC Health Services Research, 21(10). https://doi.org/10.1186/s12913-020-06009-4
5 Pomey, M.-P., Paquette, J., Iliescu-Nelea, M., Vialaron, C., Mourad, R., Bouchard, K., ... & de Guise, A. M. (2023). Accompanying patients in clinical oncology teams: Reported activities and perceived effects. Health Expectations. https://doi.org/10.1111/hex.13710
6 Pomey, M.-P., Nelea, M. I., Vialaron, C., Normandin, L., Côté, M.-A., Desforges, M., ... de Guise, M. (2024). The black box of the relationship between breast cancer patients and KEaccompanying patients: The accompanied patients’ point of view. BMC Cancer, 24(822).Y THEMES https://doi.org/10.1186/s12885-024-12585-z
7 Collier, R. (2017). Half of Canadians can expect cancer diagnosis during lifetime. Canadian Medical Association Journal, 189(27), E920. https://doi.org/10.1503/cmaj.1095447
8 Brenner, D., Weir, H., Demers, A., Ellison, L., Louzado, C., Shaw, A., Turner, D., Woods, R., & Smith, L. M. (2020). Projected estimates of cancer in Canada in 2020. Canadian Medical Association Journal, 192(9), E199-E205. https://doi.org/10.1503/cmaj.191292
9 Ruan, Y., Poirier, A., Yong, J., Garner, R., Sun, Z., Than, J., & Brenner, D. (2023). Long-term projections of cancer incidence and mortality in Canada: The OncoSim All Cancers Model. Preventive Medicine, 165, 107425. https://doi.org/10.1016/j.ypmed.2023.107425
10 Fahim, C., Davenport Huyer, L., Lee, T., Prashad, A., Leonard, R., Khare, S., Stiff, J., Chadder, J., & Straus, S. (2021). Implementing and Sustaining Early Cancer Diagnosis Initiatives in Canada: An Exploratory Qualitative Study. Current Oncology, 28(6), 369. https://doi.org/10.3390/curroncol28060369
11 Canadian Cancer Society. (2021). Canadian Cancer Society 2020-21 Impact Report. Retrieved from https://www.cancer.ca/en/about-us/annual-reports/
12 Jeyathevan, G., et al. (2017). The role of oncology nurse navigators in enhancing patient empowerment within the diagnostic phase for adult patients with lung cancer. Canadian Oncology Nursing Journal, 27(2).
13 D'Souza, M., Fehr, F., Smith, M. L., & Marshall, M. C. (2023). Mediators of psychosocial well-being for immigrant women living with breast cancer in Canada: A critical ethnography. Oncology Research and Treatment, 46(9), 599-607.
14 Shankland, M., Ferrand, A., Ganache, I., Côté, M.-A., & Pomey, M.-P. (2023). Ethical foundations of the accompanying patient’s role for an enhanced patient experience: A scoping review. Journal of Personalized Medicine, 13(1), 77.
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19 Boutrouille, L., Régis, C., & Pomey, M.-P. (2021). Enjeux juridiques propres au modèle émergent des patients accompagnateurs dans les milieux de soins au Québec. Revue juridique Thémis de l'Université de Montréal, 55(1), 47-137.
20 Pomey, MP., Nelea, M.I., Normandin, L. et al. An exploratory cross-sectional study of the effects of ongoing relationships with accompanying patients on cancer care experience, self-efficacy, and psychological distress. BMC Cancer 23, 369 (2023).
21 Pomey MP, Paquette J, Nelea MI, Vialaron C, Mourad R, Bouchard K, et al. Integrating accompanying patients into clinical oncology teams: limiting and facilitating factors. BMC Health Serv Res. 30 janv 2024;24(1):150.
22 PAROLE-Onco phase 1 | (openum.ca)
