In a nutshell: «How to support oneself and others in the self-management of cancer?» is one of the key questions during cancer survivorship. This is also the focus of the participatory COSS study for women with breast cancer, which is hereafter described by guest author Karin Ribi.
Self-management of cancer
In Switzerland, 5’700 women are diagnosed with breast cancer every year. In 2015, about 76’500 women were survivors of breast cancer, which is 45% of all cancer survivors (Herrmann et al. 2013). Concerns of women with breast cancer after the completion of primary treatment include worries about cancer recurrence, ongoing health status monitoring, symptom or stress management, and change in life style. How can women who face a life-threatening disease learn to deal with their illness and improve their life quality? How can breast cancer survivors ameliorate their physical and emotional health?
Self-management in chronic illness has been a topic in previous posts in the Careum Blog. In cancer survivorship, this concept refers to “….the awareness and active participation of the survivor in their recovery and rehabilitation to minimize the consequences of the diagnosis and its treatment, and promote health and well-being health.” Find out more.
Self-management programs have successfully been introduced for chronic diseases. A prominent example is the Chronic Disease Self-Management Program (CDSMP) developed by the Stanford Patient Education Research Centre. The CDSMP has been translated and adapted for the German- and French-speaking Swiss populations as Evivo.
For cancer patients the CDSMP has been adapted to better address the specific problems when facing a life-threatening disease. The Cancer Thriving and Surviving Program (CTS) includes topics similar to other chronic diseases like decision-making and healthy eating, but also modifications specific to:
- Cancer symptom management (i. e. pain, fatigue)
- Prioritizing and asking for help
- Living with uncertainty
- Cancer and changes to body
- Cancer and relationships
Studies have shown that by completing such a program patients benefit in the areas of emotional support, coping, self-efficacy (the confidence in one’s ability to successfully engage in or perform a specific behavior or task), decision-making and/or health literacy, in particular when peers are included.
What is a peer-led approach?
Individuals with a personal experience living with a chronic condition act as role models and are trained using a structured manual on how to lead workshops. For our study breast cancer survivors will act as role models with the support of trained breast care nurses working at the breast centers.
What is the COSS study? Why Co-Creation?
COSS stands for «CO-creating and testing the effectiveness of an integrated peer-to-peer Self-management program for breast cancer Survivors.» In Switzerland, such a co-creation of novel interventions with patients as co-leaders of projects is not established yet. An innovative element of the COSS study is patient engagement: A woman with breast cancer being a co-investigator of the project. Co-creation also implies partnership and shared leadership between healthcare professionals. If feasible and effective, we aim at implementing this program in patient pathways of ten Swiss breast centers to evaluate its effectiveness.
Why is this study important?
Cancer incidence and prevalence is increasing and so are the psychosocial care needs of patients and their families. Patients with cancer and their significant others need to be enabled to take an active part in decision-making processes and to learn behaviors and skills that support them dealing with their illness and improving their quality of life.
Patient engagement has gained importance in cancer research and treatment internationally. The Swiss Federal Council’s health priorities Health2020 emphasizes the need to improve access to care and empower patient.
The national strategy against cancer also defined the necessity to foster patient expertise and has launched the project “Self-efficacy”. It aims to develop evidence-based programs and services to improve self-management in cancer patients and their relatives. The COSS study has been nominated by the project group as a reference project in the National Cancer Strategy to attain this aim.
Your feedback and thoughts? Let’s discuss!
- How can self-management programs improve physical and emotional health of breast cancer survivors?
- What are the advantages and disadvantages of peer-to peer support in breast cancer?
- Which steps are necessary to integrate such an approach into patient’s pathways of health care in Swiss Breast Centers?
The author gratefully acknowledges the feedback and input from the COSS-co-investigators Manuela Eicher, Karin Holm, Corinne Urech and Jörg Haslbeck in preparing this post.
The COSS study is funded by Swiss Cancer Research (ID: KFS-3823-02-2016).