Self-management support for women with breast cancer

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.

Self-management skills that are trained with these programs are:
  • Recognizing and solving problems
  • Making decisions
  • Using resources
  • Building relationships
  • Planning behaviors and putting them into action
The process of adoption of self-management behaviours
The process of adoption of self-management behaviours, Source: Taylor et al. (2014), p. 7.

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
  • Sleep
  • 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.

Cancer Thriving and Surviving
Want to find out more?

Risendahl et al. describe the process of the CTS adaption (abstract) and have published findings from a feasibility study on the CTS.

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.

Zettel Workshop
Picture: Pixabay/Gerd Altmann

 

The COSS Study

Step 1 aims at developing a peer-support program for breast cancer survivors in Switzerland during early follow-up phase and to define its integration into existing patient pathways of breast centers.

We will use the existing Cancer Thriving and Surviving and Evivo programs as basis for the development of the new program with following steps:

  1. Review and adapt the existing material of the Cancer Thriving and Surviving and Evivo program for women with breast cancer.
  2. Develop the adapted breast cancer specific program in three workshops.
    1st Workshop: Information on existing program.
    2nd Workshop: Discussion on the material that needs to be adapted.
    3rd Workshop: Presentation and validation of adapted program.
    The Workshops will be held with nine health care professionals (oncologists, gynecologists, breast cancer nurses, psycho-oncologists) and three breast cancer survivors (total 12 participants).
  3. Validate the results of the adaptation by a consensus conferences with the participation of breast cancer survivors and international experts.
  4. Design and layout of the final program material.
  5. Training of the trainers (breast cancer survivors) for the pilot testing of the adapted program.
  6. Conduct of a pilot study to evaluate feasibility to conduct the program at two breast cancer centers in the German-speaking part of Switzerland with sixteen women with breast cancer as participants.

This structured process follows the appropriateness of measures model. (read more)

Step 2 aims to investigate the effectiveness of this program on health-related outcomes including self-efficacy for managing breast cancer, self-management skills and capacity, symptom burden, health literacy, health system navigation. Step 2 will be based on the results of the pilot study which is part of Step 1.

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?

Acknowledgements

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).

Karin Ribi

Karin Ribi, PhD, MPH. As Head of the Quality of Life Office of the International Breast Cancer Study Group my expertise is in developing, conducting and evaluating studies focusing on the patients’ perspective (i.e. quality of life, psychosocial aspects) within clinical breast cancer trials.

2 thoughts on “Self-management support for women with breast cancer

  • 2016-10-13 at 12:45
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    Dear Karin

    This sounds like a very interesting research study. In the research we are conducting, we can actually conclude, that participants with cancer seems to benifit more from the workshop than the average participant, regarding the cognitive technics.

    This makes perfectly good sense, also when I read your blog. The emotional challenges, that you face as a cancer survivor, are immense. And self-management tools like the cognitive ones are quite effective.

    In Denmark we are almost ready to commence a large scale study on self-management support to cancer survivors.

    It will be interesting to follow your study.

    Reply
  • 2016-10-17 at 12:18
    Permalink

    Dear Nicolaj,

    Thank you very much for your comment. It is encouraging to hear that participants with cancer are those who benefit most from cognitive techniques in self-management support workshops. It is a valuable information for our adaptation of a self-management program to the specific need of patients with breast cancer. Would you be willing to share some more details on your experience regarding the specific techniques that were of benefit for cancer patients?

    Reply

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