June Wilson, PhD, RN
There are three words we one can live without ever hearing, both for our loved ones and ourselves. Those three words: You have cancer. These unwanted words invaded our home this spring when my spouse was diagnosed with aggressive breast cancer. Apparently the cancer was so aggressive that it grew to 4 cm and spread within a year of her last mammogram.
As was reinforced to us time and again, each case of breast cancer is different. Treatment options vary depending upon individual diagnosis. We were instructed to avoid online discussions because of this individuality. Treatment options that are best for one person might not be best for another.
While we were advised to stay away from social media, we were a part of the decision-making surrounding treatment. Being part of this decision-making did involve knowing the options, pros and cons of each option, and making a conscious decision based on data. As one doctor stated, “you are smart and will understand the data.”
Patient-centered care has become a hallmark of medicine. Committee on Quality Health Care in America, The Institute of Medicine (IOM) (2001, p. 40) defines patient-centered care as: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.”
Patient-centered care is a complex process that is aimed at addressing the needs and care of individual patients. It involves patient engagement and partnership in patient care and decision-making. Patients are educated and provided with options regarding such treatments as the pros and cons of differing chemotherapy, surgical options, and radiation. Many decisions must be made. For example, should one take the most aggressive chemotherapy that may be more effective, yet has a risk of causing cardiomyopathy and other future cancers? Should one have a double mastectomy to try to prevent a recurrence of cancer, or does one have an equal chance of diminishing the risk of recurrence through a lumpectomy and radiation? These questions can cause severe insomnia.
While health-care decision-making can be anxiety provoking, evidence suggests that shared-decision making facilitates positive health outcomes, empowering the patients (Rico et al., 2017; Stacey, 2011) for better self-management (Wildevuur & Simonse, 2015). In order to make these decisions, however, it is imperative that we work with valid and reliable data.
Decision aids are meant to help inform patients and family members of potential risks and benefits of individual tests and treatment options. Those who do not use decision aids may have care that may not align with their values or desires (Lee & Emanuel, 2013).
Stacey et al. (2011) reviewed 86 studies that compared those who received standard care with those who received decision aids to help understand treatment options. Decision aids included such resources as pamphlets, videos or web-based tools that described options to allow the patients to make an informed decision. Results suggested that those who used decision aids had an increased understanding of the risk perception, increased knowledge, decreased internal conflict about their decisions, and received care congruent with their values (Lee & Emmanuel, 2013).
Thus, using decision aids prior to treatment appears to be an effective tool. Other effective tools include messaging through Apps (Rico et al., 2017). In one pilot study, women undergoing chemotherapy for breast cancer were sent a daily text message that provided information on self-care and emotional support while in treatment. Women reported an increased sense of confidence in making decisions and emotional support during treatment (Rico et al., 2017).
A variety of mobile applications (Apps) are available for women undergoing breast cancer treatment. Some Apps specifically address breast cancer risk assessment, remind the user to conduct her monthly breast exams, help organize pills, and provide social support, while others are broader in their content. The National Breast Cancer Foundation (2011) has developed an App called Breast Cancer: Beyond the Shock. This mobile App helps educate the user through the use of short informative videos on an extensive list of topics, including standard treatment, radiation therapy, and hormone therapy. The App includes three main sections: learn, ask, and hear. Anecdotally, some users have stated the content of the App made them feel empowered and better prepared to fight breast cancer. Other users have appreciated the stories of survival which “lifted” them up. While these Apps appear to provide useful information, there is a paucity of research on their effectiveness.
Shared decision-making is a hallmark of healthcare in the 21st century. Receiving valid information after a breast cancer diagnosis is crucial to making shared decisions regarding medical treatment. While there appears to be evidence supporting decision aids (Lee & Emanuel, 2013; Stacey et al., 2013), there is a paucity of research on the effectiveness of new technologies.
Media psychology is in a good position to work with other divisions such as health psychology in both the development and evaluation of technologically advanced decision aids. Globally, new mobile Apps are in development with the hope of promoting self-efficacy, social support and symptom management in women undergoing chemotherapy (Zhu, Ebert, Xue, Shen & Chan, 2017). This is an area of growth with an exciting future.
Committee on Quality Health Care in America, Institute of Medicine. (2001). Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academy Press.
Rico, T.M., dos Santos, M. K., Fernandes, V.P. Madruga, S.W., Noguez, P.T., Barcelos, C.R.,… Dumith, S.C. (2017). Text messaging (SMS) helping cancer care in patients undergoing chemotherapy treatment: A pilot study. Journal of Medical Systems 41. doi.org/10.1007/s10916-017-0831-3
Stacey, D., Bennett, C.L., Barry, M.J., Col, N.F., Eden, K.B. Holmes-Rovner, M.,…Thomson, R. (2011). Decision aids for people facing health treatment or screening decisions. Cochrane Databases System Review, 10. doi: 10.1002/14651858.CD001431.pub3.