By: Mari Hoffman, Genetics and Genomics 2021 

Author’s Note: In this paper, I will be discussing reviews on patient activation level and health outcomes in chronic diseases. I wanted to analyze the effect patients can have on their own treatment plans and discuss how they can make a difference. I feel personally connected to this topic because my dad was diagnosed with chronic lymphocytic leukemia and has been a role model for me in his journey of his treatment plan.  

Patient involvement and education in their diagnosis is not a novel idea, but has been shown to play a role in overall patient experience [1, 2]. Chronic illnesses create responsibilities and demands on patients to manage and understand their care and diagnosis. It has been shown that chronic disease patients who take on a bigger role and engagement level with their own health have more positive outcomes [3]. Patient engagement or patient activation can be defined as “the individual’s knowledge, skill, and confidence for managing their own health” [3].

Patients who are more involved in their diagnosis and treatment have been shown to have more positive outcomes. One study used survey data from cancer patients and assessed how patient activation level affected actions taken on by the patient, communication with the doctor, and overall satisfaction with their care and treatment [3]. The study used survey data that was collected by CancerCare who sent out six different online surveys to cancer patients in order to test their patient activation measure [3]. The survey was sent out to a sample that consisted of those who were 25 years or older and had received a cancer diagnosis [3]. The study population varied in different characteristics and after controlling for demographics and health status factors, the study found that patients who scored higher in their activation level were 4.7 times more likely to start exercise and 3.3 times more likely to start a healthier diet when compared to patients who scored less in their activation level [3]. The study also found that less activated patients had a lower score in following their doctor’s recommendations, discussing side effects with their doctor, and in their overall satisfaction of their care received [3]. As discussed above, patients who scored higher on their activation level are more likely to be better informed on their treatment options and have greater proactivity in managing their condition [3].

There are a wide range of different factors that have been found to affect a patient’s interest in participating in their health care decision-making. These factors are related to demographic, personal characteristics, ability to put time in, stage and severity of disease, and the influence from the practitioner [4]. There are many reasons not stated above why one may or may not involve themself in their own treatment decisions and plans. 

Information about one’s diagnosis and care treatment is one of the ways in which a patient can educate themself. This information enables people to understand and exchange with their healthcare provider on consequential decisions [4]. Education of the disease has been shown to increase the patient’s willingness to ask questions because they are more confident in their understanding and therefore participate in a more active role in their treatment plan [4]. Decreasing the gap in education on their diagnosis also leads patients to better understand their own personal requirements with regard to their treatment and personalized treatment in terms of exercise and diet, and trust in their doctor to take their recommendations [4]. 

Patient education and proactiveness can even lead to a patient becoming a driver in their own diagnosis. In January of 2016, my dad was diagnosed with chronic lymphocytic leukemia by a general hematologist and was put on a “watch and wait” approach. This approach essentially means that a patient’s condition is monitored without receiving any treatment until there is a change in symptoms [5]. This made sense for my dad since his cancer was slow moving and he did not have many symptoms. Around six months later, the hematologist said he needed to be treated with fludarabine, cyclophosphamide, and rituximab (FCR), which is a Cytotoxic Chemotherapy. The doctor gave no real explanation for why he had to be treated at that time and regarding FCR, he simply said “it’s the gold standard.” At this time, my dad had started to get connected with CLL support groups such as the CLL Society and decided to get a second opinion. Through the process of educating himself and receiving a second opinion, he realized there were many negative side effects that came with FCR that his doctor did not inform him about, and he would need his genetics tested to even see if he was compatible with the treatment. When he brought up his genetics to the doctor, the doctor responded saying he thought they already did that. My dad left the appointment feeling shocked and realizing he needed to be informed and educated on his treatment options if he wanted the best possible treatment. After doing genetic testing, he found over 50% of his cells were 17P deleted and he also had Trisomy 12. This meant his genetics would not be compatible with the treatment plan. It was becoming apparent to my dad that new non-cytotoxic treatments were superior for most CLL patients. He decided to take the initiative to continue to “watch and wait” and explore other options. 

After a couple of months, his symptoms started to progress and he got an appointment with a doctor at University of California, San Diego (UCSD) who told him that there was a clinical trial happening that could be a potential treatment option for his disease. Through his own research and the resources he found through the CLL Society website, support groups, and UCSD, he decided this was the right treatment for him. It was good that he chose to wait rather than take the initial treatment offered; if he chose the latter, he would have not qualified for the trial. He has been on the clinical trial with Venetoclax and Ibrutinib for about two years now and has shown normal numbers in terms of his white blood count, which is used to measure the presence of CLL. Through the resources provided to him, he was able to gain knowledge and connections with experts in the field to feel confident in his decision to find a treatment plan that worked for him. My dad is now very involved with the CLL Society and founded a local CLL support group in San Diego where they meet to discuss their experiences and bring in health professionals to lead discussions. 

My dad’s personal story and the data shown above shows how imperative it is to do research and educate yourself on your own condition. It is critical to get your main information and opinions from your doctor, and to always consider a second opinion. Evidently, educating yourself on your own health and treatment plans can have beneficial effects overall, but it is critical to remember that doctors and health care professionals are trained in their field. It is very important to use your education and resources to find a specialist in your disease and start a conversation with them. Although you may not have all the resources in the beginning, the best advocate for your health and future is yourself. Use all the resources you can to continue to be informed and in touch with the professionals in the study of your disease. 

References: 

1. Thompson, Andrew G.h. “The Meaning of Patient Involvement and Participation in Health Care Consultations: A Taxonomy.” Social Science & Medicine, vol. 64, no. 6, 2007, pp. 1297–1310., doi:10.1016/j.socscimed.2006.11.002.
2. Hibbard, Judith H., and Jessica Greene. “What The Evidence Shows About Patient Activation: Better Health Outcomes And Care Experiences; Fewer Data On Costs.” Health Affairs, vol. 32, no. 2, 2013, pp. 207–214., doi:10.1377/hlthaff.2012.1061.
3. Hibbard, Judith H., et al. “Does Patient Activation Level Affect the Cancer Patient Journey?” Patient Education and Counseling, vol. 100, no. 7, 2017, pp. 1276–1279., doi:10.1016/j.pec.2017.03.019.
4. Vahdat, Shaghayegh et al. “Patient involvement in health care decision making: a review.” Iranian Red Crescent medical journal vol. 16,1 (2014): e12454. doi:10.5812/ircmj.12454