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“Why are you telling me to exercise when I’m already short of breath?” – Helping patients with COPD develop a deeper understanding of symptom management
Karen M. Zhang, PhD
Supervised by Dr. Joe Pellizzari, C. Psych
A patient with chronic obstructive pulmonary disease (COPD) once described her illness experience as trying to breathe through a straw under a wet cloth that is covering the face. She was making a point that exercise is the last thing someone with shortness of breath would want to do. She even emphasized that the idea sounds absolutely ludicrous. This belief is not uncommon among patients, considering that many individuals with COPD perceive exercise to be aversive, and/or even impossible (Katajisto et al., 2012). However, from the perspective of healthcare professionals, it is undisputed that regular physical activity is highly effective for improving lung capacity and quality of life for COPD patients (Vestbo et al., 2013). There is well-established evidence that participation in exercise-based programs, such as respiratory rehabilitation, can help reduce illness exacerbations, minimize re-hospitalizations, and increase patients’ functioning and wellbeing. The question then is how do we transfer this knowledge to patients so that they understand and view regular exercise as important and vital for COPD symptom management?
Providing more effective delivery of patient education may be the most obvious solution for improving patient-provider communication and increasing patient knowledge around the need for exercise. Yet, little is known about the best way to optimize patient understanding. Part of the problem is that patient education interventions are often poorly described in the literature (Smith et al., 2011). In a systematic review of 360 studies evaluating the effectiveness of patient education for chronic disease management, only 27% of these studies described the pedagogical features in the interventions (Lagger, 2010). This suggests that before we can start loading COPD patients with educational materials, we need to first determine how we can explain the information so that it makes sense.
According to research in cognitive psychology, the depth at which an individual learns about a concept affects how well the information subsequently can be retrieved and used (Minda, 2015; Tulving, 2002). Shallow processing refers to learning at the surface level, typically in a rote manner. This type of processing enables acquisition of factual knowledge, which is associated with recalling facts verbatim (Mayer, 2002). In contrast, deep processing, based on knowledge of conceptual information about the subject matter is a more useful form of learning. Individuals who process information at a deep level (e.g., experts) can better apply their knowledge to solve problems (Chi et al., 1981; Devantier et al., 2009). These two types of information processing may make more sense when we think about how educators test students to determine those who really understood the course materials and apply it (deep knowledge) versus those who simply crammed the information the night before (factual knowledge). While both types of students can recall facts about the subject matter, only those who have processed the course information more deeply can generalize and use the information in different situations.
In a similar way, it could be that the depth to which COPD patients process information about their condition and its management might influence how they perceive the need for exercise. That is, patients who have a deeper conceptual knowledge of their COPD may be more likely to understand the seemingly counterintuitive information that increased physical activity can help with breathlessness. Recent research suggests that one way to help patients develop deeper understanding of their chronic condition and its management is to explicitly explain to them WHY a specific therapy or recommendation is effective.
Explanations about why an effect occurs or how things work are referred to as causal explanations in the cognitive science literature (Keil, 2011). This method of explaining a concept has been shown to facilitate deeper knowledge in a medical education context. In one study, students received either standard information about how to perform a percussive respiratory exam or standard information with additional causal information about why physical sounds occurred during the medical test (Goldszmidt et al., 2012). Results showed that those who received the causal explanations were better able to interpret the examination results. This study, along with others (Woods, Brooks & Norman, 2005), indicated that causal information helps to enhance deeper understanding and better application of medical information. Would this approach then be effective in a patient education context?
In our recent experimental study, we looked at whether integrating causal information into a health education booklet would help participants better understand illness management (Zhang et al., 2017). Participants received one of two versions (causal vs. non-causal) of a patient education booklet about a hypothetical disease. We used a hypothetical disease to control for any prior knowledge of the illness condition. Individuals in the causal explanation condition learned about how illness management behaviours, illness pathophysiology and symptom reduction are causally linked (see Figure 1). In other words, the causal information highlighted how health behaviours, such as exercise, are directly affecting their bodily functions and symptoms. The non-causal group also received the same information but it was presented in a segmented fashion. Our findings showed that individuals who received the causal information in the education booklet were better able to apply their knowledge to answer questions about managing symptom flare-up than the comparison group. It appears that causal information helps individuals link otherwise fragmented information; thereby, making the information more easily accessible to solve problems.
We are currently investigating the effectiveness of integrating causal information in a patient education session at cardiac rehabilitation. More specifically, the causal information highlights the cause-and-effect of behavioural intervention on cardiovascular pathophysiology (see Figure 2 for an example). Although the results are still pending, it has been observed clinically that patients perceive exercise recommendations to be more credible when they are told why they need to do it.
Considering the growing research evidence and clinical observations that explaining ‘why’ could improve understanding of illness management, the use of causal information might be a promising approach for COPD patient education. For example, it might be helpful for patients to understand how exercise can improve their lungs’ endurance and ability to use oxygen more efficiently. Drawing explicit connections between physical activity and the strengthening of limb muscles may help patients formulate a deeper understanding of the need for regular exercise. Additionally, causal information can be used to explain the rationale for different types of exercises (e.g., strengthening, aerobic and breathing exercises) and other COPD management strategies. The use of causal explanations can be easily adapted into a variety of modalities, including visual displays, written information and other multimedia formats to optimize patients’ attentiveness to the information.
It is also possible that a deeper understanding of COPD management may lead to better adherence to exercise recommendations. However, it is important to note that knowledge alone does not drive behavioural change (Lagger, 2010). The use of causal information can be combined with other patient education strategies, such interventions to leverage self-efficacy, to help COPD patients better engage in exercise programs.
Helping patient understand why exercise is important for illness management, rather than simply telling them what to do, can help improve patient-provider partnerships in COPD management. It is critical to acknowledge that COPD patients are experts of their experience and it can be difficult for them to adopt behaviours that seem to be counterintuitive. Providing more in depth information about how exercise affects pathophysiology may help patients make more informed decisions about their health care, and understand that exercise recommendations are not meant to subject them to more suffering. Viewing patients as capable learners is a step towards more patient-centred care.
Sample Causal Information
(presented on one page):
How Can I Manage the Symptoms and Complications of Alphabet Disease?
Feeling Tired (fatigued)
What to do: Consume 3-4 glasses of high carbohydrate drinks each day Why: Alphabet disease makes it difficult for your body to produce essential fats and carbohydrates that give you energy. Consuming high carbohydrate drinks will supply you with the energy you need.
Sample Non-Causal Information
(presented on separate pages):
What is Alphabet Disease?
Alphabet disease occurs when your liver has difficulty breaking down Alphabetin into vitamin ABC. Your body needs vitamin ABC to metabolize proteins, keep your immune system strong and produce fats and carbohydrates. As a result, individuals with Alphabet disease have a build up of proteins and not enough fats and carbohydrates.
What are the Symptoms and Complications?
Feeling tired (fatigued)
How Can I Manage My Alphabet Disease?
High Carbohydrate Drinks
Consume 3-4 glasses of natural juices and energy drinks each day.
Figure 1: This figure shows an example of how the learning material was presented in a causal and non-causal way. The dotted line represents information that was shown on a separate page in the booklet.
Figure 2: This is an example of an explanation that includes causal information about the linkage between flow-mediate dilatation, cardiac risk factors, symptoms and health behaviours.