Introduction
Chronic obstructive pulmonary disease (COPD) is a major cause of morbidity and mortality worldwide.1 Estimates show that COPD will become the third leading cause of death by 2030.2 The GOLD 2021 (Global Initiative for Chronic Obstructive Lung Disease) guidelines highlight the importance of disease education and self-management for individuals living with COPD.1 Patient education focuses mainly on transfer of knowledge, while self-management is defined as a set of actions taken by patients to improve skills and confidence in managing their health.3 Patients can learn to effectively manage their COPD through education about medication adherence, healthy behaviors, early identification of acute exacerbations, and communication with healthcare professionals. Patient education is a critical stepping stone to effective self-management and improving patient outcomes such as functional status, health-related quality of life (HRQL), hospitalization risk, and survival.4
COPD education is typically taught to patients at the point of care by clinical providers. It is recommended that patient education be provided at the time of diagnosis and continue through end-of-life care.5 However, healthcare providers face significant time constraints to teach patients about their disease at in-person visits.6 Pulmonary rehabilitation (PR) programs are another mode of education delivery, consisting of didactic education facilitated by a multidisciplinary team in a group setting over a course of 8–12 weeks.4 In PR, topics generally cover symptom management, smoking cessation, engagement in exercise, anxiety and depression, and identification of acute exacerbations.4 There is currently limited evidence to support how effective PR education is in improving COPD knowledge.4,7 Most importantly, PR is not accessible to the majority of patients with COPD who would benefit from it; thus, there is a need for accessible alternatives to deliver education.8
Novel strategies to complement current methods of education delivery by healthcare providers in clinic encounters or in PR are needed. We developed a pedometer-based, internet-mediated intervention to promote physical activity (PA) in COPD.9–12 Based on the Behavioral Theory of Self-Regulation, the intervention delivers individualized step-count goals, disease education, motivational messages, and an online community forum for social support.9–12 In three previous trials in persons with COPD, we have shown that this intervention is safe and engaging, while it improves HRQL and increases daily step count (PA) over the course of 3–6 months.9, 11, 12 In this retrospective secondary analysis, we examine whether there is an impact of our web-based physical activity intervention on COPD knowledge over 12 months. We hypothesized that in the subset of participants who received access to the web-based platform, COPD knowledge would increase over the 12-month intervention. We also assessed participant engagement with the website and educational content.
Methods
The primary results and details of the methods have been published.12 Briefly, participants were enrolled from outpatient pulmonary clinics at VA Boston and VA Birmingham Healthcare Systems between November 2015 and January 2019. Inclusion criteria included age greater than or equal to 40 years, clinical diagnosis of COPD [defined as either a ratio of forced expiratory volume in the first second (FEV1 ) to forced vital capacity (FVC) < 0.70 on screening spirometry, chest CT evidence of emphysema, or prior medical record documentation of FEV1/FVC ratio of < 0.7 and clinical evidence of COPD (defined as ≥ 10 pack-year cigarette smoking history, dyspnea, or on bronchodilators)], medical clearance from a healthcare provider, access to a computer with internet connection, a USB port or Bluetooth capability with a Windows XP/Vista/7/8/10/ Mac OSX 10.5, and a Fitbit Zip pedometer with >90% accuracy compared to manual counts during the 6-minute walk test (6MWT). We excluded those who had participated in a PR program at time of screening or within the previous 3 months (we included participants who ever had PR but not within last 3 months), had plans to enroll in a supervised exercise program, such as PR, in the next 6 months, had an average baseline step count of greater than or equal to 10,000 steps per day, were unable to collect at least 5 of 10 days of baseline step counts, had hypoxemia with oxygen saturation <85% at the end of the 6MWT at the baseline research visit. After participants were evaluated and deemed stable clinically or had their oxygen titrated, they could enroll in the study. Lastly, participants were excluded if they had unstable cardiovascular disease or congestive heart failure. We characterized baseline variables that could contribute to COPD education including self-reported internet ability, frequency of internet use, occurrence of an acute exacerbation prior to study enrollment, smoking status, and prior participation in PR. Additionally, during the study, we queried participants every 3 months about the occurrence of acute exacerbations and all-cause hospitalizations, as these would be additional opportunities for them to receive disease education.
At VA Boston and VA Birmingham, 153 participants with COPD were randomized to either the usual care group (written instructions and education to exercise) or the intervention group who were given access to the pedometer-based, internet-mediated intervention.12 In this secondary analysis, we examined participants assigned to the intervention group (N=72) with access to the internet-mediated education and followed for up to 12 months. These 72 participants are similar to the original cohort in socio-demographic characteristics as reported in the primary paper.12 Participants in the intervention group had access to a personalized website with weekly personalized step-count goals on the website and communicated over the telephone. Step-count goals were based on step-count data uploaded weekly and reflected the participant’s current level of walking. We used an increase in step-count goals as a measure of participant engagement in the intervention. The intervention website also contained educational tips, motivational messages, and an online community forum during the 12 months of the study. The intensive interventional phase lasted 6 months, followed by a maintenance intervention phase of 6 months. During the intensive interventional phase, participants were able to view new educational tips every other day and motivational messages every week. During the maintenance intervention phase, participants had no new educational materials but could review the content previously posted.
The educational tips (Figure 1) were succinct bullets of information with links to publicly available websites such as the American College of Chest Physicians. The tips provided general information about walking and health as well as information on how to solve problems (e.g., use inhaler before starting out on a walk), anticipate problems (e.g., walk an unknown course for the first time with someone you know), and build confidence to participate in a regular walking program (e.g., walk a specific route that you know you can complete without becoming short of breath). Examples of the educational tip topics included using breathing medicines for COPD to help with walking, breathing medications for COPD, controlled breathing exercises (Figure 2a), using shortness of breath to pace oneself, how to do diaphragmatic breathing, how to use the Borg scale, how to talk about breathlessness to others, why walking is good for exercise/mental health, the importance of hydration, eating healthy, where to exercise, how to deal with a walking injury, how to deal with chronic pain and exercise and stretching exercises.
Figure 1.
Example of educational tips on the website for participants in the intervention group.
Figure 2a.
Example of an educational tip, entitled “Controlled Breathing Exercises Can Help Manage Breathlessness,” on the website.
Motivational messages were designed to promote exercise self-efficacy and confidence and encourage adherence. Motivational messages covered topics such as how to overcome barriers and how to keep exercise fun. There were also tailored messages for those who smoked or who were on supplemental oxygen. Examples of the motivational topics included overcoming barriers, how to reward oneself (Figure 2b), how to keep walking fun, how to live a meaningful life with COPD, managing stress, believe that you can make a difference with your disease and taking charge of your health. Users viewed tips and messages on their study home page. There were over 90 educational tips and 26 motivational messages listed on the website for participants in the intervention group. At 6 and 12 months, participants completed a voluntary feedback questionnaire assessing use of the pedometer and website to understand engagement with the educational content.
Figure 2b.
Example of a motivational message, entitled “Rewarding Yourself,” on the website.
COPD knowledge was assessed using the Bristol COPD Knowledge Questionnaire (BCKQ)13 at baseline, 3, 6, 9, and 12 months. The 9-month assessment of the BCKQ was completed over the telephone. Thirteen topics assessed knowledge of epidemiology and physiology, aetiology, common symptoms, breathlessness, phlegm, chest infections/exacerbations, exercise, smoking, immunization, inhaled bronchodilators, antibiotics, oral steroids and inhaled steroids. Each of 13 topics contains five statements for a total of 65 statements.13 Participants were asked to answer whether each statement was ‘true’, ‘false’, or that they ‘did not know’. A correct answer contributed one point to the total score, while an incorrect answer or “don’t know” did not add to the total score. The total score was calculated as the percentage of correct answers, with a possible range from 0 to 100%. A higher score indicated greater knowledge.
For this secondary analysis we included only participants who were randomized to the internet-mediated intervention and completed a baseline BCKQ.13 Repeated measures ANOVA (PROC MIXED, SAS 9.4) (1) analyzed trends across the 12 months and (2) identified changes from baseline to 3, 6, 9, and 12 months. We focused our results on trends across the 12 months, and change from baseline to 12 months.
Results
A total of 72 participants were assigned to the pedometer-based, internet-mediated intervention, who were 93% males with mean±sd age of 69±7 years and FEV1 % predicted of 60±23% (Table 1). Over half were married (57%) and retired (60%), and the majority identified as white (92%). Approximately 79% of the participants stated that they used the internet every day and 32% identified as having advanced or expert internet ability. The cohort was highly educated with 44% completing some college or post high school education or training, and 26% completing a bachelor’s degree or higher. We assessed the number of participants who reported at least one ER/urgent care visits/hospitalizations event in the year prior to study entry versus the number of participants who experienced at least one event throughout the study period. At baseline, 21 participants reported at least one ER or urgent care visit for lung problems in the 12 months prior to study entry. A greater number of 32 participants over the course of the study (5 at 3 months, 11 at 6 months, 7 at 9 months, and 9 at 12 months) reported at least one ER or urgent care visit for lung problems. At baseline, 23 participants reported at least one hospitalization for lung problems in the 12 months prior to study entry. Similarly, a total of 22 participants over the course of the study (8 at 3 months, 3 at 6 months, 6 at 9 months and 5 at 12 months) reported at least one hospitalization for lung problems.
Table 1.
Participant Characteristics N=72.
| Characteristic | Mean ± SD or Count (% Frequency) |
|---|---|
| Age (years) | 69 ± 7 |
|
| |
| Sex | |
| Male | 67 (93%) |
| Female | 5 (7%) |
|
| |
| Race | |
| White | 66 (92%) |
| African American | 6 (8%) |
|
| |
| Marital Status | |
| Single, never married | 5 (6.9%) |
| Married or living in a marriage-like relationship | 41 (56.9%) |
| Separated, divorced, or annulled | 17 (23.6%) |
| Widowed | 9 (12.6%) |
|
| |
| Employment Status | |
| Full time job | 5 (7.0%) |
| Part time job | 7 (9.7%) |
| Not working due to disability or illness | 17 (23.6%) |
| Retired | 43 (59.7%) |
|
| |
| Education Level | |
| Did not complete high school | 1 (1.4%) |
| Completed high school | 20 (27.8%) |
| Completed some college | 32 (44.4%) |
| Completed a bachelor’s degree | 19 (26.4%) |
|
| |
| Internet use | |
| Never | 5 (6.9%) |
| Less than or equal to 4 times per month | 4 (5.6%) |
| Several times a week | 6 (8.3%) |
| Every day use | 57 (79.2%) |
|
| |
| Internet ability | |
| No ability | 3 (4.2%) |
| Basic ability | 15 (20.8%) |
| Moderate ability | 31 (43.1%) |
| Advanced ability | 15 (20.8%) |
| Expert ability | 8 (11.1%) |
|
| |
| Income | |
| Less than $15,000 | 7 (9.7%) |
| 15,000–29,999 | 22 (30.6%) |
| 30,000–49,999 | 12 (16.7%) |
| $50,000 or more | 31 (43.0%) |
|
| |
| Pack Years | 54 ± 34 |
|
| |
| FEV1 % predicted | 60±23% |
|
| |
| Current Oxygen Use | 17 (23.6%) |
|
| |
| Current Smokers | 14 (19.4%) |
|
| |
| Ever Participated in Pulmonary Rehabilitation | 9 (12.5%) |
|
| |
| Daily Step Counts | 3,252 ± 2,220 |
|
| |
| 6MWT Distance (meters) | 360 ± 93 |
FEV1 = forced expiratory volume in the first second; 6MWT = 6-Minute Walk Test
At study entry, BCKQ total score was 46.8±15.4 (Table 2). Among the 13 topics, participants scored the highest at baseline on smoking knowledge (65±17), aetiology (64±30), and vaccination (63±27). Participants scored the lowest on inhaled steroids (10±15), oral steroids (26±30), and inhaled bronchodilators (31±28). There was a trend toward a significant increase in BCKQ total score across the 12-month period (p=0.066) (Table 2). Across the 12 months, there were also significant trends for increases in knowledge about inhaled bronchodilators (p=0.011) and inhaled steroids (p=0.035). Finally, there was a significant trend for a decrease in knowledge about symptoms across the 12 months (p=0.033). At 3 or 6 months, the total scores and individual topic scores did not significantly change compared to baseline (Table 2). At 9 months, there were significant improvements in total BCKQ score (p=0.012), exercise (p=0.035), inhaled bronchodilators (p=0.013) and inhaled steroids (p=0.049). At 12 months, there were significant improvements in knowledge about exercise (p=0.004), vaccination (p=0.027), inhaled bronchodilators (p=0.002), and inhaled steroids (p=0.002). There was a significant decrease in knowledge related to COPD symptoms (p=0.033). Other topic scores did not significantly change at 12 months.
Table 2.
Percentage of correct answers for Bristol COPD Knowledge Questionnaire; Mean (SD)
| Baseline | 3 months | 6 months | 9 months | 12 months | p-value for trend | |
|---|---|---|---|---|---|---|
| N | 72 | 72 | 70 | 67 | 67 | |
| Total Score | 46.8 (15.4) | 48.9 (12.7) | 48.2 (14.7) | 50.4 (14.4)* p=0.012 |
48.2 (15.1) | 0.066 |
| Topic Scores | ||||||
| Epidemiology | 46.1 (22.9) | 45.3 (23.3) | 48.0 (22.7) | 48.4 (19.1) | 46.3 (20.7) | 0.799 |
| Aetiology | 64.4 (29.9) | 70.3 (26.4) | 64.3 (28.5) | 65.1 (28.8) | 60.0 (28.5) | 0.122 |
| Symptoms | 60.3 (27.2) | 57.8 (25.9) | 58.0 (27.3) | 63.3 (24.5) | 53.1(24.3)* p=0.033 |
0.005 |
| Breathlessness | 43.6 (23.1) | 43.9 (20.6) | 41.4 (26.0) | 46.0 (24.1) | 42.4 (23.5) | 0.302 |
| Phlegm | 53.9 (28.8) | 61.1 (30.0) | 56.6 (29.3) | 60.6 (27.4) | 57.9 (31.4) | 0.174 |
| Chest Infections/Exacerbations | 42.8 (27.9) | 42.8 (23.1) | 42.3 (25.6) | 48.1 (25.4) | 43.9 (23.7) | 0.543 |
| Exercise | 61.7 (27.8) | 65.8 (24.3) | 68.6 (25.6) | 69.6 (24.0)* p=0.035 |
69.3 (25.9)* p=0.004 |
0.067 |
| Smoking | 65.3 (17.4) | 66.4 (17.1) | 67.4 (12.4) | 64.8 (16.0) | 63.6 (17.0) | 0.342 |
| Vaccination | 62.5 (27.3) | 68.1 (21.9) | 66.6 (22.0) | 68.1 (24.4) | 67.5 (22.8)* p=0.027 |
0.223 |
| Inhaled bronchodilators | 31.4 (27.6) | 34.4 (27.1) | 34.0 (27.5) | 38.5 (27.9)* p=0.013 |
37.9 (26.3)* p=0.002 |
0.011 |
| Antibiotics | 40.0 (24.0) | 39.7 (23.4) | 40.0 (25.7) | 41.5 (27.0) | 42.7 (27.2) | 0.735 |
| Oral steroids | 26.4 (29.8) | 27.8 (29.8) | 25.7 (26.6) | 26.9 (27.1) | 26.6 (30.6) | 0.922 |
| Inhaled steroids | 9.7 (15.4) | 11.9 (16.3) | 14.3 (17.7) | 14.0 (16.7)* p=0.049 |
15.5 (17.7)* p=0.002 |
0.035 |
Significant (p<0.05) difference at time point compared to baseline.
The study feedback questionnaire was completed voluntarily by 48 (72%) participants at 12 months. Among those who completed the questionnaire, 14 (29%) endorsed that they learned helpful information when they used the online community forum, while (34) 71% reported not using the online forum. Twenty-five (52%) found that the educational tips and motivational messages were easy to understand, while 23 (48%) reported not viewing the educational tips and motivational messages. Within the month prior to the 12-month study visit, 38 (79%) participants viewed their step count graphs, 10 (21%) viewed the motivational messages, 15 (31%) viewed the educational tips and 7 (15%) viewed the community forum, while 9 (13%) participants did not use any of these website features.
Discussion
A pedometer-based, internet-mediated PA intervention can improve COPD knowledge over 12 months. This virtual modality appears particularly helpful for topics about which patients were least knowledgeable at baseline, such as antibiotics, inhaled bronchodilators, oral and inhaled steroids. Although over half the participants found the website content easy to understand, our findings suggest that further modifications to the intervention are needed to improve engagement with the website.
Our sample population had higher total BCKQ scores at baseline (47%) compared to those of the cohorts studied by Tymruk-Skoropad et al. (38%) and Lee et al. (28%).14,15 Nevertheless, there were overall similarities in topics for which participants were least and most knowledgeable. Participants who enrolled in our study, prior to using the internet-mediated intervention, were least knowledgeable about oral and inhaled steroids. Both Tymruk-Skoropad et al. and Lee et al. found that the knowledge about oral and inhaled steroids were among the lowest topic scores.14,15 Patients may have little knowledge about oral steroids because not all COPD participants are prescribed oral steroids. A recent COPD study found that less than half of patients with a recent acute exacerbation reported having antibiotics or oral steroids to take at home (rescue pack) if necessary.16 Patients may be less likely to know about their inhaled steroid use because it may be a part of a combination inhaler (Symbicort) instead of a inhaled steroid alone (Pulmicort). These results identify medication topics that require greater targeted education in persons with COPD. On the other hand, at baseline, participants were most knowledgeable about aetiology, smoking, vaccination, exercise and symptoms. Similarly, Tymruk-Skoropad et al. found that the highest topic scores were symptoms, phlegm, aetiology and smoking.14 Lee et al. reported that the highest topic scores were symptoms and exercise.15
There are limited studies that have assessed change in COPD knowledge in response to a PA/self-management intervention. Khan et al. created a self-management plan and examined the BCKQ scores at baseline and 6 months.16 Patients at baseline scored lowest on inhaled and oral steroids, which is consistent with our intervention.16 Similar to our study, Khan et al. observed an increase in total BCKQ score at 6 months.16 Extending these observations to 9 months we saw a significant increase in total BCKQ score compared to baseline. Furthermore, we included analyses looking at topic scores and saw a significant increase in COPD knowledge of exercise, inhaled bronchodilators, and inhaled steroids compared to baseline.
Few studies have evaluated COPD knowledge in response to a pulmonary rehabilitation program. After participating in COPD education as part of a PR program. Wong et al., observed that patients were most knowledgeable in topics regarding smoking and phlegm, and were least knowledgeable regarding oral steroids.17 Similarly, throughout our intervention we observed that participants were most knowledgeable about smoking. Phlegm was the second highest topic score from Wong et al. 17 The phlegm topic score did increase throughout our intervention but was not one of the highest topic scores at any time point during our intervention. Our intervention may not have focused on phlegm as well as this PR program education. Also, depending on the severity of COPD, participants may not be coughing up phlegm. Wong et al., participants who had undergone PR may have had more severe COPD compared to participants in our intervention. In our intervention, oral steroids remained as one of the lowest scoring topics throughout the intervention and did not significantly improve at any time point.
In our intervention we did not see improvements in total BCKQ score persist at 12 months. Despite seeing a significant improvement from baseline to 9 months, the overall total BCKQ score decreased at 12 months. There is no clear explanation for the significant increase in the total BCKQ score at 9 months. The 9-month visit questionnaires were mailed to the participants and completed by the participants on their own time, i.e., self-administered, after the telephone call. As shown in Table 2, the total BCKQ score at baseline (46.8) increases at the follow-up time points: 3 months (48.9), 6 months (48.2) 9 months (50.4) and 12 months (48.2). Although there was no significant increase in the total BCKQ score there were significant improvements for the topics of exercise, vaccination, inhaled bronchodilators, and inhaled steroids from baseline to 12 months. Overall, our technology-based delivery of COPD education significantly improved knowledge on certain topics at 12 months.
Results of our study identified areas for improvement in the educational content of our intervention. More focused education on topics such as inhaled and oral steroids, antibiotics, bronchodilator medicines, infections, phlegm, breathlessness and aetiology of COPD appears to be indicated. Notably, knowledge of COPD symptoms was the only topic to have a significant decrease in knowledge at 12 months. In the BCKQ, the topic of symptoms asks if swelling of the ankles, fatigue, wheezing, chest pain and weight loss are common in COPD.13 A reason for this decrease in knowledge could be that COPD can worsen over time, but participants may not know that the worsening of general symptoms such as fatigue and weight loss, for example, are related to COPD.
Topics of the BCKQ that might impact recognition of an exacerbation such as symptoms, breathlessness, phlegm, chest infections/exacerbations did not significantly improve from baseline to 12 months. A reason for this may be because our internet mediated intervention focused on physical activity and not education of an exacerbation. Future research should target education of exacerbations to improve COPD knowledge for online disease self-management.
Our internet-mediated intervention has potential to complement education currently delivered by general practitioner (GP) practices and PR programs. GPs can provide immediate advice at a yearly physical appointment or after an acute exacerbation. However, GP practices have a didactic approach to delivering education and do not typically see patients on a frequent basis.6 With our internet intervention, participants have full access to the website, at any time throughout the 12 months, that offers educational tips, motivational messages, and an online community forum. Participants can take on a more self-directed approach to learning and log on the website whenever they choose. On the other hand, a PR program lasts 8–12 weeks with two to three group meetings per week.4 The delivery of education in PR is structured and healthcare providers use PowerPoint slides or videos in large group settings.4 This delivery mode usually employs an episodic communication style.4 Learners’ attention drifts off after 15–20 minutes and they are less likely to pay attention to information covered in the middle of a lesson.4 Therefore, our internet-mediated self-management intervention can potentially offer an alternative strategy that may match learning styles that do not work well with the way education is currently delivered by healthcare providers and PR education.
A major strength of this secondary analysis is our repeated assessment of COPD knowledge with the BCKQ across 12 months. Our intervention also had a relatively large sample population size. Lastly, having medical records of participants readily available allowed accurate recording of adverse health events over the course of the study. Our study also has some limitations. We studied primarily white male Veterans who self-reported having predominantly advanced or expert internet ability. These specific characteristics limit the generalizability of our results. We also studied COPD knowledge using only one questionnaire. Knowledge can be assessed with a variety of different methods such as qualitative interviews and practical demonstrations. Participants could access website information at any point in time throughout the intervention, but we don’t know how often or for how long participants were logged into the study website. It would have been helpful to track how often participants navigated to the educational portions of the website. Finally, this secondary analysis needs additional research to confirm our findings and understand more about COPD knowledge for disease self-management.
Internet-mediated interventions may provide another option for education delivery and support for disease self-management. Self-management of their disease may be optimized for many patients with COPD using education delivered by their healthcare provider or in PR, while others may benefit from also using an internet-mediated delivery of education. Our internet-mediated intervention showed significant improvements for the topics of exercise, vaccination, inhaled bronchodilators, and inhaled steroids from baseline to 12 months. Moving forward, these results inform modifications to the educational content of the website to make the intervention better and target specific topics that did not significantly improve such as symptoms, breathlessness, smoking, and chest infections/exacerbations. We believe that researchers and clinicians should administer qualitative patient surveys to better understand what COPD patients want to learn about their own disease, and target education to these findings. Future research is needed to improve the delivery of education using technology-based interventions to optimize COPD knowledge for COPD self-management.
Highlights:
Education via a web-based intervention can improve COPD knowledge over 12 months.
Web-based interventions may be a beneficial strategy for delivering COPD education.
Certain COPD topics did not significantly change from baseline to 12 months.
Future interventions should examine these topics to improve education delivery.
Funding Source:
This study was supported by the United States Veterans Affairs Rehabilitation Research and Development Service through a Merit Award (O1150-R) to Dr. Moy. Dr. Robinson is supported by the National Heart, Lung, and Blood Institute (K12 HHL138049). The funders had no role in study design, data collection, and analysis, decision to publish, or preparation of the manuscript.
Footnotes
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Declarations of interest: None
Declaration of interests
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
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