online patient education in advanced lung cancer:...

Elaine Hamarstrom, PhD; Tara Herrmann, PhD; Christine Carey, RPHMedscape Education, New York, NY

ONLINE PATIENT EDUCATION IN ADVANCED LUNG CANCER: EFFECT ON PATIENT/CAREGIVER KNOWLEDGE

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INTRODUCTION

Recent studies have found that patients with lung cancer consistently report suboptimal communication with their physicians which, in turn, can limit shared decision making and impair clinical outcomes. A study by Nelson and colleagues found that most patients with lung cancer felt that their physicians communicate only “a little bit” to “not at all” about their chances of a cure, treatment goals, and potential side effects.1 Yet, data from Lin et al have demonstrated that when patients understand each of these topics they are more likely to undergo treatment, indicating the value of communication and patient education.2 To address these gaps in clinician-patient communication and patient-caregiver education and engagement, a patient/caregiver-focused educational initiative comprising online modules was developed. Improvement in knowledge about treatment decisions and side effect management in patients with advanced non-small cell lung cancer (NSCLC) was measured.

After 9 months, a total of 8933 individuals had participated in the education. Of those, 43% had lung cancer or were caregivers of a person with the disease, and 65% were female. The average age of individuals who participated in any 1 of the 4 activities varied based on topic (Figure 1).

Significant post-participation improvements in knowledge were observed, including:

■ A 5% increase in comprehending that treatment-related side effects should be reported to their cancer care team both while on therapy and after completion of treatment with a cancer immunotherapy (Figure 2)

■ An 11% increase in understanding the mechanism of action associated with use of cancer immunotherapies in the treatment of lung cancer (Figure 3)

■ A 25% increase in recognizing that first response with cancer immunotherapies will take longer than chemotherapy (Figure 4)

■ A 30% increase in understanding that molecular testing is necessary in individuals with advanced NSCLC (adenocarcinoma), in order to select the most appropriate treatment (Figure 5)

References

1. Nelson, JE, Gay EB, Berman AR, et al. Patients rate physician communication about lung cancer. Cancer. 2011; 117(22): 5212–5220.

2. Lin JJ, Lake J, Wall MM, et al. Association of patient-provider communication domains with lung cancer treatment. J Thorac Oncol. 2014;9(9):1249-1254.

3. WebMD Education. 10 things you need to know about genes and lung cancer. http://education.webmd.com/viewarticle/848170. Accessed November 3, 2016.

4. WebMD Education. Work with your cancer care team to get the best results in lung cancer treatment. http://education.webmd.com/viewcollection/33515. Accessed November 3, 2016.

■ The initiative consisted of 4 educational activities3,4 that were made available on WebMD Education, a website dedicated to patient/caregiver learning. Activities 2 through 4 were posted simultaneously, while activity 1 was posted prior to the other 3 activities

■ The activities were written at the 6th to 8th grade reading level and designed to be understandable by the patient/caregiver audience. They contained actionable content that improves patients’ knowledge, skills, and capabilities needed to drive true attitude and behavior change

■ The activities launched online in between August and October, 2015, and data were collected through April, 2016

■ Each activity included demographic questions and a pre- and post-activity knowledge question, which was aligned with the learning objectives of the NSCLC activities

■ Participants were anonymous, but asked to provide basic demographic information on age group, ethnicity, gender, and whether they were a caregiver or a patient

■ Answers to each learner’s matching pre- and post-education outcomes questions were linked for comparative analysis of post-assessment responses relative to baseline self-assessment responses; in this way each learner served as his/her own control activities

FIGURE 1A. Demographics of Participants in Activity 1

FIGURE 1B. Participant Demographics for Activities 2 Through 4

FIGURE 2. Patient and Caregiver Comprehension of Cancer Immunotherapy Side Effects

FIGURE 3. Caregiver and Patient Awareness of Cancer Immunotherapy Mechanism of Action

QUESTION: Which side effects should you report to your healthcare provider?

Completers with NSCLC

(n=90, P <.5939)

Caregiver/Family Member

Completers (n=89, P <.3623)

Pre Post Pre Post

All side effects that happen during treatment 11% 16% 10% 7%

All side effects that happen during treatment and after treatment is done

76% 79% 85% 90%

Only severe side effects that happen 3 to 6 weeks after treatment starts

1% 2% 11% –

Only severe side effects that happen during treatment

12% 3% 3% 3%

QUESTION: How does immunotherapy work to fight your cancer?


(n=126, P =.8479)

Caregiver/Family Member

Completers (n=111, P =.0253)

Pre Post Pre Post

It gets your immune system to attack the cancer 87% 88% 79% 90%

It keeps cancer cells from making copies of themselves

6% 10% 15% 5%

It uses chemicals to poison the cancer cells 7% 2% 5% 4%

It uses heat to attack the cancer – 1% – 1%

FIGURE 4. Recognition of Time to Response to Cancer Immunotherapy

FIGURE 5. Understanding of Why Clinicians Perform Molecular Testing Prior to Selecting Treatment

QUESTION: Which is true about using immunotherapy to fight lung cancer?


(n=91, P =.0001)

Caregiver/Family Member Completers

(n=90, P =.0002)

Pre Post Pre Post

Immunotherapy attacks the immune system 16% 6% 23% 8%

Immunotherapy can take a while to work 67% 90% 61% 86%

Immunotherapy only works along with chemotherapy 8% 4% 9% 6%

Immunotherapy requires little to no testing 9% – 7% 1%

QUESTION: What is the main reason to test people with advanced lung adenocarcinoma for genetic changes before they start treatment?

Patients (n=738)

Caregivers (n=2,203)

Pre Post Pre Post

To find out if air pollution caused their lung cancer 5% 3% 2% 1%

To find out if they inherited their lung cancer 38% 25% 53% 24%

To see if certain treatments might help their disease 47% 66% 41% 71%

To see if their lung cancer is likely to go away without treatment

20% 6% 3% 4%

METHODS

ANALYSIS

RESULTS

Source of Support

The patient education activities were funded, in part, through independent educational grants from Genentech, AstraZeneca, Merck, and BMS.

For more information, contact Tara Herrmann, PhD, Director, Educational Strategy, Medscape, LLC, [email protected]

This study demonstrates that online patient education can be successful in improving familiarity with essential elements involved in the management of advanced lung cancer. Such targeted and focused digital education has the potential to empower, engage, and equip patients and their care partners with information needed for self-care condition management. However, it is also evident from the results that further education is warranted in several areas of NSCLC treatment and management in order to facilitate conversation and comfort between patients and their clinicians.

CONCLUSIONS

% of Learners % of Completers

American Indian or Alaska Native 1.9% 1.9%

Asian 4.8% 4.4%

Black or African-American 7.1% 5.6%

Hispanic or Latino 6.0% 4.6%

I prefer not to answer 6.6% 6.4%

Native Hawaiian or other Pacific Islander 0.5% 0.2%

White, non-Hispanic 73.0% 76.8%

ETHNICITYAmerican Indian or Alaska Native 1.0%

Asian 11.0%

Black or African-American 8.0%

Hispanic or Latino 5.0%

I prefer not to answer 9.0%

Native Hawaiian or other Pacific Islander 0.0%

White, non-Hispanic 65.0%

ETHNICITY

GENDER

GENDER

AGE

AGE

Learners, %Completers, %





11.0%

4.7%

18.2%

11.4%

22.1%

18.9%

21.4%

25.0%

27.4%

40.0%

Under 25

25 to 34

35 to 44

45 to 54

Over 54

2.0%

3.0%

9.0%

17.0%

69.0%

Under 25

25 to 34

35 to 44

45 to 54

Over 54



66.0%

74.0%

34.1%

26.0%

Female

Male

62.0%

38.0%

Female %

Male %

ACTIVITIES

ACTIVITY TITLE CONTENT FOCUS FORMAT

1

10 Things You Need to Know About Genes and Lung Cancer

Rationale for molecular testing of NSCLC tumors

5- to 7-minute text + graphics

2Your Immune System and Immunotherapy for NSCLC

Cancer immunotherapy mechanism of action


3How Do I Know If My Immunotherapy for NSCLC Is Working?

Response time to cancer immunotherapy


4

Protecting Your Body During Immunotherapy for Lung Cancer

Side effect management


online patient education in advanced lung cancer:...

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