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In the United States, lung cancer is the third most commonly diagnosed cancer and accounts for more deaths than breast, colon, and prostate cancers combined.1,2 As lung cancer continues to be commonly diagnosed, education is paramount to getting those with the disease and their caregivers connected to reputable sources of information for education and advocacy.
While education and advocacy can help improve outcomes for those with lung cancer, challenges exist regarding accessing and identifying reputable information. After oncologists and treatment teams, the Internet is the most popular place that patients and caregivers source their information regarding diagnosis and treatment for English and Spanish speakers.3-6
However, digital literacy and knowledge of Internet use — often impacted by age, education level, income level, geographic location, Internet speed and access, and language — can be barriers to getting the right information for many.3,5,6
As treatment teams are the most trusted source for information, reputable education resources should be provided by treatment centers to increase access to accurate information and self-education.3 Increases in anxiety and dissatisfaction with care occur at higher rates when health literacy is poor.7 Improved access and knowledge of accurate information can lead to more optimal health literacy, whereas “suboptimal health literacy is an independent risk for poor health outcomes.”7 These can include increased rates of hospitalization, not understanding the disease or its treatment, and ineffective communication overall.
Part of the issue with patients and caregivers locating information to improve health literacy and self-education on their own is the average person does not know what information is reputable, quality information.8 As treatment teams are vastly more knowledgeable about lung cancer’s diagnosis and treatments, have access to information the average consumer does not have access to, and are able to ascertain the quality of available information, treatment teams are in a good position to provide resources directly to patients and caregivers for reference and support.
An additional issue for people with lung cancer and their caregivers is lung cancer stigma. Lung cancer stigma has been found to directly correlate to delays in seeking support from medical professionals.9 Higher levels of depression, lower quality of life, higher symptom severity, distress, memory troubles, symptoms interfering with mood and interpersonal relationships, and overall decrease in life enjoyment are directly affected by lung cancer stigma.10,11
For older adults, stigma can lead to discomfort in disclosing their diagnosis, which is a barrier to overall advocacy for self and the lung cancer community at large.12 Stigma can be combatted through public awareness and patient-targeted interventions.9
When looking to make suggestions to people with lung cancer and their loved ones, there are a few helpful tips to keep in mind.
Who is accessing this information?
The person receiving the information from sources provided by the care team must be able to comprehend it based on their background, including age, education level, and language preference. The care team also should assess that patients’ and caregivers’ access to the Internet is reliable.
If someone does not have access to the Internet or other factors interfere with their ability to read and comprehend what is provided to them, more tailored information and print resources may need to be provided by their care team.
What are their educational and/or resource needs?
Patients and caregivers may come to their care team looking for resources and educational materials with specific goals in mind. One caregiver may be looking for information about treatment, whereas another may be looking for support services or information on how they can support their loved one. Education and resource needs are not one size fits all, so knowing what information is needed is key to providing the most pointed resources.
Where is the source coming from?
Knowing whether the website is specific to lung cancer, all cancers, or all diseases, and its focus is important. A national or international organization can have many focuses including research, statistics, mental health, or to provide other resources or types of assistance. The person seeking online information should know if the website is owned by a government organization, a professional organization, a non-profit, or other entity so they can view the information through this lens.
With the tips provided in mind, some lung cancer resources that can be provided to patients and caregivers, depending on their needs, include:
- American Cancer Society (www.cancer.org/cancer/types/lung-cancer.html)
- American Lung Association (www.lung.org/)
- CancerCare (www.cancercare.org)
- Go2 (https://go2.org)
- Global Lung Cancer Alliance (www.lungcancercoalition.org)
- Lung Cancer Research Foundation (www.lungcancerresearchfoundation.org)
- LUNGevity (www.lungevity.org)
- National Cancer Institute (NCI; www.cancer.gov/types/lung)
References
1. Centers for Disease Control and Prevention. Lung cancer statistics. CDC. Last reviewed June 8, 2023. Accessed November 15, 2023. https://www.cdc.gov/cancer/lung/statistics/index.htm
2. American Cancer Society. Key statistics for lung cancer. American Cancer Society. Last revised January 12, 2023. Accessed November 15, 2023. https://www.cancer.org/cancer/types/lung-cancer/about/key-statistics.html
3. Peterson MW, Fretz PC. Patient use of the Internet for information in a lung cancer clinic. Chest. 2023;123(2):452-457. doi:10.1378/chest.123.2.452
4. Dluhos-Sebesto C, Jethwa TE, Bertasi TGO, et al. Women’s Health Information Survey: common health concerns and trusted sources of health information among different populations of female patients. Womens Health Rep (New Rochelle). 2021;2(1):173-181. doi:10.1089/whr.2020.0118
5. Yıldırım S, Kazaz SN, Semiz HS, et al. An evaluation of the information sources of cancer patients’ relatives. A prospective survey. J Cancer Educ. 2019;34(5):913-919. https://doi.org/10.1007/s13187-018-1395-8
6. López-Gómez M, Ortega C, Suárez I, et al. Internet use by cancer patients: should oncologists ‘prescribe’ accurate web sites in combination with chemotherapy? A survey in a Spanish cohort. Ann Oncol. 2012;23(6):1579-1585. doi:10.1093/annonc/mdr532
7. Koay K, Schofield P, Jefford M. Importance of health literacy in oncology. Asia Pac J Clin Oncol. 2012;8(1):14-23. doi:10.1111/j.1743-7563.2012.01522.x
8. Eysenbach G. The impact of the Internet on cancer outcomes. CA Cancer J Clin. 2003;53(6):356-371. doi:10.3322/canjclin.53.6.356
9. Carter-Harris L, Hermann CP, Schreiber JA, Weaver MT, Rawl SM. Lung cancer stigma predicts timing of medical help-seeking behavior. Oncol Nurs Forum. 2014;41(3):E203-E210. doi:10.1188/14.ONF.E203-E210
10. Maguire R, Lewis L, Kotronoulas G, McPhelim J, Milroy R, Cataldo J. Lung cancer stigma: a concept with consequences for patients. Cancer Rep (Hoboken). 2019;2(5):e1201. doi:10.1002/cnr2.1201
11. Johnson LA, Schreier AM, Swanson M, Moye JP, Ridner SH. Stigma and quality of life in patients with advanced lung cancer. Oncol Nurs Forum. 2019;46(3):318-328. doi:10.1188/19.ONF.318-328
12. Price SN, Shen M, Rigney M, Ostroff JS, Hamann HA. Identifying barriers to advocacy among patients with lung cancer: the role of stigma-related interpersonal constraint. Oncol Nurs Forum. 2022;49(6):553-563. doi:10.1188/22.ONF.553-563
